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From Mice Into Men The Research Revolution We Need to Cure AIDS Now
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(COVER IMAGE) ISTOCKPHOTO/TOMASZ ZACHARIASZ; (FAUCI) GETTY IMAGES; (VIENNA) ISTOCKPHOTO/KARINA TISCHLINGER
AIDS 2010
For our coverage of the XVIII International AIDS Conference in Vienna, go to poz.com/aids2010. Watch interviews with leaders in the HIV/ AIDS community and read summaries of the latest research studies.
The National HIV/AIDS Strategy
Go to poz.com/ nhas for our coverage of the release of the National HIV/AIDS Strategy by the White House Office of National AIDS Policy. Watch interviews with advocates, funders and government officials.
Celebrating Stephen Gendin
Go to blogs.poz.com to read tributes to the late HIV/AIDS activist Stephen Gendin on the 10th anniversary of his death. POZ founder Sean Strub and POZ contributing writer Shawn Decker share their memories of Stephen.
Anthony Fauci, MD
22 FROM MICE INTO MEN Exciting new scientific discoveries mean the hunt for the end of AIDS is again red-hot. To cure AIDS, we will need a lot more money, a revolution in AIDS cure research, and the courage to get as many new promising treatments out of the lab—and safely into the bodies of people living with HIV as we can. BY REGAN HOFMANN WITH TIM HORN
28 THE DOCTOR IS IN Anthony Fauci, MD, has been the director of the National Institute of Allergy and Infectious Diseases since 1984. He sits down with POZ editor-in-chief Regan Hofmann to talk about where we are relative to finding a cure for AIDS. 5 EDITOR’S LETTER RIP Rx
9 YOUR FEEDBACK
On health care reform, chronic pain and the courage of a Rwandan genocide survivor
10 TALKING
The POZ Q&A: Jeffrey
Crowley • two new global initiatives aimed at stopping HIV-related stigma • ADAP SOS • Pozarazzi • safer-sex trading cards • a business partnership to reduce HIV rates in Oakland • Hot Dates
16 LIVING
Pipeline options for those with drug-resistant HIV, plus
tips if you’re at the end of your rope • using lube to protect against STIs • And We Quote • HIV treatment for seniors
32 ACHIEVING
Pedro Julio Serrano is an advocate for people living with HIV/AIDS and for LGBT civil rights.
POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for a 8-issue subscription) by Smart + Strong, 462 Seventh Ave., 19th Floor, New York, NY 10018-7424. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 167. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2010 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher.
EDITOR’S LETTER REGAN HOFMANN EDITOR-IN-CHIEF JENNIFER MORTON MANAGING EDITOR ORIOL R. GUTIERREZ JR. DEPUTY EDITOR KATE FERGUSON, LAURA WHITEHORN SENIOR EDITORS CRISTINA GONZÁLEZ ASSOCIATE EDITOR WILLETTE FRANCIS ASSISTANT EDITOR TRENTON STRAUBE COPY EDITOR KENNY MILES RESEARCHER LAUREN TUCK INTERN CONTRIBUTING WRITERS
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N THE COVER OF THIS MAGAZINE NEARLY 10 YEARS AGO, POZ asked, “Whatever Became of the Cure?” I remember, as a reader then, thinking it was a damn good question. In the flurry of congratulatory activity around effective antiretroviral (ARV) therapy, there was too little focus on the end game: eradicating the virus itself. Don’t get me wrong. I am thrilled ARVs prolonged my life. But, I also wish I didn’t have to take them. Since protease inhibitors debuted in 1996, a great deal of money and energy has been applied to improving the treatment formulations. Newer, more effective, easier to tolerate drugs have played a huge role in compliance, which has led to less drug resistance and better health for people with HIV. But it is troubling that we haven’t spent as much time, energy and money developing a way to kiss the drugs good-bye forever—a delicious thought suggested by the picture of an empty medicine cabinet on POZ’s cover a decade ago. In that issue, legendary AIDS treatment activist Martin Delaney, founder of Project Inform, prophesied that we would see a functional cure—full viral suppression without ARV therapy—“by 2010, at the very latest.” Tragically, we lost Marty in January 2009, and we still don’t have a cure. In a bittersweet twist, the National Institutes of Health (NIH) named a new research grant after Marty. The grant—$8.5 million a year for five years—will support the search for a functional cure. The answer to how we find a cure is largely financial. As you will see in our feature story on page 20, while a new grant like this shows a commitment to AIDS research, we aren’t spending anywhere near what the experts say we must to find a cure soon. Ten years ago, Marty asked, “So should we just give up? Should we tell people to settle for a lifetime of pill-induced misery?” (The answer, of course, is no!) Today, that question is doubly vexing, because for many people around the world, a lifetime of pills isn’t even an option. The price of keeping tens of millions of people on ARV therapy for the rest of their lives is not a check anyone is prepared, or able, to pick up. We can’t get the drugs to everyone, and as we explain in “At the End of Your Rope,” on page 16, there is also another factor—a growing number of people who are running out of treatment options with no new answers readily in sight. In light of our most dire need for a cure, I ask those of us lucky enough to still be here—thanks, in large part, to treatment activists like Marty—to pick up where he and other advocates left off. Let’s refuse to let another decade go by without getting to say RIP to our prescriptions for HIV. Because if we don’t find the cure soon, we will bury tens of millions of people. And as Anthony Fauci, MD, the director of the National Institute of Allergy Our and Infectious Diseases (interviewed on page 28), said when he first January saw the millions who needed treatment but weren’t getting it, “This is 2001 cover just something that as human beings we can’t accept.” I would like to dedicate this issue of POZ to the memory of Martin Delaney and all who hoped they would live to see the cure, and did not. May they rest in peace. And may we not rest until we help usher in their dream of the end of AIDS.
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REGAN HOFMANN
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OCTOBER | NOVEMBER 2010 POZ 5
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YOUR FEEDBACK While I don’t have to deal with the “doughnut hole” gap in Medicare coverage, many Americans do, and many [other] Americans don’t take medications [because they] are [too] expensive. I take three pills now. If I had to pay out of pocket, the cost of one of them would negate my monthly stipend from SSDI. The second issue is the AIDS Drug Assistance Program waiting lists and how people are dying from no access to medications. I called my New Jersey [congressional] delegates and urged them to address both the doughnut hole and the ADAP problem. STEPHEN PUIBELLO CLIFFSIDE PARK, N.J.
RESURRECTING THE SPIRIT In “Resurrection From Rwanda” (July/ August 2010), Consolee Nishimwe shared how she overcame the trauma of being diagnosed HIV positive after a rape during the Rwandan genocide. I’m very inspired and strengthened by Consolee Nishimwe’s amazing story of great courage, strength and healing. Consolee is indeed a woman of humility, positive energy and great determination despite the trauma she has endured. SHEILA GONZALEZ NEW YORK CITY
COMING UP SHORT In “Shortchanged?” (July/August 2010), we discussed potential ways health care reform could fi x prescription drug coverage shortages for people living with HIV/AIDS. This is scary stuff. [If I’m] shortchanged, I don’t know where I would go other than to my care provider and ask for a case worker and/or a social worker. Like so many others, I live on Social Security Disability Insurance (SSDI) as I’m dually diagnosed with bipolar disorder. I also maintain a small part-time job.
Talk To Us
PAIN GAME OVER “Pain, Pain, Go Away” (July/August 2010) explored the challenges chronic pain presents for people living with HIV. As a long-term survivor of HIV/AIDS and chronic pain, I was beginning to question the logic of continuing to take my HIV medications. The article’s last sentence, “Don’t get desperate and let it be the be –all, end–all in your life,” was a timely godsend. The article left me wanting more, however. We need more research and discussion on this issue. We need more funding and advocacy, and we need better pain management medicines accessible via ADAP.
𰀩𰁎𰁔𰁒𰁏𰁄𰁕𰁃𰁉𰁎𰁇𰀀𰁔𰁈𰁅𰀀 𰀰𰁁𰁔𰁉𰁅𰁎𰁔𰀀𰀳𰁁𰁖𰁉𰁎𰁇𰁓𰀀 𰀣𰁏𰁕𰁐𰁏𰁎𰀀𰀰𰁒𰁏𰁇𰁒𰁁𰁍 𰁆𰁏𰁒𰀀𰀩𰀳𰀥𰀮𰀴𰀲𰀥𰀳𰀳𰀀 Merck now offers a co-pay assistance program for ISENTRESS. Eligibility restrictions, terms, and conditions a
apply. To find out more, call 1-866-350-9232 or visit isentress.com. 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. a For
eligible privately insured patients.
Not valid for residents of Colorado and Massachusetts. Restrictions apply. Please see full terms and conditions on isentress.com.
ALEX GARBERA WEST HAVEN, CT
I realize a lot of people abuse the need for pain medications. But there are those of us who actually do suffer with severe, chronic pain. It’s pain that makes [an otherwise] wonderful life not worth living. My pride forces me not to talk about it or let it show, but it’s so hard! I would never have believed that I could or would suffer from this kind of pain at age 54. GEORGE (LAST NAME WITHHELD) SOUTH CAROLINA
Have an opinion about an article in this month’s POZ? Share your comments on a specific story on poz.com or send a letter to POZ, 462 Seventh Ave., 19th Floor, New York, NY 10018. ISENTRESS is a registered trademark of Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. Copyright © 2010 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. 20952392(1)-09/09-ISN-CON
talking POZ Q+A:
Jeffrey Crowley
POZ editor-in-chief Regan Hofmann talks with the director of the White House Office of National AIDS Policy about the release and implementation of the National HIV/AIDS Strategy. After holding a series of nationwide townhall meetings to gather information from the community, the White House released its first National HIV/AIDS Strategy in July. What has been the reaction?
What was your personal feeling?
When I got the job [as director of the White House Office of National AIDS Policy (ONAP)], quite frankly I felt like my whole job was to manage expectations because there’s so much we need to do and no way to please everybody. I felt like the real challenge was to set some clear priorities that give us a vision for going forward. Professionally, it’s the opportunity of a lifetime, and I feel really proud that the administration enabled us to put out a strategy like this. What was President Obama’s reaction to meeting the community at the White House reception after the strategy’s release?
He gets energized when dealing with [the American public]. It would’ve been easy for him to say, “I don’t have time for this,” but I think his presence shows that he is very committed to [HIV/AIDS]. 10 POZ OCTOBER | NOVEMBER 2010
Jeffrey Crowley
I also think that he really enjoys getting out of the bubble as they call it, and just engaging directly with people. Clearly it was an electric night, so how could he not feed off the positive energy of everybody present? Is this a historic moment for HIV/AIDS in America?
I always want to be cautious about calling anything that we do historic, but I do think that we [the ONAP staff and the President’s Advisory Council on HIV/AIDS (PACHA)] have a commitment to involving people with HIV [on a level that hasn’t happened before]. This isn’t about the Obama administration as much as it is about the country moving forward together. This isn’t a federal strategy; this is a national strategy. Hopefully, people will see what their role can be in helping us move forward.
The strategy aims to lower new infections 25 percent by 2015.
GETTY IMAGES/CHIP SOMODEVILLA
We’ve been very pleased with the reaction. The community feels rightfully like it’s theirs. I think many people feel like they have ownership, which is very gratifying.
[The DHHS] can flush it out because they are the ones who are going to directly fund state and local health departments. Also, PACHA has a very significant role, both in supporting implementation and monitoring implementation, even [down to the level of] community-based groups. In our federal system, we don’t tell states what to do. We’ve given them a vision [so] that they can see what their role is. Hopefully, people will talk to their state and local officials and say, “You need to come up with your own plan to implement this strategy.” Is part of the strategy to highlight best practices?
We have committed to a new level of reporting. In the presidential memorandum, [the president] directed me and ONAP to report to him annually on our progress. For me to develop this report, we’re going to be relying on all the reports from all the other departments and the agencies across the governments. What you suggest is great, because it’s not just about what’s our progress in AIDS metrics. When there are good lessons, we want to make sure that people can learn from other people’s successes. Will we see significant funding increases for HIV/AIDS?
One of the criticisms I’ve heard is that the strategy isn’t aggressive enough. We haven’t flatlined infection rates in 30 years, so doesn’t it feel pretty aggressive?
Yes, I actually do believe that 25 percent is both realistic and quite aggressive. I wish that we could set a goal for 50 percent or 75 percent and believe that we could realistically get there, but I don’t believe it helps anybody to set a really high goal that we don’t even come close to achieving. [Even] if we don’t meet 25 percent, we can still make major progress. The strategy aims to combine the efforts of federal, state and local health oranizations. How will that be monitored?
When we released the strategy, a presidential directive was given to executive agencies to take action. In particular, the Department of Health and Human Services is going to come up with an operation plan that’s going to pull together all the things that all the various agencies are going to do.
When President Obama came into office, we had flatfunded prevention for about a decade. We have increased HIV prevention in our last two budgets and announced new prevention funding through the Prevention and Public Health Fund. Everybody will [always] say we need more money, but I think that we are showing at least in these tight, difficult times that HIV is a priority, and you can expect that to continue. Similar things have happened on the care side through the Ryan White program and others. Certainly, we need to recognize the very significant resources we are bringing to the care system through the [Ryan White] Affordable CARE Act, so I think we are very committed. The presidential memorandum directs the executive agencies to ensure that when they are developing their budget proposals that they are looking at the recommendations and the priorities of the strategy, so that their budgets reflect the priorities in the strategy. I’m assuming those reports will take into consideration that much of health care reform doesn’t kick in until 2014.
Within the strategy, we have been very clear that we need to OCTOBER | NOVEMBER 2010 POZ 11
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bridge the gap. Even in 2014, the Affordable Care Act won’t solve every problem, but it will make a lot of other problems easier and give us some breathing room to think about what we need. We certainly expect that the Ryan White program will continue after health reform is implemented, but in the short term we have some challenges. But I would also say that these aren’t challenges that are for the federal government alone to solve. There’s a role for state and local governments, private funders and community-based organizations. What can the community do to support the strategy?
We’ve laid out a vision. A lot of people look at the strategy and say, “What’s my role in this?” I don’t think that people should sit back and wait for me to tell them what to do. I think they should look at the strateg y and [recommend] how they can help. We hope that a lot of activity takes place at the local level and the state level to really move us forward.
of the ideas related to the strategy?
Some of the issues that we dealt with in the strategy were linked to laws passed in different times. We want to make sure that policies support evidence-based approaches. There’s a role for Congress to take a look at some of those issues. Is treatment or prevention emphasized more in the strategy?
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We know that when people know someone with HIV, they are more committed to the fight.
I think they’re [both] important. I would say, though, that certainly in the area of HIV incidence, the steps that we need to take to increase our prevention efforts are probably the areas where I think we’re giving the most forceful vision of what we need to do. We’re focusing on the communities at greatest risk and really scaling up evidence-based practices. We also need to be willing to say [that in] some of the things we are currently funding, maybe the evidence isn’t so strong, so in a time of scarce resources we really need to focus on the evidencebased practices. I’d also say the issue of reducing health disparities [is important]. These disparities exist, and we need to make major strides in [addressing them]. The way we do that is we improve our prevention efforts, we get people into care. To some extent, they all sort of blend together. We’ve struggled to clearly identify who has HIV/AIDS in America. Are surveillance and testing part of the new strategy?
I think we can say that we have one of the best surveillance systems in the world, but it’s still under stress. We need to con12 POZ OCTOBER | NOVEMBER 2010
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Do we need legislation to secure some
tinue to invest in our surveillance system to make sure that it gives us the best data possible. We have $30 million of new prevention funding—some of that is going to support the surveillance system. Our surveillance system on its own doesn’t tell us everything we need to know. We need to make new investments in behavioral surveillance and other things that allow us to look at smaller samples of the population. We believe that testing is very important. To me, testing is not about the number of tests. It’s about the number of positives we identify. We do want to routinize testing. Everybody should know his or her HIV status. But some populations need to be tested more regularly than others. We have limited resources. We can’t pretend that we could offer HIV tests multiple times a year to everybody in the country, but maybe we can for some populations that are high risk. This strategy is not about me or the White House deciding all these tough policies. We’ve set a direction. The community does have a job to push us, but they also shouldn’t expect that every question is going to be answered within the first 150 days [after the release of the strategy]. By focusing on groups at high risk, are we stigmatizing HIV/AIDS? In other words, if it’s a “gay” or “black” disease, won’t the general public believe it can’t happen to them?
I understand those concerns, and I think they’re real. But this country has [come] a long way in the past 30 years in how it deals with and understands gay and bisexual men. We probably couldn’t have the honest conversation 30 years ago that we can have today. People understand that gay men are driving this epidemic, but we can still expect the general population to care about them. The strategy cites data from the Kaiser Family Foundation that say roughly half of the people in our country of 300 million people know someone with HIV. Unfortunately, that’s the extent that HIV is permeating society, but it [could also lead to] something that’s hopeful. We know that when people know someone with HIV, they are more committed to the fight. I understand the concerns, but I think there is just more to be gained by being honest about the challenges we face and addressing them in a direct way. Go to poz.com/video to watch our complete interview with Jeffrey Crowley, and go to poz.com/nhas for more on the National HIV/ AIDS Strategy.
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Standing Against Stigma
A NEW GLOBAL NETWORK SEEKS BEST PRACTICES FOR REDUCING HIV-RELATED STIGMA. Stigma often stops people from getting tested for HIV. It hinders prevention and education efforts, undermines the health of people living with HIV, and fuels mother-to-child transmission. In short, stigma contributes to the global pandemic. It would make sense, then, that reducing stigma would help fight AIDS. That’s the thinking behind the Stigma Action Network (SAN), which was launched in July during the XVIII International AIDS Conference in Vienna by the International Center for Research on Women with a start-up grant from the M•A•C AIDS Fund. In its first year, SAN will develop an interactive website where advocates, researchers and policy makers can share ideas and best practices about reducing HIV-related stigma and discrimination. “[This network will] enable people involved in program design, research, development and advocacy [around reducing] HIV stigma to share information, tools and experiences,” says SAN coordinator Anne Stangl, PhD. The site will also allow users to discuss how to respond to research developments and policy gaps and how to coordinate and expand their efforts, she says. In other words, the Stigma Action Network is a much-needed clearinghouse to clear away stigma. —WILLETTE FRANCIS Go to stigmaactionnetwork.org for more information.
The Stigma Index GETTY IMAGES/JON FEINGERSH
COLLECTING DATA ON HIV STIGMA AND DISCRIMINATION TODAY WILL HELP US TOMORROW. The People Living With HIV Stigma Index is an initiative documenting people’s experiences— over a 12-month period—with HIV stigma and discrimination, including how they’ve been able to challenge and overcome these situations. The initiative is founded through partnerships with the Global Network of People Living With HIV/AIDS (GNP+), the International Community of Women Living With HIV/AIDS (ICW), the International Planned Parenthood Federation (IPPF) and the Joint United Nations
Programme on HIV/AIDS (UNAIDS). Developed by and for people living with HIV, the stigma index will collect data to expand our understanding about the extent and forms of stigma and discrimination. This valuable insight can then be used to inform policy and stigma intervention programs. As of June 2010, more than 20 countries, including Bangladesh, Belarus, China, the Dominican Republic, Pakistan, Sri Lanka, Thailand, Kenya, Nigeria, Zambia, the Philippines, Fiji and
the United Kingdom, completed national rollouts of the stigma index. While the United States hasn’t yet implemented the index, GNP+ North America has reached out to U.S. agencies to help it build awareness, and a number of them are interested, explains Sean Strub, POZ founder and GNP+ North America board member. —WF Go to http://www.stigmaindex.org for more information. OCTOBER | NOVEMBER 2010 POZ 13
ADAP UPDATE
“Waiting lists are the tip of the iceberg.” Each state sets up its own ADAP eligibility requirements and benefits, though the money comes from the federal Ryan White program. States generally protect ADAP, Schmid says, so if a state cuts its ADAP and places residents on waiting lists, that means it has already slashed HIV prevention efforts, tightened ADAP eligibility and reduced the meds the program covers. A June NASTAD report spells out why we’re in this ADAP mess. Demand is growing because more people are unemployed and losing health insurance. ADAP funds are shrinking because of state and federal fiscal crises. (Last year, states contributed 14 percent of the total ADAP national budget, which marks a 34 percent decrease from the previous year, and the federal government supplied 49 percent of the funds—the first time since 1997 that its earmark dipped below 50.) In addition, the nation’s efforts to test more people have led to more diagnoses. And then there’s the fact that HIV meds are working—which means more people are living longer and taking meds.
First the good news: As waiting lists in 13 states for AIDS Drug Assistance Programs (ADAPs) skyrocketed in July to a record 2,359 people, the Obama administration allotted $25 million in emergency funds to address the crisis. The money is expected to reduce—if not eliminate—waiting lists for ADAP, which furnishes HIV-related meds and extends insurance to those in need. Plus, Congressional subcommittees are recommending another $25 million for ADAP in fiscal year 2011, which begins April 1.
Tomorrow’s news: Health care reform will alleviate many problems—but that doesn’t fully kick in until 2014. For now, pharmaceutical companies are offering rebates and reduced prices to ADAP. Their rebates accounted for 31 percent of the 2009 national ADAP budget, a huge leap from 7 percent a decade earlier. Unfortunately, the newly announced National HIV/AIDS Strategy offers little in terms of resources. As both Lefert and Schmid say, if advocates don’t convince Congress to bolster HIV/AIDS money, yesterday’s news will repeat itself as tomorrow’s headlines. —TRENTON STRAUBE
STARRING ROLES
WAITING LISTS MAY EVAPORATE—FOR A FEW MONTHS— BUT THE CRISIS AIN’T OVER.
Now the bad news: It’s a temporary reprieve, at best. “I don’t think it’ll be long before we see waiting lists creep up again,” says Ann Lefert of the National Alliance of State and Territorial Directors (NASTAD). Florida, for example, is expected to keep adding about 400 people per month. Although some folks on waiting lists scramble together access to treatment, others do go off meds, which can lead to drug resistance and fewer treatment options for the future. What’s more, adds Carl Schmid of The AIDS Institute,
POZARAZZI Earth, water, wind, fire and crazy costumes: Welcome to the 18th annual Life Ball in Vienna. This year’s gala was themed after the four elements and titled “Sow the Seeds of Solidarity.” The party coincided with the opening of the International AIDS Conference and raised $1.9 million for HIV/AIDS-related causes. From left to right: 1. Burlesque artist Dita Von Teese and John Demsey, chairman of the M·A·C AIDS Fund. 2. Guests hit the dance floor in feathered headresses. 3. Whoopi Goldberg, one of this year’s guests of honor, takes in the spectacle. 4. Life Ball organizer Gery Keszler and Kenneth Cole, one of three designers to deck out a special-edition MINI convertible for an amfAR auction. 5. Rebecca Romijn and Jerry O’Connell. 6. German musical star Uwe Kröger, Austrian TV host Mirjam Weichselbraun and Christopher Wolf (Kröger’s partner). 7. President Bill Clinton and POZ editor-inchief Regan Hofmann. 8. A few of the non-celeb guests who strictly adhered to the Life Ball Style Guide Bible walk the red carpet. 9. Fashion icon Diane von Furstenberg, another special-edition MINI convertible designer, flashes a catwalk-ready smile.
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(SOS) GETTY IMAGES/RAIMUND KOCH; (POZARAZZI) COURTESY OF LIFEBALL: (1,5,8,6) ANDREAS TISCHLER; (3,4,9) MEINRAD HOFER; (2) KATHARINA SCHIFFL; (7) JEREMY GRAYZEL
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Get Your Game On SAFER-SEX TRADING CARDS FROM VISUAL AIDS
A tattooed and muscled basketball player slips his hand down his short shorts, a sleek swimmer is awarded a condom medal, an oiled-down tennis player gets ready for a match—these aren’t your average sports trading cards. These are just some of the images on the “Play Smart” trading cards released in June for LGBT Pride month by Visual AIDS and The Men’s Sexual Health Project. They tell you how to play it smart while getting some play. Each card showcases commissioned artwork by photographers (two of whom are HIV positive), as well as information on safer sex, HIV testing and PEP (post-exposure prophylaxis). The names on the front of each card are those of the photographers—not the subjects. Each pack of trading cards comes packaged with a sticker, condoms and lube. Visual AIDS hopes the trading cards will spark both the exchange of data and digits. They’ll certainly be fun to swap. —CRISTINA GONZÁLEZ “Play Smart” trading cards are free for distribution and available in bulk for the cost of shipping and handling while supplies last. E-mail info@visualaids.org for more information.
It’s Everyone’s Business A NEW PARTNERSHIP AIMS TO END A STATE OF EMERGENCY.
(LATINO MAN) ISTOCKPHOTO/EDUARDO ANTONIO FUENTES
More than 10 years after local officials first declared Oakland, California, to be in a state of emergency over its rising HIV rates, the city remains torn apart by a seemingly unstoppable epidemic. Oakland Mayor Ronald Dellums’s office has responded to the raging rate of new HIV infections by
founding Get Screened Oakland (GSO), a new public-private partnership that unites for-profit corporations, city programs and nonprofit organizations to revolutionize HIV/AIDS awareness and prevention programs. GSO is supported by the Global Business Coalition (GBC) on HIV/AIDS, Tuberculosis and Malaria. The GBC connects government organizations and nonprofits with the specialized skill sets of corporations. The result is a synergy tailor-made to Oakland’s residents and businesses. GSO has three goals: raise awareness about the HIV epidemic, reduce HIV transmission and make HIV screening a routine part of care. The hope is that GSO’s prevention strategy will serve as a national model and revolutionize public health programs in other cities ravaged by HIV/AIDS. “This approach re-energizes and re-engages an exhausted community of providers by bringing in new people and new partners to the table,” said Marsha Martin, PhD, director of GSO. “With more people engaged, HIV becomes everyone’s business. With more people engaged, the work is better coordinated, facilitated and supported.” GBC members tied to the Oakland area—including Chevron, Levi Strauss & Co., Young & Rubicam, Walgreens and the NBA—are already onboard and have pledged their unique skills for the partnership. Sounds like it’s a good thing to be all up in each other’s business. —CG
HOT DATES
OCTOBER 15 NATIONAL LATINO AIDS AWARENESS DAY More than two of every five Latinos who test HIV positive in the United States receive an AIDS diagnosis within one year. Early testing is crucial, which explains this year’s NLAAD theme: “Save a Life, It May Be Your Own. Get Tested for HIV.”
Go to nlaad.org for more information.
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Ironically, the success of today’s antiretroviral treatments has hindered the development of new options for longtime survivors with drug-resistant HIV.
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HAD KENNEY, 56, WAS ALWAYS AGGRESSIVE WHEN IT CAME TO his HIV treatment. Shortly after his 1987 diagnosis, the Denver native started a treatment newsletter, Resolute, that quickly became a survival guide for people living with HIV/AIDS in Colorado. He was always game to try to raise his CD4 levels with the latest drug (they’ve never been above Chad the 400s), whether it was Retrovir, the first HIV med; Compound Q, a failed Kenney is fighting hope; or the very first protease inhibitor. He remembers attending a lecture his drugin the late ’80s given by the late legendary treatment activist Martin resistant HIV.
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DON CUDNEY
At the End of Your Rope?
Delaney. “[Delaney] asked, ‘If you had a diagnosis of cancer, would you wait and see if it got worse [before] you started to treat it?’” remembers Kenney. “So I decided that I was going to try whatever agent I could find [to fight my HIV].” But what neither Kenney nor HIV experts knew at the time was that adding just one new drug to a failing HIV regimen is usually not enough to quash viral replication. And, doing so often leads to the rapid development of HIV resistance to one new drug after another. An accumulation of drug-resistant mutations certainly hasn’t made things easy for Kenney. Despite using a power regimen consisting of Truvada, Isentress and Selzentry, his viral load stayed in the hundreds of thousands. It was only when he added another new drug, Prezista, that his CD4 cell
finding similarly situated patients and connecting them with the trial drugs they need to suppress their HIV. During the past 15 years, new options continued to come along for survivors like himself. But today? “They’re in deep shit,” Vergel says. “I’m really angry.” Why angry? For one thing, the current drugs keeping millions of people alive were tested on the very folks who currently need, or may soon need, new treatment options. “The drug industry owes them a big debt,” says Steven Deeks, MD, another San Francisco HIV doc who works on the issue of drug resistance. “We should not forget this generation of people living with HIV,” he says, adding that we need to provide them with new drugs as soon as possible.
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need new options to go on both drugs simultaneously, before the FDA approves them, to beef up the chance of success. They hope this program will launch by mid-2011. Kenney, who takes a fistful of meds three times a day, says he’ll only sign up for the new drug program if his current regimen doesn’t hold out, but he’s hoping it does. Meanwhile, life goes on. And though he and others like him may dream of “undetectable,” their lab numbers don’t necessarily reflect how they feel day to day. Many patients with no options left remain in good health, living functional lives despite low CD4 counts and high viral loads. The trick, it seems, is to stay on the best HIV regimen possible rather
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count rose to 145 and his viral load fell to 69—just above the “undetectable” viral load threshold. He’s hoping these numbers will stick, if not improve. “I’ve lived with uncertainty for a long, long time,” he says, “so I try not to ride an emotional roller coaster.” But the scary truth is, if his viral load creeps back up, there’s no new HIV drug on the market he can add to his regimen. Just five years ago, tens of thousands of HIV treatment veterans were in the same boat Kenney finds himself in today. The volume of people facing treatment failure was enough to spur drug companies to develop a new wave of antiretrovirals strong and innovative enough to keep drug-resistant HIV in check. Many of those drugs on the market today—including Aptivus, Fuzeon, Intelence, Isentress, Prezista and Selzentry—have lowered the number of people with HIV who are fully resistant to treatment. Based on most good accounts, there are just a few thousand such people nationwide. Good news, unless you are a member of this large handful of people—which is expected to grow in size in the future— who still need new options. The number of patients who currently need resistance-busting antiretrovirals is so small that pharmaceutical drug companies have little financial incentive to invest the billions of dollars arguably necessary to develop new drugs, including entirely new classes of compounds. “HIV drug development is about to come to a halt,” says Jay Lalezari, MD, a San Francisco HIV doc who works on creating new HIV drugs and says that of 1,000 patients in his HIV practice, only about 40 “are waiting for something better to come along.” Nelson Vergel, a longtime HIV survivor in Houston, only recently got his viral load undetectable, thanks to TaiMed Biologics’ experimental drug ibalizumab (TMB-355). He has devoted his life to
I’ve lived with uncertainty for a long, long time, so I try not to ride an emotional roller coaster.
The current pipeline, however, has only a few contenders. Two notable hopefuls: the aforementioned ibalizumab, which blocks a key protein on CD4 cells so HIV can’t bind to it, is gearing up for Phase III studies; and GlaxoSmithKline’s S/GSK572, which is currently in Phase II studies and shows some promise for folks who’ve developed resistance to Merck’s firstgeneration integrase inhibitor Isentress. In recent months, two other experimental HIV drugs—Avexa’s apricitabine and Myriad Genetics’ bevirimat—were shelved. Both were casualties of weak early test results and lack of a profit motive. In a unique activist-doctor partnership, Vergel, Deeks and Lalezari are working with the developers of TMB-355 and S/GSK-572, as well as with the U.S. Food and Drug Administration, on a program to enable patients who really
than going off HIV meds completely. (See “Safety Nets” on page 18.) Lalezari mentions a patient who’s had one CD4 cell for the past five years. “Somehow the lethality of the virus has been weakened by all the drugs he’s on,” he says, adding that lab CD4 counts are a weak marker of immune health because they detect only CD4s circulating in blood, not in lymph tissues and other compartments. Kenney hopes to visit his boyfriend this winter in Thailand. For now, he hits the gym daily and eats healthy. And there’s love in his life in Denver. “My brother lives two blocks away, and I have friends that go back more than 20 years,” he says. And at day’s end? “My 7-year-old Lab retriever, Kasandra, sleeps on my bed. She’s very, very affectionate—and incredibly demanding!” Sounds a bit like her owner. —TIM MURPHY OCTOBER | NOVEMBER 2010 POZ 17
Safety Nets DETECTABLE? KEEP TAKING YOUR MEDS! Research shows that people with multidrugresistant virus and detectable viral loads do better when they stay on their “failing” HIV meds rather than going off them. Talk to your doctor about finding the best regimen possible. And it’s OK to ask for a second opinion. The indefatigable Nelson Vergel can put you in touch with an expert in your area.
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SUPPRESS YOUR HERPES If you have genital herpes (HSV-2), stick to your antiherpes meds like acyclovir or talk to your provider about taking it. Research shows these meds also help reduce HIV viral load. USE CONDOMS It’s important to use condoms to avoid contracting sexually transmitted infections, because getting STIs can inflame your immune system and make
your HIV viral load go up. You’ll also want to protect your partners from drugresistant HIV. LIVE WELL Eat right, exercise, take quality vitamins and reduce stress with yoga, acupuncture, support groups, a pet—whatever works for you. “Keep a positive outlook,” Vergel says. He should know—he’s had detectable virus most of his 27 years with HIV, and he’s still going strong!
PLUG IN TO FUTURE RESEARCH Connect with Vergel at salvagetherapies.org or e-mail him directly at nelsonvergel@yahoo.com. He’s your link to the latest resources for folks seeking new options. Search aidsmeds.com and clinicaltrials.gov for the latest updates on experimental drugs ibalizumab, S/GSK-572 and other agents making their way into clinical trials. —TIM MUPRHY
DON CUDNEY
Detectable virus doesn’t mean doom! Here’s how to survive and thrive at the end of your treatment rope while waiting for new options:
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I V I N G
And We Quote “In our shrinking world, the goal of universal access and global health can no longer be viewed as a story about ‘others.’ These are our stories. Universal access is our responsibility. And holding ourselves and our political leaders accountable is our continued challenge.” —Brigitte Schmied, MD, president of the Austrian AIDS Society, during the opening session of the XVIII International AIDS Conference in Vienna
Senior Strength People over 60 respond well to HIV treatment.
A Slippery Slope?
(FALLING MAN) GETTY IMAGES; (PATIENT) GETTY IMAGES/JOSE LUIS PELAEZ
Sexual lubricants, once believed to protect against sexually transmitted infections, may actually increase risk.
Using lubrication with condoms for anal intercourse to help protect against sexually transmitted infections (STIs) has been a long-standing practice of prevention because lubricants can prevent abrasions, which can increase the chance of STI transmission. However, a study reported at the Microbicides: 2010 conference in late May challenged that theory. Research conducted by Pamina Gorbach, DrPH, and others at the University of California at Los Angeles, showed that people who recently used lube, either with or without condoms, during anal sex were more likely to contract STIs than those who didn’t. This is because regular lube use can damage the epithelium, the thin layer of cells lining the anal cavity, Gorbach explains. And this, in turn, makes people more vulnerable to STIs. In the study involving 300 women and men who had anal sex, those who had used lubes in their last receptive anal sex encounter had more cases of the bacterial infections chlamydia and gonorrhea than those in the no-lube group. Gorbach says condom use was uniform across the groups. (If used properly, condoms can provide excellent protection against HIV/AIDS, but they do not protect against certain STIs.) A related study also reviewed at the conference evaluated the specific lubes. According to study author Charlene Dezzutti, PhD, of the University of Pittsburgh, water-based Pré and condom-compatible silicone Wet Platinum seemed to cause less epithelial erosion than four others analyzed (Astroglide, Elbow Grease, ID Glide and K-Y Jelly). Microbicide activist Anna Forbes urges caution before forgoing lubrication. “Don’t drop lubes,” she says. “That can increase the risk of trauma and therefore of HIV.” The bottom line? Get tested for STIs, get treated if necessary, and play it as safe as you possibly can. —LAURA WHITEHORN
HIV-positive seniors may face more health challenges than their younger peers, but they need not worry about the efficacy of their antiretroviral therapy. A new study conducted at Chicago’s Rush University Medical Center showed that 67 percent of the 191 patients, who averaged 65 years old, had an undetectable viral load and had CD4s 200 points above pre-treatment levels. These results are similar to those seen in younger people living with HIV. However, people diagnosed before they were 50 had better CD4 responses than those diagnosed later in life—a difference, according to study author Mariam Aziz, MD, that could be due to delayed entry into care. “Some providers may find it difficult to treat older patients, given the risk involved with comorbidities,” she says. “[The Rush findings] reinforce the need for widespread routine HIV testing so that [people] will be diagnosed and linked to care earlier.” —WILLETTE FRANCIS
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From Mice Into Men
The gap between groundbreaking scientific discoveries and a game-changing cure has never been greater. And yet, researchers say we could be closer to a cure than many have dared believe. To close that gap, and increase the chances we’ll see the end of AIDS in our lifetimes, we need more advocacy, a lot more money and the courage to get as many viable options out of mice and into humans. You in?
BY REGAN HOFMANN WITH TIM HORN
DREAMSTIME
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URE. IT’S A WORD FEW HAVE BEEN willing to pair with AIDS since we thought we had the virus kicked in ’96. For nearly 15 years, talk of a cure has been verboten. Those who have dared utter it (including on the pages of this magazine) were dismissed as dreamers. Since the late 1990s, research, advocacy and funding around HIV/AIDS have focused almost exclusively on prevention and treatment. And yet, it has become clear that we can neither treat nor prevent our way out of the pandemic. The ethical, logistical, sociological and financial barriers to trying to end AIDS with pills and awareness campaigns are proving too great. The cost of providing antiretrovirals (ARVs) indefinitely to all people globally who will need drugs to survive is staggering; it’s estimated to be in the tens of trillions of dollars, not accounting for inflation, an ever-growing caseload and future drug prices. Not even the combined coffers of all the global health funds, the biggest health care foundations and the richest nations and individuals around the world are prepared to foot that bill. (The price tag also poses the question: Even if we could raise the tens of trillions of dollars, why would we spend that much money on treating HIV when it could take far less to find a cure?) The biggest, pinkest elephant in the room is that since no one, especially in this global economy, is likely to spend the money required to keep the 33.4 million people UNAIDS estimates to be living with HIV today alive—tens of millions
of men, women and children are going to die of AIDS in the near future. Unless we find the cure. So where is the bloody thing? There has been talk of conspiracy. Woefully inadequate funding for cure research. Riskadverse venture capital investors. Abandoned biotech babies. And precious little advocacy. While the HIV community was focusing on everything from improving treatment options to funding lifesaving programs like the Ryan White CARE Act and the AIDS Drug Assistance Program and developing a National HIV/AIDS Strategy, it seems we forgot to demand the one solution that could eliminate the need for all the rest: the Big C. But though the subject of an AIDS cure has long been unmentionable, that doesn’t mean it isn’t possible, or even probable. In fact, surprisingly, given the lack of adequate funding, AIDS cure research has produced some really exciting breakthroughs. In an interview with POZ at the XVIII International AIDS Conference (IAC) this past July in Vienna, Kevin Frost, the CEO of the Foundation for AIDS Research (amfAR), said, “The research around a cure has been going very well. It’s one of the great, untold stories of AIDS today. Much of [AIDS cure] research is headed in a very positive direction, and there’s genuine enthusiasm in the scientific community about the possibilities of how we get there. We’re not going to get there tomorrow or next week, but there’s a growing sense of excitement about our progress that, for the first time, shines a light on the pathway to [the cure].” Optimism for a cure within the scientific community is at OCTOBER | NOVEMBER 2010 POZ 21
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n 1996, scientists thought they’d hit the cure jackpot with the debut of a new class of drugs called protease inhibitors (PIs) that made it possible to construct potent combinations of drugs equipped to attack HIV at multiple stages of its lifecycle. Protease-based combination therapy profoundly reduced the amount of HIV in the body. Many researchers believed PIs could permanently snuff out the virus after just a few short years of treatment. The hype increased when David Ho, MD, famously suggested, as did a December 1996 cover of Newsweek, that combination therapy could prove to be the cure. But the bubble of hope burst with the discovery that even people with undetectable viral loads harbor a small population of immune system cells that are literally “sleeping with the enemy.” These cells, a group of 1 million or so “resting” m e m o ry C D 4 c e l l s — semiretired holdouts from earlier immune system battles with microorganisms—are infected with HIV and go largely untreated by today’s crop of antiretroviral drugs. (ARVs
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only protect uninfected cells or keep active CD4 cells from producing new HIV.) Thanks to these cells, when most people stopped taking their multi-drug cocktails, the virus bounced back with a vengeance. Because it can take decades for the infected memory cells to either wake from their slumber (and allow HIV meds to do what they do best) or die a natural death, eradication via ARVs alone would require more than 60 years of uninterrupted therapy. The fact that HIV was capable of hiding in this manner—“latency”in medical terminology— dashed the hope that combination therapy could eradicate HIV from the body. When protease-based combination therapy proved not to be the cure, scientists and funders turned primarily to the development of a vaccine, the refinement of new treatment options and improved prevention tools. These areas offered greater hope for glory—and greenbacks. As a result, today we have many highly effective and better-tolerated ARVs. We have made important discoveries on the preventive and therapeutic vaccine fronts. And we are closer than before to developing effective microbicides (drug-infused gels that can be applied vaginally and/or anally and serve as a barrier to HIV infection). Meanwhile, we have spent relatively precious little money and effort on cure research. The National Institutes of Health (NIH) reports that it has spent $45 billion on all forms of AIDS research in the past 28 years. (In 2009 alone, the United States spent $20 billion on AIDS prevention and treatment for people stateside and abroad.) According to a report released recently by The AIDS Policy Project (APP), the NIH spent a mere 3 percent of overall AIDS spending (or $41 million of $1.5 billion) on AIDS cure research in 2009. The APP is calling the NIH to increase AIDS cure research funding five-fold—to $240 million—in 2011 and to $600 million a year within five years. Currently, the NIH spends nine times as much looking for a vaccine as it does looking for a cure. But the APP does not suggest the NIH “borrow from Paul to pay Peter” but rather that it ups the ante across the board; the APP suggests Congress should increase NIH funding (as President Obama promised during his campaign) by 20 percent, effective next year. A vaccine that is therapeutic (meaning it could help people’s immune systems keep HIV undetectable without ARVs) could constitute a “functional cure.” But there is a strong case to be made that recent knowledge on other research fronts begs as much devotion as our search for a viable vaccine. For too long, too many people have given up on the cure. The APP’s report claims that few outside the research community are aware of what’s going on with AIDS cure research,“not members of the general public, nor most health reporters. Nor the United States Congress, which decides how much to fund the National Institutes of Health. Not even most AIDS activists, who assume the cure is decades out of reach. And, most importantly, not people with AIDS themselves, millions of whose lives are at stake.”
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an all-time high. The challenge is getting the myriad possible options beyond a laboratory setting—and into human trials. In today’s medical research there is an gap (known as “the valley of death”) between exciting new scientific discoveries and the dollars, leadership and advocacy needed to turn those ideas into medicine we can use. Within the world of AIDS research, a prime example is the case of Paula Cannon, PhD, who works at the University of Southern California. She is using zinc-finger nucleases (ZFNs)—synthetic DNAbinding proteins developed by Sangamo BioSciences—to genetically alter stem cells capable of producing CD4 cells that don’t have CCR5 receptors. The big deal? HIV can’t bond with, and infect, CD4 cells that don’t have these receptors. The procedure worked well in mice that were specially bred to be born without immune systems so that they could receive transplants with ZFN-modified stem cells and then be exposed to HIV. Cannon, Sangamo and John Zaia, MD, are ready to conduct a similar experiment in HIV-positive patients with lymphoma who undergo chemotherapy. People living with HIV are willing to be subjects in Cannon’s trial. Cannon and her colleagues have been given an initial grant of $14.5 million from the State of California. But the rest of the money needed to turn her theory into practice is not looming on the horizon. For now, her hope for a cure remains trapped in the bodies of her mice.
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hy should we cure AIDS? While every disease deserves to get adequate funding to be cured, there isn’t enough money to cure all ills. Since we have to make brutal choices anyway, one way to do it is to fund solutions that will save the most lives. HIV/AIDS is the No. 1 cause of disease and death among woman and girls ages 15 to 44 worldwide. Nothing kills more women in the prime of their lives. And given that nearly 50 percent of the 33.4 million people estimated to be living with HIV on the planet are men, the death rate for men isn’t far behind. Also, unlike many fatal diseases that affect people at life’s end, HIV impacts young people, especially in the developing world. Which means HIV is drastically undermining the global workforce. And, when young people die, they often leave behind infants or young children and aging parents who, in turn, become a cost burden to society. And, by striking down millions in their prime, AIDS can greatly reduce nations’ gross national products. There are those who argue that a cure isn’t needed because treatment has rendered HIV infection a manageable, chronic condition. It can be for those who can get, afford and tolerate care. ARV treatment has been so successful that public health officials and researchers are considering “treatment as prevention.” By lowering people’s viral levels to a point at which they become considerably less infectious, the thinking goes, treatment could help stop the spread of AIDS. The use of ARVs to protect HIV-negative people from the virus (an approach known as “PrEP” for “pre-exposure prophylaxis”) is also being studied. (It has already been proved that when HIV-negative people take a 28-day course of ARVs starting within 72-hours of potential exposure to HIV, their risk of infection is greatly reduced. This approach, known at “PEP” for “post-exposure prophylaxis,” was the grounds for PrEP.) But for many reasons, lifelong treatment is far from the optimal solution for dealing with HIV. As we’ve already mentioned, it’s prohibitively expensive. The estimated lifetime cost of ARV medications can top more than $600,000 per person in the United States, according to a November 2006 study conducted by Cornell University researchers. And treatment doesn’t alleviate the many tough issues people living with HIV face. Pills don’t eliminate the threats of stigma, discrimination and criminalization. They don’t take away the fear that people will be unwilling to be your friend, to date or marry you or to take you home to their families. ARVs don’t remove the worry that you may inadvertently transmit the disease to someone else, including your baby. And given that we don’t know the long-term impact of the drugs themselves, compounded by the fact that people with HIV and on treatment are still at a higher risk than HIV-negative people for certain life-threatening diseases—like cardiovascular disease and cancer—ARVs are no guarantee caption goes here. against sickness and death. caption goes here. all people living with HIV should be aware of their Ideally,
status, be educated about treatment options and be given access to care should they choose to take it. But, the drugs aren’t the ultimate answer for those of us lucky to get our hands on them. And they’re certainly not the answer for the 5.5 million people who need drugs right now to stay alive and can’t get them. Stopping AIDS with treatment may seem like a sound public health strategy, but at this point it’s purely academic theory. Universal access to treatment for all who require it has, to date, proved impossible. According to UNAIDS, less than half of the 33.4 million people with HIV who need ARVs are on them. Not only have we fallen short to meet current need, but we’re highly unlikely to play catch up considering that for every two people we put on treatment, three more become infected. And then there are the challenges associated with getting people tested and linking them to care. In the United States, one person in five living with HIV doesn’t know his or her status, and of the nearly 750,000 Americans who know they have HIV, an estimated 350,000 of them are not accessing care and treatment. If we can’t achieve universal access in the United States, our prospects for achieving it globally seem dim. Ironically, the survival of more people with HIV makes it less likely, long term, that we will be able to care for them. And, because there are few new classes of treatment in the drug development pipeline, the number of people who exhaust the current set of treatment options will only grow. And more and more people contract HIV every day. The problem is getting exponentially worse on many fronts, daily. Positioning treatment as prevention is a persuasive argument for justifying the cost of getting the drugs to everyone who needs them. Given that universal access is an integral part of one of the United Nations’ eight Millennium Development Goals, anything that supports that goal is likely to be embraced by global health leaders. But as noble as the goal of treating all who require it is, putting the entire global population of positive people on pills seems to be virtually impossible. All roads, it seems, lead back to the necessity for a cure.
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hich is why perhaps, after many years of the cure being viewed as a pipe dream, the word is increasingly on the tips of more people’s tongues today. Are we close? While we’re not likely to see a cure in the near future, what we do in the next year or two will impact whether the cure comes soon—or not soon enough. To fast track the cure, we’ve got to get more people talking about it. As proof of how reticent people have been to say “cure,” consider that mainstream media barely covered the recent case of a man who has possibly been cured of HIV (albeit through impractical means). While speculation that combotherapy could ring in the end of AIDS once appeared on the cover of Newsweek, data showing that HIV may have been eradicated for the first time in a person appeared on a small poster at the far end of the exhibit hall at the 2008 Conference OCTOBER | NOVEMBER 2010 POZ 23
on Retroviruses and Opportunistic Infections in Boston. The poster told the story of an HIV-positive American, living in Berlin, who received a bone marrow transplant to cure his leukemia. The procedure, performed by Gero Hütter, MD, a German hemotologist at Berlin’s Charité Medical University, had a twist: The doctor re-introduced stem cells taken from a person with a certain genetic mutation that renders them (and theoretically the person to whom their cells are given) incapable of producing CCR5 receptors. Because HIV needs CCR5 to connect to and infect CD4 cells, not having it essentially renders a person immune to HIV. Two-plus years after the procedure,“the Berlin patient” as the American is colloquially known, remains apparently HIVfree. Certainly many questions remain. Has the patient really been cured? The jury is still out. Doubters wonder whether the diagnostic tests that probed for latent HIV in places like the lining of his gut and his brain were effective, meaning that he could still harbor the virus. There is discussion about whether it was the high-dose chemotherapy, the CCR5-deficient stem cells or a combination of the two that seems to have chased HIV from his body. No one knows whether the procedure can be successfully replicated, and the cost (up to $200,000 per patient) and health risks of such a procedure are high. One thing’s for sure: Whether the Berlin patient proves that a “functional cure”—near-complete immune system control of HIV in the absence of HIV treatment—is possible or whether his body holds the grandest grail of them all—a“sterilizing cure”in which every scrap of HIV is eradicated from the body—he is proof of concept that HIV may be able to be controlled by something other than ARVs. Few, including Hütter himself, are willing to say that AIDS has been cured, functionally or otherwise. But the findings of the Berlin patient and the research that contributed to Hütter’s gambit now inform current research. And they have helped invigorate the discussion around the cure. The case of the Berlin patient also illuminates another key point: It’s not up to the NIH alone to find the cure for AIDS. And money does not necessarily force scientific discovery, and throwing cash against research projects with little promise is a waste. The high-stakes and high-cost responsibility should be spread between mighty giants like the NIH and other outfits like amfAR (of which Hofmann is a board member), ADARC, AVAC, IAVI, France’s Agence Nationale de Recherches sur le Sida, the Canadian HIV Trials Network and independent academic centers throughout the world. It will take the combined efforts and resources of multiple governments and a lot of public-private partnerships. Private funding of independent biotech companies has always been a critical link in the solution to any disease. In a recession-struck world, high-risk funding dries up quickly whether that’s on the part of individuals, venture capital firms or even the pharmaceutical companies themselves. It is unfortunate, to say the least, that at a time when we need to spend most aggressively, we face a dearth of resources and willingness. 24 POZ OCTOBER | NOVEMBER 2010
Though we have long passed the tipping point at which it became clear that we needed to pour considerable funds into cure research, we haven’t invested the money. (Here’s where people cry,“Conspiracy!”) Indeed, the creation of a global market of tens of millions of patients who could live a full, healthy life as long as they took pills every day for the rest of their days does seem to be a pharmaceutical company’s dream. It is important to point out that the global HIV drug market is potentially becoming less profitable for the companies that make the drugs. If there were a way to pay for ARVs for 33.4 million people for the course of their lifetimes, it would pay to make the drugs. But given that the need for treatment expands as the resources to pay for the meds shrink, pharmaceutical companies are being forced to lower their prices (even abandoning patents earlier than before or, in some cases, coming straight out of the R&D pipeline to low-price-tag generic formulations). A Wall Street Journal opinion piece by Alec van Gelder suggested that “trampling over intellectual property rights removes drug companies’ incentives to invest billions of dollars in the development of the next generations of [ARVs].”And, as imperfect compliance leads to more drug resistance, there is an ever-increasing need for new compounds in general, and for getting a wide variety of drugs to the world at large. Historically, drugs with expired or nearly expired patents were offered to the developing world. Now, brand new formulations are required increasingly by nations and people who can’t pay for them. It’s another giant pink elephant in the room. Drug companies are for-profit. What will happen when it is no longer lucrative for them to make and distribute the meds? Already, we are seeing it happen. The pipeline for new treatments for HIV is nearly empty. Thankfully, the biotech and pharmaceutical industries stand to see a very healthy return on AIDS cure investments. In other words, finally, a cure may prove more profitable for them than a world of people on ARVs for the rest of their lives. And governments and insurance companies, which also bear the brunt of paying for HIV treatment, have a vested interest in heralding in a cure. One challenge is that the system itself is not set up to facilitate a cure for HIV. The same organizations (NIH) that fund basic biomedical research have no financial incentive to get a possible therapy to market. They are paid to discover the basic science, not develop it. And groups such as venture capital investment firms and pharmaceutical companies that could financially benefit from such development are shying away from investing in AIDS cure research, partly, because it has proved so expensive and challenging. One hope is that the epiphany that the global market for ARVs may not always prove lucrative may drive venture cap and pharmaceutical companies to get some skin in the cure game. It is not sufficient to say,“Whoever finds the cure for AIDS will be rich.” Unless we spend enough money on the search, not enough people will look, and we will be less likely to find it. It takes a lot of money to look. And it takes a lot of money to get basic scientific discoveries translated into potential therapies that are ready to enter clinical trials and, if all goes well,
get FDA approval. Consider this: The cost of researching and developing a single drug, from molecular discovery to pharmacy shelves, has been estimated as between $500 million and $2 billion—and that’s using the dollar value from a decade ago. The AIDS Policy Project’s executive director Kate Krauss sums it up best:“We have a chance to dismantle this pandemic. What we do now as activists could determine whether the AIDS pandemic lasts another seven years—or 30—and who will outlive it. We need nine times more money than we have right now for scientists to pursue genuinely original ideas. We need to build a pipeline to test in people not just one or two treatments but a steady and growing list of potentially curative therapies. A workable cure may involve more than one approach, so collaboration—virologist-immunologist, Parisian-New Yorker—is critical. Researchers collaborate in real time in multiple sclerosis research, why not also with AIDS? New funding has to reward new ideas and real teamwork. Is the scientific world ready to promote and encourage another Gero Hütter? Not yet. But it should be. This [moment] is a rare opportunity for philanthropists to step up and do something pivotal in the history of the AIDS pandemic.”
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n addition to awareness, advocacy, cash and scientific breakthroughs, we need to revolutionize the way we conduct AIDS research if we’re going to find the cure. To create a bigger, bolder, more diverse pipeline, we need to put as many promising options for the cure into pilot studies within the next two years as possible. The days of five-year, three-country, 5,000-patient studies should be numbered. As long as we can establish legitimate baselines of safety, we should be able to forge ahead faster and more nimbly to get the answers millions desperately need. Let’s see some five-month, five-people trials. Researchers can no longer toil alone in their ivory towers, holding their ideas and discoveries close to their chests. We need to encourage openness and collaboration. We need to give people incentives to work together. And we need to share learning between groups along the way, not just when all is said and done—and published in medical journals. What about a centralized database of cure research projects, perhaps one that could allow researchers to share findings—and best practices—ideally mid-study? We need to lure new talent from other areas of biomedical research (remember, the first man to perhaps technically cure AIDS was neither a virologist nor an immunologist). We need long-term, stable and flexible approaches to funding to allow scientists to focus on doing research, not applying for grants. We need to better track AIDS research around the world, across our nation and within the NIH. The AIDS Policy Project identified that the NIH had trouble tracking AIDS cure research, in part, because it had no code to do so. It does now. It has been suggested that advocacy efforts include appealing to the Office of AIDS Research, led by Jack Whitescarver, PhD, at
the NIH, to better follow the arc of AIDS cure research and that an annual report should be issued highlighting progress toward a cure. We need the United States’ National HIV/AIDS Strategy to more clearly spell out a plan for AIDS cure research. And to encourage its stewards to ensure that that happens. We need to educate members of the U.S. House of Representatives and the Senate about AIDS cure research so they will fund it properly. Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases (NIAID), a division of the NIH, (interviewed on page 28), recently announced a NIAID research grant named in honor of legendary treatment activist Martin Delaney. The grant allocates $8.5 million a year for five years to search for a functional cure. Sean Strub, POZ’s founder, said in response to the grant, “If Pharma [sic], the public health establishment and AIDS service organizations lobbied for funding for cure research the way they lobby (directly and indirectly) for ‘routinizing’ testing, PrEP, ‘Test and Treat,’ etc., this would be $8.5 billion rather than $8.5 million.“ Referencing the power of lobbyists for AIDS vaccine research, Françoise Barré-Sinoussi (who codiscovered HIV) said,“There is no equivalent for research into remission or [a] functional cure [for AIDS].” Barré-Sinoussi, who will head the International AIDS Society beginning in 2012, led a two-day workshop on the cure just before the IAC in Vienna. Thanks to pressure from advocates like the folks at the AIDS Policy Project and others, the tide may be beginning to turn. On August 31, Carl Dieffenbach, PhD, director of AIDS at NIAID, announced in a conference call with activists that “AIDS cure research”would be one of the top four NIH priorities next year. It is up to us to keep the heat on that promise. Accelerating the cure for AIDS will require more attention; more money; more, and new kinds of research; greater determination—and people living with HIV who are willing to enroll in pilot studies. Because while mice are nice, the fastest way to get to an actionable cure for AIDS is to test potential therapies, when proven safe, as quickly as possible in people living with the virus. Of all the things we need to do to hasten the end of AIDS, we need to not be afraid to dream of the cure and to say it out loud. Because when it comes to the cure for AIDS, we’ve already seen that it doesn’t pay to be quiet as a mouse. OCTOBER | NOVEMBER 2010 POZ 25
THE CURE HUNTERS
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T WOULD TAKE MORE PAGES THAN ARE HOUSED in this magazine to even begin to highlight all the innovative work being done around the world that could directly, or indirectly, help us find the cure for HIV/AIDS. But in order to give you a sense of the different types of approaches to AIDS cure research, we highlight a handful of teams hard at work trying to find the cure. Many of these people have yet to make big headlines because their research is still in its infancy. But they’re undoubtedly leaders in an ever-expanding pack of scientists dedicated to ending AIDS. There are currently two basic camps of HIV cure research: cell-based (or genetic) therapies and reservoir-based therapies (to address the issue of HIV hiding out in reservoirs in the body). But there is also the possibility of a“therapeutic vaccine”— a vaccine for people with HIV that would serve as a functional cure and achieve the same end as other functional cure approaches: no meds, HIV in check. That’s the general overview. Now, on to the specifics. CCR5 gene modification is a key area of AIDS cure research that is ripe with potential. Working in tandem with Sangamo BioSciences, a research team headed by Paula Cannon, PhD, at the University of Southern California is using zinc-finger nucleases (ZFNs)—synthetic DNA-binding proteins—to disrupt the gene in stem cells responsible for studding CD4 cells with CCR5. The procedure worked well in mice that were specially bred to be born without immune systems so that they could receive transplants with ZFN-modified stem cells and then be exposed to HIV. (Think: mini Berlin patients, with fur.) Cannon, working with Sangamo and John Zaia, MD, (whose
26 POZ OCTOBER | NOVEMBER 2010
other work is featured below), now hopes to conduct a similar experiment in HIV-positive patients with lymphoma who undergo chemotherapy. Carl June, MD, and his group are working at the University of Pennsylvania on their own Sangamo-supported study exploring what happens when CD4 cells are extracted from HIV-positive people, infected with a common cold virus containing ZFNs, and infused back into the patient. While this approach is less ambitious than Cannon’s stem cell method, results involving one patient have been encouraging—his viral load was slow to rebound during a treatment interruption after receiving the ZFN-modified, CCR5-depleted CD4s. June is also developing a gene-modifying technique using technology from England-based Adaptimmune, to enhance the receptors of killer CD8 cells to seek out and destroy all cells in the body infected with HIV. Zaia, at the City of Hope Comprehensive Cancer Center in Duarte, California, has his irons in many possibly curative fires. In addition to his group’s work with Sangamo and Cannon, they’ve also completed a preliminary study transplanting HIV-positive lymphoma patients with stem cells collected from their immune systems and modified to include genetic material—ribozymes and “small interfering” RNA (siRNA)— that block HIV from infecting new cells. Though the results were encouraging, additional studies are necessary to determine if this approach has true potential. Several biotech companies and academic centers are trying to develop the aforementioned therapeutic vaccines, designed to enhance and broaden the immune response to HIV in people already infected with the virus.
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A LOOK AT SOME OF TODAY’S HOTTEST AIDS CURE RESEARCH TEAMS
Julianna Lisziewicz, PhD, at Genetic Immunity in McLean, Virginia, for example, is developing DermaVir, a patch applied directly to the skin that contains HIV proteins. Also in early studies are compounds to improve the efficiency of dendritic cells and a vaccine from Argos Therapeutics that uses a patient’s HIV to tailor the immune response, to name a few. Thus far, results from therapeutic vaccine studies have been mixed—though they perk up the immune system, they haven’t yet exerted substantial HIV control over long periods of time without treatment. Another ambitious goal is to force latent HIV out of its hiding places in the body. Soon after reservoirs of sleeping HIV-infected CD4 cells were discovered, researchers set out to wake them with powerful immune-based therapies. While this helps purge HIV and render it susceptible to ARVs (a good thing), the process also causes people’s immune systems to go haywire, with potentially serious consequences (a bad thing). David Margolis, MD, and his colleagues at the University of North Carolina at Chapel Hill have been taking a kinder, gentler approach to lure out HIV and squash it. His group is experimenting with FDA-approved drugs that block histone deacetylases (HDACs)—a group of enzymes that keep HIV quiet in resting cells. Initial experiments using the HDAC inhibitor Depakote (valproic acid)—a med that treats epilepsy—were encouraging. Margolis and his team are now seeking funds to conduct a 20-person study of Zolinza (vorinostat), an approved chemotherapy for a type of lymphoma. Targeting HDAC, however, is just the beginning. A number of proteins and pathways believed to be responsible for HIV latency are also in scientists’ crosshairs. One such example is the ominous-sounding “programmed death-1” (PD-1), a protein found in high numbers on cells harboring HIV. By blocking PD-1 or the way it interacts with a molecule called PD-L1, it may be possible to purge the virus within. Fortunately, such compounds are in development for other diseases; unfortunately, very little is known about their potential regarding HIV. The process of screening an infinite number of drugs and natural compounds that can coax HIV out of latency can be expensive and time-consuming. Which is why the work of Robert Siliciano, MD, PhD, and his team at Johns Hopkins University at Baltimore is important. They have developed a lab protocol that can rapidly determine whether a chemical agent can get at HIV in resting CD4 cells, a process that can potentially shorten the development time of curative interventions by 10 or more years. Merck Research Laboratories, under the direction of Daria Hazuda, PhD, is also checking its collection of compounds using streamlined testing procedures.
Another potential problem with HIV infection isn’t that the immune system doesn’t work hard enough to clear the virus, but that it’s working too hard. According to Joseph McCune, MD, at the University of California at San Francisco, an overabundance of immune system activation to HIV simply ends up creating new targets for the virus to attack, causing HIV to overstay its welcome. McCune and his team are studying an enzyme called indoleamine-2, 3-dioxygenase (IDO) to determine if it plays a role in this vicious cycle. If so, the results may point to a new therapeutic strategy that could both decrease levels of immune activation—itself associated with some of the diseases commonly seen in HIV infection—and lower the amount of virus that persists, bringing us closer to a cure. The possibility of “functionally” curing HIV—in which the virus is present in the body but kept at undetectable or nearly undetectable levels—is real. About 1 in 300 people living with HIV are “elite controllers” and don’t require antiretroviral (ARV) therapy to keep their HIV undetectable, many of whom
“THE GOAL OF RESEARCH IS TO ENABLE PEOPLE LIVING WITH HIV TO CONTROL IT WITHOUT ARV THERAPY.” are enrolled in the International HIV Controllers Study, run by Bruce Walker, MD, at Harvard Medical School. The goal of HIV treatment research—and, indeed, HIV eradication research—is to develop therapies that enable all people living with HIV to control their virus without the need for ongoing ARV therapy. A critical step, however, is to understand what it is about elite controllers and other long-term nonprogressors that renders them nearly impervious to the effects of HIV. Walker and his team are searching for that answer. And, finally, it has been found that drugs that stimulate the immune system to either eradicate or functionally cure HIV infection may only stand a chance if HIV replication is stopped dead in its tracks. Therefore, before these agents are tried, it may first be necessary to intensify already potent HIV drug regimens with the use of additional tried-and-true agents. Brigitte Autran, PhD, is hard at work with her colleagues in Paris on two studies known as “ERAMUNE” designed to show a possible benefit of intensifying therapy with Isentress (raltegravir) and/or Selzentry (maraviroc). In ERAMUNE 01, patients will receive intensified ARV therapy plus Merck’s recombinant Ad5-based vaccine. In ERAMUNE 02, patients will receive treatment intensification plus Cytheris’s immuneboosted interleukin-7 (IL-7). Both trials began in July. ■ OCTOBER | NOVEMBER 2010 POZ 27
the POZ conversation
The Doctor Is In
Anthony Fauci, MD, has been the director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health since 1984. Here he speaks with POZ editor-in-chief Regan Hofmann about finding a cure for AIDS.
EDITED BY JENNIFER MORTON
COURTESY OF ANTHONY FAUCI, MD
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S THE DIRECTOR OF THE NATIONAL Institute of Allergy and Infectious Diseases (NIAID), Anthony Fauci, MD, oversees one of the biggest, and richest AIDS research portfolios in the world (NIAID’s total 2010 budget is $4.98 billion). Under his watchful eye, basic and applied science is developed in order to prevent, diagnose and treat infectious diseases (like HIV/AIDS). A key advisor to the White House and Department of Health and Human Services, Fauci was one of the original architects for the President’s Emergency Plan for AIDS Relief, and he has been instrumental in developing highly effective strategies for the therapy of people living with HIV, as well as being a champion of the search for an AIDS vaccine. Medically, his own work in labs has led to a greater understanding of how HIV destroys the immune system. The list of his awards (including the Presidential Medal of Freedom) and affiliations is too extensive for this small space. He’s an author, a father, a runner and the guy who has long personified the intersection of Big Government, science and AIDS. Years ago, when the HIV community demonstrated outside the National Institutes of Health (NIH), lobbying for early access to experimental treatment, Fauci suggested to security that several community members be brought into his office so he could understand their needs. While we may not always have liked what we’ve heard, Fauci’s constant willingness to interact with the community is laudable. One thing is for sure. When we need him, this doctor is always in.
Why is HIV such a difficult virus to control and cure?
It’s unique among human viruses in that it has the capacity, because of its genetic makeup, to integrate itself into the genome of your cells without killing the cells. Unlike other [viral] infections, like influenza, that your immune system can suppress and finally get rid of, once HIV integrates itself into your cells it forms a reservoir that remains untouched by your immune system or the medications. HIV’s ability to integrate itself into the genetic makeup of your cells is very unique— and very unfortunate. Are we seeing a legitimate resurgence in interest, dedication and energy put toward finding a cure?
Yes, I’m fairly certain—at least in my circles—that there is a new energy and a dedication to search for the cure. There are a couple of things that are converging right now. One is the excitement about the feasibility of the cure—the multiple ways you could approach it. The other is the necessity of having a cure given what we’re facing with the number of new infections and the fact that we [currently] need to keep people on therapy for the rest of their lives. Can you explain the difference between the types of cures and why some say there is a link between treatment and the cure?
[There are two types of cures:] an eradication cure and a functional cure. [A functional cure] is optimally for someone who has been on treatment and whose viral load has been brought to below detectable levels. It means a person can actually contain the viral replication without medication. OCTOBER | NOVEMBER 2010 POZ 29
Do you think people are afraid to talk about the cure? If so, why?
I think people are appropriately circumspect about talking about a cure. In 1996 and 1997 when protease inhibitors 30 POZ OCTOBER | NOVEMBER 2010
began to be used widely, there were mathematical formulas that said if you treat somebody over x number of years the virus should disappear. I think that was an interesting concept, but at the time many of us were skeptical because several things weren’t taken into account. Namely that reservoirs might last longer than projected. And the idea that when you get the virus below a detectable level that doesn’t necessarily mean there isn’t some residual viral replication going on. Unless your immune system is capable of suppressing the virus from rebounding, you’re not going to [control the virus] no matter how effective the drug is. So there is an understandable reluctance to talk about a cure. That’s the reason whenever I talk about the cure, I don’t talk about it as something that’s inevitable. I talk about it as a goal I believe is worth trying for. It is not going to be easy. But I believe it is feasible and it is one of our highest priorities. Are there things we should be doing differently related to our approach to cure research?
There is always room for improvement. When you broach a problem like this, there are a lot of unknowns and you have to strike a delicate balance between the ideas of individual investigators as well as programs you push in order to get to a certain goal. Individual research that people are doing may not necessarily flash up on the radar screen as research [that could prove useful in the development of an AIDS] cure, but it may be the fundamental basis of a discovery. That’s the reason it’s so difficult to tally all of the research [dollars] that are being spent on the AIDS cure. How do you attract new scientists and young thinkers as well as researchers from other fields to get involved with HIV research?
One of the problems [with] trying to stimulate interest in a program, and trying to get people who are not in AIDS research involved, is that they tend to follow the money. We are in an unfortunate situation where we’ve had a flat budget for the past several years. You can try with a modest amount like we did with the Martin Delaney grant [which awards $8.5 million a year for five years to support the search for a functional cure],
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When you take the person off therapy, [the virus] stays below detectable levels so the chance of transmission [is reduced]. There are a lot of ways to do that. The drugs we have now to treat people can effectively suppress their virus to below detectable levels and have an amazing impact on their longevity. But when you stop therapy, [the virus] will rebound in the vast majority of people. If you are talking about an eradication cure [one that removes all HIV from the body] then you’ve really got to talk about the development of new modalities of therapy that we don’t have in our [arsenal] right now. The earlier you treat an individual, the smaller their viral (or latent) reservoir is. We have data that [show] if you start therapy very early in someone and get their viral load below detectable levels, the size of their reservoir is much smaller than if you take a comparable person and don’t start therapy until years after [he or she contracted the] virus. You may still get their viral loads below detectable levels, but the size of their viral reservoir is considerably larger and is just sitting there ready to rebound. Also, if you treat people earlier in the course of their infection, you will preserve some, if not a lot, of their HIV-specific immune function. A person who has a larger viral latent reservoir and a much-diminished immune capability [is not as promising a candidate for a functional cure]. And the chance of a“therapeutic vaccine” [a potential form of a functional cure] being successful in someone who started therapy very early is much greater than in someone who [started] treatment late. That’s why the search for a cure goes hand in hand with aggressive testing, access to care and treating individuals early in the course of their disease. Preferably [we would treat people] within weeks [after they contracted the virus]. Most of the time this is not practical, but even if you can access the patient within three months, you can have a significant impact with therapy so the person has a very small reservoir after a few years of treatment. I would say start as soon as possible, but three months and perhaps six months [after infection] is still good.
but you’re not going to attract a lot of people from outside the field unless you start [seeing] things that look like they may be breakthroughs. Then people will jump in and say, “I’ll show you what I can do with my own approach toward it.” To be honest, there really are not a lot of overwhelmingly creative and new great ideas out there. We are searching for them, but it is unclear if there’s a linear relationship between how much money you pour into [a given field of research] and how good the [resulting] ideas are going to be. So the Delaney grant is intended to motivate, flush out and inspire some new thinking.
Exactly. [In the request for proposals, we encouraged scientists] to do anything they want, [as long as they believed it would help show] how we’re going to get a cure. Where does the Berlin patient fall on that curve? (The Berlin patient is an HIV-positive man who, after receiving a bone marrow transplant with cells specifically designed to prevent HIV replication, seems to have cleared HIV from his body.)
I think the Berlin patient falls under the category of a proof of a concept. [He is living proof that something other than antiretroviral medications can control HIV.] But [replicating the procedure] could be very impractical for large numbers of people. You are not going to transplant stem cells into anybody but the very rare individual. The justification for the Berlin patient transplant is that he would have died [from leukemia] if he didn’t get the transplant. You have a lot of people out there who are doing reasonably well on drugs and want to come off them, but it’s just not feasible [for them to undergo this procedure] because the risk of killing them is so high. The Berlin patient proved if a positive person had cells placed in his or her body that are not able to be infected with the virus, the virus is not going to infect those cells. But how do we safely transfer the CCR5 gene mutation to another person? We’re wondering whether or not that will ever be done. With all due respect to the Berlin patient, it may turn out that the concept is never going to be translated into a practical therapy approach.
claiming that only 3 percent of the NIH’s overall budget is dedicated to AIDS cure research funding—is that true?
No. The NIH spent about $45–55 million [on AIDS cure research in 2009]. But that does not include a lot of the things that [contribute to] working toward the cure—like intensive testing, treating people early so you can keep their viral reservoir low. The total AIDS spending at NIAID was $1.63 billion in 2009; as I mentioned, the total NIAID AIDS cure spending was $45–55 million in 2009. We gave the Philadelphia group all the information they asked for. But the problem when you give out specific numbers is you don’t capture all of the indirect things that feed into [the search for a cure]. What has it been like for you to work with the HIV community?
It’s been an extraordinary experience working with the community. Right from the beginning it was very clear to me that there was a tremendous amount of frustration, anger, fear and pain that drove the [early] activists to be very confrontational, but I actually learned a lot from what they were saying. I [came from] a different perspective, which allowed me to sit down and talk to them and figure out how we could optimize their energy and their insight, in order to make things better—from the research agenda to the user-friendliness of the clinical trial process to the regulatory elements of what the FDA would allow or not allow. One of the things I learned early on was the line from The Godfather, “This is business, not personal.” I was never put aback by the anger and the frustration—I just tried to empathize with how they felt, and I think that’s the thing that got me through some of those very tense moments. The activists were—and are continuing to be—extremely helpful to us. My feeling is the activists should continue to keep their ears to the ground about the kinds of things that are [needed]. Sometimes you can’t do anything about it, but I personally always keep an open ear to what people have to say. The epidemic has evolved culturally, socially, scientifically, financially and politically. What three things would you like to see done?
Everything is in the early stages, and I haven’t seen everybody’s work, but of what I have seen, no one has shown me anything that has made me say, “Wow.”
We really need to emphasize the whole issue of aggressively testing and linking to care and treatment. The other thing is to pull out all the stops on prevention—be it microbicides, vaccines, testing or counseling. And finally, the thing that started our conversation: the cure. They’re all linked— they’re three separate things—but they’re all linked.
If we had to put an emphasis on treatment, prevention or
You have an amazing legacy in the scientific world. Where do
research—even temporarily—would it be fair to say that
you go from here?
Is there anything being studied that excites you—anything you think is a little closer to having a practical application?
emphasis should be placed on AIDS research?
I think we have to be careful with that. The answer is theoretically yes, but you can say the same thing for vaccines, the same thing for microbicides. It’s tough to say that we [need] to pull [funding away from one area] to fund something else. The AIDS Policy Project in Philadelphia released a report
I’m going to stick it out until we have this thing really under control. We’ve got some major goals ahead of us that are challenging and daunting but exciting. One of which is a vaccine. Another goal is preventive modalities for women that work like microbicides. And the other goal is getting people who are on therapy to be able to stop their therapy. I have a lot more to do—that’s what keeps me in the game. ■ OCTOBER | NOVEMBER 2010 POZ 31
A C H I E V I N G
Pedro Julio Serrano was interviewed on CNN en Español immediately following a federal judge’s decision that declared California’s Proposition 8 unconstitutional. His appearance helped frame the issue of gay marriage for millions of Spanish-speaking people around the world. “This is an incredible victory. Not only for same-sex couples but for all citizens because there is an acknowledgment of an equality promised by the federal Constitution of the United States,” Serrano said during the broadcast. “This decision demonstrates that the rights of citizens can never be put up for a popular vote.” Initial reactions to his appearance were favorable from people all over Latin America. But after gay Latino blogger Andrés Duque subtitled the interview in English and posted it on his blog Blabbeando and on YouTube, praise for Serrano started pouring in from all corners of the globe. Although flattered by the international attention, for Serrano, it was just another moment to stand up for what he believes in. He’s had many such moments in his more than a decade of advocacy. The 36-year-old was the first openly HIV-positive and openly gay person to run for public office in Puerto Rico, where he was born and raised. In 2003, he founded Puerto Rico Para Tod@s (Puerto Rico for All), a lesbian, gay, bisexual and transgender (LGBT) equality and social justice group. He currently lives in New York City and works as the communications manager of the National Gay and Lesbian Task Force, whose mission is to build the grassroots power of the LGBT community. Other recent events such as the brutal murder in 2009 of Jorge Steven López Mercado—a gay teenager who was an established HIV activist in Puerto Rico— have put Serrano in the nexus between HIV and Latino LGBT issues. After hearing about the crime, Serrano immediately reached out to López Mercado’s family and helped them navigate the media and to advocate on their behalf with local officials to prosecute the murder as a hate crime. Clearly Serrano is a committed and effective advocate for people living with HIV/AIDS and for LGBT civil rights. “If it hadn’t been for HIV, I wouldn’t be an activist,” Serrano says. “A virus is not stronger than me that has a mind, that has a heart, that has a soul, that has a body to fight it. That has been my guiding light.” —ORIOL R. GUTIERREZ JR. Search “Pedro Julio Serrano” at poz.com to read an extended interview with him and to watch his Prop 8 appearance on CNN en Español.
32 POZ OCTOBER | NOVEMBER 2010
STEVE MORRISON
No Hate
Quest for the End of AIDS Nearly 30 years after HIV was first identified, there is still no cure for the virus. While treatment advances have rendered HIV a manageable disease for most of those who can access care and treatment, the lives of millions of others who can’t access treatment depend on the cure. POZ wants to know your thoughts on this issue.
1
Are you aware of the case of the Berlin patient (the man who has potentially been cured of AIDS)?
9
❑ Yes ❑ No 2
3
❑ Yes ❑ No
Do you think a cure for HIV/AIDS will ever be found?
10 What year were you born? _ _ _ _ _ _ _ _
❑ Yes ❑ No
11
How important to your sense of well-being is the idea that scientists are searching for a cure?
12 What is your sexual orientation?
❑ Straight ❑ Gay or lesbian ❑ Bisexual ❑ Other
❑ Somewhat important ❑ Very important ❑ Not at all important 5
How do you define a cure?
13 What is your ethnicity?
❑ Eradication (total elimination of HIV) ❑ Functional (complete suppression of HIV without meds) ❑ Other:_____ 6
❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other:_____
Do you think enough money is being spent on finding a cure?
❑ Yes ❑ No 7
Does the hope of a cure give you an incentive to connect to care and better adhere to treatment to ensure that you will be alive when it’s found?
14 What is your annual household income?
❑ Less than $15,000 ❑ $15,000–$29,999 ❑ $30,000–$44,999 ❑ $45,000–$59,999 ❑ $60,000–$74,999 ❑ $75,000–$99,999 ❑ $100,000 or more
❑ Yes ❑ No
DREAMSTIME
8
Do you think pharmaceutical companies are actively trying to prevent a cure?
❑ Yes ❑ No
What is your gender?
❑ Male ❑ Female ❑ Transgender ❑ Other
Do you think a cure will be found in your lifetime?
❑ Yes ❑ No 4
Would you be willing to participate in research that could lead to a cure?
15
What is your zip code? _ _ _ _ _ _ _ _ _ _
Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #167, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424