As 2013 begins, let us contemplate where we have been and where we are going in the fight against the HIV/AIDS epidemic. Below are ten key events of 2012 that will not only shape the character of 2013, but also shape the future of the HIV/AIDS prevention and treatment fields.
1. We are currently three decades into the HIV/AIDS epidemic, and for the past year, the mainstream media publicly reflected on the 30th anniversary of HIV/AIDS. Those working in the HIV/AIDS field similarly pondered the future and noted (sometimes with trepidation) that changes were coming. In the latter half of 2012, the HIV/AIDS field seemed to recognize that reflection only got us so far, and that the time for reinvigorating interest and maintaining awareness was as important as ever. In the course of three decades, more than 1.7 million people in the U.S. are estimated to have been infected with HIV, including over 600,000 who have already died and more than 1.1 million estimated to be living with the disease today (CDC, HIV Surveillance Report, Vol. 22; 2012.) To honor the memory of those who work or worked, lived, and died to serve the HIV/AIDS infected and affected, we need to keep the end goal of an AIDS free generation in our sights.
2. Renewed interest in HIV/AIDS was spurred in the documentary film community. Several documentaries were released, promoted and discussed nationally in a positive step towards ensuring that HIV/AIDS remains in the public consciousness. One of these documentaries (which is up for Oscar consideration), David France’s How to Survive a Plague showcased the early struggles to ensure that HIV was give due attention by an initially ambivalent public health field that labeled AIDS a “gay men’s disease”. The tagline for the movie includes “They Wouldn’t Take No for an Answer in the Battle Against AIDS.” It serves as a great reminder of what activism used to look like. We have seen renewed activism this past year in terms of Occupy Wall Street, but is it the kind of commitment to fighting social injustice that persists? The crowds in Zucoti Park have long since dispersed and Wall Street continues to grind its gears. This past year, we also saw the release of Frontline’s Endgame, Public Broadcasting’s documentary exploring AIDS in Black America, highlighting the differential impact of HIV/AIDS on the black community in the U.S. Also, the documentary Deepsouth premiered at the International AIDS Conference, subsequently traveling on a screening circuit throughout the southern US during the second half of 2012. As Kathie Heirs, CEO AIDS Alabama, notes in the documentary, “we don’t have high paid lobbyists; we don’t have a lot of money. Here are some of the things we do have: the most people living with HIV & AIDS, the most poverty, the most sexually transmitted infections, the most people without health insurance, the most vulnerable populations, the fastest growing epidemic, the least access to healthcare, the highest mortality rates, and the least resources to deal with this crisis.”
3. The 2012 International AIDS Conference, held for the first time in the United States in over 20 years, emphasized that it was a time for change, and awareness of the changing medical environment. Where the aforementioned documentary films highlighted the need for safety nets, advocacy and the understanding that HIV is a result of a “social syndemic”, the International AIDS Conference heavily emphasized biomedical advances. There was lip service paid to the need to marry the biomedical with the behavioral, but the question of how the disenfranchised can access treatment as prevention was never fully addressed. It’s great to have more effective treatments, but when those treatments are unlikely to reach those in the most need due to expense, lack of insurance, lack of proper health care safety-nets, or lack of education, biomedical advances seem a whole lot less revolutionary. At a recent panel discussion, one of my co-panelists (a physician) repeatedly emphasized that PrEP was the only viable way forward in combating HIV/AIDS. However, that co-panelist never answered my question as to how we get meds into the hands of those need it. In the words of noted activist Larry Kramer back in the 80s “The government didn’t get us the drugs. No one else got us the drugs. We, Act Up, got those drugs out there. That is the proudest achievement that the gay population of this world can ever claim.” Pointedly, we can talk about all the biomedical advances we have been making, but without activism (both internal and external to the public health field) those advances won’t reach the needy.
4. Catch Phrase Craze: In 2012, our meme-based internet culture and global entertainment industry assured that catch-phrases were all the rage: Have you heard any of these phrases this past year: “AIDS-Free generation”, “Treatment as Prevention”, “Stigma kills”, and “The train has left the station”. To quote Elaine of Seinfeld, “Yada-yada-yada.” We hear these phrases so often I am not too sure they have any impact anymore, or at least have such limited impact that coining a phrase is neither an achievement nor influential factor. The catch phrase will change tomorrow. Furthermore, everyone has their talking points and for the most part people stick to them. It’s as if people think they are being shadowed by a reality TV show for which they need their not-so spontaneous soundbites.
5. Pre-exposure prophylaxis. In July 2012, the Food and Drug Administration (FDA) approved Truvada for pre-exposure prophylaxis. Consequently, Truvada became the first approved drug to reduce HIV risk for unaffected people in high-risk situations. Gilead, the company that produces Truvada saw its sales jump by more than 10% over 2012’s first nine months. This new approved use of Truvada is heralded as an important step toward HIV prevention, rather than simple treatment. There are concerns however over side-effects and possible development of resistance if the drug is not taken consistently and under medical supervision. Which brings us directly to the issue of access to care.
6. We must ensure access to quality care: Currently, fewer than one in five people living with HIV in the United States has private insurance and nearly 30% do not have any coverage at all. While the recent upholding by the Supreme Court of the Affordable Care Act’s constitutionality is perhaps a step towards ensuring those that are HIV positive access care, there is still the issue of Medicaid expansion on a state-by-state basis. Many states that have the largest rate of AIDS diagnosis (namely in the American South) are the same states that won’t engage in Medicaid expansion. We must also remember that the social syndemics alluded to in the Deepsouth documentary such as homelessness, mental health issues, substance use, discrimination and poverty can serve as potential barriers to accessing care.
7. Over the counter HIV testing. In order to remove one barrier to HIV testing, an OraSure at-home HIV test was approved by the FDA in early July of 2012. The OraQuick take-home test is potentially a landmark moment for the HIV movement as a whole; identifying and treating the disease early could significantly impact transmission rates of a disease that infects 50,000 Americans annually. Some major pharmacies (for example, Duane Reade) began selling OraQuick in October. If there wasn’t stigma surrounding HIV/AIDS testing, we wouldn’t have to work so hard to get our prevention messages out there. Unfortunately there is stigma of testing, and the introduction of easy to obtain, home tests is a true socio-medical advancement.
8. Barely discussed technological advances. While PrEP and other biomedical advances received huge recognition in the media and in the HIV field overall, there were two technological advances that seemed poised to change the HIV landscape, but barely registered in public or media consciousness: a new type of female condom and a CD-4 Pinprick. Researchers at the University of Washington (Ball et al., 2012) are exploring how to use “electrospinning” to create the next-generation female condoms made from specially customized nano-fibers. The condoms can be woven out of medicines that prevent HIV infections, providing protection against disease while also stopping sperm in their tracks. The electrospun condoms can be designed to dissolve within minutes, or over a period of several days. This past year, there also were new diagnostic devices that can possibly have a large impact on the developing world and perhaps in the US as well as we find new ways to implement “treatment as prevention.” Of particular interest is this new device which uses a dipstick test to assess a person’s CD4 count from a pinprick drop of blood. Such a device can help to take immediate measures to address changes in well-being.
9. Changes in the HIV/AIDS funding landscape. In 2012, U.S. federal funding to address HIV totaled $27.7 billion. Of this, 53% was for care, 10% each for research, cash, and housing assistance, 3% for prevention, and 23% for international needs. Note, the 3% for prevention. With sequestration still a looming threat at the beginning of 2013, I would expect less funds to be allocated towards prevention. With such a small piece of the budget pie going towards prevention, the role of community based organizations will correspondingly shrink and change. Many organizations have already closed or merged in 2012. Those that are still managing to stay afloat (not necessarily thrive) are doing so by mission shift and creep. Speaking of which…
10. Changing workforce. Due to three decades of the fight. Due to funding cuts. Due to changing funder mandates. Due to having to do “more with less” (as Bill Clinton exhorted at the international AIDS Conference). Due to different emphases such as treatment and care. There are major shifts in leadership; with many of those long in the field retiring or moving onto new fields. There are high rates of burnout. There are new skill sets that are required to do the work. There may even be a workforce that no longer so closely resembles the epidemic. What started off as a grassroots movement has become a much more medicalized model of awareness raising, outreach, prevention and supportive service. That said, the “do more with less” attitude that permeates management thinking from corporate America to struggling non-profits to funders is a sign of the economic times. It’s the inter-organizational equivalent of telling an employee, “You’re lucky you have a job at all”. Is there any limit to doing more with less? At what point should we be expect to do “everything with nothing”.
In the three decades-long fight, we’ve come a long way. Today, an HIV diagnosis is not the death sentence it was considered to be in the 1980s. Treatment advances have made it possible for those with HIV/AIDS to live long and healthy lives — as long as they have access to treatments and adhere to their medications. A systems approach to delivery of care that encompasses access, education, and an awareness of understanding and readiness to receive care is certainly required, but while we elaborate complex socio-medical systems to maximize effective care, we must do so without losing our sense of humanity, without alienating those we hope to help. We must not lose our human touch. In 2014, the International AIDS Conference will be held in Melbourne, Australia. Hopefully, by then the conference presenters will be able to talk about the marriage between biomedical and behavioral advances and efforts; along with how far we will have gone towards truly achieving an AIDS-Free generation. Australia here we come!