blistversusepidemic

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Versus rides again

Sebastian and Clyde, this could be for you. I dont post pictures of you on Facebook. I dont celebrate your birthdays or your first days of school. I dont put pictures of your haircuts and your art. But I do want you to know I am thinking of you. It is all I do. It is all I have ever done. It is what I will be doing for the next four years as I re-embark on B-list versus. It is against the epidemic. An epidemic. All epidemics. The fight of my life, I have been saying. It’s for you. And I will write it down in case some day you want to know what it was like. Because some day it will be the past and we will need to remember.

Clyde, on November 8 around 10:30 I climbed into your bed (wow your blanket smells like pee). I had taken half a klonapin and your father and I had just been screaming at each other in the kitchen, red-faced with fury because of what was happening, though in that moment the fury was directed at each other. (Remember you come from people who get angry when they are afraid). Your father took a frying pan and banged it against the sink. Thats how scared he was. This is a November when we dont need to wear jackets and there are little fruit flies everywhere for some reason. The sky is so clear and the trees have kept their colors. They are red and gold and green. They are going on and on with their beauty. I said to your father you’re not sharing this with anyone and he said I am thinking of everyone. By the time I crept into the room the two of you sleep in, your father and I were sure what was happening, and we were not angry anymore but just afraid. I lay down with you and listened to both of your breathing. I slept in the absolute present. Sebastian in the morning, you asked me if T would still be president this weekend. I said he would be president for four years. Til you were 11. The next day you woke up and said I am flabbergasted about T. I am too. We have our work cut out for us. The past few days have been both a blur and a slow, slow dance. People organizing. A call with one hundred people saying they are afraid. People crying in the street. Rapid action. The use of the word autocracy over and over again when in fact we live in a democracy. When in fact black and brown people do not feel the world so changed as some of the rest of us.

People say they need to study. They need to act. They need to do more than they did before. There wasnt anything wrong when I ran my hand over the sink the next day. Later I found a chip in the counter. That damage may have been there all along. B list rides again. To keep the damage as it is and no worse. This is for you both. For love.

 

Something to believe in … and not

Left to her own devices, B-list is long on optimism, short on analysis.  I like to blame Paul Farmer.

Eleven years ago, I heard A-list All Star Paul Farmer debate Mead Over, then of the World Health Organization. This issue was whether AIDS drugs could be provided to poor people in developing countries, and the match-up, for someone like me, was a little bit like watching Batman debate the Joker. Mead Over called women who trade sex for money “epidemiological pumps” and Paul Farmer dropped this Wendell Berry quote:  “Rats and roaches live by competition under the laws of supply and demand; it is the privilege of human beings to live under the laws of justice and mercy.”

Oh Paul. I’m sure you didn’t mean for me to abandon economic arguments and concerns about governance. I should have finished more of your books, I know. But for 11 years, I’ve waved a banner blazoned with “justice and mercy.” Fits on a flag; sounds like a song.

But a few things have happened over the past decade. I’ve gotten older. We’ve all gotten older. And by “we” I also mean the presidents of African nations, including Uganda, where the phrase “one-party democracy” is something the president still says with a straight face.

These days, the B-list banner isn’t big enough to block out the signs that said laws cannot be applied in countries where the rights of citizens to protest are not respected or exercised or both. Over the past several months, new African countries including Uganda and Malawi have joined the familiar ranks of Zimbabwe and Cote d’Ivoire in the despicable practice of firing live ammunition at protesters, arresting warrants for civilians expressing opposition, and issuing Big Man statements about how resistance is futile.

These bullets pierce right through the banner and get B-list to a place that many activists arrived at long ago: It’s governance, stupid.

Last weekend, though, B-list darned up her flag and waved it in a one-woman salute to the activists behind a lawsuit against Uganda’s government which claims that the country’s appalling maternal mortality figures violate women’s right to health. On the last Sunday in July, this lawsuit was highlighted in a front page article by Celia Dugger in the Sunday New York Times.

The article tells horrible stories of women who died of preventable complications during pregnancy. It suggests that many more will die before Ugandan fixes the problems in health professionals, supplies and basic infrastructure that lead to these deaths. If there was time for sentimentality, this would break your heart.

But eternal optimism of the B-lister leads me to focus less, for the moment, on the terrible truths of preventable maternal death and more on the story-behind-the-story of the activist coalition that is, as I write, doing things like making sure that courtroom dates for the hearings will be packed; sharing resources for families who have lost mothers, daughters, wives, so that there are plenty of testimonials for journalists like Dugger and others who are starting to pay attention; and–miracle of miracles–organizing a meeting of the executive directors of coalition members to look at where budget gaps are emerging for joint activities.

Pooling funds? Moving away from a rigid, donor-driven “advocacy” agenda? Volunteering time and energy? Yes, yes, yes. Also this: having brave, cautious conversations about when to seek permission for lawful assemblies and when to say–though few Ugandans would ever say it in quite this way–Fuck the police.

The first step to good governance is a mobilized civil society that isn’t afraid of speaking truth to power and doesn’t sit on its ass unless a per diem envelope is available for transport to and from an activist meeting. Sadly, these envelopes–which contain cash that’s referred to in Uganda as “facilitation”–have become a pre-requisite forgetting people to sit down together to discuss many issues, while very valid fears of political repercussions and/or cutting off the steady drip of government funds to so-called independent civil society, have kept people from taking anything but the most anodyne political stances.

Dugger’s story should be required reading for anyone seeking to understand the shell game that developing country governments have played since funding for AIDS treatment exploded about 7 years ago. (No money for health, no money for hospitals, no money for primary care, please give us more money…  Oh wait — under this shell, there’s half a billion dollars for a fighter jet and a presidential inauguration that will take place the same week that protesters get tear-gassed in Centenary Square.) 

The fact that the law-suit is starting to get international press and that the court has realized that it can’t dodge the issue by simply saying, as it did on the first court date, that it didnt have quorum, is a sign of the power of this coalition, which includes groups that are working on a wide variety of other things, all of which are arguably as important and as tragic as this issue, and who have decided for the time being not to pit one issue against another.

Is this related to the “walk to work” protests and the utterly unprecedented public statements of despair from public health officials that I talked about a few posts ago? Absolutely. Something is brewing. It isn’t the Arab Spring and it isn’t going to happen over night. But as uber A-lister, Kenyan corruption fighter John Githongo wrote a week or so ago,there’s a mounting frustration with the status quo of sub-Saharan African governments that feed the rich and squash the middle class.

Unlike the issues raised by protesters in the Arab spring–countries with small or unreported AIDS epidemics who have never been on the donor list for AIDS largesse–civil society in Uganda, Malawi and elsewhere in sub-Saharan Africa, knows exactly how full the coffers have gotten in the name of this plague and so may likely hinge their protests on more rational health spending in a way that their northern counterparts did not.

The past seven or so years have seen an absolutely unprecedented amount of disease- and epidemic-specific money flow into developing countries, including Uganda. This money, earmarked to fight AIDS, tuberculosis and malaria, was desperately needed and has done amazing things. It needs to be sustained and even expanded, but that is an issue for another post.

The Ugandan civil society lawsuit on maternal mortality is the best possible thing that could happen to its slightly moribund AIDS activist scene. A substantial proportion of ill-gotten, rich-get-richer money in Uganda has certainly been diverted from health and, more specifically, from AIDS. Tug the string of maternal mortality and the whole rotten story of money diverted from the Uganda’s Global Fund grants to Health Minister’s houses and MP junkets into their home districts during campaign season will eventually unravel. Spent correctly, money for AIDS should be raising the quality of overall health care. The fact that it isn’t is an indictment that, coming at this time of unprecedented public ire in Uganda and its neighbors, could actually become part of the popular uprisings that are by no means over.

And–here, B-list reaches, in her eternal optimism, for a point that is not yet, yet, supported by events: Any demand that money be spent better has to take into account the tremendously practical ways that are emerging to treat and prevent AIDS better than ever before.

Which is why the lawsuit, which has nothing to do with AIDS on its surface–and in fact is a powerful argument against disease-specific funding–is one of the most exciting and hopeful things that’s happened there since the free AIDS drugs first came to town.

As of a couple of weeks ago, at the International AIDS Society meeting in Rome, I was convinced that this could be a year when the epidemic turned around. The science certainly says that this is a reasonable hope.  But every scientific finding needs to prove its worth in the real world. For me the crucible is always going to be that landlocked, equator-straddling, president-for-life-having state. Thanks to the civil society coalition working on the maternal mortality lawsuit I have, for just this moment, something lovely to believe in.

But. Oh Uganda.You never quit, do you?

This morning as I sat down to write this little silver-lining seeking love song to your nascent civil society, I find out that the newly-appointed Health Minister, about whom I heard great things, had just given an interview in which she said that AIDS could be cured via prayer. As in,“I am sure and I have evidence that someone who was positive turned negative after prayers.” She’s a Born-Again minister, that woman is, which is less of a surprise for a Museveni minister of health than the fact that she’s actually got relevant health experience. She’s actually run a hospital … that was the good news, until today.

Prayer doesn’t cure AIDS. I wish it did. It don’t. But for as long as I have been sitting in AIDS clinics in Uganda, I have been meeting people who sidled up to me and asked (because all white women must be doctors) whether God would ever cure them. Everyone wants this to be true. At a point in Uganda’s AIDS treatment effort when people are being turned away from clinics because they are not sick enough to qualify for drugs, the false hope of a cure-through-prayer will lead these same people to die at home without ever returning to the clinic again. She should retract, and quickly, before there is too much blood on her hands.

As an HIV positive Ugandan doctor and health professional posted today, “I believe in miracles but must confess I have not yet seen a PLHIV who has turned HIV negative.  I myself take ARVs as if my life depended on them but also pray as if my life depended on prayer.”

We have to be careful what we believe in, for our health and so that we have the strength to carry on. The fact is that the post I just quoted was made on the same listserv that is organizing the maternal mortality suit. People aren’t working on one issue at a time. There’s enough outrage for them all. That, for today, is what I’m going to believe in.

Driving with Nemo

The minute you see your first a car accident in a developing country is the minute you realize that there really is no safety net. Or that’s what you think when you’re twenty-seven and traveling in a chicken bus for the first time and have to get out, twenty kilometers outside of Kisoro, in the deep green south western corner of Uganda, because another bus has had an accident that’s left it perilously genuflected, one end in the air and the crumpled snout nearly buried in the ground.Wow, that looks dangerous, you think. I’m not messing around.

Hah, says your thirty-nine year old self the first time she buckles her son into a car seat in an African car. Hah. You thought you knew what it felt like to have no safety net. You and your luxurious responsibility for your own twenty-something self. You had no fucking idea.

Now you do.

Nothing you’ve done to prepare matters: not your travel insurance, your  local cell phone full of expat doctor friends; your mother and baby antimalarials and antidiarrheals, and certainly not the OTC valium and Ambien you pick up, just in case, from reputable drug stores in Kampala or Nairobi. Where you are, there are no ambulances, no guaranteed of a safe blood supply, no reputable trauma surgeons. There aren’t even traffic lights, just a  fickle set of dictatorial traffic guards in dress whites and leather belts–they look like nasty nurses with billy clubs and lace-up boots–who might or might not deign to untangle a knot of traffic at a roundabout for a car carrying an accident victim like–you can’t even think about it–Nemo, your infant son.

You can’t think about it, you really can’t, and so you think about seatbelts and carseats instead.

In an anticipation of your first trip to Africa with Nemo, you buy a giant tank of a car seat—a Brinks armored truck of car seats, that weighs as much as an Austin Mini-Cooper–along with a  sheet of plastic with two wheels and a retractable handle that is supposed to make this car seat roll like a stroller.

For about 90 seconds after you’ve used the ratcheting strap to attach this piece of plastic to  the giant car seat aloft and you feel the satisfaction of the successful gadget buyer: Take that umbrella stroller, you think. Take that lightweight, no side-impact-protection car seat. I’ve got my primo child protector and it rolls. Who has the last laugh now?

You start to draft a self-satisfied post to a parenting blog, consider a review on Amazon, and then you’re interrupted by a grainy grinding. Your giant car seat has slipped all the way down the flimsy sheet of plastic and is gnashing its plastic bulkhead on the cement. No worries. Increase the incline of the seat a little bit. Good idea. That buys you enough time to navigate your first change in altitude–you run the two wheels over a coin, say, or  a piece of cardboard. Nothing so pronounced as a curb. The car seat lands on the earth. The wheels are spinning somewhere around its bulky midriff. And you hope that Nemo thinks it’s funny when you tilt him so far back that his heels are above his head in order to make it to the car that’s waiting ten feet away.

Nemo comes out of the car seat non-stroller and starts licking the gravel in the parking lot of  Entebbe International Airport. You let him. It is time for installation. The manual’s attached to the car seat with a bungie cord and you think this is a bad sign. How come the manual’s got to be with the car seat at all times? Shouldn’t you be able to master installation, then leave it at home.

Not really. The meat of the  manual—the unimaginably long set of pages in the middle of the book—is devoted to different kinds of seat belts.  Who knew there were so many? Lap belts, shoulder belts. Shoulder belts attached to the door. Shoulder belts attached to the body of the car. Automatic and manual retractors. Over the next three weeks you’ll page through the manual fifteen, twenty times. You’ll read it in the car while Nemo is sleeping, tugging on the bungie cord to get it into your lap. You’ll read it over and over again and you still won’t find the instructions that tell you what you really want to know. You want the section that explains what to do with:

  • The seat belt piece  that has stripe-y dirt marks on it as though it has been run over by a car.
  • The piece of webbing with no metal tab or clicker-end that you extracted from between the seat back and cushion by inserting your arm in up to the elbow and pretending  that nothing was crawling up your arm while you groped around in the cavity of doom.
  • The piece of webbing with a metal tab that does not go into any of the clicker ends that you extracted into the seat after three separate forays into the cavity of doom.
  • The metal tab that slides into a clicker end that sort of sticks but does not click.
  • The shoulder belt that only extends two inches.
  • The shoulder belt that appears to only extend two inches but then unfurls to about nine feet and which point no amount of yanking and suggestive tugging will persuade it to retract
  • The school bus or minibus taxi which has no seatbelts at all.
  • The car that has a seatbelt for Nemo and not for you.
  • The car that smells so much like armpit that you cannot finish proper installation.
  • The seatbelt which you’re still struggling with when the driver peers in and says, a little mournfully, “It is spoiled.”
  • The car with no seatbelts that your reliable driver with reliable seatbelts sent because he had to go up country for a more expensive fare even though you called him 12 hours in advance
  • The working seatbelt in the car you won’t take again because the driver is a Born Again Christian who keeps asking you to find him a mzungu wife
  • The explanation you can give to anyone about why you’ve schlepped Nemo half way around the world and shelled out for a premium carseat but refuse to do anything so post-colonial as hiring a driver and renting a reputable car
  • The pleasure that you get from taking Nemo back to the south-western part of the country where you got out of the bus to walk around the accident and thought here is a place that I will always remember and felt as though you were falling in love
  • The sadness you felt that you could not take Nemo on the bus to that part of the country, which was part sadness that you couldnt do it the way you’d done it so many times before, listening to books on tape and yanking your knitting away from grabby women saying, “Let me assist you with your weaving,”–and part sadness that in fact you can’t remember how you ever tolerated the chicken buses and this, more than even the fact of Nemo, makes you realize that you are getting old.
  • The questions you have for all the Ugandan women who do take their babies on the buses: Are you scared? Why are they so quiet?  Why aren’t you scared?
  • The proper prayer to say when you give up on any kind of installation at all and gather Nemo in your lap and hold him tight with one hand while you pull the lapbelt that sticks but does not click across the two of you and hold the two pieces together with the other hand and look through the windshield over his head  as though you can, by the sheer force of attention to the every single car on the road, ensure that the oncoming flatbed filled with Ankole cows doesn’t lose its brakes, the petrol truck in front of you doesn’t make a sudden stop, and think, as though you are still sixteen or twenty-seven, as though everything in the entire world wasn’t squatting in your lap, as though your husband isn’t half-way around the world expecting to Skype  before dinner,  if anything happens to us, I will be in so much trouble when I get home.

Africa is a career move

Africa is a career move. That’s one of my favorite lines in Helen Epstein’s book “The Invisible Cure.” By which she means: there are plenty of us who come from the Global North and have spent time–a lot or a little–in Africa and it has helped us in innumerable ways. It’s given us developing country experience; it’s given us genuine perspective on what our work entails and what reasonable expectations are for what development aid can and cannot do; it’s helped us make some of the most rewarding friendships of our lives; and been the backdrop for the dinner parties–candles dripping over wine glasses, frog honks and tinny drum track dance music from down in the valley, air that smells like the beginning  of the world–that will flash before our eyes when we die.

We love it, we can’t stop going back, it changes our lives.

And in the debate over treatment of HIV positive people versus treatment of HIV negative people — which isn’t the debate that’s needed at this time–all of us for whom Africa changed our lives, for whatever reason, are showing our (career) moves with rare flourishes and fancy form.

It goes like this. I’ve worked in country x or y; I’ve worked in clinic x or y. And I can tell you PrEP will never work. I can tell you patients are calling me right now asking for PrEP. I can tell you PrEP won’t work because women don’t take birth control. I can tell you serodiscordant couples are highly motivated for whatever will help them protect each other and conceive.

I’ve got my own moves. Wouldn’t be here if I didn’t. So here there are.

For me (as for Helen Epstein) the country is Uganda. Land-locked, impossibly green, a 1980s poster-child for AIDS prevention based on home-grown strategies that has gone the way of so many child stars: gotten deeply weird, nearly unrecognizable, completely tragic, threatening to jump the rails. Think of that girl from Diff’rent Strokes. That’s who Uganda would be if it was a celebrity.

It’s the one country with HIV prevalence between 5 and 9 percent where HIV incidence has gone up since 2000. Up, instead of down. Up, even though it was the first country to deliver a free PEPFAR-funded pill in the entire world.

It’s a country where the pendulum of AIDS prevention has swung from multiple successes to outright failure. I love Uganda and I want to keep going back there for as long as I live, so I’m not sure I would even be writing this if I hadn’t heard virtually the exact same things from members of the Uganda AIDS Commission and the head of the Ministry of Health AIDS Control Program on my last visit there.

In 11 years of travelling to Winston Churchill’s Pearl of Africa, I’ve never, up until last month, heard such open despair from the ordinarily diplomatic, if not self-satisfied and/or in denial, crew of civil servants who staff the national AIDS response.

“We have no health system. We have no health system,” said the head of the AIDS Control Program at a meeting that I worked with UNAIDS to help organize a meeting on ARV-based prevention. It was a minor miracle that she was there, since the head of Uganda AIDS Commission was too and those two entities  are rumored to avoid spending time in the same room together at all.

The next day, one of the consultants working for the Uganda AIDS Commission on the country’s new National Prevention Strategy said, rather blithely, that it was clear that Uganda hadn’t gotten prevention right. This is astonishing from a country whose stock in trade up until a few years ago was how it had turned the epidemic around using presidential leadership, pithy slogans like “zero-grazing” and the Sesame Street formula of Abstinence, Be Faithful, Use Condoms. Now, with money still pouring into Uganda, there’s real confusion about the direction the epidemic is going in.

Not everyone thinks HIV rates are exploding. One of the people I admire and trust most in the country, Dr Alex Coutinho, who heads the Infectious Disease Institute, says that the prevalance rates in the communities where IDI is working are far lower than they would have expected.

But if the government is saying that they’re worried, or even, in the case of the head of the ACP–who likes to sit with her head in her hands for long chunks of time–in despair. Then we should take notice.

Now. I’ve name-dropped, established my familiarity with a local epidemic, shown that I know the history. Those are the basic moves of the African-loving North American. Now I am supposed to round up with an incisive analysis of what all of this means for PrEP and treatment as prevention.

If this move-showing were oh, say, Dancing with the Stars (and, by the way, one of the best things in the world is a good triumph-over-adversity dance movie), this is where I’d probably get kicked off.I don’t have it all sorted out.

But here’s trying: Whether or not Uganda is exploding or just struggling with its epidemic, it is exactly the kind of place that new prevention strategies need to be introduced–and fast. We can’t afford *not* to try them out there.

This means:

* going and sitting down with the National Drug Authority, which has said that it’s struggling to keep up with the flood of new data, and asking them what they need to know and when to make a regulatory decision about PrEP.

* sitting down with serodiscordant couples from the Partners PrEP trial and from nowhere in particular and talking, really talking, about the data. Asking every single HIV positive member of a couple if they want to start treatment. Trying to figure out why those who say “no” dont. Asking who is interested in PrEP. Finding out why.

* creating cost-effectiveness analyses that demonstrate the critical importance of scaling up treatment for HIV positive people and also point to places that show PrEP could be rolled out on a small scale to avert a lot of infections.

* putting these analyses into practice — starting with treatment as prevention using home- and community-based models of delivery and not relying exclusively on the creaking health system

* making  a plan for scaling up male circumcision for 80 percent of the population and putting a price tag on it and then crying bloody murder until it’s funded, instead of handwringing about how there isnt any money for taking MC to scale

If we did all of these things, would everything be fine? Would rates of HIV go in the right direction? Let’s put it this way: anyone who’s made Africa a career move has also made a career in an epidemic that never seems to go away, in spite of all of our best ideas. Are we closer to a solution than before? Is it time for another turn around the dance floor? Uganda: show us your moves. At the next dinner party, I’ll bring the wine.

10 Signs that You’re a B-list Activist

1.  Getting arrested scares you.

2. You had a consultancy day rate of $400 before any of your friends.

3. You take a car service to the airport instead of public transportation.

4. You don’t know when you last saw your “HIV Positive” t-shirt.

5. The one time you do get arrested, you have no idea what it means when someone says, “Are you going to give soc?”

6. Tony Fauci doesn’t know your name.

7. If you were in an elevator with Tony Fauci, you wouldn’t introduce yourself.

8. You felt bad for the US Global AIDS Coordinator Randall Tobias when he got booed into silence in Bangkok in 2004.

9. You only felt bad when you watched the video seven years later; at the time you didn’t know the action was happening.

10. You weren’t there.

My mother is a fish.

None of the endings that I have written so far are true.

What not to wear

We all go to these conferences full clothed. White women with interesting scarves and dress-up Danskos; activists with slogan-splashed t-shirts, slightly furious body odor and giant backpacks; the young African women with HIV who have been awarded community scholarships and who, every year, seem to grow thinner and taller, like gazelles, and who seem quiet but seldom are; this year, the newcomers, like the woman from Tajikistan who’d been diagnosed nine months earlier and came, speaking no English, with her friend and translator, a round, doll-faced woman with a head-scarf; and the famous people like Tony Fauci and Peter Piot who seem to be have been born in suits, like the soft-bodied dolls I used to have, where the clothes were sewn on at the shoulders with little loops of thread.

I came in the chunky high heels I found myself wearing this year, along with interesting jewelery, as though the aesthetic of a do-gooder, lefty New York Jew approaching 40 is a genetically encoded ontogeny: Lesbian Chic in your 20s, Expensive Jeans in your early 30s, Interesting Accessories in your mid-30s, on to Eileen Fisher in your 50s, with detours all along the way for that-amazing- dress-made-by-that-amazing-tailor-in-Bangkok-Kampala-Abidjan, I’ll give her your number, you’ll love her, you’ll see.

We also come wearing our beliefs.  Look closely, and the clothes we wear are usually a clue to what we’re thinking or what we’re paid to think. The policy-maker suits, the protest t-shirts, the tie that my dapper boss doesn’t wear when he delivers a talk on behalf of “community” because advocates always come as we are.  I’m no exception. With my wrinkle-proof skirt, tunic-length T-shirt (so flattering, for the post-partum B-list who collects but doesn’t wear the protest t-shirts), and interesting-but-not-overly-ethnic Kenyan necklace–you probably know what I think before I even start talking.

I’m a chick chick, a feminist.

I am the girl who joined the sex peer educators group in college  and held dorm talks where she passed around diaphragms and cervical caps like a Tupperware saleswoman, even though  she wasn’t having sex, none at all; the one who held hands with a  knot of women on the dark campus lawn screaming “No means no,” when the most dangerous situation she’d ever been in was condom-free sex on the roof of an Upper West Side apartment building with a high school boyfriend who’d since broken her heart. .

You’d know all of that if you saw me at the conference.  I wouldn’t even have to open my mouth.

You wouldn’t know anything (except that I’m a lazy shaver and a poster child for varicose veins) if you saw me in the nude.

And at the risk of stating the absolute, glaring and cliched: HIV prevention, which is what we have been arguing about so passionately, is, in the context of sexual transmission, about something that happens when you’re not fully dressed. It’s about the part of life that’s lived naked or at least not completely clothed.

The pill that reduces risk of HIV infection and the gel, which showed benefit in a trial last year, both could be used by women at some point other than the moment when a man has a hard-on and wants to fuck. A female condom could too–you can even wear it in advance–but both the pill and the gel are products that could be used with far less visibility and noise. They would leave a woman more naked than anything else we’ve had to offer her before. And while the sex might not be good or consensual—though it also might be–she at least would be protected in a way that was in her control.

The gender argument for HIV prevention, especially when it comes to pills and gels, isnt sexy right now. Right now, the sex and swagger of the debate is in economics and ethics. The pill and the gel might be important tools for women but in the face of shrinking resources and unmet demand for treatment by HIV positive people, how can we possibly think about offering pills to HIV negative people, women or men?

We know from family planning that it’s very difficult to get young women to adhere to hormonal contraceptives. So why would they adhere to a daily pill or gel regimen that would protect them from HIV? So goes the argument–I heard it several times among people in Rome.

On the Sunday before the conference started, I was on a panel for women about these new methods. I wore trousers to show–what?–that I was a feminist? Not even sure. I am a good speaker and I gave a passionate talk. “We havent been here before,” I said to the women and the Tajik duo leaned their heads together and murmured. “We’ve never been here before and we don’t know what women will want or what they can use.”

Afterwards, the women decided they wanted to do a demonstration and a press conference asking the Pope to bless the HIV prevention revolution. Sure, I said, and wrote the press release, as I’ve always done, and found a scientist to join them on the dais.

Two days later, the Takjik duo, the handsome butch from South Africa, and the long-limbed HIV positive women from Namibia and Zambia crowded into the press room with little pink signs saying “Where the hell is the gel?” and “Women want PrEP and the gel now.”

“Viva woman’s gender equality, viva,” Shouted the South African heart throb.
“Viva,” they called, and then collapsed into giggles,
“Viva PrEP and microbicides, viva,” she shouted again.
“Viva,” they shouted and the press, desperate for any kind of interesting image, crowded their long lenses in front of them like they were stars on the red carpet which, with their giant smiles and spectacular beauty, they were.

Then everyone crowded into the press conference room. It was mainly the women themselves, not too many journalists; those that were there were from community web sites. We weren’t going to be making any headlines that day. But it was crowded nonetheless and there were hot lights on the panel on the dais and on the audience, and during the question and answer time, women in the audience took turns holding the mike and testifying about their lives, including the Tajik woman who wanted the government to evaluate what new interventions meant for her,

I’d love to end with this moment, all of us flushed from the lights and passing the mike around to tell our stories. But here’s the thing: the press wasn’t there, and this story about what the new interventions mean for women isnt the one seizing the headlines.

The issue really is being debated as to whether any of these tools–but especially PrEP with pills–will make it into women’s hands any time soon. Because I and the other women are good speakers, we made the new strategies sound exciting and new. But we could also speak eloquently about why the pills don’t belong in the hands of HIV negative people. Many people do.

What I don’t yet exactly know is whether it matters that there are strategies that women can use when they’re naked, whether they want to be or not, whether they are on their way to a gorgeous orgasm or just acquiescing or fighting back. I wonder if and how the calculus of naked choice will get factored into the flannel-suited facts of economics or the activist t-shirt clad cries of ethical obligations to safeguard AIDS drugs for people who already have the disease.

In Rome everything was raw and new. So we all hunkered down in our uniforms which told everyone, including ourselves, who we were. But before this is over, if we want to make a true calculation of what is gained and lost by pursuing or not pursuing the new prevention tools, every single one of us is going to need to show some skin.

Desperate times

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.

B-list Activist versus the epidemic

July 21, 2011

Epidemiologists talk about HIV in terms of dyadic transmission. By which they mean that every infection occurs between two people. A man and a woman have sex. A man and a man have sex. A nurse leans over to puncture a patient’s vein. A baby clamps onto the breast. The moment of transmission is a moment of intimacy; a point of origin.In this way, every story about HIV is a love story. And this is mine.

Already, I have to interrupt myself. An A-list activist would tell you this: HIV isn’t about love. It’s a stowaway virus seeded into fluids of intimacy but also of rape, violence, addiction, and sex that people are having because they need to pay the rent or banish, for an instant, the ugly, back-breaking day of work they just had.

An A-list activist would waste no time in telling you, too, that I am HIV-negative and should have said that first of all. I’ve spent my entire adult life working on this virus in one way or another but I don’t have it in my blood. Now I’ve told you, let me also mention something that the A-list activists do not know:  after living and breathing the epidemic for the past fifteen years, I am desperate to stop. I want out of the good fight. I want to not care. I want to be done.

In 1998, I enlisted in the civilian army of activists who were fighting this disease  for all of the reasons anyone who’s afraid and alone decides to join a war: the uniform, the companionship, the clarity of our principles, the righteousness of our cause. And for several important years, I got everything I had hoped for–even though I was labeled, very quickly, by a lover, “a B-list activist,” because I wasn’t someone who could be counted on to get arrested. The “A list” was for those folks. The ones who would always put their bodies on the line.

In another war, I might have been called a coward, been handed a yellow feather. Instead I got put at the rear guard, writing press releases and mastering the science–which I did, armed with an undegraduate biology degree and a facility with metaphors. I worked  hard.  The science was a code that I could break and, in so doing, redeem myself in the eyes of people like the lover who had labeled me “B-list” and who had, on our first date, blown cigarette smoke in my face and said, “You know you’re not going to be the only one.”

Over the years, I’ve been promoted up the ranks. I have a job in AIDS incorporated. My salary and my health insurance come from the global coffers of money to fight the epidemic. I do the very best work that I can do.

But I also think, frequently, of the twenty-two year old woman who sat, her scalp burning from a bathroom bleach job, in the sliver of oblique sunlight in the corner of in a tiny walk-up that smelled of dog hair and pot. She could barely pay the rent or be sure that the poems she was working on had any worth at all. She wanted a day job, something to give her meaning.

Once she got that day job, I never really saw her again. I never again saw the person who defined herself as a citizen of the world but not intimately responsible for the trajectory of a global epidemic. The girl who had never been able to separate sex from death, desire from the terrifying certainty that she was about to disappear. When that girl began working in AIDS, she thought that she had found, in the virus, a vocabulary for things she’d felt before but would not have been able to say that she knew. She thought that the science of the virus was the language of her life. This was a mistake that would define her life. it might have been the biggest mistake she ever made.

The biggest mistake I ever made. Or perhaps becoming a B-list AIDS activist was the best decision I ever made. I do not know, at least not yet. All I know right now is that it is harder than I ever would have imagined to leave the front lines and that if I am able to leave, I am not sure I will be able to find my way home.

This is my attempt to do just that. I’m starting now because, for the first time, I think it might be possible. The next twelve months just might end up in history as the beginning of the end of the epidemic. There have been recent scientific breakthroughs that make it possible, finally, to envision a world where the epidemic wanes, year after year, until there isn’t a war to fight against a virus, at least this virus, anymore.

The part of me that understands and cares about the fight against HIV–a large and real part of me–thinks this year will be the most critical year of the epidemic that I will ever live through. There are actions that, if taken, could truly signal a change in the rates at which people acquire HIV, get sick, and die. And there is the possibility of inaction, of great powers pleading poverty and allowing a rare, perhaps unique opportunity to vanish before it is tried.

One story doesn’t depend on the other. I can stop doing this work at any point; my work will not influence the course of the coming months. But one thing which a B-list activist knows is that hesitation is treachery. If you can’t race into the street with your comrades without looking back, you are of little use at all. The most important thing is not to flinch, just to try.