For almost 10 years, I have traveled with a group of graduate students to London, England each January. During the two weeks we spend together, we enact a course of study that examines the HIV epidemic, particularly the medical, behavioral, and social issues that have shaped our battle against HIV/AIDS for the last 30 years, and examine the responses to the epidemic in the United States as compared to the United Kingdom. The UK provides an excellent contrast to the US with its provision of healthcare under the National Health Service, a single-payer system which is entirely funded through central taxation. Despite the radically different approaches to healthcare funding, there are many similarities with regard to the course of the AIDS epidemic in the two countries, including but not limited to the perpetuation of the epidemic in gay and black populations.
Every year, one theme seems to most dominate the course of our studies. This year, much of our discussion and study focused on the emergence and implementation of biomedical technologies to combat the spread of AIDS, namely treatment as prevention and Pre Exposure Prophylaxis (PrEP). It is the former that provided the most lively and heated discussions for the group and for me provided another perspective on the problems associated with this particular approach.
The concept of treatment as prevention is a logical one. Effectively treat those living with HIV, thus reducing viremia and in turn rendering HIV-positive individuals as less infectious. The Swiss Statement clearly supports this idea, and numerous studies including HPTN052, have demonstrated the effectiveness of this HIV prevention approach. As a result, nowadays, HIV-positive individuals in the US are encouraged to begin and antiviral regimen upon diagnosis. Seems simple enough.
Yet there is a flaw in this strategy that has sat uncomfortably with me for the last few years. Data from across our country indicate that on average only 28% of Americans living with HIV effectively suppress their viral load. The treatment cascade posits that for every 100 American living with HIV, 80 are aware of living with HIV, 62 are linked to care, 41 are retained in care, and only 28 achieve viral suppression due to treatment. How then is it possible that treatment as prevention will actually work? There is an inherent flaw in the thinking around HIV prevention in light of this reality.
Our colleagues in UK are also skeptical about treatment as prevention watching us closely as we roll out this system. In fact, the British HIV Association does not recommend treatment upon HIV diagnosis; their guidelines prescribe that antiviral treatment (ART) not be initiated until markers such as CD4 count reach 350. More recently this figure has been reconsidered and ART is often initiated when CD4 counts reach 500. Our colleagues from across the pond and across professions--physicians, nurses, psychologists, advocates, and leaders of community agencies-- all support this approach to care, arguing that there is no definitive evidence that initiating ART earlier is ultimately more beneficial than waiting. In fact, they believe that there is no no need to add undue burden on the HIV-positive individual, and ultimately there is no information about what a lifetime of administering antivirals will have on the health of HIV-positive individuals. While I respect this opinion, I am of the mind that one should suppress viral replication immediately and preserve those mature CD4 cells before they are destroyed. Also, one could argue that the Brits, under the NHS, are reluctant to begin antiviral therapy immediately upon diagnoses because of the cost implications. The latter, of course, is a hypothesis.
Still one argument that resounded loudly and clearly with me was raised by my colleague, HIV-positive activist, Silvia Petretti, the Deputy CEO of one of the UK’s most well established service organizations, Positively UK. Silvia powerfully and emotionally suggested that treatment as prevention is just another approach, which places the responsibility of the HIV epidemic on the shoulders of HIV-positive people. This can be viewed as another in the long line of HIV prevention strategies that places the burden on the HIV-positive, just like expectations that infected individuals always disclose, use a condom every time, and ultimately protect the well being of the HIV-negative. The long terms survivors whom I interviewed for my new book, The AIDS Generation: Stories of Survival and Resilience, raised similar concerns about the lack of shared responsibility.
I had never thought of treatment as prevention in this manner and never considered that this approach was just another that placed the responsibility of the epidemic on me and my fellow HIV-positive men and women. I wonder then how many of us are being bullied by the medical establishment and our health policy leaders to initiate treatment simply to curtail the spread of HIV without any regard to how these treatments affect us both in the short and long term, physically, emotionally, and socially. And I will think twice moving forward when I counsel those newly infected who seek my advice.
I would like to think that those advocating treatment as prevention ultimately have the health of HIV-positive individuals in mind first and foremost. But my immersion into the UK system this last month has led me to wonder about the motivation that underlies this approach. It is my hope that decisions about my health, and the health of all HIV-positive individuals, are not being made with the perspective that we are vessels of transmission that need to be contained. Coupled with the dismal statistics from the treatment cascade, one is left to wonder if treatment as prevention is serving anyone effectively. Perhaps it is time to refocus and replace our energies in treatment as care, helping HIV-positive individuals maintain their overall well being in every aspect of their lives, and ultimately sharing the responsibility for the containment of this epidemic with those who are HIV-negative.