Yesterday morning, I said that I was desperate to stop doing this work. For the rest of the day I walked around in the summer swelter questioning whether that was what I meant. Am I really desperate to get out of this line of work? And, if so, why now?
People who work in the epidemic acquire a monumental, mortality-infused vocabulary. People are dying. Governments have blood on their hands. People are being rescued from death by miraculous drugs. This vocabulary can be short on “maybes” or qualifiers. Things are very, very urgent all the time. In the thirty years since the AIDS epidemic began, the word desperate has always applied. So maybe I was just borrowing one of the words I’ve used so often that it has all but lost its meaning, Maybe what what I really mean is: I could use a break.
Or maybe not.
Last week I was at the International AIDS Society meeting on HIV Pathogenesis Treatment and Prevention in Rome. It is a biannual conference, smaller and purportedly more science-focused than the International AIDS Conference, which happens in even-numbered years, has tens of thousands of participants, and location-specific gimmicks like the elephants in red headdresses that heaved through the steaming parking lots outside of the Bangkok AIDS conference in 2004. (One of those elephants ended up trampling a man to death but that’s another story….)
The Rome meeting is the smaller version, held in the off years. There was a more modest opening ceremony with a performance in an outdoor ampitheater by an Italian orchestra. Very civilized and no one was killed.
At least not in person. All week long, and spite of the bitter, cappucino-ized bad breath that we all acquire by mid-day of these meetings, we stood close to each other, waved our hands and yelled in acrid blasts that one idea or another was going to cost someone’s lives. Not since the AIDS conference in Durban, 2000, where poor people with HIV demanded the right to life-saving drugs, have the stakes seemed so high.
In the past 12 months, clinical research–meaning large trials of many thousands of people–has uncovered very exciting strategies for reducing the rates of new HIV infections. Up until this past year, the strategies that people could use to prevent sexual transmission of HIV have been severely limited. On the biomedical front–meaning drugs, devices, tools–we’ve had the male and female condom and, as of a few years ago, male circumcision. That’s it.
But in the past few months, starting, really, in May 2011, there have been new data showing that the same drugs, called antiretrovirals (ARVs), that treat HIV can also be used to prevent it. In one trial, known as HPTN 052, the drugs were given to HIV positive people who were in stable relationships with HIV-negative partners. Some of the people in HPTN 052 took the drugs as soon as they started the study. Other people took the drugs when their CD4 cell count, a measure of immune strength, fell to 250 or thereabouts. Up until very recently, this was the threshhold suggested by the World Health Organization for starting HIV positive people on ARVs.
Turns out, starting early, regardless of CD4 cell count, reduces the risk of transmission to almost nothing. 96 percent–maybe even more.
Two months later, nearly to the day, from when the HPTN 052 results were released, I got an urgent email from the investigators of a trial called Partners PrEP. There was a confidentiality agreement attached, and an invitation to a conference call the following day that I could attend, provided I returned a signed version of the form.
I was on vacation on a windswept rock of an island, Sao Vincente, in Cape Verde, off the coast of West Africa. (One of the perks of being in this line of business is, let’s be honest, taking vacations that build off your important work in exotic locales.) It was the last day of vacation so while my husband and son picked their way along a rocky beach I crouched on the edge of an uncomfortable, French modernist sofa in a stark, French modernist hotel, plugged one of my ears to block out the Cesaria Evoria soundtrack and dialed in to the conference call.
An hour later, I walked outside. My husband was feeding my son pizza. Our friend had ordered a bottle of red wine. I started to cry. “It worked. Everything worked.”
On the call, I’d learned that two trials had found that giving specific ARVs to HIV-negative people could reduce their risks of acquiring the virus by up to 70 percent. The same drugs that treat HIV could also prevent it. These drugs wouldn’t have to be slipped over an erect penis or slid into a vagina at the time of sex. They didn’t involve surgical removal of the foreskin. They were an option–another option– for preventing HIV in a way that had never been available before.
We poured the wine into giant glasses and toasted the waves, the ocean, the possibility that my son would grow up in a different world.
I like science. I believe in it, sometimes to a fault. I know that the drugs are expensive and that it is very complicated to use them in HIV negative people. Frequent HIV testing is required. There is a chance that HIV negative people using this strategy, which is known as pre-exposure prophylaxis, or PrEP will develop drug resistance if they get HIV while taking the meds. There may be long-term side effects.
On the other hand–between the results of HPTN 052 and the results of Partners PrEP, there were now stunning options for using ARVs to prevent new infections. I left Cape Verde and flew to Rome for the meeting with a sense of energy that I have not felt in a long time.Yes, it would be complicated and costly to use these new strategies but we finally had strategies to use. We had been waiting for new ways to prevent HIV for a very, very long time.
Within 48 hours of arriving, I was near tears again–and this time, they were tears of frustration, not joy.
In Rome, I found plenty of people who shared my concerns about PrEP but had little of my excitement. They were people I respected and had learned from, including the lover who had dubbed me “B-list” nearly fifteen years ago.
They said to me that PrEP is an interesting intervention from a scientific standpoint that has no practical application in the real world. How can we use drugs that treat HIV in people who don’t have the virus when there are so many people in the world who have the virus and need the medication? Why on earth would you ever prescribe these drugs to HIV negative people when you can prescribe them to HIV positive people and get what was called a “twofer” and a “double hat trick”: treatment of disease and prevention of new infections.
What’s more, some of the funders of PrEP research–who also fund the organization I work for–were seen as seeking to push pills into the hands of HIV negative people at the cost, if necessary, of treatment to save HIV positive people’s lives.
I know that it takes people a while to embrace new strategies. Male circumcision caused a lot of hand-waving when it proved effective in 2006–even though it’s now one of the core interventions identified as potentially reversing the cause of the epidemic. I remember the scepticism about acceptability and feasibility then, and how naive I felt–how terribly, shamefully naive–when I realized that people weren’t embracing this new tool with fervent hope and relief.
That shame came rushing back last week. And this time, it was worse. Male circumcision didn’t involve taking anything from anyone–except a foreskin. PrEP takes pills out of the hands of people with the virus. Or that’s how some people make it sound. I had been so delighted when the data came out and now this delight somehow seemed to damn me, once again, to being irredeemably B-list.
The truth is that the arguments are all valid and that the analysis of what is possible, especially at a time when resources for AIDS are in dangerous decline, needs to be far flintier than a wine-soaked celebration and a blurry Blackberry photo, sent to the trial investigators, in which I crouched beside my son’s stroller and toasted an AIDS-free generation.
In Rome, the rational comes crowding in. At yet another reception with cheese chunks and plastic glasses, the wine stops singing in my cheeks and starts throbbing in my head, while the woman that my “A list” lover ended marrying takes a step closer to me and says, “Right now there are people in clinics who are have CD4 cell counts above 250 and need treatment and they are dying. They’re sick and they are dying.”
But not everyone who’s eligible wants treatment, I say. That’s what the researchers in Partners PrEP found. In some couples, the HIV negative partner might be the one who’s readier to take the drugs. Or a woman might not trust her husband to adhere.
Maybe, maybe, but the look in A-list’s face says that these are small arguments, maybe even a child’s grasping at a winning an adult game of point and counterpoint.
It’s hot even though the sun has almost gone down and the hope I’d kindled on the beach at Cape Verde seems both feeble and fluorescent, as though anybody looking would be able to spot me from a mile way. There she is: the woman who was ready to believe. And I am, in that moment, nothing short of desperate to be anywhere but there, cocktail-yelling, about the need for pilot projects, demonstration research, and the importance of not dismissing any option outright before it has been tried at all.
For so many years, despair over the AIDS epidemic was the only despair I would readily admit to. Hope for change for people with AIDS was the hope I was proudest to have.
The question isn’t whether I am desperate to leave this work–at moments like the sunset argument with A-list’s lover, I most certainly am–it’s whether this might be precisely the time when I can be most useful. After fifteen years, am I am finally getting out my own way? In Rome, it’s clear to me that I’m arguing more for myself than I am for the pros and cons of AIDS strategy. I’d like PrEP to work–tomorrow, if possible–because because I’d like to have a drink and talk about something else for a change. But maybe with clearer eyes, I’ll be able to see something or write something that will be helpful. Maybe, now that I can say how desperate I am to leave, it’s the perfect time to stay.