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A QUARTERLY JOURNAL ON HIV PREVENTION, TREATMENT AND POLITICS VOLUME 5, NO. 4 acHIeVe INSIDE ENDING HOMELESSNESS TO END AIDS 5 AIDS The battle for housing for those living with and at risk for HIV. Activism Personal Perspective: CAUGHT IN THE MIDDLE 9 I found myself in a Single Room Occupancy (SRO) building – a real dumping ground for people with AIDS. RECTAL MICROBICIDES 11 Fight Back! How do we rethink decades of prevention programs that equated condoms with safer sex and left few other choices? End AIDS! THE BATTLE TO END AIDS: by Matt Sharp Three Decades of SHOW ME THE MONEY! 14 Treatment Activism Will we increase global AIDS funding or pproaching the long line of In the early days of the epidemic, peo- listen to the “fiscal ple with AIDS and their advocates set cliff-jumpers” and cars at the Tijuana border, Jim Corti was not afraid, the stage for many victories in govern- continue flat- ment and institutional policy, scientific funding? even though his trunk was packedA with boxes of medications from research and clinical trials, treatment Personal Mexican pharmacies. As he reached the access, and drug pricing. Corti was one of the first activists who went to such Perspective: checkpoint he hoped he would be waved extremes. But he was only one of an THE ROAD LESS through once again. unprecedented wave of activists, some TRAVELED 18 He was on a mission to bring poten- of whom met in the boardrooms of drug tially lifesaving HIV drugs, not yet companies and in the offices of health THE CLOCK IS TICKING: approved here, to the U.S. It was the PREPARING FOR THE ACA 20 policy makers while others committed late 1980s and many said that using civil disobedience in the streets. In less than a year, major parts of the unproven drugs was unsafe, but there Affordable Care Act will go into effect. Few treatment activists had science, were no approved treatments and little statistics, or policy backgrounds. Most EDITORIAL 23 research to find them. People were dying, were just passionate to live and took the so they took action in order to survive. time and energy to learn everything they Ultimately, this illegal smuggling proved could by reading, studying, attending Achieve is a joint publication of futile in stopping HIV, but forced the journal clubs, and engaging in long debates ACRIA and GMHC. FDA to revise the laws around importing with their comrades. AIDS activists knew drugs for personal use. that in order simply to stay alive they had continued on next page Treatment Activism cont. from previous page budge. Despite the massive protests, changes were not seen until months after- ward. But access to experimental drugs was acHIeVe to unleash their power by educating and eventually approved by the time of the sec- mobilizing their own communities. ond AIDS drug, Videx. A mechanism that EDITORS IN ChiEF allowed access to a new drug in a “parallel Daniel Tietz Drugs Into Bodies track” to clinical trials was put in place by Janet Weinberg On a cold day in October 1988, ACT UP the FDA. It was a win-win situation. stopped all work at the FDA in one of the EDITOR most remarkable AIDS demonstrations Pricing Battles Mark Milano ever. “SEIZE CONTROL OF THE FDA!” Drug company greed has always been a CONTRIBUTING EDITOR centered on “getting drugs into bodies”. huge focus of AIDS activists, since prices Robert Valadéz The action was incredibly sophisticated. were so extreme. One of the first major with media and legal coordination, street battles was over AZT, the first approved ASSOCiaTE EDITORS theatre, and civil disobedience outside AIDS drug. Burroughs-Wellcome had no Luis Scaccabarrozzi while activists from the Treatment and idea the anger its price – an astonishing Elizabeth Lovinger Data Committee of ACT UP met with the $10,000 a year – would trigger. Several MEDICAL EDITOR FDA on the inside. ACT UP actions culminated in the famous Jerome A. Ernst, MD In those days only AZT had been New York Stock Exchange demonstration PUBLICATIONS MANagER approved, and experimental drugs were in September 1989, when activists chained Mark Milano simply not accessible. Treatment activists themselves to the trading floor balcony felt that there were safe ways to provide early and stopped trading by dropping a ban- PUBLICATIONS ASSOCiaTE access to new drugs, but the FDA wouldn’t ner that read “SELL WELLCOME”. Days Laura Engle For information on how to obtain bulk copies of Achieve, call 212-924-3934, ext. 134, email The Robert Mapplethorpe [email protected], or write to Clinical Research Program Achieve 575 Eighth Ave, Suite 502 Prolastin-C Cenicriviroc (TBR-652) New York, NY 10018. People with HIV aged 18 to 65 will People with HIV who are 18 and older Copyright © 2013 AIDS Community receive weekly infusions of the and who have not taken HIV meds will Research Initiative of America and proteinase inhibitor Prolastin-C or a take either Cenicriviroc (an experi- placebo for 8 to 16 weeks, to study its mental CCR5 inhibitor) or Sustiva Gay Men’s Health Crisis. effect on CD4 counts. People who are for a year. Everyone will also take All rights reserved. Non- HIV negative will have lab tests done. Truvada. commercial reproduction is encouraged provided appropriate BMS-663068 Ibalizumab credit is given. Subscription lists People with HIV who are 18 and People with HIV will receive infusions are kept confidential. older will take BMS-663068 (an of ibalizumab (a monoclonal antibody) experimental HIV attachment inhibi- to study its safety and effect on the Photos used in Achieve imply tor) or Reyataz for up to 96 weeks. immune system. nothing about the health status, Everyone will also take Isentress sexual orientation, or life history and Viread. Selzentry of the models. People with HIV who are 18 and Every “Personal Perspective” in BI 201335 older and who have not taken HIV meds will take either Selzentry or Achieve contains the views and People aged 18 to 70 who have hep- Truvada for 22 months. Everyone will opinions of the attributed author atitis C virus will take BI 201335 (an experimental HCV protease inhibitor) also take Prezista with Norvir. and does not necessarily repre- with peg-interferon and ribavirin for sent the views and opinions of 12-48 weeks. ACRIA or GMHC. For more information on these trials, contact us at 212-924-3934, ext. 100. ISSN 1948-0687 (print) Compensation is available for some ISSN 2165-4883 (online) studies. 2 VOL. 5, NO. 4 acHIeVe later, Burroughs-Wellcome lowered the Fuzeon came along at a time when The meat of its work is interaction with price to $6,400 a year. It was the begin- people who had become resistant to the pharmaceutical industry and the ning of a tedious fight with the industry older HIV drugs needed new ones. But FDA. Veteran activists created the group that continues today. its approval wouldn’t have happened because treatment activism was lagging Today, sophisticated meetings regu- without constant advice from treatment and there was a need for a national coali- larly occur between expert drug pricing activists, who advised Trimeris in its tion, including the mentoring of a new activists and drug companies. The Fair early development. The compound was generation of treatment activists. Pricing Coalition (fairpricingcoalition. bought by Roche, approved, and no doubt AIDS treatment activists have pro- org), started by Martin Delaney and oth- saved lives – at the very least extending vided a model for representation in the ers in 1998, has become the consumer them until better drugs were approved. FDA drug approval process. For years watchdog of HIV and, more recently, Activists, who were at the table at every there has been a seat at the table at FDA hepatitis drugs. These activists have had step of its development, were nevertheless advisory hearings where HIV drugs are a major impact on pricing policy. furious when it became the highest priced given the “once-over” by researchers and According to Lynda Dee, a member AIDS drug up to that time, at $25,000 a community members. The hearings are of the FPC, “HIV is the only disease for year (see picture below). a very sophisticated process that have a Activists, who were at the table at every step of Fuzeon’s development, were nevertheless furious when it became the highest priced AIDS drug up to that time, at $25,000 a year. which industry consults the community before a price is set.” The group has also helped to ensure that all companies have decent patient assistance and co-pay Clinical Trials: At The Table direct impact on the lives of people with assistance programs. It’s a “kindler-gen- AIDS treatment activists have been a HIV. Combing through clinical trials and tler” form of AIDS treatment activism powerful voice in the design and imple- understanding the complexities of safety than street protests, but a critical part of mentation of clinical trials. From writing and effectiveness data are not simple changing stubborn pricing policies. background documents to the creation tasks, but the responsibility of represent- of Community Advisory Boards, they ing people with HIV is equally difficult Research changed the clinical trials process. and necessary. This would never have The scientific knowledge AIDS treatment Participation in research meetings and happened had it not been for the early activists have gained is unprecedented. conferences forged relationships with activists who demanded community rep- This self-education was necessary to force researchers and policy makers, and com- resentation at this very critical point of scientists to take notice and change pol- munity members are now rarely left out of the drug approval process.

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