I read Regan Hofmann’s blog-post last week titled “Not Drinking the PrEP Kool-AIDS” with a mixture of dread (would I be accused of being an irresponsible PrEP cheerleader?) and a growing sense of déjà vu. By the end of the piece I had been carried back to the days when pitched battles on the floors of ACT UP meetings took place over where scarce government funding ought to be focused--prevention versus care--and when a heinously powerful North Carolina Senator, Jesse Helms, ensured that dollars devoted to “hedonistic faggots” and “irresponsible druggies” was a no go before a bill ever made it to the floor of the Senate. While I’m certain Regan intended only to spark productive dialogue, I fear that her words could actually hinder it. Let me explain.
I actually agree heartily with one of Regan’s key contentions--that offering treatment to all HIV-positive people who need it will probably do more on a population-based level to reduce new HIV infections than offering the same drugs to most HIV-negative people to keep them free of the virus. It’s a twofer made in heaven--preserve the health and lives of people with HIV while simultaneously making them far less likely to pass on HIV to those with whom they have sexual relationships--though I disagree with Regan’s suggestion toward the end of her post that our only option is to choose between ARV scale up in people with HIV and PrEP for HIV-negative folks.
I also share Regan’s concern for the fact that we have barely made a dent in rolling out antiretroviral (ARV) therapy everywhere it is needed, even by old-fashioned treatment guidelines. Indeed, as she states:
“Currently, there are 33.3 million people estimated to be living with HIV worldwide. To date, only 6 million of those people have access to ARVs. This means the bulk of the remaining 27.3 million people are headed toward near-certain death. Some of them quite rapidly.”
This fact, combined with the knowledge that the U.S. government and other nations are failing to make good on the promise of global ARV scale-up, means we are indeed at a difficult crossroads. These next several years will be a time of great debate and difficult choices. Where should a paucity of resources be devoted and how can we deploy them in the smartest most cost effective manner? Where should activists focus their might and energy?
Those conversations must be had, and they won’t be easy. Talking about money never is. They won’t, however, be facilitated by mischaracterizing people who’ve been working to better understand PrEP’s potential, by overstating the prevention possibility of “treatment as prevention,” or by playing to the divisions and resentments between wealthy nations and resource-poor countries or between mainstream communities and those who are most disenfranchised.
I suppose Regan would consider me one of the Kool-Aid drinkers. I do believe that the three successful PrEP studies, iPrEx, PARTNERS and TDF2, are a watershed moment in the epidemic and a reason for celebration. I never, however believed that PrEP should be in the prevention “toolbox” for everyone. For one thing, it is quite expensive compared to behavioral interventions and condoms. It is also, like condoms, vulnerable to less than perfect adherence and the average human being has a notoriously difficult time taking a pill everyday, especially when their immediate survival doesn’t depend on it.
Activists have not had the last word, however, in regards to the price of Truvada in the settings where PrEP will be needed most. We have already achieved price reductions in ARVs for HIV treatment around the globe and concessions from the pharmaceutical industry that most once believed impossible. We have only begun to discuss pricing and access for PrEP in the United States, but are already making headway. Activists are powerful and wily individuals and we should not assume that we’ve done all we can on a global scale.
Regan also seems to assume that those taking PrEP are taking it for life. That’s not my understanding for how many people will be using it. Rather, many of us hope that PrEP could provide us with the breathing room to guide people safely through periods where individual and structural factors make it difficult or impossible to use condoms consistently. What’s more, it is possible, though not yet proved, that some form of intermittent PrEP might ultimately be an alternative, which would further reduce the cost.
PrEP also has tremendous promise for people at exceptionally high risk of infection. What excites me is that PrEP is something we can offer to such individuals when the current alternatives are largely unacceptable, ineffective or inappropriate. In this case something (PrEP) is a hell of a lot better than nothing--which is the alternative that many are currently left with.
But PrEP has the potential not only to prevent an individual from becoming infected, it could also help slow down the spread of HIV through an entire sexual network in at least some settings in a way that testing and linkage to care alone might not. Experts have demonstrated that a significant proportion of new HIV transmissions occur between individuals in the days and weeks after infection, often well before even the most strenuous test and treat programs could reach such people.
Thus, if we can successfully reach enough people within high prevalence and high incidence communities with both PrEP and treatment to those who test positive--it could, for the first time in the course of the epidemic actually come close to shutting down an entire generation of new infections. That is something to celebrate, in my book. What’s more, the additional time spent in supporting a person to successfully stay on their PrEP regimen would offer multiple opportunities to deal with the other behavioral and structural issues that have placed them at greatest risk of becoming infected in the first place. The days when a yearly HIV test or a plastic bin of condoms in the bathroom of a bar may be deemed sufficient are long gone.
While Regan states in the middle of her post that she supports PrEP in limited situations, she later offers this apparently contradictory conclusion:
Given the efficacy of treatment as prevention for people with HIV...I have to again ask: In a time of limited resources, how can we afford to invest in PrEP? Do we need to spend millions of dollars on drug trials and feasibility studies for PrEP? Wouldn’t the world be better protected and more lives saved if that money instead was dedicated to increasing access to care for people with HIV?"
The problem is that all we currently know is that PrEP can work--for men who have sex with men (MSM) and for heterosexual men and women--within the confines of a study. What we don’t know are the most cost-effective and safest ways to use it in the real world, and such feasibility studies are the only way we’ll ever find out. Besides, I think the question shouldn’t be whether we do testing and linkage to care and treatment for people found to be positive (TLC+) or PrEP, but how to do both together, and demonstration projects are our best way to answer that question.
In my role as the director of research advocacy for Project Inform, an HIV advocacy organization based in San Francisco, I will be working with my colleagues in the coming weeks to pose tough questions that PrEP demonstration projects must answer. To argue against funding such projects seems to me penny-wise and pound-foolish. It is also a shameful neglect of the most disadvantaged communities who may need PrEP most and who we have been shoved to the back of the bus (and sometimes under the bus) for the last thirty years: black and Latino MSMs, transgenders, sex workers, people who have problems with substance use and mental illness, and people in relationships where the other partner has all the power.
Again, no one can argue that getting ARVs to the HIV-positive people who need them should be our highest priority, but we should be equally wary of overstating the potential of treatment as prevention as Regan says we are of overstating PrEP’s promise. At the end of the day, the most potent ARVs are worthless if people don’t take them, and keep on taking them regularly, and we know from several studies that up to 50 percent of people either fail to make it into care or to stay in care in the year following their HIV diagnosis. For those who do remain in care, daily adherence is no joke. This is as true in the dusty villages and shantytowns of sub-Saharan Africa as it is in the graffiti-covered neighborhoods of the South Bronx, and it portends sickness and death for those not taking treatment and zero protection for their sexual partners.
It should also be noted that universal access to HIV treatment for people with HIV would not be the same as universal use of ARVs. In rich Western nations a substantial number of people with HIV will probably choose not to start taking the meds until they are certain that they need it for their own health. In resource poor countries, it’s going to take herculean efforts to ensure that we can begin offering drugs to all people based on the newest World Health Organization (WHO) guidelines--starting at a CD4 count of 350--let alone offering it to people at higher CD4s or to people as soon as they test positive.
If I felt that Regan had simply mischaracterized PrEP supporters or underplayed the relative merits of PrEP compared with treatment as prevention, I might have devoted this inaugural blog post to highlighting the most promising cure-related research being presented at the International AIDS Society Conference taking place this week in Rome. I would have simply worked on Project Inform’s position paper on PrEP demonstration projects and let the facts speak for themselves over time.
What caused me to gasp as I read Regan’s post, and left me feeling I had to devote this blog entry to a rebuttal of sorts was her parting shot:
Make no mistake: PrEP is a profit-driven sex toy for rich Westerners, disguised as a harm-reduction and prevention tool for disenfranchised people at risk for HIV."
Reading that drew me back to the darkest days of the epidemic, when there were “innocent victims” and everyone else. Whether intended or not, this statement implies that some people in whom PrEP might actually be appropriate (can she possibly mean gay white party boys?) are somehow less deserving of this tool than others.
If there’s one thing that this epidemic has taught me like no other it’s that we really will fail if we are divided, rather than united. Pitting gay against straight, rich against poor, HIV-positive against HIV-negative, even inadvertently, is terribly counterproductive. Our enemies are doing an excellent job of making the case that we are doing too much, and not too little, to fight HIV on a global scale. Conceding to that “new normal” of funding and politics and giving up on a robust prevention toolkit may be realistic, but when have activists ever been satisfied with the possible, and where would we be today if they had?