FEBRUARY 2017 • ISSUE 268 • AMERICA’S AIDS MAGAZINE
BLACK HEALTH MATTERS • HRC’s Noël Gordon • Actor Maurice G. Smith • Racial Bias in Media • George M. Johnson on HIV Disparities
plus
• Tom Ammiano • Artist Bernard Perlin • Fiction by Chip Livingston • amfAR’s HIV Cure Research Institute
siedah
Garrett
THE SINGER/SONGWRITER WANTS TO MAKE THE WORLD A BETTER PLACE FOR PEOPLE LIVING WITH HIV/AIDS
WHAT IS GENVOYA®? GENVOYA is a 1-pill, once-a-day prescription medicine used to treat HIV-1 in people 12 years and older and weigh at least 77 lbs. It can either be used in people who are starting HIV-1 treatment and have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements. These include having an undetectable viral load (less than 50 copies/mL) for 6 months or more on their current HIV-1 treatment. GENVOYA combines 4 medicines into 1 pill taken once a day with food. GENVOYA is a complete HIV-1 treatment and should not be used with other HIV-1 medicines. GENVOYA does not cure HIV-1 or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking GENVOYA. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the EJCPEG QH UGZWCN EQPVCEV YKVJ DQF[ ƃ WKFU 0GXGT TGWUG QT UJCTG PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ ƃ WKFU QP VJGO
IMPORTANT SAFETY INFORMATION
medicines that should not be taken with GENVOYA. Do not start a new medicine without telling your healthcare provider. • The herbal supplement St. John’s wort. • Any other medicines to treat HIV-1 infection.
What are the other possible side effects of GENVOYA? Serious side effects of GENVOYA may also include: • Changes in body fat, which can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system may IGV UVTQPIGT CPF DGIKP VQ Ƃ IJV KPHGEVKQPU 6GNN [QWT JGCNVJECTG provider if you have any new symptoms after you start taking GENVOYA. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking GENVOYA. The most common side effect of GENVOYA is nausea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.
What is the most important information I should know about GENVOYA?
What should I tell my healthcare provider before taking GENVOYA?
GENVOYA may cause serious side effects:
• All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection.
• Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large and fatty. Symptoms of liver problems include your skin or the white part of your eyes turning yellow (jaundice); dark “tea-colored” urine; light-colored bowel movements (stools); loss of appetite; nausea; and/or pain, aching, or tenderness in the right side of your stomach area. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight, or have been taking GENVOYA for a long time. In some cases, lactic acidosis and serious liver problems have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • Worsening of hepatitis B (HBV) infection. GENVOYA is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking GENVOYA, your HBV may suddenly get worse. &Q PQV UVQR VCMKPI )'081;# YKVJQWV Ƃ TUV VCNMKPI VQ [QWT healthcare provider, as they will need to monitor your health.
Who should not take GENVOYA? Do not take GENVOYA if you take:
• All the medicines you take, including prescription and overthe-counter medicines, vitamins, and herbal supplements. Other medicines may affect how GENVOYA works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Ask your healthcare provider if it is safe to take GENVOYA with all of your other medicines. • If you take antacids. Take antacids at least 2 hours before or after you take GENVOYA. • If you are pregnant or plan to become pregnant. It is not known if GENVOYA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking GENVOYA. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see Important Facts about GENVOYA including Important Warnings on the following page.
• Certain prescription medicines for other conditions. It is important to ask your healthcare provider or pharmacist about
Ask your healthcare provider if GENVOYA is right for you, and visit GENVOYA.com to learn more.
GENVOYA does not cure HIV-1 or AIDS.
SHOW YOUR
POWER
Take care of what matters most—you. GENVOYA is a 1-pill, once-a-day complete HIV-1 treatment for people who are either new to treatment or people whose healthcare provider determines they can replace their current HIV-1 medicines with GENVOYA.
IMPORTANT FACTS (jen-VOY-uh)
This is only a brief summary of important information about GENVOYA and does not replace talking to your healthcare provider about your condition and your treatment.
MOST IMPORTANT INFORMATION ABOUT GENVOYA
POSSIBLE SIDE EFFECTS OF GENVOYA
GENVOYA® may cause serious side effects, including:
GENVOYA can cause serious side effects, including:
• Build-up of lactic acid in your blood (lactic acidosis), which is a serious medical emergency that can lead to death. Call your healthcare provider right away if you have any of these symptoms: feeling very weak or tired, unusual muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat.
Those in the “Most Important Information About GENVOYA” section.
• Severe liver problems, which in some cases can lead to death. Call your healthcare provider right away if you have any of these symptoms: your skin or the white part of your eyes turns yellow (jaundice); dark “tea-colored” urine; light-colored bowel movements (stools); loss of appetite; nausea; and/or pain, aching, or tenderness in the right side of your stomach area.
Changes in body fat. Changes in your immune system. New or worse kidney problems, including kidney failure. The most common side effect of GENVOYA is nausea. ;OLZL HYL UV[ HSS [OL WVZZPISL ZPKL LɈLJ[Z VM .,5=6@( ;LSS `V\Y OLHS[OJHYL provider right away if you have any new symptoms while taking GENVOYA. Your healthcare provider will need to do tests to monitor your health before and during treatment with GENVOYA.
Worsening of hepatitis B (HBV) infection. GENVOYA is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking GENVOYA. Do not stop taking GENVOYA ^P[OV\[ ÄYZ[ [HSRPUN [V `V\Y OLHS[OJHYL WYV]PKLY HZ [OL` ^PSS ULLK [V check your health regularly for several months.
BEFORE TAKING GENVOYA
You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight, or have been taking GENVOYA for a long time.
Have or have had any kidney or liver problems, including hepatitis infection.
Tell your healthcare provider if you:
Have any other medical condition. Are pregnant or plan to become pregnant. Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.
ABOUT GENVOYA
Tell your healthcare provider about all the medicines you take: GENVOYA is a prescription medicine used to treat HIV-1 in people 12 years of age and older and weigh at least 77 lbs who have never taken HIV-1 medicines before. GENVOYA can also be used to replace current HIV-1 medicines for some people who have an undetectable viral load (less than 50 copies/mL of virus in their blood), and have been on the same HIV-1 medicines for at least 6 months and have never failed HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements. • GENVOYA does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others. Do NOT take GENVOYA if you: Take a medicine that contains: alfuzosin (Uroxatral®), carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), cisapride (Propulsid®, Propulsid Quicksolv®), dihydroergotamine (D.H.E. 45®, Migranal®), ergotamine (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine ®, Wigrettes®), lovastatin (Advicor ®, Altoprev®, Mevacor ®), lurasidone (Latuda®), methylergonovine (Ergotrate ®, Methergine®), midazolam (when taken by mouth), phenobarbital (Luminal®), phenytoin (Dilantin®, Phenytek®), pimozide (Orap®), rifampin (Rifadin®, Rifamate®, Rifater ®, Rimactane ® ZPSKLUHÄS ^OLU \ZLK MVY lung problems (Revatio®), simvastatin (Simcor ®, Vytorin®, Zocor ®), or triazolam (Halcion®). Take the herbal supplement St. John’s wort. Take any other HIV-1 medicines at the same time.
Keep a list that includes all prescription and over-the-counter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. Ask your healthcare provider or pharmacist about medicines that should not be taken with GENVOYA.
HOW TO TAKE GENVOYA GENVOYA is a complete one pill, once a day HIV-1 medicine. Take GENVOYA with food.
GET MORE INFORMATION This is only a brief summary of important information about GENVOYA. Talk to your healthcare provider or pharmacist to learn more. Go to GENVOYA.com or call 1-800-GILEAD-5 If you need help paying for your medicine, visit GENVOYA.com for program information.
GENVOYA, the GENVOYA Logo, GILEAD, the GILEAD Logo, and LOVE WHAT’S INSIDE are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: December 2016 © 2017 Gilead Sciences, Inc. All rights reserved. GENC0126 01/17
“
We need to throw away the stigma and fear about HIV testing. It’s time we make HIV testing a part of our health routine. — Jay Ellis, Actor
”
I’M
DOING IT Testing for HIV
#DoingIt Testing is Fast, Free, and Confidential cdc.gov/DoingIt
c o n t e n t s February 2017
40 Cover Grammy-Winning Singer/ Songwriter Siedah Garrett Talks with A&U’s Dann Dulin About How a Cousin Lost to AIDS & the Stigma of the Early Days of the Epidemic Helped Strengthen Her Advocate’s Voice
Departments
Features 28 Gallery Michael Schreiber Archives Bernard Perlin’s Art, from WWII to the AIDS Crisis & Marriage Equality
6
Frontdesk
8
Mailbox
10
NewsBreak
32 Connecting the Dots California Legislator Tom Ammiano Brings His Comic Touch to AIDS & Healthcare Activism
16
Ruby’s Rap
20
Brave New World
36 Meet Mr. Showmanship Actor Maurice G. Smith Stands Up for the Health Needs of African-Americans
21
Just*in Time
25
Bright Lights, Small City
26
Our Story, Our Time
38 Equal Access HRC’s Noël Gordon Fights to End Health Disparities for People Living with HIV
lifeguide
46 Fiction Drinking You In by Chip Livingston cover photo by Sean Black
viewfinder
48
Destination: Cure
51
Hep Talk
52
Under Reported
53
The Culture of AIDS
54
Lifelines
56
Survival Guide
THIS PAGE INTENTIONALLY BLANK
A&U Frontdesk
More Than Ever
F
or the past week or so, as executive orders fly out of the Oval Office at a rapid pace, I’ve realized that now more than ever, we need the Madeleine Albrights, who defied the new administration’s Islamaphobia and anti-immigration/ anti-refugee policy by claiming she will register as a Muslim. More than ever we need the Dan Rathers, who has taken to social media to teach us about journalistic integrity and report on facts about Trump. More than ever we need the protestors, the ones who disrupted the Presidential inauguration in the name of HIV and health justice or the millions who marched around the world in the name of women’s equality. There are many reasons why we need access to our democratic right to speak up for what we believe in, not the least of which is making sure we have the option of affordable healthcare. I hope reason will prevail, as the administration moves toward dismantling the Affordable Care Act, or Obamacare. We shouldn’t rush to throw the baby out with the bathwater. Wherever you stand on the issue, there are some aspects of Obamacare that help everyone, no matter if you are privately insured or not. For example, the ACA made it unlawful for insurance providers to deny someone coverage based on a pre-existing condition, such as living with HIV. We have an array of lifesaving anti-HIV meds capable of suppressing the virus to undetectable and improving the health of people with HIV. And the consensus is that the quicker we halt the progression of HIV, the better our health outcomes will be. So the last thing we need is an extra hurdle, and an extra layer of stress, as we struggle to engage in care because we cannot find a private insurer to cover us, or cover us without a higher premium, or because Medicaid does not kick in until we have progressed to an AIDS diagnosis. In this era, where it looks like the Office of National AIDS Policy has been shuttered, we need to rely—more than ever—on the leadership of the AIDS community. At one time, we were the “Office of National AIDS Policy.” We fought for a faster pipeline, so that potentially lifesav-
AMERICA’S AIDS MAGAZINE issue 268 vol. 26 no. 2 February 2017 editorial offices: (518) 426-9010 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner
ing R&D was not stymied by an older, slower system. We protested against the legislation of stigma and hatred, as politicians jockeyed to see who could be the least compassionate. We created our own support networks. We became more literate about AIDS than your average physician. We were engaged in care. Not everyone living with AIDS participated in the movement, but enough of us did. I think it’s time we champion this collective approach—engaging in community care. More than ever we need to look out for one another. We need to advocate for ourselves, from our doctor’s offices to the Office of the President. This may be unfamiliar territory for some, but let me suggest that the first step of engaging in community care is engaging in ourselves. In the words of our cover story subject, Siedah Garrett, the Grammy-winning and Oscar-nominated singer/ songwriter who helped pen “The Man in the Mirror”: “If you want to make the world a better place / take a look at yourself and then make a change.” As A&U’s Dann Dulin finds out, Garrett is a firm believer in compassionate change on the personal and community level. So is Maurice G. Smith, an actor profiled in this issue who is eager to get the word out about how health issues like diabetes and HIV impact African-American communities. Our other interviewees, California legislator Tom Ammiano and the Human Rights Campaign’s Noël Gordon, are both striving to end health disparities and the social and economic drivers that fuel them. More than ever we cannot remain silent. More than ever we cannot let all that we have built be razed by careless or consciously callous policies. More than ever we need to protect the health we have been safeguarding, whether for a couple of years or for thirty years. More than ever we need to live.
DAVID WAGGONER
Managing Editor: Chael Needle Senior Editors: Dann Dulin, Sean Black Editor at Large: Chip Alfred Special Projects Editor: Lester Strong Literary Editor: Brent Calderwood Arts Editor: Alina Oswald Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Tyeshia Alston, Noël Alumit, T.J. Banks, Larry Buhl, Ruby Comer, Diane Goettel, Sally Hessney, George M. Johnson, John Francis Leonard, Angela Leroux-Lindsey, Dale Reynolds, Connie Rose, David Rosenberg, Corey Saucier, Stevie St. John, Justin B. Terry-Smith, Hank Trout, Patricia Nell Warren, Chuck Willman, Jeannie Wraight, Rob Zukowski Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Tim Courtney, Duane Cramer, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Michael Kerner, Tara Lessard, Tom McGovern, Nancy Perry, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011 In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 • Chris Companik, 1957–2012 Nancy Ellegate, 1959–2015 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 12210-2743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@ aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2017 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof. PostMaster: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 12210-2743, USA
Printed in USA • Visit our Web site at www.aumag.org
x o b l i ma Wow, isn’t Dita Von Teese a stunning-looking woman; I was just so taken by her looks [cover story, “Making Her Mark,” by Sean Black, December 2016]!
I must say that having Dita Von Teese on your cover was quite a pleasant sur-
DECEMBER 2016 • ISSUE 266 • AMERICA’S AIDS MAGAZINE
dita VON TEESE
BRINGS GOLDEN-ERA VERVE TO AIDS AWARENESS FOR A&U’S SILVER ANNIVERSARY
PRECIOUS METTLE • RON SIMMONS • BAILEY-BOUSHAY HOUSE • ADVOCATE MICHAEL ARNEGGER • PHOTOG DUANE MICHALS • PREVENTION ACCESS CAMPAIGN
I really think that she is reaching for the mantle of such stars as Marylin Monroe, Jayne Mansfield, even such idols and legends like Mae West. And who could forget Gypsy Rose Lee, the queen of burlesque? The only thing I don’t understand is why she is not a major movie star? I am definitely for her sex-positive views. And it is just wonderful that she works with such organizations as M•A•C Cosmetics, wich has raised over $400 million to fight AIDS. I like her comment in part: “We all
8
Don’t Stop Believin’ Congratulations on being published for twenty-five years [“Deeper Understanding,” by Chael Needle, December 2016]. That’s quite the achievement these days, with so many magazines going under. It’s the Internet that’s doing everyone in. I think the reason you’re still around is because you have a special message and you have stuck to that message consistently. AIDS is still here and we are not going to stop until AIDS has been stopped. Just keep at it no matter what. —Frank Mestner Culver City, California
“We all have a common purpose, a calling if you will, a need to tell the stories in order to remember that the common collective purpose is to end HIV/AIDS around the globe.”—Dita Von Teese The Streets of San Francisco After reading Second Acts by Michael Arnegger on the plight of the homeless in San Francisco, I just sat there and cried [Second Acts, December 2016]. How can this happen in the richest country in the world? How can people be relegated to the streets and alley ways of America? This is a crime against humanity and people should go to prison for this crime. I know that the article was about Michael and what happened to him because of AIDS, but this should not even happen to an animal. America, you are really shameless sometimes. —Brad Forte Silver Springs, Maryland
prise. A woman that is not only beautiful but highly intelligent. I think that this woman has quite a future. Burlesque used to be very popular in this country. Look how big a star Gypsy Rose Lee became— they even made a movie starring Natalie Wood as her. Then their was a stripper, I think her name was Sally Rand. She was known as the Fan Dancer. Anyway, the article was very entertaining. —Al Briton Cape May, New Jersey
Send e-mail to: mailbox@aumag.org Send letters to: Mailbox, A&U, 25 Monroe Street, Suite 205, Albany, NY 12210 Or click on “Mailbox” on our Web site’s home page: www.aumag.org Tweet Us @au_magazine Facebook: http://on.fb.me/AUFANPAGE All correspondence requires name, address, and daytime phone number for confirmation. Letters may be edited for length and clarity. A&U • FEBRUARY 2017
photo by Sean Black
That’s Entertainment!
have a common purpose, a calling if you will, a need to tell the stories in order to remember that the common collective purpose is to end HIV/ AIDS around the globe.” —Roger Infante Ann Arbor, Michigan
SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN
LONG BEFORE TAKEOFF. Proud Partner of the Elizabeth Taylor AIDS Foundation.
NEWSBREAK The Undetectables Recently, a new HIV treatment initiative was launched across seven health agencies in New York City—The Undetectables. The aim of The Undetectables is to provide individuals living with HIV with sustained engagement in care, including primary care, case management, and medication adherence support services, so that they may suppress the viral load in the blood to less than 50 copies/mL and keep it there. Beyond improved health outcomes, The Undetectables promote viral suppression as a mode of prevention; with a stable undetectable viral load for at least six months, an individual who is HIV-positive is highly unlikely to transmit the virus—the risk is neglible to nonexistent. Housing Works has championed this incentive-based and integrative model of care and has found its implementation to be successful in helping individuals, especially those who face barriers to care, such as poverty, homelessness, substance use and mental health issues, engagement in sex work, and stigma connected to HIV status, sexual orientation, and gender identity, to achieve and maintain viral suppression. The Undetectables initiative seeks to empower individuals living with HIV to stay on top of their health by becoming change agents within their own lives and in their communities. The website offers downloadable comic books that follow everyday people in their ongoing struggle to navigate their lives. But The Undetectables are not from the Marvel universe. Proclaims one tagline: “You don’t need superpowers to fight HIV. Heroes know it’s the fight that makes them stronger for themselves and their community.” For example, one edition follows the adventures of the Relentless Advocate, the Harm Reducer, the Gender Warrior, and the Suppressor. These Undetectables, drawn from all walks of life, bring their individual histories, experiences, and skill sets to issues facing positive individuals, like considering taking a break from meds, or fighting stigma. Support is a persistent theme. The website offers other resources, too, helping to connect individuals to care. Expansion of the integrated care model throughout New York City has been made possible by $1.5 million in contracts awarded to the seven agencies by the New York City Department of Health and Mental Hygiene. The seven agencies include AIDS Service Center of New York City, Brightpoint Health, Community Healthcare Network, Harlem United, Housing Works Community Healthcare, William F. Ryan Community Health Center, and Wyckoff Heights Medical Center. By the first year of implementation, 1,500 individuals living with HIV are estimated to receive integrated care via The Undetectables. For more information on The Undetectables, visit LiveUndetectable.org.
Implantable Prevention A new partnership between Intarcia Therapeutics, Inc., and the Bill & Melinda Gates Foundation seeks to step up HIV prevention in Sub-Saharan Africa and other countries heavily impacted by the epidemic. Intarcia, whose Medici Drug Delivery System and therapeutics will benefit from an investment of up to $140 million by the Bill & Melinda Gates Foundation, will work to develop the first once- or twice-yearly anti-HIV prophylactic, among other products. The company aims to create an HIV prophylactic tailored to the everyday needs of individuals while helping them to achieve adherence.
10
A&U • FEBRUARY 2017
NewsBreak Medici, a proprietary delivery system, stabilizes proteins, peptides, antibody fragments, and other highly potent small molecules at or above human body temperatures for up to three years or more, as well as uses a matchstick-sized osmotic mini-pump inserted subcutaneously that regulates appropriate amounts of the drug. According to a prepared release, “Once in place under the skin, water from the extracellular fluid enters the pump device at one end—by diffusing through a semi-permeable membrane directly into an osmotic engine—that expands to drive a piston at a controlled rate. This allows the drug within the pump to be released in a steady, consistent fashion at the other end of the device.” Intarcia’s pipeline of novel therapeutics extends beyond HIV. It recently submitted an NDA for ITCA 650, a twice-yearly therapy for type 2 diabetes using its delivery technology platform.
Saving the Affordable Care Act In light of the Republican-led Congress’s push to repeal the Affordable Care Act and replace it with another system, individuals and organizations concerned about maintaing the benefits of ACA have spoken out in protest. A coalition of HIV healthcare organizations, HIV Medicine Association (HIVMA), American Academy of HIV Medicine (AAHIVM), Association of Nurses in AIDS Care (ANAC), and the Ryan White Medical Providers Coalition, have gathered 950 medical professional signatories on a letter sent to Congressional members to advocate for the healthcare coverage needs and sustained improved health outcomes of individuals living with HIV/AIDS. “Prior to the Affordable Care Act, a majority of our patients were either denied health insurance coverage because of their condition or were unable to afford the extraordinary high cost of the coverage available to them. In most states, Medicaid coverage was available to patients only after they became sick and disabled by AIDS,” reads the letter, in part. “The ACA leveled the health care playing field by barring plans from denying coverage or charging higher premiums based on health status, setting minimum health coverage standards, and providing premium and cost sharing assistance. Importantly, it modernized the Medicaid program by expanding coverage to families and childless adults up to 138% of the federal poverty level regardless of disability status.” The letter urges lawmakers on Capitol Hill to not repeal without designing a plan to replace, one that does not disrupt care and is affordable; to sustain the federal commitment to the Medicaid program, so that states can keep pace with needs and address any fluctuation in needs; and to continue Medicaid expansion. A similar letter signed by more than 1,050 medical professionals was sent to President-elect Donald Trump. For more information, log on to: www.hivma.org.
PrEP Calculator The CDC currently provides pre-exposure prophylaxis (PrEP) guidelines to identify highest-risk candidates for the new HIV prevention tool. But are they specific enough to address the needs of HIV-negative gay, bisexual and men who have sex with men? A new study by Matthew R. Beymer, PhD, MPH et al., “Are Centers for Disease Control and Prevention Guidelines for Preexposure Prophylaxis Specific Enough? Formulation of a Personalized HIV Risk Score for Pre-Exposure Prophylaxis Initiation,” published in the January 2017 issue of Sexually Transmitted Diseases presents an analysis as an answer. That answer is no—the guidelines should be expanded in order to take into account more risk-contributive factors and identify a more specific range of Truvada as PrEP candidates. Researchers at the UCLA Fielding School of Public Health assessed PrEP candidacy based on more targeted criteria, using Syndemics Theory to select variables informed by sexual risk behavior, substance use, and psychosocial conditions, through a retrospective analysis of HIV-negative men who sought HIV/STI testing services at the Los Angeles LGBT Center between January 2009 and June 2014. At the time, clients were assessed for behaviorial risk. Individuals included in the present study were cisgender males who tested negative at their initial visit, reported having had sex with a man in the year prior to the visit, tested for HIV after the initial visit, and tested positive during their final testing visit. For the study, an HIV risk score was created based on biological, behavioral, and psychosocial variables and was compared to CDC guidelines. Researchers identified fifty-one percent of the individuals to be at risk (a risk score greater than or equal to 5) and a good candidate for PrEP. If this score had been used to guide the identification of candicacy, seventy-five percent of the HIV infections would have been averted, taking into account sufficient adherence to PrEP and its near-complete effectiveness. This new PrEP assessment model has been shown to be more reliable at figuring out who would seroconvert by taking into account partner-level variables that the CDC does not, like substance use, frequency of sexual contact, and other predictors. According to the article, researchers found that HIV infection at followup “was significantly associated with baseline race/ethnicity; self-reported history of chlamydia, gonorrhea, and/or syphilis; condom use during last receptive anal sex; same race/ethnicity of the last sex partner; number of sex partners in the last three months; IPV; methamphetamine use and nitrates use.” The Los Angeles LGBT Center has started to implement this new way of determining PrEP candidacy as part of the launch of its F*ck w/out Fear campaign. The sex-positive campaign seeks to increase awareness about PrEP, which has been shown to reduce the risk of HIV infection by up to ninety-nine percent, and, in particular, to engage those who are most at risk (gay and bisexual youth of color and transgender women) but also least likely to use or even know about PrEP (Latino and African-American youth). The campaign also seeks to dispel misconceptions about PrEP; many are unaware of the prevention tool’s safety and efficacy, as well as its affordability. A personalized risk score calculator for physicians, patients, and others is available online as part of the F*ck w/out Fear campaign at www.PrEPHere.org, as well as www.IsPrEPforMe.org. FEBRUARY 2017 • A&U
11
by Ruby Comer
M
adeline Kahn did not have kids, but she gave birth to many memorable characters. There was the ditzy control freak Eunice Burns in What’s Up, Doc?, the sex-starved socialite Elizabeth in Young Frankenstein, the opportunistic vamp Trixie Delight in Paper Moon, and the sexy vixen Lili von Shtupp in Blazing Saddles. For us fans who can’t get enough of the funny lady, William V. (stands for Vincent) Madison has written the quintessential biography, Madeline Kahn: Being The Music, A Life. (Recently out in paperback, it includes a new chapter!) In his work, one item you’ll learn is that not only was she sensitive and insecure about her looks, but Madeline never understood why people thought she was funny. In fact, after her debut in What’s Up, Doc?, she threw herself into therapy. You see, Madeline was a master at creating character. She would approach each role as if they were real persons, creating a backstory and a history, shooting from the heart. As we all know, comedy has its roots in tragedy! She was a dedicated actor and a classically trained singer who strived for excellence in every performance. There’s one scene I find hysterical
Madeline Kahn and director Mel Brooks
16
from Peter Bogdanovich’s raging comedy, What’s Up, Doc? Eunice Burns cannot enter the musicology convention hall because Judy Maxwell (Barbra Streisand) has already taken her name tag. Eunice frantically bursts through the doors as attendants follow her. Once they reach the table where her fiancé Howard Bannister (Ryan O‘Neal) sits alongside Judy, Eunice pleads with him, “Tell him who I am! Tell him who I am!” Howard replies, “I never saw her before in my life.” The attendants clutch Eunice under her armpits, dragging the screaming woman out at a ninety-degree angle. All the while, her floppy flipped-up dishwater blonde wig is cockeyed and her white heels zigzag back and forth across the linoleum floor leaving heavy marks. Madeline is at her apex! Madeline died of ovarian cancer in 1999, but thanks to social media, she will always be around. For a delicious treat, watch a YouTube video of Madeline singing “You’d Be Surprised,” by Irving Berlin, which she sang at his 100th-birthday celebration in 1988. Madeline not only cared about her career, but also about those who were living with AIDS. She made donations and dedicated performances to AIDS charities such as Gay Men’s Health Crisis and Broadway Cares. Like Madeline, the epidemic touched William Madison as well. A native Texan, he lost many friends to AIDS. The author has a varied career:
a radio producer, a television writer, a gopher on Broadway, a stage manager and costume designer off-off Broadway, opera critic, secretary, reporter, actor, teacher, production assistant (for 1986 Broadway musical, Rags) and…a go-go boy. Okay, I must hear more about that! William graduated from Brown University and Columbia’s School of Writing, and his former bosses include Dan Rather, Connie Chung, and Teresa Stratas. William is currently busy with the memoir of Jarmila Novotná, the Czech soprano (1907–94), which was a bestseller in the Czech Republic. He’s editing the book for the American audience. Through the years, Mr. Madison has supported Broadway Cares and other AIDS organizations as well. Since Madeline died of ovarian cancer, the author is donating a portion of his book sales to the Ovarian Cancer Research Fund Alliance. William resides in upper Manhattan’s Inwood section, and today he suggests getting together for Sunday brunch at La Mirabelle, a restaurant on West 86th Street A&U • FEBRUARY 2017
Ruby illustration by Davidd Batalon; Madison photo by Catherine Karnow; Kahn photo courtesy the collection of Jeffrey Kahn
Wil iam Madison
Ruby Comer: [As the host seats us, I ask] Any particular reason you wanted to meet at this eatery, Bill? William Madison: The owners and staff greet me as a long-lost relative and never, ever correct my French grammar. Ah, ha. You’re too much. [He grins.] I know you started the Madeline biography while you lived in Paris, it took about seven years to write, and you interviewed about 120 people. What an accomplishment—see, I did my homework. So what made you want to write about Madeline? For one thing, nobody else had written her story. For another, her background was a good match for my own: I’ve got a long history with opera, worked on one Broadway musical and done lots of other theater, and she and I worked at CBS at the same time. I haven’t done movies, but hey, I’m willing. [He winks then chomps on his endive salad.] I’d always enjoyed her work, and I sensed, rightly, that we were kindred spirits and that she’d be good company— though I had no idea we’d spend so many years together.
Oh for corn’s sake. Lucky you! Before we veer off any further, I need to know about this go-go boy stint. Do tell. [I take a helping of my Salade Caesar.] Well…the scheduled dancer cancelled. I volunteered. I thought, “Isn’t this why I go to the gym?” I learned immediately that it’s harder than it looks, especially when one wears progressive lenses. People wouldn’t move their drinks off the bar, so I didn’t know where to put my feet. I made a grand total of $3, not including the $200 one customer offered me if I’d let him service me. “One career change per night is my limit,” I replied. I was just shy of my fortieth birthday at the time. Bravo. At forty! Kudos. Tell me, when did you first hear about the epidemic? I was an undergraduate at Brown University. Within about a year of graduation, my first classmate died. How many people have you lost, Bill? It’s difficult and somewhat troubling to count them all. I don’t want to make statistics of them. [He pauses, glancing briefly out the window onto 86th street and the passersby.] There are two losses that I still feel keenly, perhaps more so than others. Brian Greenbaum, a friend from college who was the true trailblazer of our circle. From coming out to moving to Europe, to a thousand less-significant milestones, there’s virtually nothing I’ve done that Brian didn’t do first.
Seems like a lovely guy…. Another was Chris Gene Wilder and Kahn in Young Frankenstein Blazakis, the former Galanos executive who blew the whistle on Nancy I guess you’ve become quite good Reagan’s tax fraud. Already Chris was friends! Say, what took you to France? fighting the disease, and her supporters After I was laid off from the staff of and many journalists were quick to link Opera News, I focused on writing novels. his sexuality to his quest to hold Mrs. An ex-lover, who’s French, suggested Reagan accountable. If she’d stolen that I could do that work just as easily sports cars, she might have gone to jail, in France as in New York, and living but designer gowns? People saw that as in France was something I’d always “faggot nonsense.” dreamed of. I moved in November Chris was a man of great courage. Dan 2004—by sheer coincidence on the day Rather called him a Frank Capra hero withafter George W. Bush was elected.
18
out the happy ending to his story. Chris and his partner were like big brothers to me, encouraging my explorations of music and city life. My Lordie, what wonderful friends you had. When the epidemic hit, you were just beginning to “sow your oats.” I guess you were about twenty years-old. How did that affect you? The combination of the epidemic and my own uncertain sexuality nearly immobilized me. I was terrified of acting on my urges with other men; whenever I did act, I behaved like a jerk afterward— the worst kind of denial. I did have rewarding relationships with three women, all of whom are still my friends and very dear to me. There were also long periods of celibacy. But it wasn’t until I worked on Rags that I had an affair with another man, to whom I could say—and wanted to say—“I love you.” [He swallows then adds] Naturally, we broke up after about three months, but it was a start. Bill, when did you first get tested? I didn’t get tested until the 1990s, probably from a misguided sense that having safe sex meant that I didn’t need to know my status. It took about a week to get the results, and while I waited I was depressed, anxious, fearful. I wrote a radio essay for my boss about the experience, realizing that other people might learn something, and others might feel better knowing someone else had gone through the same thing. continued on page 54 A&U • FEBRUARY 2017
Kahn photo courtesy the collection of Jeffrey Kahn
at Columbus Avenue. I’m there! They even have a singer waitress he tells me….
viewfinder
Be Not Ashamed
raising a glass to the ones we sometimes hide
Shout out to all the blue-eyed White boys who caught their virus in a backroom from an invisible donor or three; or five; or ten—high on crystal meth; flying above the sky with your head pushed down at a forty-five degree angle, dressed in leather and steel and covered in the sweat of a hundred men, and with the bliss of a hundred and one dripping like tears from between your legs; perfect and pure and creamy white. I salute you! *** Be not ashamed. We are all Flawed, Broken and Imperfect. But beautiful you will be, and beautiful you are.... Shout out to all the pretty girls who caught their virus because it pays more—who got pregnant in the fifth grade; who loved men who didn’t love them: Men who lied and beat them. This is to the gorgeous girls with curly hair who on weeknights painted their faces and wore pink bras, and did whatever needed to be done to get the bills paid; because the baby has got to eat. This one is for you!
ones we blame and shame, and condemn and say they did it wrong. Shout out to the ostracized, and put upon, and locked away because their story doesn’t sound so sweet.... Shout out to the folks who don’t know how they got it. Or if they gave it. Shout out to Tiger Mandingo sitting alone in his cell.... Keep you head up my friend. You are our scapegoats and our scary stories, and the lambs we sacrifice. Be not ashamed. We are all Flawed, Broken, and Imperfect. But beautiful you will be and beautiful you are.... In a year I have gone from a monogamous church going upstanding advocate for sex positivity, to a finely worded Craigslist ad.... A lot can happen in a year. Things go in cycles...and I am sitting in my apartment dressed in high socks and a jock strap contemplating “My place in the world” and “What it all means?” as I wait for a stranger to knock on my door.
Be not ashamed. And that has to be okay.... Shout out to my closet case brothers on the DL who are doing their best to be a “good man”; who work 9 to 5 and overtime; and who treat their woman like a queen—For the Bi-guys who raise a family, and build a home, and do everything the world says they should.... Who caught the virus in only twenty minutes of hunger that singular time when they just couldn’t hold out anymore. Slow clap for you sweet man, because I know that must be hard. Be not ashamed. Shout out to the bad boys and the hookers and the whores and losers and the addicts and the kids with poor impulse control. Shout the
20
You know...before I had prescription for Adderall, and everything was all above board and legal and medically affirmed, I was an addict. I shot up meth in dirty bathrooms and had sex with strange men in jockstraps. And I was beautiful then and I am beautiful now. Just because I have a beautiful white-walled apartment in Hollywood facing the hills, with a window the size of the Grand Canyon and hard wood floors, and 1,800-thread count sheets... and I’m no longer fraying at the edges; it doesn’t mean that I am any more beautiful than the addict reusing needles on the street.... Because we are all in this together. And
it doesn’t matter how you got it or how you keep the demons back.... Because life is hard and winding and strange and sometime we get lost in it. *** I have a friend coming in fifteen minutes.... He is blond and green eyed with skin as pale as a White boy.... And I am going to call him “Beautiful...” and he is going to call me “Beautiful...” and we will be beautiful together between the sheets for a while.... Because I just need to be beautiful today. And I am not ashamed of that. Shout out to the people who are not perfect, who just want to be beautiful for a moment, who caught their virus because life is a shiny unicycle with no brakes and no handlebars, and sometimes they mess up. Be not ashamed. Shout out to you! We are all flawed, broken, and imperfect. Beautiful you will be and beautiful you are. Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel. His musings and wanderings on Love, Life, and Nonsense can be found at www.justwords.tumblr.com. A&U • FEBRUARY 2017
illustration by Timothy J. Haines
B
e not ashamed. We are all flawed, broken, and imperfect. But beautiful you will be, and beautiful you are...
In this column, I’ve decided to address slut-shaming—trying to make someone feel bad for what is perceived as having “too much” sex or the “wrong” kind of sex. Individuals living with HIV have often been slut-shamed—according to some, we’re not even supposed to have any kind of sex! Slut-shaming is wrong in any context, but it becomes nonsensical in an era of Treatment as Prevention. I have HIV and, thanks to anti-HIV meds, undetectable, and, if you don’t live under a rock, you might have heard of pre-exposure prophylaxis (PrEP), a prevention tool for negative individuals—both fall under Treatment as Prevention, using medications to stop the transmission of HIV. If you’re undetectable you have suppressed your viral load on antiretroviral medication and have long (or at least for six months) been undetectable, meaning there is a negligible, and some say nonexistent, risk of transmitting HIV, you and your partners may decide to not use condoms. If you are negative, you may decide to use PrEP as a form of HIV prevention, with or without a condom. I was on a social media application (no, I’m not telling which one) where one of the statuses you could chose to support was “Treatment as Prevention” and I did. Some time later, I was approached by someone that had not-so-nice things to say to me because of my support of PrEP. I heard things like “You’re a slut; only a whore would condone raw sex; have fun at the clinic.” After all of this negative, slut-shaming energy, I had to take a couple of deep breaths and turn it into something positive. So, I have decided that I would come up with a list for Treatment and Prevention supporters who often encounter slut-shaming in 2017. Why? Because slut shaming directly contributes to stigma. Being FEBRUARY 2017 • A&U
stigmatized can contribute to the lowering of self-esteem, which can also make people fearful to go on preventative treatment and to go on HIV medications if they have been infected with HIV. People need to have supportive networks, not stigmatizing ones, especially within their own demographic. The LGBT people and HIV community should be uplifting one another because we have enough people misunderstanding and hating us. So, what can we do? There is a block button. No matter what social media you’re on, it doesn’t give anyone the right to be an asshole. Just block them. There will always be someone who is going to find you attractive—why are you wasting time with someone that is not going to give you the love you want? Unfriending is not unlawful. Look, millions of people are on Facebook and you don’t necessarily have to talk to them. There are PrEP discussion groups that you can be a part for support and, trust me, they’re in your corner. Educate them: Yes, we must make sure that we leave space to educate those of us who judge everyone else’s sexual lives. Which gives room for a lot of assholes to teach. But, with that being said, I sometimes leave a link to a website to educate on PrEP and new, innovative prevention measures. Slut-shame them right back: One of the biggest controversies for people wanting PrEP was being called sluts and whores because they were being open about looking for the love that they wanted. Usually people who have huge opinions on the sexual lives for others, have their own sexual proclivities that they don’t want to share with others. (No mentioning certain politicians here.)
Oh, I’m a whore—why do you give a fuck? I always ask people who judge my sexual appetites: “Do you want me sexually? If no, then fuck off….Next….” The real question is, why do they care? So I’m a Truvada Whore?! No, seriously, I’m a Truvada Whore and I own it: There are people that own it, and that is okay. The term “Truvada Whore,” once meant to stigmatize, was reclaimed; it comes from a movement of empowerment. It may mean that “I’m HIV-negative but for my HIV prophylaxis I’m going on PrEP”; or “I’m HIV-positive and I would like my sexual partners to be open to or only use PrEP as a HIV prophylaxis.” Some people have a problem with being called a whore and that is fine, too. We all own parts of our sexual proclivities, but the important thing is we do not judge others for their own or by a standard we have no business putting on others. Walk the fuck away. No, seriously, there is more than one out there. What I mean is that you have to have the empowerment in yourself to just walk away. Sometimes when approached by someone who only uses condoms, I give a compliment and say, “I never did mind about the little things.” Then look down in between their legs and walk away. All you have to know is that it is their choice. Nevemind about the insulting comment I just made in last tip; just say, “Okay thanks, but I’m looking for something different.” They don’t have to accept your stance, but they do have to respect it. PrEP is an acceptable form of HIV prophylaxis, but so is a condom. Your sex life is your own and so is theirs, so fuck’em…or not. ◊
21
photo by Don Harris © Don Harris Photographics, LLC. all rights reserved
Justin B. Terry-Smith, MPH, has been fighting the good fight since 1999. He’s garnered recognition and awards for his work, but he’s more concerned about looking for new ways to transform society for the better than resting on his laurels. He started up in gay rights and HIV activism in 2005, published an HIV-themed children’s book, I Have A Secret (Creative House Press) in 2011, and created his own award-winning video blog called, “Justin’s HIV Journal”: justinshivjournal. blogspot.com. Presently, he is working toward his doctorate in public health. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at jsmithco98@hotmail.com.
YOU MATTER AND SO DOES YOUR HEALTH
That’s why starting and staying on HIV-1 treatment is so important.
What is DESCOVY ? ®
DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people 12 [GCTU CPF QNFGT &'5%18; KU PQV HQT WUG VQ JGNR TGFWEG VJG TKUM QH IGVVKPI *+8 KPHGEVKQP &'5%18; EQODKPGU medicines into 1 pill taken once a day. Because DESCOVY D[ KVUGNH KU PQV C EQORNGVG VTGCVOGPV HQT *+8 KV OWUV DG used together with other HIV-1 medicines.
DESCOVY does not cure HIV-1 infection or AIDS. 6Q EQPVTQN *+8 KPHGEVKQP CPF FGETGCUG *+8 TGNCVGF illnesses, you must keep taking DESCOVY. Ask your JGCNVJECTG RTQXKFGT KH [QW JCXG SWGUVKQPU CDQWV JQY VQ TGFWEG VJG TKUM QH RCUUKPI *+8 VQ QVJGTU #NYC[U RTCEVKEG UCHGT UGZ CPF WUG EQPFQOU VQ NQYGT VJG EJCPEG QH UGZWCN EQPVCEV YKVJ DQF[ ƃ WKFU 0GXGT TGWUG QT UJCTG PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ ƃ WKFU QP VJGO
What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: • •
•
•
Changes in body fat, which can happen in people taking HIV-1 medicines.
Changes in your immune system. Your immune system OC[ IGV UVTQPIGT CPF DGIKP VQ Æ‚ IJV KPHGEVKQPU 6GNN [QWT JGCNVJECTG RTQXKFGT KH [QW JCXG CP[ PGY U[ORVQOU CHVGT you start taking DESCOVY. Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you VQ UVQR VCMKPI &'5%18; KH [QW FGXGNQR PGY QT YQTUG kidney problems. Bone problems, UWEJ CU DQPG RCKP UQHVGPKPI QT VJKPPKPI YJKEJ OC[ NGCF VQ HTCEVWTGU ;QWT JGCNVJECTG provider may do tests to check your bones.
IMPORTANT SAFETY INFORMATION
The most common side effect QH &'5%18; KU PCWUGC 6GNN [QWT JGCNVJECTG RTQXKFGT KH [QW JCXG CP[ UKFG GHHGEVU that bother you or don’t go away.
DESCOVY may cause serious side effects:
What should I tell my healthcare provider before taking DESCOVY?
What is the most important information I should know about DESCOVY? •
•
•
•
Buildup of an acid in your blood (lactic acidosis), which is C UGTKQWU OGFKECN GOGTIGPE[ 5[ORVQOU QH NCEVKE CEKFQUKU KPENWFG HGGNKPI XGT[ YGCM QT VKTGF WPWUWCN OWUENG RCKP trouble breathing, stomach pain with nausea or vomiting, HGGNKPI EQNF GURGEKCNN[ KP [QWT CTOU CPF NGIU HGGNKPI FK\\[ QT NKIJVJGCFGF CPF QT C HCUV QT KTTGIWNCT JGCTVDGCV
Serious liver problems. 6JG NKXGT OC[ DGEQOG NCTIG CPF HCVV[ 5[ORVQOU QH NKXGT RTQDNGOU KPENWFG [QWT UMKP QT VJG YJKVG RCTV QH [QWT G[GU VWTPKPI [GNNQY LCWPFKEG FCTM pVGC EQNQTGFq WTKPG NKIJV EQNQTGF DQYGN OQXGOGPVU
UVQQNU NQUU QH CRRGVKVG PCWUGC CPF QT RCKP CEJKPI QT VGPFGTPGUU QP VJG TKIJV UKFG QH [QWT UVQOCEJ CTGC You may be more likely to get lactic acidosis or serious liver problems KH [QW CTG HGOCNG XGT[ QXGTYGKIJV QT JCXG DGGP VCMKPI &'5%18; HQT C NQPI time. In some cases, lactic acidosis and serious liver problems have led to death. Call your healthcare provider TKIJV CYC[ KH [QW JCXG CP[ U[ORVQOU QH VJGUG EQPFKVKQPU Worsening of hepatitis B (HBV) infection. DESCOVY KU PQV CRRTQXGF VQ VTGCV *$8 +H [QW JCXG DQVJ *+8 CPF HBV and stop taking DESCOVY, your HBV may suddenly IGV YQTUG &Q PQV UVQR VCMKPI &'5%18; YKVJQWV Æ‚ TUV talking to your healthcare provider, as they will need to monitor your health.
•
•
•
•
All your health problems. Be sure to tell your healthcare RTQXKFGT KH [QW JCXG QT JCXG JCF CP[ MKFPG[ DQPG QT NKXGT RTQDNGOU KPENWFKPI JGRCVKVKU XKTWU KPHGEVKQP All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal UWRRNGOGPVU 1VJGT OGFKEKPGU OC[ CHHGEV JQY &'5%18; YQTMU -GGR C NKUV QH CNN [QWT OGFKEKPGU CPF show it to your healthcare provider and pharmacist. Ask [QWT JGCNVJECTG RTQXKFGT KH KV KU UCHG VQ VCMG &'5%18; YKVJ CNN QH [QWT QVJGT OGFKEKPGU If you are pregnant or plan to become pregnant. It is PQV MPQYP KH &'5%18; ECP JCTO [QWT WPDQTP DCD[ 6GNN [QWT JGCNVJECTG RTQXKFGT KH [QW DGEQOG RTGIPCPV while taking DESCOVY. If you are breastfeeding PWTUKPI QT RNCP VQ DTGCUVHGGF &Q PQV DTGCUVHGGF *+8 ECP DG RCUUGF VQ VJG DCD[ KP breast milk.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/ medwatch, or call 1-800-FDA-1088. Please see Important Facts about DESCOVY, including important warnings, on the following page.
Ask your healthcare provider if an HIV-1 treatment that contains DESCOVY® is right for you.
IMPORTANT FACTS (des-KOH-vee)
This is only a brief summary of important information about DESCOVY® and does not replace talking to your healthcare provider about your condition and your treatment.
MOST IMPORTANT INFORMATION ABOUT DESCOVY
POSSIBLE SIDE EFFECTS OF DESCOVY
DESCOVY may cause serious side effects, including:
DESCOVY can cause serious side effects, including:
Buildup of lactic acid in your blood (lactic acidosis), which is a serious medical emergency that can lead to death. Call your healthcare provider right away if you have any of these symptoms: feeling very weak or tired, unusual muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat.
Those in the “Most Important Information About DESCOVY” section. Changes in body fat. Changes in your immune system. New or worse kidney problems, including kidney failure. Bone problems.
Severe liver problems, which in some cases can lead to death. Call your healthcare provider right away if you have any of these symptoms: your skin or the white part of your eyes turns yellow (jaundice); dark “tea-colored” urine; loss of appetite; light-colored bowel movements (stools); nausea; and/or pain, aching, or tenderness on the right side of your stomach area.
;OLZL HYL UV[ HSS [OL WVZZPISL ZPKL LɈ LJ[Z VM +,:*6=@ Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY.
Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking +,:*6=@ +V UV[ Z[VW [HRPUN +,:*6=@ ^P[OV\[ Ä YZ[ talking to your healthcare provider, as they will need to check your health regularly for several months.
You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight, or have been taking DESCOVY or a similar medicine for a long time.
ABOUT DESCOVY DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people 12 years of age and older. DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. DESCOVY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.
The most common side effect of DESCOVY is nausea.
Your healthcare provider will need to do tests to monitor your health before and during treatment with DESCOVY.
BEFORE TAKING DESCOVY Tell your healthcare provider if you: Have or had any kidney, bone, or liver problems, including hepatitis infection. Have any other medical condition. Are pregnant or plan to become pregnant. Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.
Tell your healthcare provider about all the medicines you take: Keep a list that includes all prescription and over-thecounter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.
GET MORE INFORMATION HOW TO TAKE DESCOVY DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines. Take DESCOVY with or without food.
This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more. Go to DESCOVY.com or call 1-800-GILEAD-5 If you need help paying for your medicine, visit DESCOVY.com for program information.
DESCOVY, the DESCOVY Logo, GILEAD, the GILEAD Logo, and LOVE WHAT’S INSIDE are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. © 2016 Gilead Sciences, Inc. All rights reserved. GILC0265 10/16
viewfinder
You Can Lead a Horse to Water how do you help someone who just won’t accept it?
illustration by Timothy J. Haines
I
n my July column, I told the story of a friend of mine at work, Robert, and how he had reached out to me when he was newly diagnosed with HIV. He was in a state of shock, as many would be, and needed some help and support. The first thing I had to convince him of was that he wasn’t going to drop dead in a day or two, and, that if he did the right things and made the right choices, he could expect to lead a long productive life. Unfortunately, as Robert’s new reality set in, he seemed to quickly slide into some sort of apathy about the whole situation. My initial goal was to help Robert get on ADAP (AIDS Drug Assistance Program). I myself work just a few nights a week at the grocery store (where we both work) to keep myself busy and bring in a little extra money. For Robert, this is his full-time job and, while he does it well, he has trouble meeting the minimum requirements for further advancement in the company, namely punctuality. So, for now, while he’s not exactly starving, with limited education this position is as about as good as it will get for him. He’s made progress in one key area since I wrote about his situation, though. He now has his own apartment and is no longer staying with a friend. He’s very proud of and pleased by that; he had been in a very stressful situation. Unfortunately his drug use continues; he is functional and keeps it and his life in check, but it’s still troubling. I know all too well, through my own battles, how difficult of a struggle that addiction can be. I have a grudging admiration for the fact that, while he does go on binges, his car payment, insurance, and rent are always covered first. But I worry—it’s a dangerous game to play. Over the past few months, however, he’s been slipping. He increasingly calls in sick to work, and, on occasion, just not showing up. I can’t help but think that it’s the drugs that might be the problem. My major concern, however, is that more than seven or so months since his diagnosis, Robert is still not on medication. It’s a ticking clock but again, he has developed a sense of apathy about
FEBRUARY 2017 • A&U
the situation that troubles and frustrates me. When the social worker at the clinic he started going to for HIV treatment dropped the ball, I got on the phone with ADAP and found out exactly what was needed and even faxed it for him. All they need now, from what he tells me, is a simple piece of paper from work, proving that he is basically insured. Again, it’s been about seven months, and he still hasn’t done this. To make matters worse, he hasn’t been back to the clinic at all, despite their repeated calls. That means no blood work, which means no monitoring of his T cells and viral load. He missed an important deadline in obtaining ADAP coverage just recently and now will have to begin the process anew. With a dangerous new administration ready to take over, it’s likely that we’ll be seeing at least some serious cutbacks in the Ryan White CARE Act, which funds ADAP. The Vice President has made no secret of his belief that the cost of prohibitively expensive HIV medications should be borne by the patients. At the very least, we could be facing very long waiting lists for drug benefits. The sooner Robert is signed up, the better. Robert and I are not close friends by any means. We are vastly different people. About the only thing we have in common is the fact that we have sex with men. He’s very much a straight guy at heart; I know that I’m about the only gay friend he has. He’s never actually been in a relationship; he chooses not to be. We do talk though and I’ve regularly, to no avail, tried to convince him how important taking this medication is. Also of concern, he has no real idea of when he contracted the virus. Generally the virus, if untreated, takes up to ten years from transmission to an AIDS diagnosis. But, things
can progress much more rapidly in some cases. It’s imperative that he get on medication as soon as possible. He laughs this all off every time I tell him; it’s a slightly nervous laughter, but it’s still dismissive. I also worry about another thing: Say he got financial assistance, got a prescription from his doctor—would he even be compliant with his medication? Would he show up for the long series of doctor’s appointments ahead of him? I recently threw in the towel, I just couldn’t get through to him! Then, some weeks later, we were talking and I asked him, again. The answer was the same. He listened to my litany of HIV/AIDS facts and to my recounting of the horrors of dying from this disease and how he was incredibly lucky to be able to stop it in his tracks. But it was all to no avail. Same dismissive attitude, same laughter. I’m at a crossroads here, I’ve tried to help. I want to help. I’m a bleeding heart liberal for heaven’s sake! I feel compelled to make a difference. But I can’t make someone do what they don’t want to do. Maybe it’s time for me to step away; maybe I can’t help.Ultimately, though, I know I’m going to approach this again with him. I’m just stubborn that way. John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for thirteen years and he is currently at work on his first novel, Fools Rush In. Follow him on Twitter @JohnFrancisleo2.
25
viewfinder
Dear CDC let’s end the epidemic
26
workers and services to fight the epidemic in those areas. For me and many others, HIV is not just a healthcare issue but a social justice issue. Let’s be clear, if white gay men and white women were the highest two rates of infection in the country this would not be a conversation needing to be had. Every entity with a dollar, a sponsor, a worker, or a politician in the back pocket would go life and limb ensuring that the epidemic was no more if white folks were being infected at our rates. Race plays a major role in the lack of urgency taken, as marginalized populations are often left out to pasture when decisions are being made that affect us the most. Furthermore, without allies from the other side willing to raise their voices on our behalf it often falls on deaf ears concerning the needs of our community and our demands for the proper resources and funds needed to ensure that our people are getting the same equity of health as our white counterparts. It is hard for me to watch so many of my people living in a different region than I am struggle to obtain services that in northern areas are just part of the normal continuum of care, with ranging levels of access and care providers fulfilling the needs of the community. This concern for the South though has not gone silent within our own community and
the mobilization efforts are finally starting to make some headway in getting these services in the area. I am glad to say that I know personally of many who are establishing community-based organizations to begin this work to ensure that this epidemic doesn’t continue to grow. We work with the tools we have to provide educational resources and testing to those areas in effort to normalize the need for HIV treatment and for people to not feel shamed and stigmatized to the point of making risky sexual choices. Suffice it to say, I thank the CDC for the work that it has done over the past thirty-plus years to make the virus a treatable, manageable illness, but more work needs to be done. The CDC needs to step up to the plate and actively create the resources needed in the areas that are still affected and infected the most. You have already laid out the facts of how HIV will affect over fifty percent of black gay men during their lifetime. Now let’s begin working towards reducing that number and creating programs and clinics to help end this virus, starting with your own backyard. George M. Johnson is an HIV advocate who works for Us Helping Us, People into Living. Inc., located in Washington, D.C. He has written for Pride.com, Musedmagonline.com, Blavity. com, Rolereboot.org, and Ebony.com. Follow him on Twitter @IamGMJohnson. A&U • FEBRUARY 2017
illustration by Timothy J. Haines
I
t’s been thirty-plus years of the HIV epidemic and although we are nowhere near an “end,” we can say that progress has been made in the fight to end the virus. From no treatment, to AZT, to one-a-day pills that can not only suppress the virus to an undetectable level, but aid in the betterment of life expectancy and quality, HIV has become a shadow of the devastation it used to be. However, this narrative is not the same across the board in terms of the black populations in certain areas of the country that are being infected and affected at an alarming rate. When we look at the HIV epidemic, it disproportionately affects those who are living in the South, especially black MSM and black women. As someone who works in HIV and living with the virus, I find it alarming that thirty years later, we still don’t have a better nationwide system of treatment and care. We struggle across the board with information sharing as local health departments and federal entities don’t always utilize the same databases making it hard to provide help and immediate services from the North to those in the South and vice versa. Although funding is made available to Health Departments across the country, the highest rates of infections still lie in the area where the majority of funding is created and disseminated. The CDC, located in Georgia, has some of the highest rates of infection happening right outside its own doors. As the governing body of much of HIV funding, they have done a great job of ensuring that adequate funding has been available for combating HIV; however providing funds for programming and testing is only the first step. The South unfortunately has a mixture of problems including lack of education on the virus, stigma, and racism, which creates a lack of resources for those who must do work. Add in homophobia and you create the perfect environment for riskier sex situations, which directly correlates to higher infection rates. The Centers for “Disease Control” needs to do just that at all costs, even to the extent of taking upon themselves to provide the assistance to those looking to build agencies or fund and build clinics itself and provide
Bringing hearts together since 1998
P zMatch.c m
L OO KI N G
BEYOND THE WINDOW
OF HIS GRIEF
Author Michael Schreiber spins kindly happenstance into gold in his book on Bernard Perlin, safe-keeping the work and stories of the American painter who fell into an artistic winter after the death of a lover to AIDS. by Sean Black
W
hat began as a fan letter to a revered artist, whose brushstrokes pay tribute to and further illuminate the colorful and largely underground scene of our mid-century gay society, including the likes of Jean Genet, Tennessee Williams and Truman Capote, evolved into a trusted friendship and a cultural treasure trove of imagery and prose. One-Man Show: The Life and Art of Bernard Perlin, by Michael Schreiber, chronicles the storied life, illustrious friends and lovers, and astounding escapades of Bernard Perlin (1918–2014) through frank interviews with the artist, candid excerpts from his unpublished memoirs, and never-before-seen photos. The publication, which includes an extensive selection of Perlin’s incredible public and private art, has been just recognized by the American Library Association as a 2017 Stonewall Honor Book. The destiny of this natural pairing of Perlin and Schreiber, artist and archivist, teacher and student, also edged forward a healing from the loss of a partner to AIDS that stifled his creative contributions for the following thirty years. The passing of Bud Lisker brought Perlin’s passion for painting to a crippling halt. Recognized for his pro-war, propagandist creations during World War II as well as work in a style that critics and historians refer to as ‘magic’ realism, Perlin captured aspects of urban, American life, oftentimes imbuing a decidedly homoerotic flair. Hunter O’Hanian, Museum Director of the Leslie-Lohman Museum of Gay and Lesbian Art, hits a descriptive bull’s-eye when touting Schreiber’s prowess as a preservationist and author, “Michael Schreiber proved himself able to go one-on-one with this artistic titan...[He] terrifically husbands Bernard Perlin’s uniquely 20th-century story for a 21st-centruy audience, allowing this gay
28
artist to show his true, fearless self with warmth, humor and humanity.” A&U’s Sean Black was able to sit down with author Michael Schreiber. Sean Black: So, tell me how you and Bernard Perlin came to know one another? Michael Schreiber: I discovered Bernard and his amazing artwork through my great interest in the illustrious gay social and artistic circle that surrounded the legendary photographer George Platt Lynes in the 1930s through 1950s. Bernard was an intimate member of this great New York gay “cabal,” as he called it, whose members and visitors included such artists as Paul Cadmus, Jared French, George Tooker, and Pavel Tchelitchew, the impresario Lincoln Kirstein, and such literary figures as Glenway Wescott, E.M. Forster, Somerset Maugham, and Christopher Isherwood. At age ninety-two, Bernard Perlin was the last living member of this extraordinary company, and so I screwed up my courage and sent him a “fan letter.” He responded with a friendly phone call that led to another and another and ultimately to a drunken all-nighter spent together in glorious conversation in his home in Connecticut. And so began our close friendship and the incredible journey towards this book. Bernard’s work is extraordinary It’s serendipitous that you were able to work with him directly in documenting further the breadth of his work. His art truly is as extraordinary as his life story. The work to archive it all began Opposite page: Window, 1988, oil on caninnocently enough, with Bernard express- vas, 35 3/4 by 46 inches. Author’s collection. A&U • FEBRUARY 2017
A&U Gallery
The Shore, 1953, casein tempera, 33 1/2 by 47 inches. Private Collection. Photo by John Maciel ing to me in our very first phone conversation that there were certain artworks of his in museums and private collections that he was unable to travel to, but that he would very much like to see again. It was easy enough for me to email around and obtain reproductions of these works for him. His excited response to seeing these things again and the terrific conversations we had about them led to him suggesting more searches, which of course I was more than willing to carry out. It all became a wonderful treasure hunt—a process of great reexamination for him, and of great discovery for me. Without realizing I was starting a book; One-Man Show truly began after my first weekend visit with Bernard in Connecticut, when I transcribed my audio recordings of our first long conversations about his life and art. I sent these transcripts to Bernard, who enjoyed them so much that he encouraged me to keep recording our talks. And so it just grew from there. Initially, I only thought that perhaps
30
this would lead to some sort of “oral history” project about Bernard’s extraordinary life and artistic career. But there was always the nagging question of what to do about his tremendous “visual history,” especially as the stacks of reproductions we were gathering kept growing, and I was discovering more and more original artworks, photos, diaries, and other materials from his long life and career languishing in boxes and closets in his studio. A book started to seem like an inevitability. So he was sharp and very much involved with you, revisiting the merit of his work? He was completely engaged with reviewing it all. His memory was remarkably sharp, and he was an absolutely spellbinding storyteller. Granted, he was in his nineties, so sometimes he repeated stories, but I learned to let him go on because often, new details or connections would emerge that he hadn’t recalled in his first telling of a tale. His storytelling would also often go down rabbit holes, but again I was always hard pressed to stop him because his side stories were usually just as compelling as the topic we’d start off discussing! While
in his company, I often felt like I was a privileged audience of one at a private one-man stage show, hence the title of the book, which also of course makes reference to it being a one-man “art show” in print of Bernard’s work. Bernard took a long hiatus from his work following the devastating loss of a lover to AIDS—three decades, but then resumed painting in his nineties. Could you share any details from conversations surrounding this hiatus? Bernard had met a young doctor named Bernhard “Bud” Lisker at the Everard Baths in New York City in 1976. Bernard was then in his late fifties, and although at that point was twenty years into what would ultimately become a sixty-year relationship with his life partner, Ed, the two lived apart, with other physical and emotional relationships being accommodated on both sides. Bernard and Bud’s love affair lasted for a full decade, ending with Bud’s early, tragic death from AIDS at the age of thirty-six in 1986. Bernard took charge of caring for Bud in his final months in his own home, with the aid of a A&U • FEBRUARY 2017
A&U Gallery devoted roster of hospice nurses. Through one of them, I’ve been told that Bernard was the first person in the state of Connecticut to privately care for an AIDS patient in this way. As Bernard told me, the experience of watching a man he loved die in such a horrible way just completely gutted him. He did work on one painting immediately after Bud’s passing, Window (1988) as a sort of memorial to Bud and as an expression of his grief. As a doctor, Bud had a windowless office in a hospital, and so some years before had asked Bernard to paint him a “window.” So Bernard had created a beautiful Connecticut scene of rolling hills and trees and sky. Right after Bud’s death, he revisited this painting, reworking it as a sort of allegory of birth, life and death. And then, debilitated by his grief, he put Orthodox Boys, 1948, down his paintbrush tempera on millboard, 30 x 40 inchand didn’t pick it up es. The Tate Gallery, again for another London. Presented thirty years. This is by Lincoln Kirstein not to say that he through the ICA. didn’t ultimately Photo courtesy Tate, pick up living his London, 2014. life again, traveling the world and eventually renewing his relationship with Ed, whom he married at the age of ninety, as consecrated in his painting, The Wedding (2012). But it wasn’t until his nineties that Bernard began painting again, for his own enjoyment.
And subtly, subversively inserting some homoeroticism into his posters of bulging, muscle-bound soldiers! Bernard then actually did to go war, not as a soldier but as an artist-correspondent for Life and Fortune magazines. And there his work was completely socially realistic, or as he called it, “purely reportage.” He was a visual report-
One of my favorite paintings of Bernard’s from this period is The Shore (1953), which is a breathtaking bird’s-eye view of a young man in a rowboat suspended on a transparent lake over an intricate bed of pebbles. I also particularly love the plays of light and shadow and color in Bernard’s “Night Pictures,” a series of paintings
Touching. Would you say his oeuvre had defined periods? Bernard truly confounded art critics and historians because he never stuck to one style, so his oeuvre has defied being labeled in one specific way. He’s been called a “social realist” and a “magic realist,” but the only two labels Bernard ever personally embraced were that of “gay artist” and “American artist.” But yes, his work can certainly be defined by distinct periods. Probably the most long-lasting was his work as a magic realist.
er, drawing and painting what he saw on the battlefront or at the Japanese surrender or in postwar Asia. When he came back from the war, he cast that reporter’s eye toward the Lower East Side of Manhattan, where he lived, painting scenes not too removed from his depictions of war-torn Tokyo. That’s the period during which he produced what is perhaps his most famous painting, Orthodox Boys (1948). But then Bernard got a grant to live and paint in Italy, where he made the conscious effort to paint what he called “beautiful pictures,” beginning with a gorgeous teenaged Adam and Eve. It was, in a way, a depiction of the renaissance of mankind, so to speak, the rebirth of mankind after the devastation of war, but also Bernard’s rebirth and renewal as a painter. Those Italian years were an especially prolific period for him, and his work during that time and for many years afterwards shared certain elements with that of other “magic realist” artists who were interjecting unexpected or magical elements into their examination of “real” situations or objects or figures.
depicting the swinging “cocktail culture” of 1950s New York City jazz clubs, street dances, and underground gay bars. The latter were very daring works to publicly show when he did, but for Bernard they were just further efforts to depict the full “normal” range of human beings seeking connection with one another. One of these paintings, the sensational The Bar (1957), is now in the Smithsonian American Art Museum collection, and is the cover image for the book, One-Man Show.
A magic realist? Up through and just immediately following World War II, Bernard’s work could be described as social realism. He fell very much under the influence of his mentor, the noted social realist painter, Ben Shahn, under whom he worked as a propaganda artist for the U.S. government at the beginning of World War II. This was after Bernard had been rejected for service due to his homosexuality. And yet he ended up serving nevertheless, fighting the war, in a way, with his paintbrush. FEBRUARY 2017 • A&U
Michael Schreiber is a teacher and writer based in Chicago. As curator for the estate of Bernard Perlin, he has organized several exhibitions of the artist’s work as well as an online gallery (www.BernardPerlin.com), where you can see more of Perlin’s work as well as purchase a copy of One-Man Show: The Life and Art of Bernard Perlin. With his husband Jason Loper, Schreiber also regularly contributes to the popular blog This American House, which chronicles their adventures restoring their Frank Lloyd Wright-designed home in Iowa. Sean Black is a Senior Editor of A&U.
31
Activist, comedian and California legislator Tom Ammiano talks about a half century of breaking down barriers by Larry Buhl
photographed exclusively for A&U by Sean Black
T
om Ammiano first came to my attention about twenty years ago. I was visiting San Francisco and I was at Josie’s Cabaret and Juice Joint. Tom was doing a standup comedy act, but he was introduced as one of the city’s Board of Supervisors. As I laughed at one-liners about well-hung juries and the imagined sexual proclivities of Tattoo from Fantasy Island, a thought gnawed at me: How can you do raunchy gay stand-up comedy and be a serious politician? You just…can’t do both, can you? Young, orthodox Larry didn’t understand then that things work differently in San Francisco and that Tom Ammiano has not given a flying fig about what’s proper since long before Larry was aware of anything. Ammiano moved to San Francisco from New Jersey in the late 1960s and worked with disabled children at the Recreational Center for the Handicapped. In 1975, he cofounded the Gay Teachers Caucus and successfully pushed to include sexual orientation in the San Francisco School District’s nondiscrimination policy. In the process he became one the city’s first openly gay teachers. Two years later, he, along with Harvey Milk and Hank Wilson, co-founded the “No on 6” campaign and beat back the Briggs initiative that would push LGBT teachers out of California schools. Ammiano’s activism propelled him to election to the Board of Education in 1990. In 1994, he won a seat on the Board of Supervisors. One of his first actions on the board was to convene AIDS activists and administrators from Kaiser Permanente to explore the HMO’s alleged homophobic treatment of AIDS patients. The issue was personal: his
32
partner, Tim Curbo, had just died of AIDS-related causes just three days before Ammiano was elected to the Board. A few years later he helped to create an ordinance that made San Francisco the first city in the nation to provide universal healthcare access, and he vehemently protested the ousting of renters with HIV/AIDS. Tom spent most of the past decade in the California Assembly, butting heads with two governors and recalcitrant Democrats and Republicans, to push forward a progressive legislative agenda. He introduced a landmark marijuana regulation bill, the Marijuana Control, Regulation, and Education Act to create a regulatory structure for pot similar to that for alcohol. He passed bills addressing the prevention of drug overdoses, allowing for electronic distribution of EIRs, improving wrap-around services for foster youth, decreasing costs in the criminal justice system, and a landmark law to protect sex workers from prosecution for carrying
condoms. In 2013 his K–12 transgender rights bill, letting students choose the restroom that matched their gender identity, became law. Not only has he fought for progressive A&U • FEBRUARY 2017
policies on HIV/AIDS, LGBTQ rights, affordable housing, immigrants rights, labor, criminal justice reform, he’s insisted that colleagues and the public connect the dots between all of them. FEBRUARY 2017 • A&U
We spoke in mid-November as Tom was preparing for an extended run of his one-man show, days after an election threatened, on the national level at least, many of the issues he’s been
fighting for in California. Larry Buhl: So. That election happened. What now? Tom Ammiano: It’s hard to wake up
33
and realize what the impact of this could be. In my life we’ve gone through some political setbacks. This one, no pun intended, trumps them all. People say we survived Reagan but some of us didn’t. I don’t think anything has been quite as embarrassing as this. At this stage in my life, and I’m going to be 75 in a couple of weeks, I was hoping for a little more pleasant exit music if you get my drift. Nothing is linear. But this Trump thing is like a roller coaster, dropping a thousand feet before you climb back up. At least California is an island of progressivism, right? Well, on the coasts, yes. What I’m recognizing as someone older and watching things become movements, like immigration and health care, there’s a lot of queer energy and they’re mostly young. In Sacramento there were a lot of DINOS, Democrats in Name Only, and I was able to get bills out that would not ordinarily be generated from the vast majority of Democrats, around immigration, transgender, the disabled, social justice issues, legalization of marijuana. The Democratic party has been very shy about going full tilt boogie on these issues. In the Assembly you had clashes with Governor Brown. What did it take to bring him around? Jerry Brown respects persistence. So when he vetoed two bills of mine, one on domestic workers which is mostly a Latina issue, and the other on immigration reform, stopping racial profiling through ICE, the second time around he signed them. He’s also a crafty politician. Also I wouldn’t shut up, and I had tremendous support. I don’t want to take too much credit. All of this was a strong team effort. I learned this from my
34
A&U • FEBRUARY 2017
early days, from my activism. You’ve gotta do things in a coalition. Harvey Milk recognized the suffering of other demographics. He always connected the dots. I thought that was the way to go. I am a subscriber to the gay liberation and one of the ideas coming out of that was connecting with others and not silo-ing yourself. If you look at many social justice issues, environment, healthcare, gay rights, and trans, politicians don’t recognize the issue of poverty in those issues. Your lover Tim instituted the AIDS education program in the San Francisco school. And you kept it going? He was a revered classroom teacher in the Mission district. We got a grant to spread education about HIV/AIDS. I got condoms in the school when I was on the school board. This was having it in the curriculum, recognizing World AIDS Day, getting involved with the Quilt. And there was a shitstorm around it. Many of the parents were alarmist. Flash forward to your time as supervisor, protesting loss of housing for people with HIV/AIDS people in the city. Where is that issue now? Today there are activists in housing working on that. It’s the AIDS Housing Alliance. Back then it was, ‘Where do you even report this?’ and the Board of Supervisors was a little clueless. Our housing crisis is phenomenal here. It dwarfs everything. People with HIV bear the brunt of this. It’s far from perfect but I think they’ve made good progress in getting specialized housing. Until we solve our overall housing crisis, people with HIV are vulnerable. When you talk to people about gay rights, you can move them in terms of them recognizing you shouldn’t be fired, they don’t connect the dots that if you support the affordable housing initiative you also support gay people. If you support affordable health care you also support LGBT people. What you said about silos and connecting the dots makes sense. HIV/AIDS in society now is long past being a silo issue. Yes and it’s a shrinking world. What’s happening in other places reflects on us if we’re too laid back about it. Here we still have to pay attention to the economically challenged people. I don’t think they’re benefitting in the same way from enlightened HIV/AIDS policy. And then there’s young people who think they’re immortal. FEBRUARY 2017 • A&U
I get it. They didn’t see the worst of [the HIV/AIDS] crisis. They didn’t feel it. But I still want to slap them. But we gotta mentor them. When they seroconvert even then they’re a little cavalier. We can’t get smug. It’s definitely not over. Recreational pot will now be legal in California. You’ve long been in favor of taxing pot. Happy? I’m happy but the proposition is imperfect. I saw pot as a palliative at many deathbeds in terms of appetite and nausea and pain management. But in the legislature nobody wanted to touch it. I came up with regulations to protect patient rights. There were cartels taking over. There were abuses in the system, which made you vulnerable to law enforcement. There are factions, there’s the growers, a lot to contend with. But I was gratified with what we did accomplish. The proposition that just passed is not perfect. It barely passes the smell test. But one good thing is, it talks about sentencing reform, which alleviates some social injustice. Marijuana is not the third rail anymore. It’s important this passed even with its imperfections. We’ll never get anything until we at least get the legalization part out of the way. Speaking of third rails, you were never shy about controversy. Like the “condoms as evidence” bill. But what came out of it was a compromise, that law enforcement couldn’t use one condom but could use two condoms to prosecute. I know it sounds ridiculous and I think it was absurd, but considering we started from zero, it’s something. And at least it gets people talking and engaged about the issue. We got what we got and we need to do more. It puts the sex worker in an impossible place. If you don’t have condoms then you’re much more likely to contract HIV and if you do have them they can be used as evidence of prostitution, to jail you and convict. There’s a high HIV rate among sex workers and there’s the down-low phenomenon where the john contracts an STD and goes back and gives it to his wife. All of that is real and happening. We had some success in San Francisco but on the state level it’s very dicey. What kills you the most is when you see the flicker of recognition from your colleagues about why something is necessary and the right thing to do but they can’t bring themselves to support you. That’s frustrating. There was one guy who would never vote for anything, and then
he would whisper to me, “stay strong!” Well, where were you? We’re trying to get safe injection sites now. We have had some success with some of the people in the mayor’s administration. We had the same setbacks with needle exchange, but we figured out the board of supervisors could declare an emergency around HIV/AIDS and then you could have two weeks of needle exchange, and then the board would have to pass the resolution again, until finally needle exchange is accepted. It is part of the state law now. Sometimes you have to go through theatrics. Pulling the levers of politics. [Laughs] Right. Pay no attention to the man behind the curtain. It’s pseudo-piety, simplistic-morality shit; whenever you go to help someone involved in something highly disapproved by society, they’ll say you’re enabling these people. Even giving out condoms. When I was on the school board, I pushed for condoms in the school and of course teens are sexually active, and the head of the PTA said having condoms in the school is akin to sexual abuse. Or sex education, that’s just giving them ideas. Right. Is some of this in your show? The show is about my take with irony and satire and snark about my six years in Sacramento. There are some autobiographical things, but that’s more part of the architecture of the narrative. In the close there is some more personal history but very little personal history. There are many situations where you could laugh or cry but I think it’s better to laugh. My humor tends to be political. It’s always been topical, social satire. And when I was in Sacramento I would sometimes just make a quip in the moment. Did that make it hard for other lawmakers to take you seriously? Sometimes. In the beginning it’s hard to be taken seriously because you’re gay or your voice is high or have ideas they’re threatened by. A lot of gay men face this. Some people have thought that if I’m queeny or I’m funny then I must not be serious. But I’m deadly serious. Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles.
35
mr.
Actor Maurice G. Smith Strives to Increase Health Consciousness in African-American Communities
HOWMA Meet
mr.
by Dann Dulin
Photographed Exclusively for A&U by Sean Black
SHOWMANSHIP
M
aurice G. Smith, who probably is best known for portraying the lovable Reggie in the television megahit, Meet the Browns. has been referred to as suave, sophisticated, and simpatico,
Mr. Smith’s attributes may be in his DNA or it may have been nurtured when he was a Boy Scout back in his hometown of Philadelphia. When he was eighteen in 1988, Spike Lee’s film School Daze solidified his aspirations to be an actor. Maurice graduated with a Theater Arts degree from West Chester University, then pursued acting at the prestigious Mountview Theater Conservatoire in London. For several years afterwards, he polished his skills and established a strong foundation in theater, winning Wilmington Drama League’s Best Actor award for The Piano Lesson. The thespian segued into playing film parts in Alternate Endings, Mr. Deeds, Bruce Almighty, and on TV in Girlfriends, Charmed, 24, ER, and The Middle. His new feature, Better Criminals, should be released soon. Along his journey, Maurice worked as an overnight security guard, waiter (“of course”), and a TSS (Therapeutic Support Staff), a trained counselor with children challenged by autism or behavior/emotional problems. The work also extended to overnights at a group home. Giving is in Maurice’s nature. Active in the HIV community, he’s also involved in the fight against diabetes, having lost his father, Gilbert James Smith (the “G” in his name is Gilbert) and several other family members to the disease. Frequently he likes to shop at the thrift store, Out of the Closet, which directly benefits AIDS organizations. The AIDS epidemic first impacted Maurice during his college days when Eazy-E died and Magic Johnson revealed that he was HIV-positive. This was the early nineties and one of Maurice’s fraternity brothers from another chapter (Kappa Alpha Psi) suddenly died and rumors spread that AIDS had taken his life. The rumors
36
were not unfounded. “It was a shock! There were so many myths about how you could contract the virus. At the time it was a taboo subject, but his death brought acute awareness among my peer group.” This tragic incident led Maurice and his buddies to practice safer sex. It was also the impetus for him to get tested. It was scary and nerve-wracking, because, then, if you were diagnosed, it was feared to be “instant death.” Before Maurice was an aspiring actor, he was a musician, playing the piano, saxophone, and clarinet. Nowadays he enjoys listening to an eclectic array of music, from classical to New Age, including hip hop, R&B, blues, jazz, gospel, and house.Currently in a relationship with a nurse, one of Maurice’s hobbies is cooking for his girlfriend, either seafood, Jamaican, or an Italian dish. A committed and passionate Democrat, Maurice was a Hillary supporter. He was ready for a female president! Dann Dulin: What is your outlook on having Donald Trump in the White House? Maurice G. Smith: Well it’s hard to say. They are going to do everything to make Trump look competent and I guess we’ll have to just wait and see. What’s done is done. What do think of when the AIDS epidemic is mentioned? That people live in a world where they may be treated unfairly because of their status. People need to be tolerant. I pray for all of the people, their families, and loved ones who are directly dealing with it. Some of our most talented people are being affected and that impacts our artistic world. I believe it all comes down to common humanity with one another as we come closer to curing this illness.
Where do your philanthropic roots stem from? I just love people! That’s why I love to act. We all need to escape from the difficulties of life, especially if you or your loved one is dealing with HIV or AIDS, or any other health issue. So coming home to a good laugh or a good cry by watching a movie or television…really helps. The arts, sports, and other entertainment are God’s gift to us to enjoy life. I like being a vessel to help that. People and relationships are so important. A&U • FEBRUARY 2017
ANSHIP Can you address HIV in the African-American community? It’s hard because we are very private and have a hard time with stereotyping among us. Oftentimes we don’t seek counseling or have check-ups, like for breast cancer, diabetes, high blood pressure, and so on. It just seems like in our community a lot of things don’t get dealt with until it is critical. We have to start changing attitudes in the schools at a young age. I can remember as a youth smoking was a big issue and as a small boy I was able to help my dad quit. Happily, I never picked up the habit. You’ve battled weight in the past. What is your sure-fire way of losing it? FEBRUARY 2017 • A&U
High protein, low carbs, and get moving! Walk, go to the gym; keep a couple of dumb bells at home. You know the old pushups saying: “Push up off that eating table!” What keeps you going in life? Positive people! Many of them have had a solid impact on me. I’m like a sponge…. You’re passionate about diabetes awareness. What concerns you the most? Well, it’s big in the African-American community. It’s something that can be controlled via diet and exercise, but, especially in our community, we don’t take advantage of that. We seem to be locked into meds for the rest of our lives. I pray for a cure and more education for kids.
Their sedentary lifestyles, by sitting in front of the computer screens and grubbing on bad foods without burning it off, are developing the disease. It’s happening to too many young people—as is HIV. Get tested! Anything else you’d like to say? Communication is so important. When my frat brother contracted HIV, people were silent about the disease. Fast-forward twenty-some years, and thankfully people talk more freely about it. This helps everything from research to tolerance. Dann Dulin interviewed Siedah Garrett for the cover story appearing in this issue.
37
EQUAL ACCESS
Under the Leadership of Noël Gordon, the Human Rights Campaign Expands Its Efforts to Address Health Disparities Facing People Impacted by HIV by Chip Alfred
38
tion committee, HRC has maintained a strong presence on Capitol Hill, lobbying for funding, non-discrimination and LGBTQ-inclusive legislation for people living with HIV. This has included reauthorization of the Ryan White CARE Act, the largest federally-funded program for people living with HIV/AIDS; the repeal of the HIV Travel Ban, which prohibited HIV-positive tourists and immigrants from entering the U.S.; the HOPE Act (HIV Organ Policy Equity), which legalized
Advocacy: Protecting the rights, dignity and well-being of people living with or affected by HIV. On the education front, HRC, in partnership with AIDS United, created What Do I Do? A Handbook to Understanding Health & HIV. This interactive online resource provides a user-friendly primer for the facts everyone needs to know about HIV, along with links to other resources for more detailed information. The handbook was launched to address a specific need for HRC’s constituents. “There were a lot of HIV/ AIDS resources out there, but none with adequate LGBTQ-inclusive language that put LGBTQ people at the center,” Gordon tells A&U. HRC’s website also includes a designated PrEP and PEP Resource Center, with links that guide users where they can find PrEP providers in Noël Gordon on the “campaign trail” their area. In 2016, with funding provided by the Elton John AIDS organ transplants between HIV-positive Foundation, HRC launched a new initiative donors and recipients; and the Affordable to mobilize young people on the front lines Care Act, which increases access to health of the battle against HIV/AIDS. “Twenty perinsurance coverage, treatment and medical cent of new HIV infections in this country services. are among young people, and the response Gordon explains that HRC’s HIV/ to the HIV epidemic has to include them,” AIDS initiatives, which follow President Gordon asserts. The HIV 360° Fellowship Obama’s National HIV/AIDS Strategy, take Program is a capacity-building fellowship a three-pronged call-to-action approach. program for nonprofit leaders under age Education: Providing comprehensive thirty-five who are working for HIV-inclusive organizations or initiatives. Through this educational resources about HIV prevenprogram, HRC invests in advocates and tion, treatment and care. projects in communities hit hardest by the Mobilization: Encouraging HRC epidemic. “There is a generation of young members and supporters to take action people who are rising through the ranks to fight the dual epidemics of HIV and right now who are prepared to make a big HIV-related stigma. A&U • FEBRUARY 2017
photos courtesy N. Gordon
N
oël Gordon was destined to work in the HIV/AIDS field. “HIV has defined my life from the very first moment I knew I was gay,” declares the Senior Program Specialist for HIV Prevention and Health Equity at the Human Rights Campaign (HRC). “When I came out to my mother at around age sixteen, she said, ‘I don’t want you to get HIV and die.’ That one sentence has shaped every single sexual encounter I have ever had with a man and every single sexual encounter I will have with a man.” Gordon’s connection to HIV/AIDS work started with a college class that took him to Jamaica, a country hit hard by HIV/ AIDS. “That class is what opened my eyes to the current realities of HIV and showed me that the face of the epidemic reflected the person I saw in the mirror—young, black gay men— and no one seemed to care.” Referencing the CDC’s recent projection that one in two black gay or bisexual men will be diagnosed with HIV during their lifetime, Gordon remarks, “It makes me sad that half of my peers will seroconvert if we do nothing.” Now Gordon, twenty-five, is empowered and energized to do something about it. In 2015, after serving nearly three years in various administrative and project management roles, Gordon was promoted to his newly-created position with HRC, the largest national LGBTQ civil rights organization. Founded in 1980 as a political ac-
photo by John Jackson Photography
impact on the world. The goal of HIV 360° is not just to provide these young people with the skills needed to gain a seat at the table, but to also be running the meeting.” HRC has also stepped up its HIV/AIDS public education and outreach efforts with a focus on those at highest risk. “We need to continue to sound the alarm on the impact of HIV on black gay and bisexual men,” says Gordon. “And we need to accelerate the uptake of PrEP among this group.” He points out that not enough PrEP prescriptions are being written for those most impacted by HIV. Based on the most recent data available from Gilead, the drugmaker of Truvada for PrEP, seventy-four percent of those surveyed who were taking PrEP were white, while only ten percent were African American. Of course, the health disparities facing young men of color who have sex with men (MSM) are not just about racism. “We can’t confront the HIV/AIDS epidemic without confronting other social determinants of health—the structural barriers,” Gordon contends. He cites discrimination based on homophobia and transphobia, poverty, and lack of access to quality health care, affordable insurance, and social serFEBRUARY 2017 • A&U
vices. “We need to tackle the barriers that are driving HIV transmission among black gay and bisexual men. We need to take a serious look at interventions that challenge homelessness, that challenge racism and mitigate the effects of poverty, police brutality and violence. All of those factors are what this community—my community—has to work through just to get tested for HIV in the first place.” Gordon, who acknowledges the opportunities his education and experience have afforded him, never forgets his roots. “I grew up poor in a single-parent household. My mom immigrated to Brooklyn from Panama. My family used food stamps for most of my childhood, and I was the first one in my immediate family to go to college.” The University of Michigan graduate who completed a law and policy fellowship at UC Berkeley is keenly aware that many of his peers have not been as fortunate as him. “When I think about where I have been and where I am today, the only word that comes to mind is grateful,” he says. Despite the uncertainty of what the future may hold for LGBTQ and HIV/AIDS advocacy under a new administration, Gordon remains hopeful. “It’s amazing for
me to see the movement for LGBTQ equality and the movement to end the HIV/ AIDS epidemic realign themselves in ways many folks thought they could not. I’m optimistic about the synergy between these communities and to be working at the intersection of their movements,” he says. “Until we end the epidemic, I’m going to work my ass off to make a difference.” At the end of my interview with Noël Gordon for this article, I asked him to humor me with one last personal question. “If I had a magic wand and could grant you one wish right now, what would you wish for?” “I would wish for my family to have all of their needs and wants fulfilled,” he responded. “My family has given the world to me, so I’d like to give the world back to them.” I bet you’ve already given them a world of pride, Noël. For more information, visit www.hrc.org. Chip Alfred, A&U’s Editor at Large, is the Director of Development & Communications at Philadelphia FIGHT.
39
MIRROR
IMAGE
Singer/Songwriter & AIDS Activist Siedah Garrett Reflects on Her Early Beginnings in Compton, California, to Becoming Michael Jackson’s Friend & Protégé and the Go-To Gal for Spinning Hits by Dann Dulin Photographed Exclusively for A&U by Sean Black
40
A&U • FEBRUARY 2017
FEBRUARY 2017 • A&U
41
S
iedah descends the stone stairs from her home. She’s bummed. Many others are too. This is the day after the Presidential election, and a shockwave has jolted the nation— and the world. Siedah snarls sourly, her lips curling upward, appalled over America’s choice for our next leader. She sits at a hefty wooden table by the swimming pool that’s just a few feet away from the kitchen. The floor-to-ceiling sliding glass door, which separates the pool from the kitchen, is open on this warm afternoon. The modular contemporary house is an open space, with little obstruction from one room to another. Several months ago, Garrett and husband Erik moved into this bright and airy dwelling, which could make the next cover of Architectural Digest. Once we both vent about the election, the mood lightens and Siedah radiates a burst of energy, reeling out stories and doing vocal impressions of the famous people she’s worked with over the years. Moments earlier, I was parked in front of Siedah’s house, which borders on the Miracle Mile and Hancock Park sections of Los Angeles. As I gathered my paraphernalia for the interview, a large figure appeared at the side of my car. It was Erik Nuri, Siedah’s husband of two years. A Harvard grad and former RCA Records vice president, he’s now her manager. He offered me a permit for the restricted parking area. Sipping on iced tea, Siedah offers me something to drink. I accept bottled water. Siedah settles at the table, scooting inches near me to avoid the direct sunlight. She wears antique caramel-colored sunglasses embellished with rhinestones on the sides. Erik conveniently places a pinnacle acrylic award in front of me. “Erik wants you to see this,” she chuckles mildly. It is the Good Samaritan Award bestowed on Siedah in December 2005 from the Minority AIDS Project. Her efforts have been legion. She participated in L.A’s inaugural AIDS Walk, performed as part of Divas Simply Singing!, and worked with the Elton John AIDS Foundation, as well as other organizations. At one APLA Health fundraiser, she served as Mistress of Ceremonies. “I thought myself as a bit of...,” she dons a Brit accent, “a standup comedian.” One of her lines that night was, “They don’t want gays and lesbians to get married? Why shouldn’t they?! They need to be as miserable as the rest of us!” The audience responded with a hearty laugh. Siedah’s not-so-secret passion is knitting, and she also knits and crochets wearables for people living with HIV/AIDS. “I’m motivated to give because I have so much,” she says,
42
nursing her beverage as the ice cubes clank, clank against the sides of the glass. “I have a lot. When you’re blessed with a lot, you need to give back…a lot.” She clears her throat. “The lion’s share of my spare time and energy goes into creating stuff, mostly hats, scarves, and outerwear for others.” For today’s interview, she sports an ordinary frumpy beige hat embellished with a large, lavender silk rose. It’s funky and chic. Her shiny dreads flow from under the hat onto a white fluffy blouse, and her tight semi-ripped jeans have a small red flower with green leaves painted on the thigh. She wears cutesy, stylish aqua-blue flats and is accessorized with wrist and ankle bracelets, a necklace, a bling ring, tiny dangling earrings, and clear, dazzling speckled nail polish. This Grammy Award-winner and two-time Oscar-nominated songwriter has written hundreds of songs. She’s probably best known for co-writing Michael Jackson’s iconic “Man in the Mirror,” which was the fourth number-one hit from Michael’s BAD album and number one on the Billboard Hot 100 for several weeks after its debut. Siedah also sang backup on the track. It was one of Jackson’s favorite songs and it’s Siedah’s personal fave, too. Garrett sang with Jackson when they teamed up on the duet, “I Can’t Stop Loving You,” the first single from the BAD album, and then toured with him for eighteen months after the release of his Dangerous album. Among the entertainment icons who’ve spun gold from Siedah’s lyrics are Quincy Jones, Ella Fitzgerald, Miles Davis, Roberta Flack, Barry White, Donna Summer, Earth Wind & Fire, Sergio Mendes, will.i.am, and Jamie Foxx. Siedah was also featured vocalist and dancer on Madonna’s 2004 Re-Invention Tour, collaborated on an album with the Brand New Heavies, and co-wrote the hit song “Love You I Do” for Jennifer Hudson in the film adaptation of Dreamgirls. That song won a Grammy, and garnered Siedah her first Academy Award nomination. Her second Oscar nomination was earned from the song “Real In Rio” from the animated film, Rio. Siedah also co-wrote and performed the official theme songs for the 2007 and 2015 Special Olympics World Games, and the 2010 World Expo event
in China. On this luminous day, Ms. Garrett is chummy, sanguine, easygoing, and unpretentious. She hasn’t forgotten her humble urban roots. She was raised in Compton, California. Known as the “Hub City” of Los Angeles, it’s an inner-city, working-class community. Although Compton
and Hollywood are in close proximity, in many ways they are worlds apart. With hard dedicated work, Siedah trekked down the yellow brick road from Compton to Hollywood show business success. Born Deborah Christine, she was never fond of her name. “It’s a pretty name but nobody called me Deborah. It was always abbreviated to Deb, Debbie, or DeeDee. I hated it.” At age thirteen, she had the opportunity to change it to Siedah, which means “shining and star-like.” During Siedah’s childhood, the family would move every nine months. “My mother had it figured out,” explains Siedah with a winkwink, talking about her and her younger sister, Cynthia. “She had an aversion to paying rent.” Her mother would pay the first and A&U • FEBRUARY 2017
FEBRUARY 2017 • A&U
43
last month’s rent and then it would take about nine months for the landlord to legally kick them out of the apartment. In the meantime, the gas and electricity might be turned off, and there were frequent knocks on the door by people demanding the rent. The furniture was also rented. To avoid repo, the family would move, sometimes in the middle of the night. Siedah’s paternal grandmother, Laura Draugh, put a stop to the vagabond lifestyle by threatening to call the CPS (Child Protective Services) unless she was permitted to care for her grandchildren. Grandma lived in Watts, but she wanted her grandkids to attend Compton’s better schools. The resolution was to use her Aunt Earlestine’s Compton address. Grandma would drive the kids to school in the morning and Aunt Earlestine would pick them up. They’d stay at her house with their cousins, Cokie and his two older sisters, until the grandmother would pick them up. “Every single day, the loving and caretaking of my paternal grandmother lives with me. I think of her more often than I ever did when she was alive,” offers a heartfelt Garrett, disclosing that Laura died when she was sixteen. Siedah’s mother, Doris, who wrote books under the name of Penny Rich, sadly died last summer of pancreatic cancer. At fifteen, Siedah started singing. She was part of a five-piece band called Black Velvet & Satin Soul, performing top 40 cover songs at local clubs and private affairs. It was a cattle call (an audition where tons of people show up on a first come, first served basis) that transformed Siedah’s life. She was in her mid-twenties. “I had a girlfriend that I had been singing with for a few years and she knew about the audition,” recalls Siedah. Then she lowers her voice and adds, “but she didn’t tell me.” She purses her mouth, her foxy golden eyes dart to the side, and she whispers in patronizing rhythm, “Yep, that’s my friend!” Siedah found out about the audition when her friend’s boyfriend called her. She asked for the address; he gave it to her, but he didn’t know the time. Siedah showed up at seven a.m. The actual addition didn’t start until noon. By that time there were people lined up around the block, but Siedah was the third person to be seen. Quincy Jones was looking to create a new vocal group like Manhattan Transfer or Fifth Dimension, though he, himself, did not conduct the initial auditions. For nine months, Siedah received letters —“Congratulations, you’re one of 500”; “Congratulations, you’re one of 250,” then 100, then 50, 25, 10. Finally Siedah was picked, along with three guys, and the band Deco was formed. (She didn’t meet Quincy until after her third callback.) Years later Quincy confided to Siedah that it was she who set the standard for everyone else who auditioned, “They had to be either
44
44
better than Siedah or as good as Siedah.” When it came time to sign the contract, Quincy offered the band a publishing agreement and an artist agreement. She knew she could be an artist but had never written a song before. Siedah told the guys that she didn’t favor this part of the contract. The other band members took her plea to Quincy and he responded in a strict tone, “Either you all sign it or nobody signs.” The guys returned to Siedah and said, “Bitch, you better sign this contract!” Adjusting her position at the table, Siedah lets out a howl and says, “When three large black men tell you to sign, ya sign!” Not wanting to disappoint Quincy Jones, she learned the craft of songwriting. After a year, the band dissolved and Siedah was kept on for seven more years with Quincy Jones and Warner-Chappell Music. During those years, she also recorded a solo album for Quincy’s Qwest Records. “Do you want more water?” asks Siedah. She goes to the huge double-doored ultramodern built-in fridge to collect it. While there, she pours herself more tea. Two and a half years into Siedah’s contract, Quincy was in the studio with Michael Jackson. Quincy informed her and the other five songwriters on staff that Michael needed one more up-tempo pop song. Siedah went to her friend and fellow songwriter, Glen Ballard, who went to the keyboard and began to peck out some notes. While he was composing, Siedah flipped through her lyric book. She came across a phrase that she had written down two years prior, “The Man in The Mirror.” Siedah straight away started to construct. “I couldn’t write fast enough,” she enthuses, adjusting to avoid the sun, which is now creeping into her area. Within twelve minutes they had the first verse and the chorus. They split, agreeing that each of them would work on the song then reunite the following day to record a demo. It was Friday night when they finished recording the demo but it was too late to call Quest Publishing offices and Siedah wanted Quincy to hear the song that night. She called him. “Q, Glen and I have really come up with a great song for Michael!” Quincy asked that she take it into his office, he’d listen to it, and get back with her on Monday or Tuesday. “Can I just drop it off now?” she pleaded eagerly. “No, I’m in the middle of a meeting with twelve people sitting around the table,” Quincy answered. Siedah insisted, knowing that Quincy had six daughters, so “he knew he wasn’t going to win [this argument],” says Siedah. “All right. Shit…” responded Quincy, hanging up. Siedah went to his home and handed him the demo cassette. Siedah stressed, “Quincy,
the only thing I ask is, please get back with me. Don’t make me wait.” He agreed. Three hours later, Siedah was making dinner and the phone rang. “Sid, this is the best song I’ve heard in ten years, but….” Siedah froze, not hearing anything else. She went numb, awash in the moment. When she returned to reality, Quincy was saying, “….Michael has been in the studio for over two years; he hasn’t recorded anything he didn’t write, but don’t worry, Sid. If Michael doesn’t do it on his record, I’ll do it with James Ingram on my record.” Four days later Siedah got a call from Quincy, who was in a playful spirit. “We in da studio recordin’ your ol’ piece of sooong.” Siedah glows. Quincy adds, “But…Michael says the chorus is not long enough. Hold on.” Siedah heard in an inaudible low singsong hushed voice, “Nee, nee, nee. Nee, nee, nee, nee, nee.” (Listening to this engaging storyteller is sheer heaven as she’s captivating, humorous, and absolutely entertaining, mimicking Michael to a “T,” in a good-natured way). Quincy said, “Sid, Michael says he really wants you to bring home the idea of…Hold on.” Again she hears, “Heh, heh, heh, heh, heh, heh, heh, heh, hee..” Quincy says, “Wait a minute, Sid.” Siedah continues. “Q puts…”—she pauses, straightens up, throws her shoulders back and says in a regal manner, as if being announced to the Queen—“...Michael Jackson… on the phone. Now, I don’t know about you, but when I was growing up, Michael Jackson was my husband,” screeches Siedah, nearly breaking into tears with passion, while her voice cracks. “So in my mind, I’m on the phone with my husband. But I didn’t want to be a….” She dons the persona of a hysterical fan, screaming nonsensical words, flailing her arms like an octopus. Instead of behaving the way she truly felt, she composed herself. When Michael came to the phone, Siedah replied with the coolest AT&T delivery, “How can I help you?” The first thing Michael said to her was, “I love this song,” then he followed with, “I love your voice.” Siedah was in bliss, but she replied in a soft modest timbre, “Why thanks.” Days later, Quincy invited Siedah to the studio to meet Michael. Michael began listening A&U • FEBRUARY 2017 A&U • DECEMBER 2016
to the demo, as Quincy, Siedah and engineer Bruce Swedien were stationed around the mixing board. Quincy took Siedah aside and said, “Michael says the key is too high. Can you sing it for him in a lower key?” She agreed. Siedah was making her way back to the vocal booth when she realized Michael was filming her. Surprised and slightly disturbed, she asked, “What are you doing?” He answered, “I want to film you recording this song.” “Whhhy..?” she begged. “Because I…want...to…sing…it…like you,” said Michael. Siedah flatly declared, “Great Mike. All my friends are really going to believe me when I tell them…he wants to sing it like me!” This footage can be found in Spike Lee’s 2012 documentary BAD 25. “You can see Michael filming me and his reflection on the glass in the studio,” Siedah points out. “So I’m the chick in the mirror while the man in the mirror is filming me.”
FEBRUARY 2017 • A&U
The rising sun’s afternoon rays intensify. We move inside and sit on white bar stools at a mammoth white Formica counter, centered in the kitchen. Siedah replenishes us with more fluids, as we delve into another mirror. In 1981, when the AIDS epidemic emerged, Siedah learned that her cousin Cokie had died. They had grown up together but weren’t close as adults. “I heard he was sick, lost a lot of weight, then I heard he died,” she laments, closing her eyes. “He was only in his twenties.” Siedah takes a moment. “No one knew what it was, no one had ever heard of it, and there wasn’t a cure.” Fast-forward nearly three decades. Siedah is performing at the Bermuda Music Festival with Quincy Jones. Afterward, they had dinner with the Premier of Bermuda, Ewart Brown, MD. Twenty people were seated around a huge table, alongside the Premier. Quincy introduced Siedah. The Premier murmured, “Hmm, Garrett….” Then he continued, “Are you any relation to Cokie?” Siedah was dumbfounded. “I…went… ghost. I felt my blood drain….” She doesn’t finish the sentence. While the Premier awaited Siedah’s reply, she pondered, ‘He doesn’t mean my cousin?! He can’t mean him!’ Siedah exclaimed to the Premier, “Cokie Garrett?” He answered, “Yes, Cokie Garrett.” She replied, “That’s my cousin.” Siedah’s speech wobbles and she fights back tears, but continues. “The Premier said, ‘I was his physician. I took care of him when no one would touch him.’” Siedah halts. She surrenders to the primal gut-wrenching emotion, and weeps. Tears stream down her cheeks. I hand her a tissue and stroke her back. “Oh my gosh. Thank you,” she says, surprised at her own outburst. Breathing heavily, she clarifies, “When I was talking to him I just started crying uncontrollably. I felt so embarrassed. Here’s the Premier of Bermuda and I’m bawling. Quincy was at the other end of the table wondering what the hell was going on. I’m losing
it. So I thank this man for taking care of my cousin when no one else wanted to touch him.” The epidemic had affected Siedah when her cousin died, but the full impact didn’t come until decades later. Reminiscing about this strikes a chord. She’s returns to the early days of AIDS when some songwriting friends of hers would take a daily swim at the YMCA. One day they didn’t go anymore and she wondered why. They told her, “There are gay people who swim in the pool.” At that time, people did not know how this disease was transmitted, so they were frantic, creating their own fear. Siedah has not yet written a song about the epidemic. Although the majority of her songwriting is now commissioned for special projects and events, television, film, and musicals, several times this afternoon she brings the topic up. “I’m going to get around to writing that song…,” she insists, twirling her dreadlocks. She starts singing Prince’s song, “Sign o’ the Times”: “‘…a skinny man died of a big disease with a little name….’ We all knew Prince was talking about AIDS.” I support her idea of composing a song. As we walk toward the front door, I can picture notes and lyrics swirling in her head. (Siedah is also open to doing a PSA about HIV prevention, as well.) Husband Erik, who has an HIV-positive older brother, is collaborating with Siedah on a screenplay about music in the late forties and early fifties. We near the atrium where we pass the BAD album wall, which is plastered with elegant framed platinum records, awards, and pictures of Siedah and Michael, including one of the original demo. As we are walking into the atrium that leads to the iron door, Erik, who’s been working in another room, sees us through the glass walls. He joins us. Gracious and hospitable, they leisurely walk me outside. We bid farewell. Gazing into the mirror with Siedah today was inspirational. It reflects the light upon all who share the hope that compassion still exists and will thrive, especially in the unprecedented and uncertainity of our new political era. Let’s take a look at ourselves and make a change. Wardrobe, styling & accessories provided by Siedah Garrett. Designer knits by Siedah Garrett: http:// twitter.com/SIEDAHGARRETT #siedahcreations. Hair & makeup: Jeff Jones; www.krop.com/ jeffjonesmakeuphair. Post-production (digital styling) by Eve Harlowe Digital Styling (www.EveHarlowe.com). Shot at Apex Photo Studios, Downtown L.A.: www.apexphotostudios.com. For more information, log on to: www.siedah.com. Dann Dulin is a Senior Editor of A&U.
45
fiction
P
by Chip Livingston
eter hopped into his VW Rabbit and popped the hood. Inhaling the heavy aroma of cedar in the ashtray still burning, an unraveling ball that Lana had rolled tightly between her hands, he stepped from the car and checked his oil. It splashed across the engine as he added the needed quart, and Lana stood beside him supervising as he tried to wipe the thick syrup with a wad of paper towels. “You know it’s going to smoke until it burns off,” she said. “Don’t think you’re having a breakdown.” He topped off the water in the radiator, shut the hood with a metal thunk and wiped his hands on another wad of towels. His fingers were still greasy as he took his sister’s small hands, nails manicured and clean from her standard practice of delegation, but tender palmed from the pricks of pine needles. He could smell the cedar as he kissed her knuckles. **** For all the expected trouble with his car, the drive to Atlanta was going
46
Drinking You In
smoothly, and Peter’s thoughts were concentrated solely on Cache, on bringing him back, whatever it would take. Warm wind whistled through the opened windows, drowning out mix tapes of once popular dance tracks. His left hand rode the hot, humid waves. His shirt off, Peter peered forward, eyes on the road, watching heat apparitions rise from the pavement. Four hours into the drive he saw storm clouds. Peter welcomed the cool relief. He accelerated toward that downfall. Just south of Macon came the first large drops. Alligator tears. The cold rain stung Peter’s arm and he rolled up the windows. Inside the beat-up car, the pelting rain challenged the motor to a roaring match and Peter turned off the radio. Peter made out a blue sign: Rest Area Ahead. He stepped from the Rabbit, enjoying now the water stinging his shoulders, cool points like acupuncture. Barefoot, Peter followed the cut strip ahead of him, inhaled the scent of fresh grass cuttings covered by the sudden blanket of rain. Earth. Water. Air thick with the elements. He turned away from the building housing restrooms toward the woods. In the pine hammock, Peter knelt and cupped his hands to light a cigarette. Fire. He could smell the sap in the rain. Peter tried to talk with God. He cleared the needles with his foot and doused the cigarette in the dirt and placed the filter in his pack. There was one cigarette left, and Peter separated the paper down the cylinder’s side. He poured the tobacco into his left hand, made a soft fist around it and continued.
“Esakitaumessee,” he said. “Master of Breath, it’s me, Hokkolen Yahv. Help me not to have expectations. Help me to accept whatever happens.” A familiar sensation rose between his eyes and nose as he stood, and Peter allowed himself to cry, free from anyone’s sight. He looked toward the sky, could only make out a dim gray beyond the green and brown. And the rain continued. “Please let Cache get well,” he spoke out loud. “Please let us remember how to save him.” Peter released his fist and swung his arm so that the tobacco fell to the ground counterclockwise. He remembered the words on the poster at the health clinic. “The earth has acquired an immune dysfunction. We are all living with AIDS.” Peter rubbed his hands together, swept the tobacco where it clung to his wet hand in creases. Life line. Fate line. Heart line. Head line. “Forgive me,” he prayed, “for trying to influence things. I know I’m not…” He stopped and tried again. “I just want so badly to…” “Please, Creator. Help me to understand.” Peter turned and began the walk back toward the restrooms and vending machines. He entered the red brick building, suddenly sorry he wasn’t wearing shoes as he walked across the bathroom’s slick and sticky tile. He bought a 75-cent cup of watery coffee, wiped his feet roughly against the rubber studded doormat, looked outside at the rain still pouring down. When light broke through the edges of A&U • FEBRUARY 2017
the storm, he walked back to the car and started north again. It was still raining but the sun was coming out. The devil’s wife was beating him with a frying pan, Granny always said. It meant anything was bound to happen. It was sunny again as he drove into the city and found Cache’s apartment. Peter looked in the rearview mirror. He reached into the backseat and grabbed a baseball cap. Peter opened the door and stretched out, looked up the stairs, and began the climb to his beloved. Cache met him at the door. “You made it! How was the drive?” Peter hugged him, kissed the hair by his ear, whispered, “The drive was fine.” Peter cupped Cache’s shoulder blades. “You look beautiful.” “Come in. Take the short tour.” The tour ended in the bedroom, where Peter lay down on his back and raised his hands behind his head. “Tell me what you’ve been doing.” Cache sat beside him, took Peter’s hat off and rumpled his hair. “I missed you.” Cache leaned down and Peter kissed him, pulled him to the bed and slid his hand up Cache’s shirt. “Are you hun-
FEBRUARY 2017 • A&U
gry?” he asked. “I just want to touch you,” Cache said. Peter rolled Cache over to his back, climbed on top and sat carefully astride him. Cache closed his eyes as Peter removed his shirt. This is your body, Peter thought, lowering his head to kiss Cache across the chest. He mapped out the surface, charting sizes, shapes, positions of freckles, moles and scars. He looked for signs of change, discoloration, for something he might have missed. As they made love, Peter measured Cache’s muscles, his fat, the distance from skin to bone. Fingers brushing lymph nodes, he broke the kiss to taste the salty skin, to bite into Cache’s nipple as he watched him come. Then Cache lay still, but Peter’s fingers kept moving. He traced the hair line from the navel, along the heart. He moved down the right arm. At Cache’s wrist, Peter’s fingers slowed and followed a vein to a chicken-pox scar just below the bend of the elbow. Peter imagined the tiny holes where they drew blood. He traced the vein back to the wrist, and like a nurse, Peter counted the heartbeats. Cache’s pulse was slowing,
and Peter put his head on his lover’s chest. He watched their come turn watery and roll down Cache’s belly. He put his palm in the middle to test its sticky pull. It smelled faintly of bleach, and Peter wondered if it was from the new drugs Cache was taking. Peter rolled to the side, his arm still draped over his love’s lean chest, then stole away quietly once Cache’s breathing settled into the familiar pattern of sleep. Peter took a hot shower, stood naked in front of the full-length mirror, and toweled off. He waited for the steam to clear, then like a teenager, he leaned forward and examined his face. He looked for signs of change. Discoloration. For something he might have missed. Chip Livingston’s story “Drinking You In” was a finalist for the 2016 Christopher Hewitt Award in Fiction. Livingston is the author of the novel Owls Don’t Have to Mean Death (Lethe, 2017); a story and essay collection, Naming Ceremony; and two poetry volumes, Crow-Blue, Crow-Black and Museum of False Starts. Chip teaches in the low-residency MFA programs at Institute of American Indian Arts and Regis University. Visit his website at www.chiplivingston.com.
47
Hide & Seek paul volberding, md, helps create synergy at the amfar’s institute for hiv cure research
T
Jeannie Wraight: Dr. Volberding, can you briefly explain the structure of the amfAR Institute for HIV Cure Research and your role within it? Paul Volberding, MD: Sure. The Institute is based in San Francisco and administratively within the AIDS Research Institute of which I’m the director. The investigators asked me to join them as the Director and Principal Investigator [PI] of the Institute because I have a long record of working in HIV and have some really great staff members to help me do this. We provide the home for the Institute here in the [UCSF] AIDS Research Institute, and as the PI, I’m responsible for managing the Institute, supervising the staff, the budget and making sure we’re on track. I work very closely with our lead investigators—four scientists and a scientist from amfAR itself, Rowena Johnston. The six of us function as a Board and make decisions regarding the direction of the Institute. My role in that is to be the quarterback and coach I guess. The CURE acronym, which describes the barriers to an HIV cure, is said to be essentially the Institute’s outline for its research: Chart the location of reservoirs; Understand
48
how reservoirs are estabished and persist; Record size of reservoirs; Eliminate reservoirs. What has been your main focus or interest? I’m really involved in all of the research. My strength is in clinical investigation and translational research. I’m particularly interested in the clinical work we’re doing. We’re starting one clinical trial and we hope to do more. My main job in the Institute is to provide an umbrella over the whole Institute and support of the scientists regardless of the direction of their research. The CURE acronym, in part, was a useful device amfAR came up with to look at cure research from a number of perspectives. There’s quite a bit of overlap within that. Any good scientific team has a number of people who don’t just work on one area but collaborate and cross over and we’re certainly encouraging that in the Institute. What would the clinical research look like? Where would the trials take place? We’re starting, in collaboration with the University of Minnesota with amfAR’s support, to do a trial where people that are
HIV-infected, on treatment and fully suppressed, would volunteer to intentionally stop their treatment. This is called an analytic treatment interruption, or ATI, and we watch them very closely to see how long it takes for the virus to come back. Along the way, we look at a variety of markers, including ones that we’re developing here to see if we could better predict how long it takes to rebound. We think that will give us insight into the nature of the reservoir and why it’s activating. And so again, that’s a trial that involves direct human volunteers and, in the future, we would hope as we develop more cure drugs that we will as quickly as possible bring those to trial as well. Can you briefly describe our current understanding of viral reservoirs? It’s a changing concept because we’re still learning about the reservoirs. There are many aspects we don’t understand. But basically, we know that the virus can hide in cells. It’s what we call a latently infected cell. The virus has a viral genome. The virus is taken into the genome of the cell A&U • FEBRUARY 2017
illustration by Timothy J. Haines
he amfAR Institute for HIV Cure Research was launched on World AIDS Day 2015. With only a little over a year under its belt, the Institute’s work thus far in wading through the many questions to a greater understanding of viral reservoirs, the primary barrier to curing HIV, is quite impressive. In last month’s edition of Destination: Cure, we reviewed a summary of some of the basic structure of the Institute and highlighted some of the presentations from the HIV Cure Summit. In this edition, I sat down with Paul Volberding, MD, Director of the Institute and discussed his role and some of the groundbreaking work being conducted by the Institute’s dedicated scientists and staff.
itself which is characteristic of this type of virus. We think that these latently infected cells are the reservoir. The reservoir means basically a collection of cells that are latently infected. They’re probably located all over the body. We can occasionally find reservoir cells in the bloodstream but we think it’s mostly located in tissues, probably mostly in lymph nodes and in the gastrointestinal tract, which is basically a big, hollow lymph node. We don’t think the reservoir is in any one spot. We hope that the cells we find in the blood reflect the size of the reservoir in the whole body because we can’t sample tissues from everywhere in the body. We tend to rely on the blood or occasionally biopsies from the gut to give us a better sense of what’s happening in the reservoir with these latently infected cells. It sounds like, from presentations at the symposium, that you found additional cells that we weren’t aware of that harbor latent virus? There’s a lot of interest in finding what the nature of the cells in the reservoir is, and we are using some very sophisticated techniques that narrow [the search] down to very small subsets of the lymphoid cells that might harbor the virus and that’s important because, as we look at, especially, tissues of the reservoir, we want to look very specifically at those cells. Have there been barriers the Institute’s researchers have encountered? Such as necessary assays that don’t yet exist? Absolutely. In part, what we’re doing is basic science. We’re still trying to understand the reservoir and how we can interact with it. In part, our challenge is really an engineering one. How can we best find the reservoir cell and what kind of new technologies can we apply to look for those? We have some very creative scientists here in the amfAR Institute that are working very hard to develop some highly sophisticated new assays, new ways of looking at the cells. Can you discuss the importance of the TLR data and what further research is currently being conducted? Sure. TLR stands for toll-like receptors. These are chemicals on the surface of the cell or sometimes actually in the cell that are part of what we call the innate immune system, which is fundamentally important part of our protection. It’s the part of our immune system that is the first responder when a virus, bacteria, or a foreign substance is detected in the body. FEBRUARY 2017 • A&U
We think these receptors are very involved in looking out for viruses like HIV. The idea is that if we can use the chemicals that stimulate this part of the immune system, we might be able to wake up some of these latently infected cells in the reservoir and without causing inflammation, which is a risk. If we could wake up some of these cells, then maybe we can possibly come back with another approach. For example, a therapeutic vaccine that might help the body kill those cells. So the whole goal with the TLR approach is to use the innate immune system to activate and eliminate the cells in the reservoir. It’s really a tall challenge, but we think this is a good first step in our Institute’s approach to cure research. Are there any therapeutic vaccines specifically that you might be looking at? That’s the question of the moment. We’ve made a lot of progress in our understanding of the TLR and we have access to a number of TLR agents, but we have to combine it with a therapeutic vaccine. We have access to some really interesting ones and we’re in final negotiations to decide which one to go with; we’re going to make that decision very soon. Then we would be able to start looking at combined therapy first in a primate model. We hope to be able to move into human trials as soon as possible because even the primate models are not exactly like HIV, so we’re eager to do human trials. I know it’s unfair for me to ask for a time frame, but I’m going to anyway. I think it’s a good question. We’re very close to having a vaccine [therapeutic] that we want to work with so we should be in at least primate studies this year.
tory. I don’t know whether that’s going to be an important observation or not. If [TLRs] end up not working in people, it might, in retrospect, be a very important observation that we really could rely more on [for] work in the laboratory to look at other agents if we have to. We think that’s important. And the analytic treatment interruption study that I mentioned in people is also going to be very important to move us along in developing assays to really try to be more precise in quantitating the reservoirs. So, I think we’re really making some good progress. We spoke a little about the tissue reservoirs already. Is there anything else you’d like to mention? Well, one intriguing problem is you can’t easily ask people to give up their organs [jokingly said]. Even lymphoids are difficult, so we’re trying to develop techniques to image the reservoir in tissues using radioactive labels, for example. We’re using very sophisticated MRI scanning techniques so I think that will be an important breakthrough if we could begin to quantitate the tissue reservoir in living people without having to biopsy the tissue. Is there anything else you’d like to add? We’re very appreciative of the support we’re getting and we really do see this as a very direct partnership. As I mentioned, Rowena Johnston is on our Board; she participates in all our decisions. So, in this case the funder, amfAR, is really an active participant, not just writing the check. I think that’s really one of the most important parts of this project.
That’s great. Yeah, in part because there’s only so much you can do in the laboratory, in petri dishes—the immune system is so complicated that you really have to quickly go into animals and the best animal model for HIV in people is SHIV, a similar virus in monkeys. I think we can get there pretty quickly.
Well, I think what you’re doing is great. The way conventional research is done is so fragmented. This type of collaboration could really move things forward quicker. Absolutely. We get together several times a week to share data; we all see the data as it happens and that’s our commitment, really—to not do this as a conventional academic but as a a task. We want to make progress in finding a cure and we think this is the best way to do it.
That’s pretty impressive; you guys move quick! Next question, what would you say is one of the major discoveries so far? The TLR [research has] shown some real promise in other studies, especially [the studies performed] in monkeys. We’re finding that it’s actually pretty hard to show the same activity in the labora-
Jeannie Wraight is the former editor-in-chief and co-founder of HIV and HCV Haven (www.hivhaven.com) and a blogger and writer for TheBody. com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in New York City.
49
Hiding Place
T
his year, amfAR marked World AIDS Day with the 2016 HIV Cure Summit in San Francisco, California. The summit provided an overview of our current understandings in HIV cure research and provided us with a rundown of the goals and ongoing research of the amfAR HIV Cure Institute. The Cure Institute was formed in November of 2015 with the goal of exploring some fundamental questions that may lead to the discovery of a functional and/or an eradication cure of HIV. They intend to develop the “scientific basis of a cure for HIV by the end of 2020.” The Cure Institute made its home on the campus of the University of California San Francisco (UCSF) with a $20 million a year commitment by amfAR for five years—a total of $100 million dollars. So, what exactly does the “scientific basis of a cure” entail? Currently, the main barrier to “curing HIV” is believed to be HIV viral reservoirs. The Cure Institute is dedicated to understanding and eradicating the HIV reservoir. This will be done through numerous projects to enhance immune response, to reverse latency (activate the resting cells harboring HIV and to kill off these cells) and to control the reservoirs after clearance. Working in teams and with industry partners (including Gilead, UC Berkley, and the Gladstone Institute), researchers at the Institute are centering on four main projects, the acronym for which is CURE: Chart the location of reservoirs Understand how reservoirs are established and persist Record size of reservoirs Eliminate reservoirs Research will focus on finding where the reservoirs are, how big they are, what latent cells HIV resides in, how to identify these cells, how to activate and then eliminate them, and then how to prevent more reservoirs from being established. Research at the Institute has thus far found some interesting results. One main issue is finding out exactly where the reservoirs are. The viral reservoir is not located in one singular place, but found in
50
cells throughout the body including the gut, lymph nodes, and tissues. They are also found in several different cells, but primarily in CD4 cells. Dr. Peter Hunt, Associate Professor of Medicine at the HIV/AIDS Division, UCSF, gave an interesting talk on the progress that has been made so far at the Institute. He discussed charting reservoirs in tissue. Dr. Hunt explained that most of our CD4 cells reside in the lymph nodes, spleen, and the lining of the gut, with only one to two percent of our total CD4s circulating in the blood at any given time. Most are in the gut, spleen, and lymph nodes. There are ten times more cells infected with HIV in the gut than in the blood. Some of the HIV-infected cells that are not found in blood behave very differently than peripheral cells and may respond differently to interventions to activate or kill them, so identifying and understanding them is very important. T follicular cells (Tfcs) reside in the lymph node and are a major reservoir for HIV. They live in B Cell follicles. B Cells are responsible for making antibodies, and Tfcs help them. Tfcs are the main target of HIV in the lymph node and produce most of the replicating virus in the lymph in a person not on ARVs. In these follicles, Tfcs are protected from cells that would normally attempt to kill HIV-infected cells, like cytotoxic CD8 and natural killer cells. This may also make them hard to kill with immune-based therapies, one strategy for reducing the viral reservoir. Tissue Memory Resident Cells (TMRs) are another reservoir cell that may be difficult to kill as they are able to hide from the immune system. They’re located in the gut and tissue but not the blood, so they cannot be seen through normal blood draws.
By measuring the amount of HIV in Tfcs and TMRs through gut and lymph node biopsies, researchers at the Cure Institute will explore several questions that could lead to a better understanding of how to rid the body of these latently infected cells. They will try to determine if the amount of HIV in these cells can predict how long it will take for viral rebound during a treatment interruption. They will also evaluate different shock-and-kill therapies on these cells. Another team at the Institute is focused on ways to identify which cells harbor HIV. Currently only a few markers have been identified (Exhaustion markers: PD-1, LAG-3, TIGIT) and these are not fully reliable. These researchers are looking for signatures which could be used to identify cells with latent HIV through total body imaging. As the research at the amfAR-sponsored Cure Center at USCF continues, our knowledge of HIV reservoirs grows, getting us closer and closer to first a functional and then hopefully, an eradication cure of HIV. Jeannie Wraight is the former editor-in-chief and co-founder of HIV and HCV Haven (www. hivhaven.com) and a blogger and writer for TheBody.com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in New York City. A&U • JANUARY 2017
illustration by Timothy J. Haines
one focus of the amfAR 2016 cure summit targeted hiv reservoirs
lifeguide
Quick Shots a round-up of under-reported-related stories from 2016
I
t’s time for a 2016 desk clearing and to report some hepatitis-related stories that fell under the radar during the year.
illustration by Timothy J. Haines
Veteran Killed by Hep C Added to Vietnam Veterans Memorial Not every veteran killed by war dies on the battlefield. In the case of soldiers like Jim McGough, transfusions that saved their lives can eventually kill them. McGough was an infantry soldier in 1971 when he was hit by a grenade near the Laos border. Surgery performed on him in Okinawa included a transfusion to replace lost blood. Twenty years later he learned he had the hepatitis C virus (HCV), but he didn’t opt for treatment because he was asymptomatic. In 2014 he died of liver cancer, months before new, more effective drugs came onto the market. As he had no risk factors for HCV transmission, it was assumed that he contracted it from the transfusion in Japan. In 2016, McGough’s name was inscribed along with seven other names on the Vietnam Memorial “Wall.” Nearly 400 names have been added to the wall since the memorial was completed in 1982. For a name to be added, the soldier’s death must have resulted from injuries sustained during the war in Vietnam or a defined combat zone. Viral Hepatitis May Kill More Worldwide than HIV, Malaria or TB The first study to systematically study the scope of viral hepatitis around the world, published in The Lancet in September, showed that hepatitis A, B, C, and E caused 1.5 million deaths in 2013, making it one of the leading causes of deaths worldwide. The study also found deaths related to the liver-damaging disease have risen dramatically in the past two decades, even while deaths from other diseases are falling. Researchers estimated that there was a sixty-three percent increase in deaths from viral hepatitis between 1990 and 2013. In 1990, the disease was the 10th leading cause of death in the world. By 2013, it was the seventh leading cause, and its prevalence had surged in wealthy and poor countries alike. Many countries in Africa and Southeast Asia don’t have universal vaccination programs, and in some countries, like China, the new
FEBRUARY 2017 • A&U
antiretroviral treatments are not available because they haven’t been tested. More Prisoners Sue States Over Lack of Hep C Treatment A&U has reported on the challenge facing correctional institutions in treating inmates with new and pricey antiretroviral drugs. In 2016 lawsuits against state prisons became more common. In December, the ACLU and the Roderick and Solange MacArthur Justice Center in St. Louis filed a federal lawsuit against the Missouri Department of Corrections alleging that inmates did not receive treatment for the hepatitis C virus. The lawsuit cites a survey published by the nonprofit Project HOPE, which found Missouri’s Corrections Department in January 2015 reported treating less than one percent of inmates with the illness. In July, attorneys with the ACLU and other advocates sued the Tennessee Department of Correction, alleging officials knowingly denied inmates care for their hepatitis C, a neglect they charge is cruel and unusual punishment. This comes on the heels of an investigative report by the Nashville Tennessean earlier in 2016 that found that of nearly 3,500 inmates with hepatitis C in Tennessee prisons, only eight were receiving one-pill-a-day treatment that could cure them. Correctional populations represent about one third of total U.S. HCV cases, according to the Hepatitis Education Project.
More than 1 Million Worldwide Treated With New Meds In October, the World Health Organization (WHO) announced that more than one million people in low- and middle-income countries have been treated with direct acting antivirals (DAAs) since the drugs were released in 2014. The barrier to treating the estimated 80 million people with chronic hepatitis C worldwide remains the cost of the meds, which can be unaffordable even in high-income countries. The WHO points to the success of access strategies in bringing the new meds to low- and middle-income countries, including Argentina, Brazil, Egypt, Georgia, Indonesia, Morocco, Nigeria, Pakistan, Philippines, Romania, Rwanda, Thailand, and Ukraine. These strategies include competition from generic medicines through licensing agreements, local production and price negotiations, according to the WHO. FDA Approves Pill to Treat All Forms of Hep C In June the Food and Drug Administration approved the combination pill, Epclusa. Made by Gilead Sciences, Epclusa combines Sovaldi with a new drug that attacks the virus using a different mechanism to treat all six genetic subtypes of HCV. Clinical data reviewed by the FDA showed that the drug, when used in combination with ribavirin, cured ninety-five percent of patients in three months. Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles.
51
lifeguide
Color Blind a report documents racism & xenophobia by Larry Buhl in hiv non-disclosure media coverage in canada
• More than two thirds of newspaper articles analyzed focused on the race of defendants. • African, Caribbean and Black men living with HIV are disproportionately represented in mainstream newspaper articles. • While Black men account for twenty percent of people who have faced criminal charges related to HIV non-disclosure in Canada, they are the focus of sixty-two percent of newspaper articles on such cases. • Immigrant and refugee defendants are over-represented by coverage. Only eighteen percent of defendants in HIV non-disclosure cases are immigrants or refugees, yet stories about immigrants and refugees account for sixty-two percent of news stories. One of the report’s authors, Eric Mykhalovskiy, a professor of sociology at York University, tells A&U that he was shocked by the scale of stereotyping and stigmatizing by Canadian media outlets in their sensationalistic coverage
52
of HIV non-disclosure cases. “What comes through is the suggestion these defendants are a disease threat and morally reprehensible, and that’s aggravated when the defendant is a black man because those cases have received the bulk of media attention,” Mykhalovskiy says. “And the coverage has been remarkably consistent in that they are described as disease threats endangering Canadians.” Researchers also found that almost half of the coverage where a person has been charged with failing to disclose HIV status
racial bias in the U.S. “The media coverage is a reflection of ignorance in the broader society about HIV and transmission risks, and the media coverage has been very stigmatizing. Of course there are responsible journalists but overall [the coverage] is awful, especially the TV and cable coverage.” Strub adds that inaccurate and racially-biased coverage is problematic because mainstream media is a major driver of stigma and discrimination against people with HIV as well as racial minorities and immigrant communities. A call for newsroom reform The report offers recommendations to newspapers and media outlets for improving coverage of HIV criminalization: • Treat HIV non-disclosure as a health issue, not simply a crime story. Assign stories to health editors, not crime beat reporters.
to a partner focuses on the cases of four Black immigrant men. One of these men, Johnson Aziga from South Sudan, was described in sensationalistic headlines as “HIV Attacker,” “AIDS-spreading Lothario,” and “HIV Murderer.” “There is a pattern of mainstream coverage of crime that emphasizes the links between race and criminality and this is an expression of this pattern,” Mykhalovskiy adds. Canadian law requires people with HIV to disclose their status before engaging in activities that might engage in a realistic possibility of “serious bodily harm.” In its most recent ruling on the matter, in 2012, the Supreme Court of Canada decided a person with a low viral load and uses a condom during vaginal intercourse is not required to disclose his status, but the Court provided no direction for specific sexual activity beyond that. Sean Strub, a veteran HIV/AIDS advocate activist and executive director of the Sero Project, tells A&U he’s not surprised by the report’s findings, because he sees the same
• Avoid using mug shots in stories, because they reinforce the belief that people with HIV are criminals. • Expunge story descriptions that are inherently racist or that demonize the defendant. • Base coverage on HIV transmission on current scientific research. Point out the negligible risk of transmitting HIV when people living with HIV have an undetectable viral load. • Reach out to AIDS service organizations, people living with HIV and HIV advocates for their perspectives on each story. • Investigate why Canadians with HIV are charged with aggravated sexual assault in non-disclosure incidents even when no HIV transmission has occurred. For a report summary, log on to: http://bit. ly/2iztZhj. Full report: http://bit.ly/2izmLtr. Larry Buhl writes the Hep Talk column for A&U. A&U • FEBRUARY 2017
illustration by Timothy J. Haines
A
new report documents the anti-Black and anti-immigrant bias in Canadian newspaper coverage of HIV non-disclosure criminal cases. According to the report, “Callous, Cold, and Deliberately Duplicitous,” Black and immigrant men overrepresented in coverage of these cases, and the coverage “stigmatizes Black heterosexual men as dangerous sexual and public health threats.” This reporting trend occurs despite evidence that the majority of people who face criminal charges for HIV non-disclosure in Canada are white. The report was written by a five-person team of academics who have been active for years in the arenas of community organizing and HIV/AIDS prevention and treatment. The team examined 1,700 articles from 1989 through 2015 and found that Black immigrant men living with HIV in Canada are dramatically overemphasized in Canadian mainstream newspaper stories about HIV non-disclosure criminal cases. By the numbers, researchers found:
E R U CULT S THE
AID OF
BOOKS How to Survive a Plague The Inside Story of How Citizens and Science Tamed AIDS by David France Alfred A. Knopf
I
love the novel. It’s not often that a nonfiction book moves me the way that fiction can. This one did, to tears at times. David France does something unique here. He follows up his award-winning documentary of the same name with a brilliantly researched, often firsthand account of the harrowing early days of the AIDS epidemic, the days that came before the advent of the lifesaving cocktail of drugs that snatched many from the jaws of death and ensured a normal life span for so many of us. France does more than provide an in-depth account of AIDS from the earliest days of the mysterious “gay cancer.” Not only is his book a well written history of this time, it takes a unique approach. It’s the story of how AIDS was, if not cured, then tamed, by two powerful groups of people, the brave activists of the era and the scientists looking for effective treatment. After years of the activists’ raising their voices and, quite literally, lying in the streets when necessary to fight a negligent administration and a hostile public, they began working with and even within the bureaucracy that they had fought for so many years. Medical science and activists finally worked together and the results changed history. Memorialized and recognized here are so many brave men and women who fought the fight that brought about treatment. So many were fighting for change even as they fought the disease ravaging their own bodies. Some held on and made JULY 2016 •2017 A&U• A&U FEBRUARY
it; so many more didn’t. This is a fitting tribute to their lives and accomplishments. This book should be required reading, especially for young people. They should know of how the PrEP negative individuals are able to take came about and learn how they can still make a difference and increase access to it for all. It also reminds us, as another bigoted and indifferent administration gets ready to take power, of how we fought hate and intolerance once before. This is a message relevant now because, sadly, we may soon be called to fight again. —John Francis Leonard
Nowhere Else I Want to Be: A Memoir
Marsh and her husband Tim lived at Miriam’s House, and she learned that there was much more to being the director than she’d imagined. She accompanied residents to the ER; sat by deathbeds; and dealt with staff issues and substance-abuse relapses, learning a few truths about herself in the process. But what gave her “real joy,” she discovered, “was relating on an intimate level with the residents.” Over time, “being in service” morphed into “being present” for the residents, and “[t]here was humility in ceasing to help the vulnerable and commencing to be with them. To stay with them.” Marsh paints vivid word-pictures of the women of Miriam’s house, enabling us to
by Carol D. Marsh Inkshares
T
he book that really jump-started Carol Marsh’s imagination as a teenager was Catherine Marshall’s Christy. “I dreamt of being like Christy,” she recalls, “and going to work with poor mountain families— later, Indians on reservations, and later still, overseas with the Peace Corps—and helping people who needed me.” She saw herself living “a life of service in which I would make things perfect for some small village or group of children. For that they would, of course, love and appreciate me.” Somewhere along the way, Marsh realized that her calling was working with women in need. So, in 1996, she founded Miriam’s House, a place for homeless women in the Washington, D.C., area who were struggling with HIV and AIDS. Each woman came to Miriam’s House with a painful back story all her own. Claudia was mentally ill. Rebecca had been incapacitated by a stroke and communicated by pointing to pictures or words in a little book that one of the interns put together for her. Laila had contracted the virus from a blood transfusion following a car accident during her childhood. Alyssa, one of the youngest residents, had been pimped out by her mother, who had “needed the money to pay the drug man.”
enter their lives as much as it is humanly possible to. And we come away from the book moved by both the story she tells and the honesty with which she tells it. —T.J. Banks John Francis Leonard writes the column Bright Lights, Small City for A&U. T.J. Banks is the author of Sketch People, A Time for Shadows, Catsong, Houdini, and other books. Catsong was the winner of the 2007 Merial Human-Animal Bond Award.
53
T
A Calendar of Events
Ruby’s Rap
continued from page 18
he Conference on Retroviruses and Opportunistic Infections (CROI), an annual meeting of top researchers from around the world, is coming to Seattle, Washington, from February 13–16. The lay public seeking the latest research on HIV and other infectious diseases, and how theory translates into practice, cannot usually attend, but the conference’s vital informational resources—webcasts, abstracts, electronic posters, and other materials—are made available to the public online, too, in the days and weeks following. HIV-related topics will include HIV reservoirs, biomedical advances in HIV prevention, CD4 and CD8 T-cell research, PrEP trial design, new drug formulations and resistance, HIV incidence among youth, HIV and the microbiome, and HIV cure research, among many other areas of interest. The conference is organized by The CROI Foundation in collaboration with the International Antiviral Society–USA (IAS–USA). Visit www.croiconference.org/electronic-materials for more information.
Indeed, a grand idea. What stands out for you about writing this book? What struck me was how eager her friends, family, and colleagues were to share their memories. They miss her, and talking about her brings her close again. Several of the interviewees have become friends of mine too, and Madeline’s brother, Jef [spelled with one f], is the best ally a biographer could hope for. I like to say that Madeline must have been keeping watch, making sure I met the right people. However it happened, I got to know them and care about them. What one thing stands out in your mind about Madeline Kahn? I’ve been so immersed in her story for so long that I can’t point to any single thing. But a short list would include her love of music, her intelligence, her vulnerability, her tremendous talent, and her persistence. She experienced a great many disappointments and setbacks and faced many challenges in her life, but she just kept going. I learned so much about her from this book. She certainly had chutzpah and charm.What’s your favorite Madeline Kahn movie? There are many, but I like to call atten-
54
Tonia C. Poteat, PhD, gave a plenary address at last year’s CROI on the topic of HIV and transgender individuals
tion to two movies that often get overlooked. The Adventure of Sherlock Holmes’ Smarter Brother was a showcase for all of Madeline’s talents, written and directed by one of her biggest fans, Gene Wilder. It’s probably the best single example of her range. The other movie I try to steer people toward is her final film, Eric Mendelsohn’s Judy Berlin. She plays a Long Island housewife with heartbreaking delicacy and compassion. I will have to see these two flicks now. Any updates since the hardcover edition was published? Paula Kahn, Madeline’s mother, died before I finished the first draft of the book. Her second ex-husband, Hiller Kahn, Madeline’s stepfather, died five days before her. Eileen Brennan—one of my favorite interviewees—also died before I could finish the book. Ted Barry, Madeline’s uncle, died not long after I spoke to him, and of course Gene Wilder died last August. Anyone die before you reached them? Yes. Harvey Korman, Dom DeLuise, Kenneth Mars, Peter Boyle. I would have loved to talked to Marty Feldman [he died in 1982] about working with Madeline on good movies, such as Young Frankenstein
and Smarter Brother, and on bad ones, Slapstick, Yellowbeard. Bill, can you comment on Madeline’s involvement with the AIDS community? Like most people who worked in New York theater, Madeline saw how hard the epidemic hit her community and she felt the shock, horror, rage, and grief that everyone felt. She wanted to do what she could to help. That went well beyond wearing red ribbons when she went out in public, though she did that, too. Like her biographer, she didn’t like to talk about her charity. Unlike her biographer, however, she was a performer, and so she dedicated some of her performances to raising money to fight AIDS. [William takes a bite out of his tarte du jour.] When Charles Ludlam [Madeline’s Hofstra classmate] died, Ruby, that’s one measure of loss she felt, and the motivation she found to participate in fundraising to fight AIDS. If you’re still “mad” for Madeline, click on William’s blog: billmadison.blogspot.com, or visit FaceBook: http://madeline-kahn-beingthe-music.blogspot.com/. Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com. A&U • FEBRUARY 2017
FEBRUARY 2017 • A&U
55
Survival Guide
[a portrait by sean black]
“When I learned in 2012 that someone on sustained and effective HIV treatment could not transmit HIV, it changed my life. I also learned it was the big secret in medicine. Determined to get the message out to the public at any cost, I started gathering data, engaging the researchers, and mobilizing folks in the HIV-positive community who also felt the same way. This struggle for truth has been the most important and rewarding challenge of my life. It’s inspiring to see that this diverse community of people with HIV and allies are changing the outdated and fear-based narrative about us. Truth is on our side.”
Bruce Richman Bruce Richman is the founding Executive Director of Prevention Access Campaign which launched “Undetectable = Untransmittable” (#UequalsU). Bruce advocates at the federal level and organizes at the community level to end the dual epidemics of HIV and HIV stigma by ensuring communications about people living with HIV catch up with the science.
Sean Black is a Senior Editor of A&U. 56
A&U • FEBRUARY 2017
TREATMENT LOWERS THE AMOUNT OF HIV IN YOUR BODY. AND HELPS LOWER THE CHANCE OF PASSING HIV ON. Sean Black is a Senior Editor of A&U.
There is no cure for HIV, but treatment can help protect your health and the people you care about. Talk to a healthcare provider and visit HelpStopTheVirus.com © 2016 Gilead Sciences, Inc. All rights reserved. UNBC3046 04/16
How does HIV affect my future? It doesn’t. Let’s Grow Old Together See what life with HIV looks like from diagnosis through grandkids with a little help from Walgreens. Explore Calvin’s HIV journey at Walgreens.com/LetsGrowOldTogether. ©2017 Walgreen Co. All rights reserved.
392078-191
1216