SEP+OCT 2014 by POSITIVELY AWARE

C O M M E M O R A T I N G

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Y E A R S

News from AIDS 2014

the melbourne report POSITIVELY AWARE THE HIV TREATMENT JOURNAL OF TEST POSITIVE AWARE NETWORK

S E P T E M B E R + O C TO B E R 2 0 1 4

BEHIND THE WALL Living under the stigma of HIV while incarcerated can be a sentence of its own

What is STRIBILD? STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. It combines 4 medicines into 1 pill to be taken once a day with food. STRIBILD is a complete singletablet regimen and should not be used with other HIV-1 medicines. STRIBILD does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking STRIBILD. 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 chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.

IMPORTANT SAFETY INFORMATION What is the most important information I should know about STRIBILD?

• Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking STRIBILD, your hepatitis may suddenly get worse. Do not stop taking STRIBILD without first talking to your healthcare provider, as they will need to monitor your health. STRIBILD is not approved for the treatment of HBV.

• Take a medicine that contains: alfuzosin, dihydroergotamine, ergotamine, methylergonovine, cisapride, lovastatin, simvastatin, pimozide, sildenafil when used for lung problems (Revatio®), triazolam, oral midazolam, rifampin or the herb St. John’s wort. • For a list of brand names for these medicines, please see the Brief Summary on the following pages.

• If you take hormone-based birth control (pills, patches, rings, shots, etc).

• Take any other medicines to treat HIV-1 infection, or the medicine adefovir (Hepsera®).

• If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD.

What are the other possible side effects of STRIBILD?

• If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD.

Do not take STRIBILD if you:

Serious side effects of STRIBILD may also include:

• 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 (not normal) 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.

• New or worse kidney problems, including kidney failure. Your healthcare provider should do regular blood and urine tests to check your kidneys before and during treatment with STRIBILD. If you develop kidney problems, your healthcare provider may tell you to stop taking STRIBILD.

• You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions.

• All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking STRIBILD without first talking with your healthcare provider.

Who should not take STRIBILD?

STRIBILD can cause serious side effects:

• Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain.

What should I tell my healthcare provider before taking STRIBILD?

• Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking STRIBILD. The most common side effects of STRIBILD include nausea and diarrhea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.

• If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in STRIBILD can pass into breast milk, and it is not known if this can harm the baby.

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 Brief Summary of full Prescribing Information with important warnings on the following pages.

STRIBILD is a prescription medicine used as a complete single-tablet regimen to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD does not cure HIV-1 or AIDS.

I started my personal revolution Talk to your healthcare provider about starting treatment. STRIBILD is a complete HIV-1 treatment in 1 pill, once a day. Ask if itâ&#x20AC;&#x2122;s right for you.

Patient Information STRIBILD® (STRY-bild) (elvitegravir 150 mg/cobicistat 150 mg/emtricitabine 200 mg/ tenofovir disoproxil fumarate 300 mg) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information. What is STRIBILD? • STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD is a complete regimen and should not be used with other HIV-1 medicines. • STRIBILD does not cure HIV-1 or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or reuse needles, injection equipment, or personal items that can have blood or body fluids on them. Do not have sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects, including: 1. Build-up of lactic acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take STRIBILD or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: • feel very weak or tired • have unusual (not normal) muscle pain • have trouble breathing • have stomach pain with nausea or vomiting • feel cold, especially in your arms and legs • feel dizzy or lightheaded • have a fast or irregular heartbeat 2. Severe liver problems. Severe liver problems can happen in people who take STRIBILD. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: • your skin or the white part of your eyes turns yellow (jaundice) • dark “tea-colored” urine • light-colored bowel movements (stools) • loss of appetite for several days or longer • nausea • stomach pain You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. 3. Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take STRIBILD, your HBV may get worse (flare-up) if you stop taking STRIBILD. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. • Do not run out of STRIBILD. Refill your prescription or talk to your healthcare provider before your STRIBILD is all gone

• Do not stop taking STRIBILD without first talking to your healthcare provider • If you stop taking STRIBILD, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking STRIBILD Who should not take STRIBILD? Do not take STRIBILD if you also take a medicine that contains: • adefovir (Hepsera®) • alfuzosin hydrochloride (Uroxatral®) • cisapride (Propulsid®, Propulsid Quicksolv®) • ergot-containing medicines, including: dihydroergotamine mesylate (D.H.E. 45®, Migranal®), ergotamine tartrate (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), and methylergonovine maleate (Ergotrate®, Methergine®) • lovastatin (Advicor®, Altoprev®, Mevacor®) • oral midazolam • pimozide (Orap®) • rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®) • sildenafil (Revatio®), when used for treating lung problems • simvastatin (Simcor®, Vytorin®, Zocor®) • triazolam (Halcion®) • the herb St. John’s wort Do not take STRIBILD if you also take any other HIV-1 medicines, including: • Other medicines that contain tenofovir (Atripla®, Complera®, Viread®, Truvada®) • Other medicines that contain emtricitabine, lamivudine, or ritonavir (Atripla®, Combivir®, Complera®, Emtriva®, Epivir® or Epivir-HBV®, Epzicom®, Kaletra®, Norvir®, Trizivir®, Truvada®) STRIBILD is not for use in people who are less than 18 years old. What are the possible side effects of STRIBILD? STRIBILD may cause the following serious side effects: • See “What is the most important information I should know about STRIBILD?” • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking STRIBILD. Your healthcare provider may tell you to stop taking STRIBILD if you develop new or worse kidney problems. • Bone problems can happen in some people who take STRIBILD. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones. • Changes in body fat can happen in people who take HIV-1 medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms and face may also happen. The exact cause and long-term health effects of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having any new symptoms after starting your HIV-1 medicine.

The most common side effects of STRIBILD include: • Nausea • Diarrhea Tell your healthcare provider if you have any side effect that bothers you or that does not go away. • These are not all the possible side effects of STRIBILD. For more information, ask your healthcare provider. • Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. What should I tell my healthcare provider before taking STRIBILD? Tell your healthcare provider about all your medical conditions, including: • If you have or had any kidney, bone, or liver problems, including hepatitis B infection • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. - There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk with your healthcare provider about how you can take part in this registry. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you take STRIBILD. - You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. - Two of the medicines in STRIBILD can pass to your baby in your breast milk. It is not known if the other medicines in STRIBILD can pass into your breast milk. - Talk with your healthcare provider about the best way to feed your baby. Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements: • STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. • Be sure to tell your healthcare provider if you take any of the following medicines: - Hormone-based birth control (pills, patches, rings, shots, etc) - Antacid medicines that contain aluminum, magnesium hydroxide, or calcium carbonate. Take antacids at least 2 hours before or after you take STRIBILD - Medicines to treat depression, organ transplant rejection, or high blood pressure - amiodarone (Cordarone®, Pacerone®) - atorvastatin (Lipitor®, Caduet®) - bepridil hydrochloride (Vascor®, Bepadin®) - bosentan (Tracleer®) - buspirone - carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®) - clarithromycin (Biaxin®, Prevpac®) - clonazepam (Klonopin®) - clorazepate (Gen-xene®, Tranxene®) - colchicine (Colcrys®) - medicines that contain dexamethasone - diazepam (Valium®)

- digoxin (Lanoxin®) - disopyramide (Norpace®) - estazolam - ethosuximide (Zarontin®) - flecainide (Tambocor®) - flurazepam - fluticasone (Flovent®, Flonase®, Flovent® Diskus®, Flovent® HFA, Veramyst®) - itraconazole (Sporanox®) - ketoconazole (Nizoral®) - lidocaine (Xylocaine®) - mexiletine - oxcarbazepine (Trileptal®) - perphenazine - phenobarbital (Luminal®) - phenytoin (Dilantin®, Phenytek®) - propafenone (Rythmol®) - quinidine (Neudexta®) - rifabutin (Mycobutin®) - rifapentine (Priftin®) - risperidone (Risperdal®, Risperdal Consta®) - salmeterol (Serevent®) or salmeterol when taken in combination with fluticasone (Advair Diskus®, Advair HFA®) - sildenafil (Viagra®), tadalafil (Cialis®) or vardenafil (Levitra®, Staxyn®), for the treatment of erectile dysfunction (ED). If you get dizzy or faint (low blood pressure), have vision changes or have an erection that last longer than 4 hours, call your healthcare provider or get medical help right away. - tadalafil (Adcirca®), for the treatment of pulmonary arterial hypertension - telithromycin (Ketek®) - thioridazine - voriconazole (Vfend®) - warfarin (Coumadin®, Jantoven®) - zolpidem (Ambien®, Edlular®, Intermezzo®, Zolpimist®) Know the medicines you take. Keep a list of all your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. Do not start any new medicines while you are taking STRIBILD without first talking with your healthcare provider. Keep STRIBILD and all medicines out of reach of children. This Brief Summary summarizes the most important information about STRIBILD. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about STRIBILD that is written for health professionals, or call 1-800-445-3235 or go to www.STRIBILD.com. Issued: October 2013

COMPLERA, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, the STRIBILD Logo, TRUVADA, and VIREAD are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. © 2014 Gilead Sciences, Inc. All rights reserved. STBC0076 03/14

COMMEMORATING

25 YEARS

What’s on

POSITIVELYAWARE.COM POSITIVELY AWARE JOURNALISM. INTEGRITY. HOPE.

Jeff Berry

ed itor- in - C hief

“The U.S. not only has one of the highest rates of incarceration in the world, but also one of the highest rates of HIV among people in its jails and prisons. Everyone has the same right to education, awareness, and proper healthcare regardless of whether they are ‘inside’ or ‘out.’ ”

HIV and sex workers Major findings of The Lancet special themed issue, HIV and sex workers, produced for the 20th International AIDS Conference. By Enid VÁzquez

HOW POSITIVELY AWARE saved my life When I tested HIV-positive I was given three publications—one of them was this magazine. By RICK GUASCO

Enid Vázquez

associate ed itor

“Thank God for heroes like Sean Strub, Carol Potok, Ken Willett, and Chad Zawitz in the fight for justice.”

Rick Guasco

C reativ e d irector

“It’s important that everyone has access to the information they need to stay healthy. It’s our job to present that information in a useful way.”

Get in the picture and fight stigma.

Jason Lancaster proo frea d er

contri b uting w riters

Laura Jones Carlos A. Perez Jim Pickett Andrew Reynolds Matt Sharp photographer

Chris Knight

adaywithhiv.com

a dv ertising

Lorraine Hayes

L.Hayes@tpan.com S u b scriptions

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SUITE 300 5050 N. Broadway St. Chicago, IL 60640-3016 phone: (773) 989–9400 fax : (773) 989–9494 email : inbox@tpan.com

P O S I T I V E LY AWA R E

A DAY WITH HIV 9/9/2014

SEP+OCT 2014

SEP+ OCT 2014 VO L U M E 2 6 N U M B E R 6

at the Opening Session of the 20th International aids conference. The Melbourne report Begins on page 38. BEHIND THE WALL

Departments

Hep C Drug Guide raves.

Readers Poll

editor’s Note

co v er Features

The dangers of HIV stigma in corrections How fear and ignorance fuel the epidemic.

8 PHOTO: © IAS-STEVE FORREST

In Box

HIV IN CORRECTIONS

By Chad Zawitz, MD with John Parisot, MSN, PhD

Musings on an epidemic.

Briefly WHO recommends PrEP and naloxone. Activists issue a call to action in The Atlanta Principles. Maria Davis joins I Design campaign.

My Kind of life

Strong enough to walk on through the night.

By Carlos A. Perez

HIV is not a crime Conference brings together international advocates to battle HIV criminalization.

Window of opportunity A view from the trenches on the importance of HIV counseling and education. By Kenneth J. Willett, MA, LPC

Hepatitis C in corrections Prison health is public health. By Andrew Reynolds

By Todd Heywood

Mothers’ helping hands Alabama’s Aid to Inmate Mothers tends to both medical and emotional needs. By Enid Vázquez

special section

AIDS 2014: The Melbourne Report Stepping up the pace. ART for everyone. Cure update by Matt Sharp. Plus, a Really Rapid Review by Paul Sax, MD.

SEP+OCT 2014

P O S I T I V E LY AWA R E

INBOX@TPAN.COM

READERS POLL

Raves for the HCV DRUG GUIDe

[The HCV drug guide] is fantastic. The only suggestion I’d make for future editions is to please put the generic names on the manufacturer/PAP chart. Many of us try to mentally block out brand names to subvert the branding of drugs, so being able to think, for example, “sofosbuvir” and then find it under “Sovaldi/Gilead” on the PAP chart would be helpful. —Paul Quick via Facebook

I wanted to send a quick e-mail to provide feedback on the wonderful Hepatitis C Drug Guide you recently posted [July+ August 2014]. I have been involved in HIV care and education for more than 25 years and more recently have also been working in the viral hepatitis field. The guide is very well-organized, up-to-date, and laid out with great images, figures, and tables. Again, congratulations on putting together a superb educational document. —David Spach, MD

HIV as a family of our own. There is so much discrimination against gay people to begin with and although I am not gay or bi, people who are ignorant automatically associate HIV with being gay, so there are a lot of obstacles associated with HIV. I have a double stigma against me because I have HIV and I’m in prison, where we are definitely forgotten by society. I know what it feels like to want to just be accepted as a human being. Thanks to places like PA and TPAN and all the other organizations involved with HIV/AIDS, I have come to accept my status and come out of this shell I’ve lived in for too many years.

Knowledge

Thanks for all the work you have done for our community. Not having access to the “information highway” of the Internet, I have depended on your magazine for years for news of how to deal with this insidious disease.

I never thought I would live to see 45 years of age, but I’ve made it this far. Now I regret having thrown away so many good years. I have been blessed so many times because technically I should be dead. I had an opportunistic infection once and my T-cells dropped to below 200, besides the fact I had been using so many drugs and doing burglaries in which someone could have come home and shot me dead if they saw me. Today, for the first time in my life since I found out I was positive I’m in a better place mentally than I have ever been. I do not want to waste the rest of my life, so I became involved with a class here called PACE, learning about HIV and other STIs. I could have gotten involved with organizations such as TPAN and gotten to be around what I now call my own kind. Because of the huge stigma attached to HIV, I think of every one with 6

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Have you ever been the target of HIV stigma or discrimination? vote at positivelyaware.com or on facebook: https://a.pgtb.me/ffPCjX

Let’s CONNECT. All communications

(letters, email, online posts, etc.) are treated as letters to the editor unless otherwise instructed. We reserve the right to edit for length, style, or clarity. Let us if know you prefer we not use your name and city. You can also write: Positively Aware, 5050 N. Broadway St., Suite 300, Chicago, IL 60640-3016.

Fall River, MA

We’re Everywhere

University of Washington, Seattle

Stigma in prison

This issue’s question

—John Parks Woodbourne, NY

Professor of Medicine Division of Infectious Diseases

How great is the Berlin patient [July + August issue]? A cure is possible. Hip, hip hooray! Thank you for the knowledge. —Terry Shanley Huntsville, TX

© 2014. Positively Aware (ISSN: 15232883) is published bi-monthly by Test Positive Aware Network (TPAN), 5050 N. Broadway St., Suite 300, Chicago, IL 60640. TPAN is an Illinois not-for-profit corporation, providing information and support to anyone concerned with HIV and AIDS issues. Positively Aware is a registered trademark of TPAN. All rights reserved. Circulation: 100,000. For reprint permission, send email to inbox@tpan.com. Six issues mailed bulk rate for $30 donation; mailed free to those living with HIV or those unable to contribute. We accept submission of articles covering medical or personal aspects of HIV/AIDS, and reserve the right to edit or decline submitted articles. When published, the articles become the property of TPAN, Positively Aware, and its assigns. You may use your actual name or a pseudonym for publication, but please include your name, email address, and phone number with your story. Although Positively Aware takes great care to ensure the accuracy of all the information it presents, Positively Aware staff and volunteers, TPAN, or the institutions and personnel who provide us with information cannot be held responsible for any damages, direct or consequential, that arise from use of this material or due to errors contained herein. Opinions expressed in Positively Aware are not necessarily those of staff or TPAN, its supporters and sponsors, or distributing agencies. Information, resources, and advertising in Positively Aware do not constitute endorsement or recommendation of any medical treatment or product. TPAN recommends that all medical treatments or products be discussed thoroughly and frankly with a licensed and fully HIVinformed medical practitioner, preferably a personal physician. A model, photographer, or author’s HIV status should not be assumed based on their appearance in Positively Aware, association with TPAN, or contributions to this journal.

Editor’s Note Jeff Berry

Musings on an epidemic his month marks an anniversary for me of sorts, 25 years since I tested HIV positive. I’ve never been quite sure what the exact day should be: Is it the day I actually took the test, September 13, 1989? Or when I received the results a week later? Regardless, I thought this might be a good time to share some random thoughts about living with HIV for the past quarter of a century.

Thank god for insurance. Side effects suck. A good doctor is everything. Side effects suck.

The stigma around drug use, sex, and HIV create the perfect storm…and I got caught in the eye.

Side effects really suck.

Missing a dose of medication is like falling off the wagon. Okay, you screwed up, but don’t beat yourself up. Move on, and do better next time.

Thank god for facial fillers.

I thought I was supposed to be dead…now what?

I never knew how important friends and family were until I needed them the most, and they were there for me.

I thought you were dead! (Someone actually once said this to me.)

Louise Hay was an inspiration.

Print is not dead (thankfully).

Louise Hay was crazy.

I’m grateful for having been given a second chance.

A higher power is not the same thing as a confidence interval.

I’m thankful for (in no particular order) my doctor, dentist, lawyer, neighbors, peers, colleagues, friends, family, job, co-workers, partner, dog, and two cats.

Thank god for medications that have kept me alive.

Do something productive with your life. I miss my old life. Sometimes. I miss my friends who I’ve lost. There truly is a community of PLWHIV, and they can be strong, courageous, and inspiring—and sometimes downright maddening. Always keep a spare disposable diaper on hand. Imodium is your new best friend. When someone stares at you a little too long because you have “the look,” give them the finger. Or ignore them. Whatever works. Photo: CHRIS KNIGHT

I am not “unclean,” nor am I riddled with disease. “Clean and disease-free” is what you might call a nail salon, or a laboratory…not a human being.

If there was PrEP in 1989, I would have been on it in a heartbeat.

I thought this might be a good time to share some random thoughts about living with HIV for the past quarter of a century.

Follow Jeff @PAEDITOR

Don’t take life too seriously. Don’t take your CD4s too seriously if they fluctuate a little. Please don’t let me die before my mom. (I didn’t.) If I could have one more conversation with my dad, I would say, “I forgive you,” and I would ask him, “If you had one thing in your life you could have done differently, what would it be?” Life’s too short to be filled with regret. Learn from your mistakes.

Take care of yourself and each other.

SEP+OCT 2014

P O S I T I V E LY AWA R E

Briefly ENID VÁzquez

WHO promotes PrEP and naloxone

PrEP videos focus on young gay men For the second anniversary of the FDA’s approval of Truvada for PrEP in July, the National Minority AIDS Council (NMAC) launched an educational project about the HIV prevention strategy. “ NMAC is thrilled to launch its ‘PrEPare for Life’ program, including an online resource page and the first of its peer-based education videos,” wrote Moises Agosto, the agency’s Director of Treatment Education, Adherence, and Mobilization. “The videos, along

HIV criminalization In July, the U.S. Department of Justice (DOJ) issued a “best practices guide” to help states reform their HIV criminalization laws. According to the document, “Generally, the best practice would be for states to reform these laws to eliminate HIV-specific criminal penalties except in two distinct circumstances. First, states may wish to retain criminal liability when a person who knows he/she is HIV-positive commits a (non-HIV specific) sex crime where there is a risk of transmission (e.g., rape or other sexual assault). The second circumstance is where the individual knows he/she is HIV-positive and the evidence clearly demonstrates that individual’s intent was to transmit the virus and that the behavior engaged in had a significant risk of transmission, whether or not transmission actually occurred.” The DOJ noted that the laws “place unique and additional burdens on individuals living with HIV” and, per the National HIV/AIDS Strategy, “run counter to scientific evidence about routes of HIV transmission and may undermine the public health goals of promoting HIV screening and treatment.” Read the guide at aids.gov/federal-resources/ national-hiv-aids-strategy/doj-hiv-criminal-law-best-practices-guide.pdf. 8

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with the other resources provided online, aim to amplify the voices of young gay men of color and allow them to share what they think about PrEP’s potential to impact their health, enhance their sexuality, and improve their quality of life.” While reaching out specifically to men of color, all young gay, bisexual, or same-gender-loving men are invited to participate. Go to nmac.org/ prepareforlife. Read Agosto’s entire message at positivelyaware.com.

Activists seeking to end AIDS release The Atlanta Principles HIV/AIDS activists in June issued “The Atlanta Principles” in a push to end the U.S. AIDS epidemic. “Today there are multiple means of HIV prevention, and they involve both people who are living with HIV and people who are HIV-negative….To HIV activists and service providers from affected communities, CDC has often seemed eerily absent from this freshly challenging, rapidly changing prevention landscape,” said the document from ACT UP, on behalf of the activist coalition. Among the demands: greater use of HIV therapy in positive individuals to help lower the rate of transmission, and the promotion of PrEP medication to help HIV-negative people at risk from contracting the virus. See the document at actupny.com/actions/files/ The_Atlanta_Principles.pdf.

ENid Vázquez: CHRIS KNIGHT Maria Davis COURTESY OF MERCK & CO.

The World Health Organization (WHO) has added two new recommendations to its guidelines on HIV prevention and care for five key populations: men who have sex with men (MSM); sex workers; and people who are transgender, in prison, or inject drugs. According to a WHO press release, “These people are most at risk of HIV infection yet are least likely to have access to HIV prevention, testing, and treatment services.” “None of these people live in isolation,” said Dr. Gottfried Hirnschall, director of the HIV Department at WHO, in the release. “Sex workers and their clients have husbands, wives, and partners. Some inject drugs. Many have children. Failure to provide services to the people who are at greatest risk of HIV jeopardizes further progress against the global epidemic and threatens the health and well-being of individuals, their families, and the broader community.” PrEP (pre-exposure prophylaxis) is now strongly recommended as an “an additional HIV prevention choice within a comprehensive HIV prevention package” for MSM; and “people likely to witness an opioid overdose should have access to naloxone and be instructed in its use for emergency management of suspected opioid overdose.” The policies focus on the protection of human rights in addition to medical access. Read more at who.int/mediacentre/news/releases/2014/ key-populations-to-hiv/en.

Follow Enid @ENIDVAZQUEZPA

Promoting buprenorphine for addiction treatment Buprenorphine, a medication used for the treatment of opioid addiction, has been very successful but remains underused, according to a Senate forum held in June by U.S. Senators Orrin Hatch (R-Utah) and Carl Levin (D-Michigan). They sponsored the Drug Addiction Treatment Act (DATA 2000) allowing doctors to prescribe buprenorphine for up to 30 patients. The medication was not FDA approved until 2002. Senators Hatch and Levin held a forum in 2006 on buprenorphine use, after which the limit of patients was increased from 30 to 100. That limit needs to be increased again or removed altogether, according to the new forum. “While law enforcement will always play a role in protecting our communities from drug-related violence, at the end of the day we cannot incarcerate our way out of this challenge,” said Michael Botticelli, Acting Director of the White House Office of National Drug Control Policy. Among the issues raised was the lack of doctors to prescribe buprenorphine: just 4% of all physicians eligible for certification prescribe it, and less than a third of addiction specialists. The three-hour forum is available on Sen. Levin’s YouTube page: youtube.com/watch?v=dXpFFwC-nZQ. Special thanks to Addiction Treatment Forum for bringing this story to our attention.

Maria Davis joins I Design HIV activist, music industry promoter, and former model Maria Davis has joined the I Design awareness campaign of Merck (maker of Isentress). Davis unknowingly contracted HIV in 1995 from the man she was planning to marry. She has worked with Life Beat: Music Industry Fights HIV and BET’s Rap It Up Community Service, among other

advocacy and awareness efforts. She will reach out specifically to women as I Design teams up with the Positive Women’s NetworkUSA (PWN-USA) to promote better care and encourage assertive discussions with medical providers. Davis joins two advocates in the I Design campaign, fashion designer Mondo Guerra of Project Runway and photographer Duane Cramer, both also living with HIV. Go to projectidesign.com.

Storytelling in trauma study helps support HIV-positive women The University of California-San Francisco (UCSF) reports that a therapy group intervention started for incarcerated women in that city in 1989 has helped HIV-positive women in its clinic improve their lives and their social support system. “Medication alone is totally insufficient,” said the study’s first author, Edward L. Machtinger, MD, director of the Women’s HIV Program at UCSF, in a UCSF press release. “Over 90 percent of our patients are on effective antiretroviral therapy but far too many are dying from suicide, addiction, and violence. Depression, addiction, and especially trauma are very common and often devastating for women with HIV but are not being effectively addressed by most clinics. We believe that helping women develop the skills and confidence to tell their stories publicly will reduce their isolation and be the first step towards their becoming genuinely healthy. We partnered with The Medea Project to deliver an effective expressive therapy intervention that starts to address the primary causes of death in our patients.” The Positive Women’s Network-USA (PWN-USA) stated in a press release, “These study results add proof to what HIV advocates have noted for years, and clinical studies have begun to document: that addressing and healing effects of trauma may be key to improving health for women with HIV.” In a comment posted to an interview with Dr. Machtinger by activist Julie Davids on TheBody.com, executive director Naina Devi wrote, “[PWN-USA] believes implementing trauma-informed primary care practices has the potential to change the continuum of care in the U.S. for all communities disproportionately impacted by HIV.” Read the UCSF press release at ucsf.edu/news/2014/07/115886/“expressivetherapy”-intervention-assists-women-living-hiv and PWN-USA’s press release at pwnusa.wordpress. com/2014/07/16pwn-usa-congratulates-ucsf-traumastudy/. SEP+OCT 2014

P O S I T I V E LY AWA R E

Briefly New hep C recommendations

HIV prevention debuts in novel The novel Sally Field Can Play the Transsexual, by Leslie L. Smith, released in May, is the first to talk about the HIV prevention methods PEP and PrEP. A gay male escort loses his mentor to AIDS, but gains a ghost and a journey that includes a transgender nurse and a young artist promoting AIDS education. The seriocomic story looks at 25 years of the epidemic in the history of gay men.

estimated number of People in the U.S. who are chronically infected with HCV; approximately half are unaware of their status.

The hepatitis C treatment guidelines from the American Association for the Study of Liver Diseases (AASLD) and the Infectious Diseases Society of America (IDSA), in collaboration with the International Antiviral Society-USA (IAS-USA), have been updated to include information on prioritizing patients under conditions of limited resources. Visit HCVguidance.org. IDSA noted in a press release, “Highest priority should be given to patients with advanced fibrosis with compensated cirrhosis and liver transplant recipients and high priority given to patients at high risk for liver-related complications and severe extrahepatic HCV complications. The guidance provides further detailed information on additional conditions that warrant prioritization of treatment.” The new section also looks at the greatest impact on limiting further HCV transmission.

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Carol Potok with some of the women at the Tutweiler Prison for Women, during an educational event.

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HIV alone didnâ&#x20AC;&#x2122;t cause the clogged artery in my neck. Smoking with HIV did. Brian, age 45, California

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POSITIVELY AWARE

COMMEMORATING 25 YEARS OF BEING POSITIVELY AWARE Imprisonment brings a stigma, which having HIV only makes worse, wrote PA Associate Editor Enid Vázquez in the opening of her May/June 1996 cover story, “Prison within a Prison.” Jackie Walker, AIDS Information Coordinator for the National Prison Project of the American Civil Liberties Union at the time, was quoted in the story: “The policies are not designed to keep prisoners alive.” Ironically, prisoners are the only group of Americans with a constitutional right to “reasonably adequate medical care,” according to a 1989 ruling by the federal Second Circuit Court, wrote Vázquez. But as part of a “get tough on crime” approach, many correctional facilities often made it difficult to get treatment or information about HIV. A number of states segregated their HIV-positive inmates. By 2006, however, the number of HIVsegregating states had dwindled to three— Alabama, Mississippi, and South Carolina, according to Margaret Winter, the present Associate Director of the ACLU’s National

Prison Project. It took a series of major court battles by the ACLU over a period of more than two decades to finally put an end to the practice in 2012.

ALSO in the issue: Then-editor Steve McGuire recalled TPAN executive director Michael Thurnherr, who had died two months earlier. A self-described “angry AIDS activist” who had become beloved within Chicago’s HIV community, Thurnherr succumbed to complications of AIDS before his 30th birthday. With three protease inhibitors on the market as of March, tens of thousands of people living with HIV will soon be testing the benefits of these new drugs,

wrote Vázquez about the recently approved Norvir, Crixivan, and Invirase. “What we know from other diseases is that if you can hit an organism at two different spots, that’s a powerful therapy,” said Joseph Eron, MD, director of the Infectious Disease Clinic at the University of North Carolina at Chapel Hill. Because protease inhibitors were so new, there was concern insurance companies would refuse to pay for the drugs. Using a computer and a modem, people can have access to literally a world of information, whether from a local HIV organization or from a doctor halfway around the globe, said a now amusingly outdated story about the emergence of the Internet as a tool for —RICK GUASCO people living with HIV.

HIV IN CORRECTIONS

BEHIND THE WALL

The Dangers of HIV Stig How fear and ignorance fuel the epidemic By Chad Zawitz, MD, with John PArisot, MSN, PhD

n the confined “society” of a correctional facility, privacy is frequently an illusion, and one’s reputation becomes extremely crucial to maintaining safety and well-being. Out in the larger world, HIV continues to engender fear, prejudice, and discrimination despite 30 years of massive public health initiatives, availability of effective treatments, education campaigns, and media attention. In a closed facility, these negative attitudes are even more problematic.

People living with HIV experience stigma, defined as “a set of negative and often unfair beliefs that a society or group of people have about something; a mark of disgrace or infamy; a stain or reproach, as on one’s reputation.” These definitions point to a sense of “otherness” about the subject of the stigma, and the idea that someone’s reputation or identity is being negatively judged. These can all have devastating effects on the target of the stigma. Consider if someone were to disclose having diabetes or arthritis, as opposed to HIV, and needed to seek treatment, and one begins to understand the fear, secrecy, and shame that is often associated with getting tested, seeking care, or having one’s family or friends find out. Stigma comes from others’ judgment regarding the behavior that may have resulted in HIV infection, whether it is due to sexual activity or drug use, and the disapproval that accompanies the speculation about such behavior. I have worked at the Cook County Jail in Chicago for the past 10 years. In that time, I have witnessed multiple aspects of the unfortunate truth of HIV stigma.

Intake Detainees and inmates who know their HIV-positive status generally must disclose this information to a healthcare 16

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provider in order to receive HIV care. The first opportunity to do so occurs at the time of intake. Most jails and prisons have a processing area where those “on the new” have a medical screening. Privacy and trust may be difficult to come by in such settings, and some detainees elect to withhold this information out of fear or concern that other detainees or officers will find out. Why would they be concerned about HIV, but be less concerned should someone hear they are a diabetic, have seizures, or even other infections such as hepatitis C? Clearly the stigma associated with HIV plays a paramount role.

Access to care Beyond disclosure at intake, stigma may lead to other barriers to proper HIV care behind bars. In our experience at Cook County Jail, some patients do not want to take their medications because other detainees may ask what they are for. Some do not want to get into (or stay in) care, be brought to clinic, or get labs for fear of their HIV status being discovered by other detainees or correctional staff. However, the vast majority of staff (doctors, nurses, officers, etc.) act with professionalism and do not express stimatizing attitudes or behaviors, just like in the real world.

ma in Corrections Life in corrections is truly that of “life in a fishbowl,” where one’s activity and behaviors are readily and constantly observed. In the “outside world,” patients can usually engage in medical services without others’ awareness, but in a correctional facility where the living quarters are confined, one does not have that luxury. Literally, the fear of disease progression and even death take a back seat to the stigma of being outed as HIV-positive while in custody. This can have a negative effect on the health outcome of persons living with HIV in a correctional setting and increase the community viral load, that is, the average viral load in a group or community. The higher the community viral load, the greater the overall risk of transmission in a setting.

Sexual activity

Photo: Ron Chapple Stock

One of the greatEST taboos of

corrections is the concept of inmates having consensual sexual relations with each other. The reality is that it does occur and is quite common. In the United States, most jail and prison systems still prohibit the distribution and use of condoms to prevent disease transmission. This essentially guarantees that almost all intimate contact is high-risk, including the risk of HIV transmission. As part of our clinical duties, we inquire about the sexual activity of our HIVpositive patients. A small but significant segment of them openly disclose that they are engaging in various sexual practices during incarceration. We also ask if they are disclosing their HIV status to their sexual partners. Many patients are reluctant to disclose their HIV status to sex partners in jail. Most claim they do, but a few state they

are afraid to. They fear not only rejection but possible physical retaliation, criminal charges, discipline by the Department of Corrections, and being “outed” to others in their living unit without the ability to separate themselves. In many ways, this parallels the real world with the exception of personal freedom to physically escape (and Department of Corrections discipline for violating sexual conduct policy). This also underscores the importance of protecting one’s reputation and privacy in a confined and artificial environment from which there is no escape. Awareness of a person’s HIV status may lead to stigma, ostracization, and isolation, and potentially increases vulnerability to physical attacks. During our tenure at Cook County Jail, our team has worked with detainees who are having sex as serodiscordant couples. The negative partner may be desperate for information about the other partner’s HIV status if that person does not disclose, or denies, being HIV-positive. We are legally obligated to protect the positive partner’s status, but encourage that person to disclose voluntarily. At any rate, many detainees are so demoralized and psychologically beaten down that they do not really care if they are having sex with someone who they know is HIV-positive; out of resignation, they simply do not care.

Suicidal feelings What are the psychosocial effects of stigma? The Kenyan writer Dennis Nyakundi Onguti from takingitglobal.org puts it well: “A person socially isolated, neglected, or rejected gets a feeling of loneliness, selfhate, regrets, self-blame, and bitterness

which leads to depression. At the same time, the infected person loses a feeling of self-love, value, and dignity which [may] make one lose the will to live.” In our practice, we have dealt with some newly diagnosed individuals who expressed a desire to kill themselves; in fact, one client went into a clinic bathroom and tried to hang herself. Persons living with HIV in a correctional setting need extra support and encouragement by their medical providers, and should be offered referrals to mental health services as they seek to cope with the stressors of an HIV diagnosis and the feelings of isolation and stigma that may come with it while incarcerated.

Slang Language is used to communicate

stigma, and jail and prison inmates have developed their own slang terminology for HIV: The Blickey. The Package. The Monster. The Green Monkey. The Die-slow. The Book Bag. When I first heard a detainee at Cook County Jail refer to another detainee they believed was HIV-positive as someone with “The Package,” I was intrigued. It was 2004, during the era when some common HIV medication regimens included large numbers of pills, sometimes multiple times a day. I thought it was called “The Package” because the medications were delivered with one week’s supply at a time in a bundle wrapped with a rubber band—a package of pills. I assumed the detainees perceived anyone receiving such a bundle could only be requiring so many pills because they were HIV-positive. However, I was unable to find the true origin despite asking many detainees through the years, as well as the ever-useful Google search. SEP+OCT 2014

P O S I T I V E LY AWA R E

BEHIND THE WALL

HIV IN CORRECTIONS

Slang terminology serves a number of purposes in corrections. One of these is to stigmatize certain differences between people. This includes race, age, gender identity, sexual preference, power differentials, religious beliefs, and many others, including one’s HIV status. No one likes to be called names, but this is especially true when a name serves the singular purpose of attaching shame, fear, disgust, and other negative connotations to the recipient.

Misinformation In our opinion, the single biggest

factor associated with HIV stigma in corrections is inaccurate information about how HIV is transmitted and how contagious it is (or is not). Misinformation creates irrational behavior and misperceptions of personal risk. Because HIV is a potentially life-threatening infection, people react to it in strong ways. Some anecdotes that we have heard repeatedly from patients include cellmates requesting a transfer, tier-mates requesting that the HIV patient be moved to another area, requests for chemical disinfectants to wipe down shared sinks and toilets, and even grievances filed claiming personal safety is being jeopardized by being housed near an HIV patient. We have also worked with many patients who experience a monumental shift in attitude once properly informed of how HIV is transmitted and managed, and its prognosis. Education clearly reduces HIV stigma. Nowhere is this more evident than with the newly diagnosed patient. Once the initial shock of being diagnosed is over, the discussion shifts to the importance of privacy and disclosure, modes of transmission, and other HIV basics. Most patients admit to us they are concerned others will find out and that they will become stigmatized. Some of them acknowledge that they themselves have ridiculed or ostracized an HIV patient before learning their own status.

Testing HIV testing is becoming an increasingly common practice in many jail and prison systems. This is sometimes done through 18

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opt-out testing, meaning every inmate is tested as part of standard procedures unless they refuse. One of the benefits of such a strategy is to destigmatize the test itself. Some inmates want to be tested, but due to stigma, are afraid to agree to it. If they go for the test, another inmate may perceive that as “what have you been doing that you need to be checked?” If someone declines testing, others may suspect that he or she is already HIV-positive. In Cook County Jail, it has been our experience that many patients who already know they have HIV undergo testing so as not to draw attention to not getting tested. This is also a mechanism of discreet disclosure in order to access care. They know someone will be reviewing their test and will ultimately call them to a clinical area for an assessment. By making testing something that everyone undergoes, there can be no finger pointing or assumptions as to why such a test is being done. Beyond this, the stigma of not wanting to get tested ultimately leads to disease transmission and disease progression. Data from research clearly shows that half of all new HIV diagnoses are being transmitted by those who do not know their own status (20%, or one out of five, people with HIV in the United States currently do not know they have it). HIV testing at Cook County Jail has led to many newly diagnosed individuals. It is still shocking to me how many of them are surprised by their diagnosis despite the fact that they admit to any number of high-risk activities. I frequently hear: “How did I get this?” This question comes most frequently from young men who self-identify as heterosexual. To them, HIV is still perceived as a “gay disease” or a disease of other “bad” behaviors. HIV infection is associated with behaviors that are stigmatized in many societies (such as homosexuality, substance use or abuse, sex work, or having multiple partners), hence some of the stigma associated with HIV. It is this misinformation or lack of information that continues to lead to the stigma associated with HIV. Information that many take for granted as common knowledge is somehow absent from a significant subset of our community, and it is clearly associated with the ongoing transmission of HIV.

By documenting incidents of stigmatization, one can address the situations on a case-by-case basis, being sensitive to protecting those who report such experiences. This however requires resources and staff that we simply do not have, not to mention appropriate follow-up and interventions.

Is it denial? Or again: “It’s them and not me!” One theory behind this is that due to HIV being stigmatized as a disease of homosexuals, commercial sex workers, and intravenous drug users, some people may actively tune out health education messaging they feel does not apply to them.

Homophobia Homophobia and transphobia

(hatred against transgender persons), regardless of HIV status, are rampant in corrections. People have been assaulted and even killed for being gay or transgender. In a correctional environment, everything is hypermasculinized, paramilitary, and heterocentric, with little tolerance for anything or anyone that deviates from the norm. With sexual “otherness” (LGBTQ) comes stigma, and the potential assumption about being HIV positive, again an unfair and unjustified assumption.

Moral judgment Religious or moral beliefs lead some people to believe that being infected with HIV is the result of moral fault (such as promiscuity or “deviant sex”) that deserves to be punished. One might think that a jail or prison should be the last place where someone could be self-righteous. Ironically, a correctional environment is sometimes a place where persons readily profess their morality or discover new moral frameworks for themselves as a result of their incarceration. It is human nature that one feels better about himself or herself if they can judge someone else for some objectionable behavior or condition.

Staff judgment There may also be stigma from cor-

rectional staff and other providers. The jail can be a stressful place to work, and sometimes staff lose their composure and treat persons with HIV less than respectfully, or may potentially compromise medical privacy. Staff may suspect one’s HIV status merely by the medical provider that he or she sees. There also may be a sense by correctional staff that by being incarcerated, detainees are not entitled to the same level

of privacy protection as in the “outside world,” although all detainees are innocent until proven guilty. With the safety of all detainees being a priority, some detainees are placed in protective custody, which can further stigmatize and differentiate individuals, because this population may include a higher prevalence of openly gay-identified, bisexual, or transgender individuals. Above all, the jail is a place that makes individuals more vulnerable than in the “outside world.” The Prison Rape Elimination Act (PREA) of 2003 makes it necessary to identify those detainees who are at high risk for being sexually abused while confined. Inmates are screened and placed in protective custody if they are deemed potentially vulnerable for being targeted by sexual predators. Some of the criteria used to profile persons who may be at increased vulnerability include: physical build; age; disability; being gay, bisexual or transgender, or being perceived as such; and a history of being victimized or being a sexual predator. People may make assumptions about those who are in protective custody and their HIV status, leading to stigmatization, discrimination, and negative attitudes towards these detainees who are differentiated from the general population. One inadvertent effect of this protective isolation may be to increase the stigmatization of those who it is meant to protect.

Ending stigma In an editorial for the Washington

Post, UN Secretary-General Ban Ki Moon stated: “Stigma remains the single most important barrier to public action. It is a main reason why too many people are afraid to see a doctor to determine whether they have the disease, or to seek treatment if so. It helps make AIDS the silent killer, because people fear the social disgrace of speaking about it, or taking easily available precautions. Stigma is a chief reason why the AIDS epidemic continues to devastate societies around the world.” So what can be done? The Stigma Action Network (SAN) (stigmaactionnetwork.org) provides plentiful resources and opportunities to use social media to get involved

to help fight HIV stigma. The Global AIDS Response Progress Reporting 2014 suggests that, “It would also be advisable to routinely collect data from people living with HIV about actual experiences of stigma and discrimination via the PLHIV Stigma Index process (stigmaindex.org) and compare findings with the data derived from the discriminatory attitudes indicator.” By documenting incidents of stigmatization, one can address the situations on a case-by-case basis, being sensitive to protecting those who report such experiences. This however requires resources and staff that we simply do not have, not to mention appropriate follow-up and interventions. As we have seen, correcting misinformation and educating people on modes of transmission and contagion, the effective management of the virus and prognosis, and the fact that HIV is not just a “gay disease” can go a long way in reducing stigma in the public at large and in correctional facilities.

Chad Zawitz, MD, is a Board Certified Infectious Diseases specialist at Cook County Jail in Chicago. He received his Infectious Diseases training at Rush University Medical Center in Chicago and Internal Medicine training at the University of Pittsburgh. He is the Director of the Continuity of Care Clinic for HIV-positive detainees at both the jail and the nearby county-run CORE Center. He is also a Certified Correctional Healthcare Provider (CCHP). Dr. Zawitz has worked exclusively with the incarcerated population in Chicago for more than 10 years. His academic interests include virology (HIV/HCV), correctional healthcare, public health, and LGTBQ health. John Parisot, PhD, MSN, RN, managed an HIV prevention grant studying the sexual behaviors of the incarcerated population at Cook County Jail. He recently completed his MSN at Rush University and is a practicing nurse at Trilogy Behavioral Healthcare (a community-based mental health treatment center in the Rogers Park neighborhood of Chicago), and has a PhD from the University of Wisconsin.

SEP+OCT 2014

P O S I T I V E LY AWA R E

BEHIND THE WALL

HIV IN CORRECTIONS

Nick Rhoades whispers into the ear of Iowa State Sen. Matt McCoy following a ceremony in Grinnell, Iowa. The lawmaker cut Rhoades’ GPS tether off his leg, in celebration of a new law that, among other things, removes the sex offender registration requirement for those convicted under the infectious disease law in that state.

HIV Is Not a CRIME

Conference brings together international advocates to battle HIV criminalization By Todd Heywood

early 200 advocates interested in the growing battle against criminalizing people living with HIV converged on the small college town of Grinnell, Iowa in June to begin the process of forming a national movement. HIV criminalization is broadly defined as prosecuting people, or subjecting them to greater sentences, because of their HIV-positive status.

Michigan is a leader in prosecuting people with HIV. Michigan has seen cases involving its disclosure law, bioterrorism cases, and, in one instance, a situation where a woman was issued a marijuana possession ticket because she failed to disclose her HIV status to a police officer in Dearborn—despite not being legally obligated to do so. The Sero Project, a national organization fighting HIV criminalization, put the HIV is

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Not a Crime conference together. Sero is run by Sean Strub, founding publisher of Poz magazine, and a longtime HIV activist. “The Grinnell gathering was important because it was the first national conference specifically addressing HIV criminalization and because it was one of the largest national gatherings, in recent years, of people with HIV engaged in advocacy,” said Strub. “It also was important because the attendees more closely reflected the epidemic than

most conferences and because the conference, for many, marked the rejuvenation of the people with HIV empowerment movement. Those attending the conference left inspired, refreshed, and with a renewed commitment to fight for change; one only needs to look at some of the Facebook comments to see what those who participated are saying and how much it meant to them.” Attendees were involved in developing talking points related to HIV criminalization, learning how to work social media to drive conversations and agendas, and discussing the political processes related to lobbying for legislation on the state and national levels.

Photo:

Iowa was front and center in the discussions and events during the conference. The previous week, Republican Gov. Terry Branstad signed the nation’s first modernization law for an HIV specific law. Before the new legislation was signed into law, any person living with HIV accused of engaging in sexual activity without disclosing his or her HIV status could face up to 25 years in prison and 10 or more years on the state’s sex offender registry. The modernization legislation passed both houses of the Iowa legislature with unanimous support. The law now requires prosecutors prove an intent to transmit specific diseases, including HIV, hepatitis, and TB and allows defendants to mitigate allegations by showing they took action to reduce the potential risk of transmission by following medical advice. In addition it also removed the requirement TODD HEYWOOD that those convicted under the law be listed on the state’s sex offender list. That provision was also backdated, allowing those who had been convicted previously to be removed from the list, effective July 1. In celebration of the new law, two men convicted under the old law—Donald Bogardus and Nick Rhoades—had their court-ordered GPS bracelets cut off by Democratic state senator Matt McCoy. McCoy had led the battle in the state legislature to modernize Iowa’s law.

The conference was also important for the larger international movement to address HIV criminalization, says Edwin Bernard, who runs the HIV Justice Network monitoring HIV criminalization across the world. “From an international perspective, it’s very important,” Bernard said. “HIV criminalization is an international phenomenon but unfortunately the United States leads the world in terms of the sheer number of poorly drafted, unscientific, HIV-specific criminal laws that result in so many unjust and unwarranted prosecutions, not only for potential or perceived sexual exposure but also for biting and spitting, and for soliciting for sex while HIV-positive. The most worrying trend today in HIV criminalization is taking place in sub-Saharan Africa. Around 30 different countries have passed new, vague, and overly broad HIV criminal laws since 2001. Many of these problematic laws are based on a ‘model law’ funded and promoted by USAID—the U.S. Agency for International Development, whose motto is ‘from the American people.’ So what happens in the United States affects the rest of the world, too. I’m hopeful that African law and policy makers, and people living with HIV and their allies, will be able to use the U.S. movement to address these laws as leverage to repeal or modernize these unjust and harmful HIV laws in Africa [and elsewhere].” Michigan was well represented at the conference. Jon Hoadley, who is running as a Democrat for state representative in Kalamazoo, was in attendance and is helping to coordinate a coalition to modernize Michigan’s law. “Michigan is engaging in cutting-edge

advocacy on HIV criminalization reform, and I was proud to be part of the first national conference learning from successes in other states,” Hoadley said. He noted Michigan will face unique challenges in addressing its laws, but is confident that the state can join Iowa in reforming its HIV law. Laurel Sprague, a professor at Eastern Michigan University and a staffer at The Sero Project, was also in attendance. She said the conference was particularly successful because it had brought together a truly diverse group of people representing those most impacted by the HIV epidemic in the U.S.—women, people of color, transwomen, and others. “The Grinnell gathering created space for leaders within communities of women, poor people, and people of color—all living with HIV—to join together to hear each other’s experiences and build shared understandings and approaches to fight unjust criminal laws and the fear-based and intolerant attitudes that undergird those laws,” Sprague said. For Kevin Geirman, who works for a Grand Rapids, Michigan AIDS service organization, the conference was important, and challenging. “On a personal note, I’m still unraveling the ways I was challenged and how I can implement movement in my immediate community,” he said. “My heart was stirred by the personal stories that I was privileged to hear and I’m inspired to identify more stories to add to the collective, as well as recognize opportunities to create a platform from which these stories can be heard.”

GrinneLl, Iowa was the setting for The conference on HIV criminalization.

SEP+OCT 2014

Photo: Remington Smith

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POSITIVELY AWARE

BEHIND THE WALL

HIV IN CORRECTIONS

MOthers’ helping hand Alabama’s Aid to Inmate Mothers tends to both medical and emotional needs By Enid Vázquez

id to Inmate Mothers (AIM) in Montgomery, Alabama was founded in 1987 to help connect children with their incarcerated moms. Their guardians were often unable, or unwilling, to take them for visits. Social worker Carol Potok, executive director of the agency since 1998, notes that, “We have a high incidence of HIV in prison because we have criminalized risk behaviors.” Potok talked with Positively Aware about what AIM has seen with women living with HIV who are, or have been, incarcerated.

Enid Vázquez: What do the

Photo Courtesy of Carol Potok

HIV-positive women need?

Carol Potok: In prison they face a lot of the same stuff that the other women do, but even more so. They have been desegregated now [Alabama used to segregate HIV-positive inmates], so they live among everybody. That’s as it should be, but there’s good and bad in it. The prison really should do much more education with the women, to teach them how you can and how you can’t get the disease. There’s a lot of misinformation out there. We’ve done a lot of education, but we can’t compel people to come to trainings.

The positive women do see a specialist, get their medicine, and seem to get the care they need. [There’s a lawsuit in place regarding medical care on behalf of the other women.]

Anything else you can tell us about desegregation?

They are also treated like anybody else. “So, you’re the same now. You have to work the laundry for 15 hours.” One of my residents told me her feet hurt so badly she had to take Neurontin. It’s a heavy duty drug. It makes you tired and there are a lot of side effects. She said, “It’s the only way

Carol Potok:

TAKING AIM.

I could do the job, I was in so much pain.” She has neuropathy. There was no allowance for differences. Overall I would say yes, it’s better with desegregation, because they have access to all the programs they didn’t have before. In some ways their lives are a little less good because they had air conditioning, which the general population does not have. They had their own washing machine and could wash their clothes whenever they wanted. Of course, the reason for that was not a good one, but it was a perk. You didn’t need to send your laundry once a week. You could do it whenever you wanted. The good thing is they have work, and SEP+OCT 2014

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HIV IN CORRECTIONS

many of them are quite able to work. Not everyone has neuropathy in their feet. They can go to trade school, they can go to chapel, and they can go eat in the dining room and all the things that everybody else can do. So the good probably outweighs the bad.

You have said that you never use the word “inmate.”

It’s a status that allows us to not see them as people. “Incarcerated women” is a little bit nicer, or “women in prison.”

What about after release?

First of all, you have to be ready for people leaving prison and reach out to them. You can’t be passive about that, waiting for them to show up at your door. The first thing you do when they leave is find a clinic for them. Make sure that they stay in care. Even for the ones who aren’t living with us [in AIM’s residential facility], that is the goal. Make sure that they see their doctor and get their medicine, follow their regimen. You know, when they have their health they can go on to do other things. They can get jobs and have families. We have a few who aren’t very healthy. There’s a question of whether they can work. One of the problems I see is the difficulty of getting Social Security disability. One of my residents, for example, gets sick very easily. Whenever she has a cold, it turns into pneumonia immediately. Working full-time would mean calling in sick … a lot. So what we did is we applied for disability for her. That is such a long process. It just goes on and on. She’s been denied three times now. She has a few other problems related to her condition; for example, she has real bad neuropathy. She also has other problems relating to her hips. It’s crippling. The disability process is long and drawn out, and if people get a job, they tell them that proves they don’t need disability. I don’t know how they expect them to live. And if you have a drug charge in Alabama, you can’t get food stamps, so there’s no help in that area either. A lot of the women do have a drug-related charge. 28

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There’s also a certain amount of discrimination. That’s not gone. “Keep this clean and keep that clean. Use your own plate,” and that kind of thing. I know one woman in a residential home who feels she has to use bleach because of her roommate. People have a little bit of nastiness, I would say. So there’s that to deal with as well. It’s pretty bad.

It seems that so many women don’t understand that they’re in prison because of abuse that they’ve experienced.

Any time we have a class, we ask, “How many of you have a history of sexual or physical abuse?” And just about everybody raises their hand. Many people have never talked to anybody about it before. They do have therapists in prison, but it’s not the right atmosphere, or it might not be one of the places you want to go right then. We hear the stories. “Starting about six years old, my uncle started to come in to my room at night, and he convinced me that he was my boyfriend.” It was a secret they kept. Then when she got old enough to realize that it was wrong, she started to use drugs to kill the shame and the pain that it caused her. That is a very typical story. It’s usually somebody in the family. Sometimes they have to leave home to get away from it. I find a professional counselor for them as soon as they’re out. Sometimes people say, “God, I don’t think I can talk about all that again.” There’s a process of realizing that if you don’t talk about it—and it is very, very painful to do so—you’re always going to have this cycle. Or it’s a whole lot more likely. Even if you don’t go back to drugs, it’ll be something else. It will come out in other ways and your life will not go so well. We have very good counselors and domestic violence care here at shelters in Montgomery. If you’re in Birmingham, it’s very similar. I’m sure that’s true in every major metropolitan area. We try to get people into counseling as fast as possible. Most of this counseling doesn’t cost

anything, and the counselors are really amazing. Anybody who has a history of being abused and hasn’t dealt with it, the minute they’re in any kind of stressful situation, there’s a very high risk of relapsing.

What do you want women in prison to know?

What I most want them to know is that they are worth saving. Also, that they can change, and that life can be pleasant and

Potok with some of the women at the Tutweiler

Prison for Women, during an educational event.

Photo: AIM

The prison really should do much more education with the women, to teach them how you can and how you can’t get the disease. There’s a lot of misinformation out there. We’ve done a lot of education, but we can’t compel people to come to trainings.

good. It doesn’t have to be negative. The other thing I would say is that for most women in prison, and this probably goes for the men too, they are there because somebody at some point in their life failed them. I’m not trying to apologize for anybody’s crime, but I am saying that a lot of the women came from extremely difficult backgrounds where they probably didn’t have much of a chance to do anything else. If I were in their shoes, or anybody else was in their shoes, it might have

happened to me or anybody else because of what happened to them as children, or didn’t happen. Everyone should know that most people are not going to stay in prison for the rest of their lives. My philosophy is that people have the ability to change, and allowing them that chance. It’s really important not to throw away human beings. They are coming home, and if we invest in them, they can be productive and happy, and good parents. SEP+OCT 2014

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HIV IN CORRECTIONS

Window of opportunity A view from the trenches on the importance of HIV knowledge, counseling, and education

“When was the last time you shared a needle?” I asked the young woman at York Correctional Institution.

“In lock-up,” she told me. In other words, the night before, when she was already in prison. Her HIV test may come back negative that day, but in reality, she could have been infected with the virus last night. This is why it’s so important for her to understand the HIV window, the time from exposure to the virus to the time test results come back positive—which usually takes less than two weeks, but may take as long as six months. (The window of time differs depending on the HIV test being used.) Yet, in my work as the HIV Prevention Counselor at York CI for the Connecticut Department of Correction, I am supposed to be moving away from counseling and education to simply testing as many people as possible. As the role of HIV testing continues to evolve, however, the importance of education and counseling cannot be overstated.

How to stop HIV

In speaking with the approximately 1,200 women incarcerated at York CI, the majority of women who have been commercial sex workers report using condoms with their clients, if not with their significant other, at least most of the time. Among those who have shared needles with partners or friends, a significant number have used bleach and water to clean their works prior to using someone

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else’s needle. Many use their local needle exchanges or go to pharmacies to purchase brand new needles without a prescription. These findings would suggest that prevention education and counseling have made a significant impact on those who are the most at risk for HIV infection: women, one of the fastest growing groups for acquisition of the virus, as well as those who have multiple sexual partners and share needles.

How to stop HIV, Part 2 And yet, over thirty years into this epidemic, individuals are still not educated in some of the basics of HIV prevention. Many intravenous drug users are not aware that water alone will rinse away 90% of the virus and that hot water (120 degrees Fahrenheit) will actually kill the virus in the absence of bleach. As a staff member of the Department of Correction, my first goal with these individuals is of course abstinence from drug use and the appropriate treatment to reach this goal. Unfortunately, this option is not always viable for the individuals most at risk for HIV infection. Therefore, as an HIV prevention counselor most concerned with stopping the spread of the virus, these methods of sanitation are discussed, no matter how briefly. Similarly, the benefits of condoms and limiting sexual partners are discussed in

the counseling session, as is the importance of continued annual testing for those who are sexually active. The myth that spit can infect individuals continues to persist, although we have known for many years that you would need about a quart of spit to have enough HIV to infect someone. We also have to deal with the “worried well,” those individuals who are anxious about having acquired HIV despite the fact that they remain uninfected. These individuals include people who have lived with, or been in close proximity to, persons living with HIV. Some inmates may have the misconception that by living with an infected cellmate, casual contact such as shaking hands or sharing a toilet is high risk in and of itself. Education and counseling afford the opportunity to correct these misunderstandings, promote prevention, and offer peace of mind and support. In my opinion, testing upon intake into a correctional facility without adequate counseling about the HIV window may jeopardize the individual’s knowledge of their positive status, and could lead to further infections within the facility, and ultimately upon release into the community. Some prisons in California actually do not have the time to even give the inmates their results, and thus the “word in the yard” is that “no news is good news,” again possibly leading to more infections, if the individuals were tested in the HIV window. On the other side of the coin, some

Photo: allanswart/iStockphoto

by Kenneth J. Willett, MA, LPC

inmates who come for testing confuse the window period with the incubation period (the time from becoming infected with HIV to developing AIDS, generally around 10 years if not taking medication). They think they must be tested every three to six months for 10 years before they know their actual HIV status.

Over time Connecticut was one of the earliest states to develop an AIDS Division with a counseling component, through a partnership with its Department of Public Health and the Centers for Disease Control and Prevention (CDC) in Atlanta. It was understood that individuals needed to be educated and counseled around their particular risks, including sexual activity and drug use, specifically intravenous drug use where needles were being shared from one person to another. Gradually, the counseling component began using more sophisticated social work and psychology methods, and counselors from local health departments, community-based clinics, and prisons throughout Connecticut were given ongoing training to incorporate these more effective communications. The most recent development in the Connecticut Department of Correction was motivational interviewing techniques, incorporated into the one-time prevention counseling session at the time of testing. Using an empathetic and non-judgmental approach, individuals gain a new understanding of their experiences and work out changes they want to make in their behavior. In recent years, however, the general consensus from the CDC and the Connecticut Department of Public Health is that prevention counseling and education do not necessarily help stop the spread of HIV. Currently, many testing sites throughout the state that previously offered counseling and education have closed their doors, as the focus is now on identifying more individuals at greater risk for HIV through targeted outreach efforts at locations known for diagnosing greater numbers of infections, such as prisons and STI clinics. The aim is to reach those who may not have been tested previously and who indeed, unbeknown to them, may be HIV-positive.

The goals are certainly worthwhile: first, to get these individuals into treatment as soon as possible and secondly, to prevent the virus from spreading to others. The rationale appears to be that from sheer numbers being tested, more infections will be found. The Connecticut Department of Correction offers HIV testing upon request and referral. In other states, such as Rhode Island, the prison system offers what is called “routine opt-out testing,” and the state of Connecticut prison system is considering this as well. Opt-out testing, unfortunately, eliminates counseling and education.

More than a virus York C.I. is the only state women’s correctional facility in Connecticut. We now incorporate a shorter counseling session into the one-time testing offered. Besides the implementation of the rapid test currently in use, which consists of a fingerstick, I speak with the female inmates during their groups, including A.A. and other addiction services. I have found that the counseling process, with its examination of sexual and drug-related risks, has the effect of helping women find the courage to reveal traumatic experiences that put them at risk. One woman disclosed that she had been sexually abused by her father starting when she was five—and that she had never told this to anyone before. I immediately put her into the care of an outstanding therapist experienced in this type of trauma. Many of the risk behaviors of the women have their basis in psychiatric conditions and involve the acting out of higher-risk sex and drug use, sometimes intravenously with the subsequent sharing of needles. Counseling therefore affords the opportunity to liaison with other disciplines such as mental health and addiction services, dedicated to examining these underlying risk behaviors. A pilot study by Linda Frisman, Ph.D., and colleagues in 2011 compared the Rhode Island prison system with that of Connecticut, and concluded that a multidisciplinary team approach to HIV prevention counseling and testing is necessary to identify positive inmates and to stop the

spread of the virus within the prisons, and eventually back out into the community. In a small unpublished chart study, I found in a randomized sample that a high percentage (about 65%) of incarcerated women who come for HIV testing because they were commercial sex workers or had engaged in high-risk sexual behavior, as well as intravenous drug use and the sharing of needles, had been sexually assaulted at some point in their lives. They were referred to both mental health care for supportive counseling and to addiction services to begin the long process of recovery at the facility, in preparation for longer treatment in the community upon their release. This finding, among others, led to the beginning of more supportive groups such as “Safe Passage,” a trauma survivor support group, and others, geared towards addressing the underlying issues that put these women at risk for multiple incarcerations, and moreover, for HIV infection. The Connecticut prison system, and more specifically the women’s facility, is no doubt a leader in the implementation of programming for its incarcerated individuals. At York C.I., the women receive a comprehensive and holistic rehabilitation, including, as mentioned before, mental health and addiction services, and OB/GYN visits which provide detection and treatment of other STIs, and most importantly cervical cancer, as well as dental care and a multitude of groups ranging from better parenting to yoga and Pilates. In keeping with this balanced approach, I would propose that HIV prevention counseling and education not be overlooked, as it provides necessary information and, moreover, a link to these other important services.

Kenneth J. Willett, MA, LPC , is the HIV Prevention Counselor for the Department of Correction via Correctional Managed Health Care of the University of Connecticut Health Center (UCHC CMHC). Author’s note: Special thanks to Bob Manizza, HIV Prevention Counselor at Corrigan, Radgowski, and Brooklyn correctional institutions, for his input.

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ns. V treatment optio ore about my HI m rn lea to y ad e chos I was re essional and we y healthcare prof e it could m So I spoke to m ld to en. He rt of my HIV regim . ISENTRES S as pa s and lifest yle may fit my need fight my HIV and time. see you next I canâ&#x20AC;&#x2122;t wait to

HIV Positive Model

In a clinical study lasting more than 4 years (240 weeks), patients being treated with HIV medication for the first time demonstrated that ISENTRESS® (raltegravir) plus Truvada ®:

INDICATION ISENTRESS is a prescription HIV-1 medicine used with other antiretroviral medicines to treat human immunodeficiency virus (HIV-1) infection in people 4 weeks of age and older. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). It is not known if ISENTRESS is safe and effective in babies under 4 weeks of age. The use of other medicines active against HIV-1 in combination with ISENTRESS may increase your ability to fight HIV. ISENTRESS does not cure HIV-1 infection or AIDS. You must stay on continuous HIV therapy to control HIV-1 infection and decrease HIV-related illnesses. IMPORTANT RISK INFORMATION Some people who take ISENTRESS develop serious skin reactions and allergic reactions that can be severe, and may be life-threatening or lead to death. If you develop a rash with any of the following symptoms, stop using ISENTRESS and call your doctor right away: fever, generally ill feeling, extreme tiredness, muscle or joint aches, blisters or sores in mouth, blisters or peeling of skin, redness or swelling of the eyes, swelling of the mouth or face, problems breathing. Sometimes allergic reactions can affect body organs, such as your liver. Call your doctor right away if you have any of the following signs or symptoms of liver problems: yellowing of your skin or whites

May reduce viral load to undetectable (less than 50 copies/mL) May significantly increase CD4 cell counts ISENTRESS may not have these effects on all patients Patients had a low rate of these moderate-to-severe common side effects (that interfered with or kept patients from performing daily activities): trouble sleeping (4%), headache (4%), nausea (3%), dizziness (2%), and tiredness (2%). of your eyes, dark or teacolored urine, pale-colored stools (bowel movements), nausea or vomiting, loss of appetite, pain, aching or tenderness on the right side of your stomach area. Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your doctor right away if you start having new symptoms after starting your HIV-1 medicine. People taking ISENTRESS may still develop infections or other conditions associated with HIV infections. The most common side effects of ISENTRESS include: trouble sleeping, headache, dizziness, nausea, and tiredness. Less common side effects include: depression, hepatitis, genital herpes, herpes zoster including shingles, kidney failure, kidney stones, indigestion or stomach area pain, vomiting, suicidal thoughts and actions, and weakness. Tell your doctor before you take ISENTRESS if you have a history of a muscle disorder called rhabdomyolysis or myopathy or increased levels of creatine kinase in your blood.

muscle problem that can lead to kidney problems. These are not all the possible side effects of ISENTRESS. For more information, ask your doctor or pharmacists. Tell your doctor if you have any side effect that bothers you or that does not go away. Tell your doctor about all your medical conditions, including if you have any allergies, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed. ISENTRESS is not recommended for use during pregnancy. Women with HIV should not breastfeed because their babies could be infected with HIV through their breast milk. Tell your doctor about all the medicines you take, including: prescription medicines like rifampin (a medicine commonly used to treat tuberculosis), over-the-counter medicines, vitamins, and herbal supplements. Especially tell your doctor if you take any of these medicines: rifampin (Rifadin, Rifamate, Rifater, Rimactane), an antacid medicine that contains aluminum or magnesium, a cholesterol lowering medicine (statin), a medicine that contains fenofibrate (Antara, Lipofen, Tricor, Trilipix), gemfibrozil (Lopid), a medicine that contains zidovudine (Combivir, Retrovir, Trizivir).

ISENTRESS Chewable Tablets contain phenylalanine as part of the artificial sweetener, aspartame. The artificial sweetener may be harmful to people with phenylketonuria.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call FDA at 1-800-FDA-1088.

Tell your doctor right away if you get unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. This may be signs of a rare serious

Please read the Patient Information on the adjacent page for more detailed information.

Need help paying for ISENTRESS? Call 1-866-350-9232 Talk to your healthcare professional about ISENTRESS and visit isentress.com. Brands mentioned are the trademarks of their respective owners. Copyright © 2014 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. INFC-1049069-0017 05/14

Patient Information ISENTRESS ® (eye sen tris) (raltegravir) film-coated tablets Read this Patient Information before you start taking ISENTRESS and each time you get a refill. There may be new information. This information does not take the place of talking with your doctor about your medical condition or your treatment. What is ISENTRESS? ISENTRESS is a prescription HIV medicine used with other antiretroviral medicines to treat Human Immunodeficiency Virus (HIV-1) infection in people 4 weeks of age and older. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). It is not known if ISENTRESS is safe and effective in babies under 4 weeks of age. When used with other HIV medicines to treat HIV-1 infection, ISENTRESS may help: • reduce the amount of HIV in your blood. This is called “ viral load”. • increase the number of white blood cells called CD4+ (T) cells in your blood, which help fight off other infections. • reduce the amount of HIV-1 and increase the CD4+ (T) cells in your blood, which may help improve your immune system. This may reduce your risk of death or getting infections that can happen when your immune system is weak (opportunistic infections). ISENTRESS does not cure HIV-1 infection or AIDS. You must stay on continuous HIV therapy to control HIV-1 infection and decrease HIV-related illnesses. Avoid doing things that can spread HIV-1 infection to others: • Do not share needles or re-use needles or other injection equipment. • Do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. • Do not have any kind of sex without protection. Always practice safe sex by using a latex or polyurethane condom to lower the chance of sexual contact with any body fluids such as semen, vaginal secretions, or blood. Ask your doctor if you have any questions on how to prevent passing HIV to other people. What should I tell my doctor before taking ISENTRESS? Before taking ISENTRESS, tell your doctor if you: • have liver problems • have a history of a muscle disorder called rhabdomyolysis or myopathy • have increased levels of creatine kinase in your blood • have phenylketonuria (PKU). ISENTRESS chewable tablets contain phenylalanine as part of the artificial sweetener, aspartame. The artificial sweetener may be harmful to people with PKU. • have any other medical conditions • are pregnant or plan to become pregnant. It is not known if ISENTRESS can harm your unborn baby. Pregnancy Registry: There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk to your doctor about how you can take part in this registry. • are breastfeeding or plan to breastfeed. Do not breastfeed if you take ISENTRESS. ° You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. ° It is not known if ISENTRESS passes into your breast milk. ° Talk with your doctor about the best way to feed your baby. Tell your doctor about all the medicines you take, including: prescription and over-thecounter medicines, vitamins, and herbal supplements. ISENTRESS and certain other medicines may affect each other causing serious side effects. ISENTRESS may affect the way other medicines work and other medicines may affect how ISENTRESS works. Especially tell your doctor if you take any of these medicines: • rifampin (Rifadin, Rifamate, Rifater, Rimactane) • an antacid medicine that contains aluminum or magnesium • a cholesterol lowering medicine (statin) • a medicine that contains fenofibrate (Antara, Lipofen, Tricor, Trilipix) • gemfibrozil (Lopid) • a medicine that contains zidovudine (Combivir, Retrovir, Trizivir) Ask your doctor or pharmacist if you are not sure if your medicine is one that is listed above. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine. Do not start any new medicines while you are taking ISENTRESS without first talking with your doctor. How should I take ISENTRESS? • Take ISENTRESS exactly as prescribed by your doctor. • Do not change your dose of ISENTRESS or stop your treatment without talking with your doctor first. • Stay under the care of your doctor while taking ISENTRESS. • ISENTRESS film-coated tablets must be swallowed whole. • ISENTRESS chewable tablets may be chewed or swallowed whole. • ISENTRESS for oral suspension should be given to your child within 30 minutes of mixing. See the detailed Instructions for Use that comes with ISENTRESS for oral suspension, for information about the correct way to mix and give a dose of ISENTRESS for oral suspension. If you have questions about how to mix or give ISENTRESS for oral suspension, talk to your doctor or pharmacist. • Do not switch between the film-coated tablet, the chewable tablet, or the oral suspension without talking with your doctor first. • Do not run out of ISENTRESS. Get a refill of your ISENTRESS from your doctor or pharmacy before you run out. • If you miss a dose, take it as soon as you remember. If you do not remember until it is time for your next dose, skip the missed dose and go back to your regular schedule. Do not double your next dose or take more ISENTRESS than prescribed. • If you take too much ISENTRESS, call your doctor or go to the nearest hospital emergency room right away.

What are the possible side effects of ISENTRESS? ISENTRESS can cause serious side effects including: • Serious skin reactions and allergic reactions. Some people who take ISENTRESS develop serious skin reactions and allergic reactions that can be severe, and may be life-threatening or lead to death. If you develop a rash with any of the following symptoms, stop using ISENTRESS and contact your doctor right away: ° fever ° muscle or joint aches ° redness or swelling of the eyes ° generally ill feeling ° blisters or sores in mouth ° swelling of the mouth or face ° extreme tiredness ° blisters or peeling of the skin ° problems breathing Sometimes allergic reactions can affect body organs, such as your liver. Call your doctor right away if you have any of the following signs or symptoms of liver problems: ° yellowing of the skin or whites of your eyes ° dark or tea colored urine ° pale colored stools (bowel movements) ° nausea or vomiting ° loss of appetite ° pain, aching, or tenderness on the right side of your stomach area • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your doctor right away if you start having new symptoms after starting your HIV-1 medicine. The most common side effects of ISENTRESS include: • trouble sleeping • nausea • headache • tiredness • dizziness Less common side effects include: • depression • kidney stones • hepatitis • indigestion or stomach area pain • genital herpes • vomiting • herpes zoster • suicidal thoughts and actions including shingles • weakness • kidney failure Tell your doctor right away if you get unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. These may be signs of a rare serious muscle problem that can lead to kidney problems. Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of ISENTRESS. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. How should I store ISENTRESS? Film-Coated Tablets: • Store ISENTRESS Film-Coated Tablets at room temperature between 68°F to 77°F (20°C to 25°C). Keep ISENTRESS and all medicines out of the reach of children. General information about ISENTRESS Medicines are sometimes prescribed for purposes other than those listed in a Patient Information Leaflet. Do not use ISENTRESS for a condition for which it was not prescribed. Do not give ISENTRESS to other people, even if they have the same symptoms you have. It may harm them. You can ask your doctor or pharmacist for information about ISENTRESS that is written for health professionals. For more information go to www.ISENTRESS.com or call 1-800-622-4477. What are the ingredients in ISENTRESS? ISENTRESS film-coated tablets: Active ingredient: raltegravir Inactive ingredients: calcium phosphate dibasic anhydrous, hypromellose 2208, lactose monohydrate, magnesium stearate, microcrystalline cellulose, poloxamer 407 (contains 0.01% butylated hydroxytoluene as antioxidant), sodium stearyl fumarate. The film coating contains: black iron oxide, polyethylene glycol 3350, polyvinyl alcohol, red iron oxide, talc and titanium dioxide. This Patient Information has been approved by the U.S. Food and Drug Administration.

Distributed by: Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. Whitehouse Station, NJ 08889, USA Revised December 2013 USPPI-MK0518-MF-1312R025

BEHIND THE WALL

HIV IN CORRECTIONS

Hepatitis C in Corrections Prison health is public health By Andrew Reynolds

“If I had one word to say about HCV in corrections,

“While inside, inmates are still a part of our community in so many ways. In terms of infectious diseases, taking care of prisoners is important from a disease prevention per—Michael Ninburg, Executive Director of the Hepatitis Education Project, spective for the prisoners themselves, but speaking at the White House World Hepatitis Day event, July 30, 2014 also for prison staff and partners who are coming for conjugal visits.” Social policy decisions can have accounting for at least 16,000 new infecMichael Ninburg adds, “We have a legal far-reaching effects and unintended contions per year (and likely much more), with requirement, but an ethical one, too. The sequences. Rather than taking a public a prevalence rate of up to 42% per year.2 prison sentence is the debt to society…we Overall, nearly 56% of people living with health approach to address illicit drug use, cannot add the burden of untreated dischronic HCV have a history of injecting the United States has chosen to deal with ease on top of it.” drugs. 3 As HCV and injection drug use are this issue by declaring a “war on drugs” This type of ethic drives health policies so intimately related, and the war on drugs beginning in the 1970s. In choosing to in prison systems around the world. In has led to the arrest of so many people who incarcerate drug users rather than provide response to HIV, HCV, and other injecinject drugs (PWID), it follows that prisons drug treatment and other harm reduction tion drug use complications in prisons, and HCV are also deeply connected. interventions, arrest rates soared, and the many countries have initiated a number of U.S. prison population exploded in the harm reduction programs ranging from Prison Health decades to follow. Today, the U.S. has the condom distribution, bleach, drug substituas Public Health largest population of incarcerated persons tion treatments (such as methadone or in the world, with 2.3 million people in jail buprenorphine, safer tattoo initiatives, and It has become an accepted myth that or prison on any given day. even syringe exchange).4 Additionally, the “principle of equivapeople in prison are outside of free society. Another consequence of the war on lence” drives these countries to ensure In fact, over 95% of people in jail or prison drugs is lack of access to drug treatthat people in prison not only have the are eventually released back to society. 3 ment, methadone maintenance, or needle As such, prisoners remain intimately consame access to the prevention tools inside exchange and other harm reduction servicnected to the community. prison as they would have outside, but es. As a result, the twin epidemics of hepaJulie Lifshay, Special Projects Manager also to ensure that the level and quality of titis C (HCV) and mass incarceration have at Centerforce, a non-profit organization healthcare access is also held to the same grown together hand-in-hand.1 The sharing of syringes and other injecting equipthat runs a hepatitis peer education prostandard. 5 By employing the same standard for prevention, harm reduction, and ment are leading causes of HCV infection, gram in several California prisons, states,

Photo: Mitrija/ISTOCKPHOTO

it would be ‘opportunity.’ If I had two words, they would be ‘missed opportunity,’ but I choose to remain optimistic.”

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BEHIND THE WALL

HIV IN CORRECTIONS

correction figures

10 million people 36.5%

2.3 million Total number of people in U.S. jails and prisons.9

medical treatment, not only is the health of the prison population maximized, but the risk of transmission to the community upon release is also minimized. These are principles and models that U.S. policy makers and advocates can look toward to protect the health of both the prison population and the community.

Prisons and Public Health Opportunity

There is a silver lining in all of this: By having so many people living with HCV concentrated in one place, we can have a dramatic impact on this disease, with public health guidelines leading the way. We can find an example in the CDC’s HCV screening recommendations for people born between 1945 and 1965 (the so-called “baby boomer” guidelines). It is estimated that approximately 75% of people living with HCV in the U.S. are in this birth cohort, so the CDC issued recommendations for a one-time test to be given to each person within this group, no questions about risk factors asked. The public health impact of this screening recommendation cannot be understated: Implementation has the potential of uncovering at least 800,000 previously unknown infections and avoiding over 120,000 deaths.6 A similar screening model implemented in jails could have equally dramatic effects. Anne Spaulding and colleagues from the Rollins School of Public Health, Emory University, have suggested implementing an “opt-out” model of HCV screening in U.S. jails. Opt-out testing refers to the practice of routinely including a test within a battery 36

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pass through jails and prisons each year.10

716 per 100,000 people in the U.S. are incarcerated.9

Percentage of people who are African American in state and federal prisons.9

of tests with a general consent, while still allowing a person to decline the test. In a brief model put forth in the New England Journal of Medicine, Spaulding states that if there are 1 million people with HCV in jails, and 70% are offered an HCV test with 70% of those accepting said offer, then 500,000 new HCV infections can be uncovered in the first year alone.7 As with the birth cohort described above, the public health impact of jail screening can have wide-ranging impacts on the health of the community as a whole. Once new HCV infections have been identified in correctional settings, the need for support, education, care, and treatment is the responsibility of the system, per the U.S. Supreme Court case Estelle v. Gamble (1976).8 Hepatitis C care and treatment can be very complicated and it may require the work of specialists who may not be readily available in a correctional setting. That said, the successful treatment of people in corrections is possible.8 As we move into the interferon-free, direct acting antiviral (DAA) era for HCV medications, treatments will be shorter, easier to take with fewer side effects, and more effective in curing people. This not only increases the options for successful treatment—even cure—of people in prison, but it also opens the door for people serving shorter sentences in jails. Of note, once cured, people may still be at risk of HCV re-infection, so jails and prisons should still provide prevention education and harm reduction tools to prevent this from occurring. Primary care providers will play a central role in treating HCV, in both community and in correctional settings, but they will need support and training to do so. To address

501,500 people in prisons for non-violent drug offenses9

HCV risks in jails and prison Prison environment can Compound the risk

Most prisoners with HCV enter jails or prisons already infected with the disease, but there are a number of risk factors that, when combined with the closed setting and poor access to drug treatment and harm reduction services, may exacerbate risk and lead to new infections among previously HCV-negative persons. These risk factors include: n

Sharing of syringes and other injecting equipment Sharing of intranasal snorting equipment (straws, Visine bottles) for non-injectable drugs

Unsterile tattooing and piercing

Forced anal sex

Unprotected sex among HIV-infected inmates; the risk of sexual transmission of HCV is greater for people with HIV, but low for HIV-negative individuals

Hepatitis C in corrections

1,857,629

people with Hepatitis serving time in a correctional facility each year.11

Reducing HCV risk behind bars The role of needle exchange in jails and prisons8

Although needle and syringe exchange programs remain a controversial issue in the U.S., it is well established that these programs are an effective intervention in preventing HIV and HCV infections in people who inject drugs (PWID). Once PWID are incarcerated, they no longer have access to these prevention tools. Internationally, prison and public health officials have introduced prison-based needle exchange programs with the following effects: Needle exchange programs exist in over 60 prisons in 10 countries throughout Europe, Central Asia, and Iran; Needle exchange in prisons actually reduce risk of accidental needle sticks to prison staff, creating a safer work environment; In over 20 years of operations, there have been no reports of syringes used as weapons; Evaluations of prison-based needle exchange programs found that needle sharing decreased, HIV infections were reduced, and there was no increase in people injecting drugs or increased drug use.

Approximately

1 in 3 people who have HCV in the U.S. Pass through a Jail or Prison each year.11

this need, the University of New Mexico initiated “The Extension for Community Healthcare Outcomes” (Project ECHO) to train and improve the capacity of primary care providers in rural areas, and prisons, to manage HCV. They employ telehealth technology, case-based training, and ongoing training to medical providers. This evidencebased model has been shown to improve the care and treatment, and consequently the cure rates, of patients in correctional settings, and the expansion of this model can serve the treatment needs of people in jails and prisons across the country.9

Counseling and education

In addition to supporting the training of medical providers, there is a strong need to provide patient support and education in jails and prisons. Peer support models have been shown to be effective interventions for patient support. The Centerforce peer health model, “Peer Health Education Program (PHEP),” was identified by the CDC in 2009 as a model program in HCV service delivery in prison settings. PHEP develops a variety of educational materials, presentations, and trainings, as well as videos and support group guides to HCV prevention and care. They train peer educators to provide workshops, one-on-one counseling, and outreach to prisoners to raise awareness. According to Julie Lifshay, the peer model is successful because “they have a sense of legitimacy among the population, are well trained, and are given the power to interpret the science of HCV prevention and treatment and put it into words that

Approximately

1 in 6 inmates has Hepatitis c.12

are accessible to the prison inmates. In this way, I think of them as a translator between medical staff and patients.” Other jail and prison systems across the country have similar peer support programs.

Conclusions

Ideally, the U.S. would not have the world’s largest prison system with epidemic levels of HCV, and have a society where we are able to screen, care for, and treat HCV patients before they enter prison. Until that goal is met, we are legally obligated to treat disease in inmates, and morally obligated to offer preventative services. With new testing technologies, improved treatment regimens, and innovative, evidence-based harm reduction interventions, we have the means at our disposal. What is needed is a shift in public policy and political will, a shift that will have dramatic implications for both prison and public health. As Josiah Rich and colleagues state: “…we can help to change the perception of the HCV epidemic in the criminal justice system, transforming it from a legal liability to a critical opportunity to change the course of HCV in the United States.”2 Andrew Reynolds is the Hepatitis C

Education Manager at Project Inform and facilitates several HCV support groups in the Bay Area. Call the Support Partnership’s HELP-4-HEP hotline: (877) 435-7443. References available at positivelyaware.com.

SEP+OCT 2014

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AIDS 2014 THE MELBOURNE REPORT

Progress OVER tragedy By Enid Vázquez

candlelight vigil

at Melbourne’s Federation Square for those lost aboard flight MH17.

This year, the opening ceremony, which is always filled with festivity and inspiration, added a global moment of remembrance along with tributes to the colleagues lost. Dr. Lange was a strong advocate for treatment access who had said, in response to remarks that it would be hard to deliver medications to rural areas without roads, “If we can bring a bottle of Coke to every corner in Africa, we should be able to also deliver 38

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antiretroviral drugs.” His leadership in research on antiretroviral therapy and prevention of mother-to-child transmission had helped saved lives around the world. Conference organizers confirmed that also on that flight were Dr. Lange’s partner, Jacqueline van Tongeren, of the Amsterdam Institute for Global Health and Development, whose longtime work had also been dedicated to people with HIV;

SEP+OCT 2014

Pim de Kuijer of STOP AIDS NOW!; Lucie van Mens, director of AIDS Action Europe and a strong advocate for female condoms and the rights of sex workers; Maria Adriana de Schutter of AIDS Action Europe; and Glenn Thomas of the World Health Organization (WHO). Dr. Lange was co-director of the HIV Netherlands Australia Research Collaboration (HIVNAT). All 298 persons on the flight were killed. “The extent of our loss is hard to comprehend or express,” said IAS President Françoise Barre-Sinoussi, Director of the Regulation of Retroviral Infections Unit at the Institut Pasteur in Paris. “We grieve alongside all of those throughout the world who have lost friends and family in this senseless tragedy.”

More than a virus As the opening sessions continued, speakers discussed the encouraging data on treatment access and reducing new HIV infections, but also began to detail the stigma and discrimination towards individuals at greatest risk of infection that continue to pose major barriers to ending the epidemic. Altogether, the conference theme of “Stepping Up the Pace” focused on supporting the treatment advances that can help turn the epidemic around, while calling for changing the widespread laws and attitudes that put the entire world at risk. “One-third of people living with HIV who need treatment now have access to it,” BarreSinoussi said in an IAS press release. “Nevertheless, these

Arriving in Melbourne, Australia in high spirits over the work to be done, organizers and delegates were set back with the tragic loss of Joep Lange, MD, of the Netherlands, former president of the International AIDS Society (IAS, which organizes the international conference) and other leaders in the fight against the epidemic when Malaysia Airlines flight MH17 was shot down over Ukraine on July 17.

The International Antiviral Society-USA (IAS-USA) once again published its recommendations for HIV treatment during the international AIDS conference. For the first time, the society recommends antiviral therapy for everyone living with HIV, citing new evidence that HIV continues to do damage no matter how strong the immune system and furthermore, that treatment helps cut the risk of transmission. See the document in the July 23–30 issue of JAMA at jama. jamanetwork.com/article. aspx?articleID=1889146.

U.S. HIV rate down

A look at PrEP adherence

Researchers from the Centers for Disease Control and Prevention (CDC) reported that the annual HIV diagnosis rate in the U.S. has gone down more than 30% in the past decade. However, diagnoses remained

Just two or three Truvada pills a week reduced the risk of becoming infected with HIV by 84%. (It’s still recommended that you take Truvada for PrEP every day; the FDA’s

NEW YORK 12:00 AM

N -S

TO P

LOS ANGELES

“An end to AIDS is only possible if we overcome the barriers of criminalization, stigma, and discrimination that remain key drivers of the epidemic.” So concludes the Melbourne Declaration. Every international AIDS conference creates a declaration for progress against the global epidemic, and leaders

stable for men who have sex with men (MSM) and even increased in certain groups of them, those ages 13–24, 45–54, and 55 or older. The CDC research letter published in JAMA July 23–30 noted that, “Although increases in diagnoses were found in young [MSM], reports show that many at high risk do not test annually and the overall percentage of youth who had ever tested for HIV during the period of analysis was low compared with other age groups. Among [MSM], unprotected risk behaviors in the presence of high prevalence and unsuppressed viral load may continue to drive HIV transmission.”

The Melbourne Declaration

ART urged for everyone

remarkable achievements are still not enough—22 million people still do not have access to treatment. The official AIDS 2014 theme reminds us that we need to step up the pace and redouble our efforts. Too many countries are still struggling to address their HIV epidemic with their most vulnerable people consistently being left behind.”

for this conference chose the theme “nobody left behind,” working in tandem with the conference’s overall theme of “stepping up the pace” for treatment, care, and prevention. Anti-gay laws abroad and criminalization laws everywhere threaten the safety and rights of people living with HIV and stop individuals from accessing prevention, testing, and treatment if needed. “We express our shared and profound concern at the continued enforcement of discriminatory, stigmatizing, criminalizing, and harmful laws which lead to policies and practices that increase vulnerability to HIV,” the declaration states. “These laws, policies, and practices incite extreme violence towards marginalized populations, reinforce stigma and undermine HIV programs, and as such are significant steps backward for social justice, equality, human rights, and access to health care for both people living with HIV and those people most at risk of acquiring the virus.” Moreover, the declaration proclaims, “To defeat HIV and achieve universal access to HIV prevention, treatment, care, and support, nobody should be criminalized or discriminated against because of their gender, age, race, ethnicity, disability, religious or spiritual beliefs, country of origin, national status, sexual orientation, gender identity, status as a sex worker, prisoner, or detainee, because they use or have used illicit drugs, or because they are living with HIV.” See the entire document, including its recommendations for action, at aids2014.org/ Default.aspx?pageId=734.

Melbourne 2:00 PM

With a population of 4,347,955, Melbourne is the second largest city in Australia, and is considered the country’s cultural capital. Literally half a world away, Melbourne is 14 hours ahead of New York; when it’s midnight in the Big Apple, it’s 2 p.m. in Melbourne. Flying non-stop from Los Angeles takes about 17 hours. SEP+OCT 2014

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participants at every visit if they wanted to stop or continue PrEP. Those who entered the study but chose not to take PrEP cited concerns about potential side effects (49%), not wanting to take a daily pill (24%), and desire to use other prevention methods (14%).

Sex with PrEP Face-to-face discussions (qualitative research) with men from the iPrEx OLE study brought out findings about their sexual realities. Prior to being put on PrEP, the men reported a range of condom use, such as routine, once in a while, or never. Truvada for PrEP is supposed to be used along with condoms and other risk-reduction methods, but there has been concern that some people may stop using them if taking the medication. “ The field is quite fixated on condoms and that’s why I presented that information to you,” said presenter Kimberly Koester, of the Gladstone Institutes in San Francisco. Younger men, however, reported increasing their use of condoms, which she said was attributed to the counseling received as part of the prevention package of the study, adding, “We have terrible sex education in the United States.” All in all, Koester said that the focus (from critics) on whether or not condom use would decrease when PrEP is used overshadows the benefits the men reported over and over: decreased stress, fear, and guilt. “Those who value sex without a condom find PrEP became a way to decrease any future negative sexual health

SEP+OCT 2014

Read it at positivelyaware.coM

Researchers who wrote The Lancet special themed

issue, “HIV and sex workers,” discuss their findings during a panel presentation: decriminalization could avoid 33–44% of new infections over the next decade; human rights violations increase risk of HIV; and sociopolitical changes are needed to recognize sex work in labor laws. read more about the issue in an online-only article at positivelyaware.com.

consequences and for others who really value having sex with condoms, PrEP use—as for the previous group—led to greater feelings of safety and empowerment and diminished feelings of worry,” Koester noted. “PrEP’s ability to neutralize fear was one of the most pervasive narratives. Our participants discussed the tension between the feelings of fear and the feelings of safety as it related to connecting sexually and emotionally with other men.” One man, for example, said he was afraid of HIV even when he was “being safe” and now the anxiety is gone. Another said he wasn’t going to have bareback sex because he feels protected, but “I just didn’t have the overwhelming stress and fear and guilt that I would have had before.” “So PrEP use seems to take away the worry but not the condom in many cases,” said

Koester, “or condoms were not in play anyway and so PrEP now offers even greater protection.” An audience member said he “couldn’t wrap my head around” why men would continue to use condoms with PrEP and asked if there was a “social desirability bias” in the interviews, that is, did the men say they used condoms because they thought that’s what the researchers wanted to hear. “It’s a little simplistic to assume that because someone is using PrEP they’re fully protected against HIV, that condoms are just going to fall by the wayside,” Koester replied. “I think men strategically employ condoms now and they will probably continue to do so in the future. And that’s based on talking with these folks in iPrEx OLE, early adopters of this highly efficacious treatment.”

Abstracts, videos, and Powerpoint presentations are available at AIDS2014.org. Official reports for AIDS 2014 were produced by the community-based National AIDS Map (NAM) in London and write-ups by doctors from Clinical Care Options in the U.S.; go to aidsmap. com and clinicalcareoptions.com.

approval of the pill for prevention—or “PrEP”—calls for one tablet a day, plus daily use of PrEP is more forgiving of missed doses.) iPrEx OLE (for “open label extension”) is a follow-up to the iPrEx study that helped lead to FDA approval of Truvada for HIV prevention in people at high risk of infection. “Adherence has to be good, but it doesn’t have to be perfect,” said presenter Robert Grant, MD, the principal investigator for iPrEx. There were no infections seen with taking four or more tablets a week. The adherence findings came from dried blood spot samples. There were 1,603 individuals in the study, with 76% choosing to take PrEP. The study lasted 72 weeks. According to the study’s publication online July 22 in The Lancet, “Access to PrEP was associated with a roughly 50% reduction in HIV incidence compared with concurrent and historical controls.” The report also noted that, “Sustained engagement is a significant challenge for PrEP services,” with a “substantial” number of study participants stopping Truvada, resulting in a “high infection rate.” Of the 380 times that PrEP was stopped for reasons other than loss to follow-up, end of the study, or HIV infection taking place, 151 times it was due to personal preference; 93 times due to side effects; 38 times due to a significant but unrelated comorbidity; 52 times due to moving or travel; and 53 times for other reasons. Grant said “personal preference” constitutes a big question—why would they stop? The study staff did ask

Disappointing News leads to New Questions by Matt Sharp

The fourth Towards an HIV Cure Symposium—an initiative of the International AIDS Society (IAS)—took place July 19–20, prior to the 20th International AIDS Conference in Melbourne. As the symposium started, participants were still in shock as the situation with the savage attack on Malaysia Airlines flight MH17 was still fluid. IAS president Françoise Barre-Sinoussi, director of the Regulation of Retroviral Infections Division at the Institut Pasteur in Paris, dramatically opened the symposium by saying that Joep Lange—a noted veteran AIDS researcher from the Netherlands who was killed on the flight—believed that a cure was possible. In a mournful tone, she declared that Lange would have encouraged us to go on. Jack Whitescarver, director of the U.S. National Institutes of Health (NIH) Office of AIDS Research, and Sharon Lewin, director of the Infectious Diseases Unit at the Alfred Hospital in Melbourne, both spoke of the importance of collaboration despite recent disappointing developments in HIV cure research. (Two weeks before the conference, researchers had announced that a child in Mississippi thought to have been cured of HIV following very early antiretroviral therapy was in fact still infected.) Striking a hopeful tone, Whitescarver stated that the NIH is committed to increasing investment in HIV cure research over the coming

Towards an HIV cure Press conference: (From left) outgoing IAS President Françoise Barre-Sinoussi, Sharon Lewin, Deborah Persaud, Dan Barouch, Ole Schmeltz Søgaard, Nicolas Chomont, and Steven deeks. years to extend the scientific advances presented at the symposium. As the science towards understanding an HIV cure is still new, with little data from clinical trials to present, there was not much breaking information that was newsworthy for the layperson at the symposium. But it is clear that HIV cure research is moving full steam ahead despite some complex challenges. Jeffrey Lifson from the U.S. National Cancer Institute’s Frederick National Laboratory for Cancer Research gave a keynote address reviewing those challenges and current HIV cure research approaches. A well-known scientist, Lifson spoke of the role of vaccines in cure research, noting the limitations of pharmacological-only approaches. He described the potential for therapeutic vaccination while laying out the specific limitations of current vaccine models. Lifson suggested that it may be possible to exploit the evolutionarily acquired wisdom of cytomegalovirus (CMV),

which could tell us something about the properties of T-cell responses to CMV-vectored vaccines and its co-evolutionary relationship to HIV. Work is already in progress towards understanding this approach. Symposium organizers chose to begin the abstract sessions with the “kill” challenge in the “shock and kill” approach currently being pursued by several research groups. The idea behind “shock and kill” is to first reactivate latent HIV in resting T-cells. Once the virus is woken up and starts replicating, it can be recognized and killed by the immune system, perhaps aided by various immune-based therapies. Hemotologist Geoff Hill, MD, from the Queensland Institute of Medical Research discussed the role of allogeneic stem cell transplantation and its implications for immune control of HIV. Researchers have learned much from past experience with “Berlin Patient” Timothy Brown—who still appears to be cured of HIV several years

after receiving bone marrow transplants from a donor with a mutation that makes immune cells resistant to infection—as well as from two Boston bone marrow recipients who experienced viral remission after stopping antiretroviral therapy, but eventually experienced viral rebound. The role of graftversus-host disease, a condition where newly transplanted immune cells attack the body of the recipient, in the elimination of HIV in these patients is still not fully understood and there is scientific rationale for further exploration. The rest of the first session covered several immunological possibilities for furthering the “kill” approach, all in early stages of laboratory research. The “shock” component was discussed in the next session, devoted to further understanding the mechanisms involved in reactivating latently infected memory cells, as well as new compounds being screened for this purpose. One type of agent that has been widely studied is histone deacetylase, or HDAC,

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AIDS 2014 THE MELBOURNE REPORT

inhibitors. HDACs are enzymes that keep DNA tightly coiled in a cell’s nucleus. HDAC inhibitors reverse this process, allowing the genetic instructions to be used to produce the proteins needed to build new cells or new virus. Ole Schmeltz Søgaard from Aarhus University Hospital in Denmark presented findings from a clinical trial using the HDAC inhibitor romidepsin— one of the only cure research trials presented at both the symposium and the main conference a few days later. Romidepsin may be a more potent activator than previously studied HDAC inhibitors such as vorinostat. In this study, three doses of romidepsin did increase levels of cell-associated HIV RNA in CD4 T-cells as well as plasma viral load, but it still did not significantly reduce the size of the viral reservoir, according to levels of total HIV DNA in CD4 cells. One of the biggest challenges in HIV cure research is to determine the best way to measure virus reduction in the reservoir. Nicholas Chomont from the Vaccine & Gene Therapy Institute of Florida described an advance in the development of novel assays to measure HIV in the latent reservoir. TILDA (Tat/ Rev Induced Limiting Dilution Assay) is a new sensitive, reproducible, quick, inexpensive test that appears promising but needs to be further analyzed. On first hearing the news of the HIV breakthrough in the “Mississippi Baby,” there was obvious sadness for the child, but there is a tremendous amount of information that can be learned from the 42

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case, and Deborah Persaud from Johns Hopkins provided a thorough update at the symposium. The child, now age 4, has restarted antiretroviral medication and remains asymptomatic. Several nuances in the follow-up analysis provide remarkable insights into HIV pathogenesis, viral persistence, and immune control in infected babies, and further analysis is being performed on blood samples from the child. Certainly the field will move forward, and the global IMPAACT P115 trial of very early treatment of infants born to HIV-positive mothers, conducted by the NIH, is expected to proceed. The remainder of the Towards an HIV Cure symposium was devoted to abstract sessions and roundtable discussions on other scientific and practical challenges related to cure research. Remaining scientific problems include how to effectively target other HIV reservoirs besides T-cells. Clinical trial design and ethical issues remain a subject of debate, including expansion to resource-limited settings. One of the larger issues moving forward is the need for increased funding and the hope for more public-private collaboration in the field. The ongoing challenges will almost certainly be a big nut to crack, but if this symposium and the ongoing IAS initiative are any indication, HIV cure research is continuing. As they say, stay tuned! Special thanks to Karine Dube from the University of North Carolina for assistance with this report.

SEP+OCT 2014

A Really rapid review BY PAUL SAX, MD

For the second time—the first time was in Sydney, 2007—the annual “summer” international AIDS conference took place in Australia, this time in Melbourne way down in the southern part of the country. I’ll note again how the crash of Malaysia Airlines flight MH17 cast a sad note over the opening sessions, and throughout the conference many people gave moving tributes to friend and colleague Joep Lange. This being the larger of the two international meetings, there was plenty of non-medical, non-scientific content, all of which I’ll completely pass over in this Really Rapid Review©. (Except to say that Bill Clinton and security entourage walked right past me—he waved hello, though clearly not to me personally.) With the usual up-front apologies for inadvertently omitting something important, off we go. When given with darunavir/ritonavir, maraviroc was inferior to TDF/FTC for initial therapy (TUAB0101). We knew this already from the press release last year, but this was the first time we’ve seen the data. Failure rates were particularly high with lower CD4 cell counts. Interesting conference dynamic when the presenting author was asked about whether the dose of maraviroc (150 mg mg daily) was too low—he responded rapid-fire with around 5 studies justifying the dose, quite a performance. As maintenance therapy,

atazanavir/ritonavir plus lamivudine (two drugs) was non-inferior to atazanavir/ ritonavir plus 2 NRTIs (three drugs) (LBPE18). As with the GARDEL study of LPV/r + 3TC, these results are still more evidence of the magic of 3TC/FTC. Study is called “SALT”—can you guess what this stands for? As maintenance therapy, lopinavir/ritonavir plus lamivudine (two drugs) was noninferior to lopinavir/ritonavir plus 2 NRTIs (three drugs) (LBPE17). Again...magic of 3TC/FTC! And this one was called “OLE”—another clever title, please guess the origin. Given the results of the above three studies, perhaps we shouldn’t be surprised that for virologically suppressed patients, raltegravir plus ATV/r was clearly worse than ATV/r plus 2 NRTIs—the study was stopped by the DSMB for more virologic failures in the experimental arm (LBPE19). What’s causing the underperformance of these two drug regimens that don’t have 3TC/FTC? To quote my friend Joel Gallant, “the only good nuke-sparing regimens contain a nuke.” (When you steal a line that good, you must give credit.) The SECOND LINE study (TUAB0105LB) found after failing 2NRTIs/NNRTI, second-line treatment with lopinavir/r with either raltegravir (two new drugs) or NRTIs (one new drug plus recycled but still partially active drugs) were non-inferior. In this resistance analysis of the study, having more resistance at study entry lead to a higher

likelihood of treatment success. A paradox? Not really; this has been seen before—patients with the worst adherence have the least resistance, hence they do poorly on their next regimens too. The SAILING study (TUAB0104) showed that dolutegravir was superior to raltegravir in treatmentexperienced patients, and this detailed resistance analysis found that the difference was quite pronounced in those treated only with NRTIs. 0/32 receiving DTG plus NRTIs failed treatment, vs. 7/32 for RAL plus NRTIs; for M184V +/thymidine-associated mutations, there were 0/13 DTG vs. 4/12 RAL failures. In this large analysis of a Spanish treatment cohort, HIV RNA between 20–50 cop/mL did not increase the risk of treatment failure compared to those with HIV RNA < 20 copies/mL (TUAB0102). Reassuring, because we don’t know how to manage those patients anyway! In an observational Canadian cohort study, patients who switched therapy while virologically suppressed had significantly greater risk of failure than those who didn’t switch (TUAB0103). Not surprisingly, the switchers vs. non-switchers differed substantially—enough so that this study was this meeting’s winner of the “Unmeasured Confounding Influenced Outcome” award, a limitation the presenter acknowledged. How often should we be measuring viral loads in our

stable suppressed patients? In this HIV Outpatient Study (HOPS) analysis, virologic suppression rates were similar between those who did and did not have HIV RNA measured more than twice a year (WEPE045). Could save a boatload of money if the frequency of these tests could be reduced in selected stable patients. What are some of the predictors of prescribing guidelines-concordant HIV treatment in the USA? (THPE076) Glad to see that being an ID specialist was one of them! (Love the title of the abstract too...) Tons on PrEP at the meeting, but the study that got the most attention was an interim analysis of a French study of intermittent PrEP (TUAC0103), called “IPERGAY,” which stands for...something. Adherence is excellent so far in this “event-driven” strategy, no outcomes data yet. Note that the comparator arm to the intermittent PrEP is placebo, as PrEP is not approved or strongly endorsed in France. More indirect evidence that intermittent PrEP could be the way to go from this iPrEx analysis (TUAC0105LB), which found 100% protection in those participants whose blood levels suggested 4X/week adherence to daily TDF/FTC. Don’t share cuticle scissors with someone who is viremic (MOPE119). Enough said. There’s no doubt that HIV-positive MSM have more anal dysplasia and anal cancer than their HIV negative counterparts, and high-grade

squamous intraepithelial lesions (HSIL) are thought to be a strong precursor to cancer. But this well-done Australian study found that more than half of HSIL lesions regressed spontaneously, making the optimal treatment uncertain (WEAB0102). Great name for the study, by the way—Study of the Prevention of Anal Cancer (SPANC). In HIV/HCV co-infection (genotypes 1–4), sofosbuvir plus ribavirin cured over 80% of patients, with perhaps the only weakness the genotype 1a patients with cirrhosis (MOAB0105LB). This combination remains the treatment of choice for genotype 2; for genotype 1, sofosbuvir/ ledipasvir is imminent. Speaking of imminent approvals for genotype 1 HCV, the “3D” regimen of ABT-450/r/ombitasvir (three drugs co-formulated) plus dasabuvir plus RBV cured over 95% of co-infected patients (MOAB0104LB). Interestingly, some of them received atazanavir-based regimens, using the “r” (ritonavir) in the HCV regimen to provide the boost. A small study of this same combination found that it was safe and effective (again, cure > 95%) in patients on methadone or buprenorphine, with no adjustments required of the narcotic replacement therapy (MOAB0103). Cure research has taken a beating recently, especially with the virologic relapses of the two Boston stem cell transplant patients and the Mississippi baby. But the

Drug names and classes mentioned in this story

3TC: Epivir, lamivudine atazanavir: Reyataz darunavir: Prezista dolutegravir: Tivicay FTC: Emtriva, emtricitabine lamivudine: Epivir, 3TC LPV/r: Kaletra, lopinavir/ ritonavir NNRTI: non-nucleoside reverse transcriptase inhibitor NRTI: nucleoside/ nucleotide reverse transcriptase inhibitor raltegravir: Isentress ritonavir: Norvir sofosbuvir: Sovaldi

research goes on, and here a study (TUAA0106LB) demonstrated clearly measurable increases in HIV RNA after infusions of the potent HDAC inhibitor romidepsin—suggesting a reversal of HIV latency! The current thought is that this sort of treatment plus other measures (vaccine? immune augmentation otherwise?) may decrease the latent reservoir. Paul Sax, MD, is Clinical

Director of Infectious Diseases at Brigham and Women’s Hospital in Boston. His blog HIV and ID Observations is part of Journal Watch, where he is Editor-in-Chief of Journal Watch AIDS Clinical Care.

SEP+OCT 2014

Reprinted with permission, NEJM Journal Watch. A longer version of This article first appeared in the blog HIV and ID Observations;

blogs.jwatch.org/hiv-idobservations. Abstracts

cited available at

AIDS2014.org.

P O S I T I V E LY AWA R E

AIDS 2014 THE MELBOURNE REPORT ➤ Owen Ryan, Sharon Lewin, Chris Beyrer, and Françoise Barre-Sinoussi with Bill CLinton Backstage before the former U.S. President’s speech about the future of HIV treatment and prevention. ➤➤ Deborah Persaud DiscusseS the Mississippi Baby AT the Towards An HIV Cure Press Conference.

➤ Yohannes Haule, 21, (seated right) From Tanzania designed the Winning logo of the conference. The footprint is an image used by aboriginal Australians. HAULE’s Logo symbolizes the steps forward made by science. ➤➤ Melbourne town Hall was among 45 Buildings lit in red For the conference. (PHOTO: John Ryan Mendoza, Outragemag.com.)

➤ Sir Bob Geldoff IS interviewed on stage. ➤➤ The Official AIDS March to Federation Square in Downtown Melbourne.

P O S I T I V E LY AWA R E

SEP+OCT 2014

My Kind of life Carlos A. Perez

Strong enough to walk on through the night

Photo: CHRIS KNIGHT

received my HIV diagnosis on April 1, 1984, while in a study, and it was no April Fool’s joke. My diagnosis came with a six-month-to-one-year death sentence, and within minutes I was wrecked. At 25, I had lofty career goals in advertising, but an HIV diagnosis from a medical health professional all dolled up in scrubs, gloves, and a mask has a way of sinking in when all your friends and community members are dropping like flies. My interpretation of my sentence was to get as much out of life as I could right now, and party like it’s 1999!

Years and years of partying began to take its toll. No matter how wonderful a party I may have had, I eventually came down and the anger and depression of waiting to die would dial up louder with each event. I had so much anger that I was lashing out at everyone near me. Some really crazy shit happened during those formative years; I had horrible side effects from the early doses of AZT that had me walking in a daze like a zombie, making my depression worse and adding neuropathy, diarrhea, vomiting, extreme GI pain and cramps, and thrombocytopenia. One day the shit piled up so high around me that I became suicidal and decided to bust out of this heartbreak motel. I woke up in a cold, sanitized, white ER room, and realized I couldn’t even off myself. My first foray into therapy was not very successful. I was still young and immature and I had no experience with mental health care. Instead of opening up and being honest, I blamed the world, the doctors, the HIV, the weather, the music, and even the food! So I kept on partying and hoping that something beautiful and different would happen. As they say, I was repeating the same behavior and expecting a different outcome. This led to more anger and lashing out, and one night I blacked out and woke up at the District 20 holding cell. Waking up out of the blackness, I realized where I was when I saw bars, cement, and an exposed metallic toilet. I called a guard and told him I must be let out so I could go home and take my AZT, and he laughed at me and said, “You should’ve thought about that before attacking someone!” And that was an awesome blackout because I’ll never know who I attacked. My little overnight gig in the holding cell did it for me. And this time I could only blame the bad, lukewarm, bitter, black coffee, the dry bologna sandwich on white bread, and my own damn self. I knew I wouldn’t make it in jail and so I actually began therapy. What this meant was no more blaming anything or anyone other than me.

It was all about taking 100% responsibility and dealing with today in real time. It’s one of the hardest things we can do in life—open up to someone as if you’re naked and accepting yourself and your life as they are. A few years into therapy and I began to understand myself better: what makes me happy and sad, what triggers me, how to deal with the triggers and pick my battles, and I learned to love who I saw in the mirror. When you love yourself, you can receive more love and give more of it away, and you’ll take better care of yourself. So don’t start therapy until you’re ready to hear what you probably won’t like to hear about yourself. Don’t start until you’re ready to be brutally honest and say exactly what you think and feel. Don’t start until you’re ready to let someone—a stranger—know who you really are when you’re at you’re best and worst, and hopefully you’ll wind up talking about who you are when you’re at your best. After years in therapy I can say thanks to HIV I am strong enough to walk on through the night. As the song says, there’s a new day on the other side. And once I faced my own mortality, I became stronger and never again afraid of the future. I have no idea how life may have turned out for me without my HIV diagnosis, but I like it just the way it is today. It helps to be happily married, with a home that I can come home to while rooted to the ground and living in real time. Our bodies can take a lot of abuse and keep on ticking, but our minds are much more fragile. Once we lose our mind, the rest of our body, teeth, hair, you name it, follows suit and most of these losses are not easy to regain. If we totally lose touch with reality, we deteriorate at an alarming rate. Now that more people have health insurance, it’s time we look deep within to understand ourselves, and the world we live in. I would suggest that you try one of the hardest self-examinations you will ever go through, and talk to someone about what’s bugging you.

SEP+OCT 2014

I knew I wouldn’t make it in jail and so I actually began therapy. What this meant was no more blaming anything or anyone other than me. It was all about taking 100% responsibility and dealing with today in real time.

P O S I T I V E LY AWA R E

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