July 31, 2012
Project Inform's influence was felt, both directly and indirectly, at the 19th International AIDS Conference that took place July 22 to 27 in the nation's capitol. On topics ranging from HIV cure science to pre-exposure prophylaxis (PrEP) to treatment as prevention (TasP) to Hepatitis C advocacy, the day-to-day work of PI is paying off in extraordinary ways. Certainly, our organization doesn't do it alone, but the specific expertise that PI brings to the table helps add urgency and practical power to realize the goal of turning the tide on the epidemic, which was the theme of this year's conference.
Whether presenting at the conference, marching in protest in the streets of Washington, or proving leadership and vision on a day-to-day basis, here's a brief wrap-up of the areas where PI played a role.
At this year's conference, the International AIDS Society (IAS) launched its roadmap to cure research, a strategy for achieving either a sterilizing cure -- where every trace of HIV is removed from the body -- or a functional cure -- where HIV remains in the body, but is kept almost fully in check by the immune system. Project Inform submitted feedback on this proposal in early 2012.
As part of the strategy's launch, IAS held a pre-conference, called "Toward an HIV Cure," where scientists presented the latest available data on methods to measure, understand and perturb the silent hidden reservoir of HIV that is able to reignite the disease when antiretroviral (ARV) therapies is removed, as well as early data helping us understand better what helps a rare group of people called "Elite Controllers" control the virus without ARV drugs. Two particularly promising studies presented at the preconference suggest that several people may have already achieved either a sterilizing or functional cure, but more research is needed.
Project Inform's earlier think tanks on cure research in 2008 and 2011 helped inform the strategy and also attempted to identify methods for speeding the pace of cure research -- some of which have been put in place. This work has also culminated in a partnership, led by the Forum for Collaborative HIV Research that will hopefully soon offer additional concrete steps that can be taken in this regard.
Also tangential to cure research is a set of related questions. First, will people living with HIV be willing to enroll in studies that might cause harm, will almost certainly not cure or perhaps benefit them in anyway, but which might advance the field of cure research? In other words, will people participate for altruistic reasons? While the answer might seem obvious to some, there have been questions about whether people, particularly people with HIV who are recently infected or who are doing exceptionally well on therapy would be willing to take these risks. A second related question is how much risk should people be permitted to take for trials where the primary benefit will be primarily one of altruistic satisfaction.
To help answer these questions, Project Inform's David Evans, along with Houston activist, Nelson Vergel, fielded a survey earlier this year. Evans presented some of the data from this study at the conference. The survey results will be published in full in the near future, but in short, Evans and Vergel found a high degree of willingness on the part of people with HIV to enroll in studies for purely altruistic reasons and that even recently diagnosed individuals were willing to do so. PI, in partnership with researchers in Seattle, hope to field a second study soon to explore this question more deeply with a more diverse group of individuals in the United States, and to also help answer the second question about the ethics of altruism and risk. These efforts will also be harmonized with activists working in other countries in Europe and in Australia.
Project Inform's efforts to support the FDA approval of tenofovir disoproxil fumarate (TDF) + emtricitabine (FTC) for PrEP have resulted in a sea change in attitudes internationally towards PrEP. Even countries that once expressed severe skepticism about PrEP have softened in their attitudes toward this promising strategy, whereby HIV negative individuals take HIV drugs to prevent them from becoming infected with the virus. Subsequent to the FDA's approval of TDF+FTC for PrEP, the World Health Organization and a group of South African medical policy makers offered guidance on PrEP and suggested that it be made available through demonstration projects to individuals at high risk of HIV infection globally.
Project Inform cooperated in the development of a session held at the conference to explore how PrEP may be implemented globally. Though the panelists -- who represented South Africa, Uganda, the United States and Brazil -- remarked on the tremendous hurdles involved in making PrEP accessible to those who need it most, all felt it could be an incredibly promising targeted intervention and that efforts should be undertaken to understand not only how best to use it, but also how to identify and mobilize resources to make it available where it can do the most good.
Project Inform has previously played a leading roll in the creation and adoption of the National HIV/AIDS Strategy and continues to work toward implementing the goals set out in the strategy to ensure escalated efforts to get people tested and to offer those who test positive access to antiretroviral therapy and health care. Project Inform's tireless advocacy for full implementation of the Affordable Care Act (ACA), a.k.a. "Obamacare," acts as a center point to these efforts in the United States. Additionally, Project Inform is actively engaged in projects aimed at using novel methods to help ensure that when a person is diagnosed with HIV, they are adequately linked to health care and that they remain engaged in that care.
These efforts not only preserve the health and lives of the expanded number of people with HIV who are linked to and retained in affordable HIV care, they may also significantly contribute to lowering the number of new HIV infections in the United States, as research shows that people who access care and treatment will be far less likely to pass on HIV to others due to the adoption of safer sex behaviors and the substantial reduction in risk of passing on HIV due to control of the virus by ARV therapy, what we are calling "treatment as prevention" or "TasP."
TasP was a hot topic of exploration at the conference and in every session devoted to looking at TasP's potential within the United States, the impact of the ACA and the need for increased effort to link and retain people in HIV care were center stage.
The United States is the only developed country lacking some type of national health system. The passage and implementation of the ACA marks a turning point in health care for all Americans, including people with HIV. For the first time, most people with HIV will have access to affordable, secure health care regardless of disability status or income.
Health care reform is a cornerstone of the efforts to reach the goals of the National HIV/AIDS Strategy. Unfortunately, it has also been the target of many opponents challenging the law and its provisions legally and through the political process. Effective implementation remains a challenge for people with HIV and their advocates. Project Inform has been a leader in the passage of the law, defense of health care reform and the programs that people with HIV depend on, and implementation efforts that serve the needs of people with HIV.
Project Inform with its partners founded and maintains www.hivhealthreform.org offering information on HIV and health care reform and monthly webinars focused on implementation and community preparation for health care reform.
Several sessions at the conference focused on expanding hepatitis C virus (HCV) testing and access to care, two efforts about which Project Inform is deeply engaged. Despite the relative wealth of the United States, the vast majority of those infected with HCV infection in this country remain undiagnosed. What's more, HCV care and treatment often requires access to diagnostic tests and support services that are outside of the reach of many individuals who do know their status. Lastly, current and former drug users require a level of culturally competent care that is in vastly limited supply, as well as a government that is overtly hostile to them, recently made obvious through the reinstatement of a ban on syringe exchange, along with stepped up efforts by law enforcement to prosecute drug users.
Though circumstances are much worse in some parts of the world for people at risk for or infected with hepatitis C -- this is particularly true in Russia and other former Soviet countries, South East Asia and the Middle East -- there is overlap, particularly in the area of stigma and access to care, and Project Inform's policy efforts in this regard, and the experience of helping launch the 877-HELP-4-HEP helpline (with four other hepatitis C serving agencies), may offer models that others can follow.