rivka

We got back from Montreal Sunday night, dirty and exhausted but reasonably pleased. It was a good trip.

As far as the ostensible reason for our trip, the Society of Behavioral Medicine conference, the thing that will pay for my plane ticket and the hotel room and a fair bit of the food: it went surprisingly well. My talk was well-attended and well-received; there were more questions during the question period than I had time to answer, and some people stayed to ask me questions afterward or even approached me later in the exhibit hall. I think I did a good job writing the talk and delivering it, especially considering the circumstances.

Last year I didn't enjoy the SBM program very much. This year, I managed to make it to several great program items. It seemed like there were more interesting options and better HIV representation. I particularly enjoyed a symposium on novel strategies for accessing populations of ethnic-minority men ("So it turns out, in our part of North Carolina, you reach African-American men through the churches, but Latino men, no. And then we found out about the soccer league!"), and a keynote address on using marketing and mass communications to disseminate valid scientific information.

The only thing that's bugging me about SBM right now is that it seems like every year there is more and more of an "obesity epidemic" focus. I was never interested in that topic era to begin with, but now that I've read so much that debunks dieting and obesity panic, I find it irritating. I'm fine with the program items about increasing activity level and consumption of healthy foods, because I think those things have independent health benefits, but I kind of want to go to the weight loss intervention panels and ask politely what the follow-up data looks like five years out.

I managed to see three-quarters of most of the sessions I attended. They were mostly scheduled to be 90 minutes long, and somewhere around the 70-minute mark Colin would start to wake up or make sounds. I was hypersensitive to every noise he made, because at a professional conference Colin is not part of the community and has no independent right to be there. So at the second coo or gurgle we were out the door. We got nothing but friendly looks, though.

The non-conference portions of the trip were just excellent. papersky always provides visitors with quality entertainment. One major highlight was a free-flying butterflies exhibit at the botanical gardens. Picture a big plant-filled atrium with thousands and thousands of butterflies swarming about - not just common ones, either, but massive South American specimens. I mean, just walking along you'd find yourself flinching away from the most spectacular butterfly you'd ever seen, trying to keep it from flying right into your face. (Also at the Jardin Botanique, a really neat greenhouse filled with "economic" tropical plants - foods, dyes, etc. I never knew what a black pepper plant looked like. Or the source of the ubiquitous xanthan gum. Alex loved that room.)

The other big highlight was a picnic on an island, on the unexpectedly warm and lovely Saturday. We spread blankets under some pines for the shade and found ourselves in the center of an active flock of red-winged blackbirds. A woodchuck ambled back and forth, sometimes as little as twenty feet away. After a delicious lunch, we went into the Biosphere (not to be confused with the Biodome) - a small museum housed in the frame of a giant geodesic dome. The only great exhibit was a water activity room, but that one was really great, so that was just fine. Plus admission was free for Earth Day. Alex had a wonderful time making rivers and pools and channels and sailing boats and walking across water on pontoons and otherwise getting very damp indeed.

Of course, as is the case any time one visits papersky, we had excellent food. Highlights for me were a Chinese feast the first night, an incredible dim sum spread on Sunday morning, and - oddly enough - the shish kebob dinners we ordered delivered to our hotel room the night that papersky and rysmiel had a dinner party to attend. But really, there was only one meal I thought was just so-so, and that time it was clear that I had ordered the wrong thing.

So that was our trip. I think I'll probably write another post about traveling with both kids later.

...but how to pass up the opportunity?

As part of the economic stimulus package, the Obama administration has set aside $200 million for "challenge grants," two-year NIH research awards that are aimed to hire a bunch of scientists and pump money into the economy. They have to be applied for immediately. (Well, they've been out for a few weeks, but I wasn't really thinking about grants last month.) The application is fairly minimal - you don't have to have "background" and "preliminary studies" sections the way you usually do, just a 12-page argument for what you want to do and why it's important.

The catch is that, whatever your dream research idea, you have to squeeze it so it fits into one of their approved topic areas. I know what I need to do next: take my research about HIV conspiracy theories and develop an intervention to address the problem. It didn't seem to fit into any of the challenge grant topic areas... except that a couple of days ago my RA pointed out that there might be one that kind of, if you cross your eyes a little, sort of fits.

It doesn't cost anything to query, right? ( Read more... )

I'm applying for a program designed to help early-career psychologists develop as independent researchers in the field of HIV and communities of color. One part of the application asks for an honest assessment of the "strengths and weaknesses of the applicant's current capacity" in this area.

I did a little brainstorming, and here's what I came up with off-the-cuff:

Strengths:
Experience
Population access
Clinical acumen with research population
Broad involvement with/knowledge about many research areas within HIV
Communication and writing skills
Cultural competence working with African-Americans
R21 – already funded in this area for an exploratory/developmental grant
Developed research ideas

Weaknesses:
Isolation at my current institution
Weak statistical background
No prior experience in intervention research
White as a freaking piece of paper

...Okay, so maybe that last item shouldn't make it into the final edit of the application. But it's something that I'm acutely aware of, and I'd be kidding myself to say that it won't be a disadvantage. I like to think that I have the skills and awareness to do this work well, and yet.

I wonder how the Great Cultural Appropriation Debate extends to research.

Every time I start work on grantwriting, I think about how interesting it would be to document the steps of the process in my LJ, so that people can see how a vague research idea turns into a fully-formed proposal. Every time, it quickly becomes clear that just writing the grant is enough of a monumental energy drain, without adding writing about the grant to the mix. So nothing gets posted because the task just seems to large.

I'm in the middle of preparing an application to the National Institutes of Health, in response to a call for research on how people make decisions about treating a life-threatening illness. I'm proposing to study how people with HIV make decisions about starting anti-retroviral therapy. In particular, I want to combat the ridiculous tendency that medical decision-making research typically has of assuming that it's a purely logical process of weighing risks and threats against benefits. I think that irrational factors often play a critical role in medical decision-making.

One factor I want to examine is the extent to which people have a cynical, suspicious, mistrustful attitude towards HIV research and treatment, and the extent to which they buy into AIDS conspiracy theories. This morning, I've been working on developing a questionnaire to measure those attitudes. I thought I'd go ahead and post my working version of it, to give people a glimpse of what I'm doing. Comments and suggestions are very much welcome. ( Read more... )

Not having a great day here.
( this got long. also ugly. )

Transmission Risk Behaviors in HIV Patients
Attending an Inner-City HIV Primary Care Clinic
RL Wald & LR Temoshok, Institute of Human Virology,
University of Maryland, Baltimore, MD.

HIV prevention efforts continue to under-target the problem of continued transmission risk behaviors by HIV-infected individuals. To assess the extent of the problem, we surveyed 150 patients (90% African-American, 50% female, average years since diagnosis 9.4) attending an HIV clinic serving a disadvantaged inner-city population. The most common HIV risk factors were injecting drug use (54.9%), heterosexual sex (26.8%), and men having sex with men (12.2%). 57% reported at least one sexual partner in the past six months, and 83% had at least one partner in the past two years. 66% reported a recent partner who was HIV-negative or had unknown serostatus. 19% had hidden their HIV status from a partner. Respondents generally abstained from the riskiest activities (anal sex, needle sharing), but most engaged in vaginal and/or oral sex. Condoms were rarely used for oral sex, and only half of those having vaginal sex said they “always” used condoms. Unprotected sex was more common with HIV+ partners than with partners of negative or unknown status. Our data indicate that transmission risk behaviors remain a serious and largely unaddressed problem among HIV-infected patients in this population. These behaviors are particularly troubling in light of widespread drug resistance and incomplete viral suppression among the clinic’s patients, which combine to increase the likelihood that these behaviors will result in the transmission of drug-resistant HIV, and an increasing number of treatment-naive patients who are already resistant to one or more HIV drugs.

Wednesday through Friday I was at a work-related conference. The Institute is developing a new protocol for HIV treatment involving observed therapy, and the conference brought together doctors, nurses, public health people, psychologists, social workers, peer advocates, community organization leaders, and patients, to discuss how this should best be done.

On Friday, some of the patients there approached me. They're putting on a weekend retreat for HIV positive heterosexuals, and they wondered if I'd be willing to come and give a talk about dating. Huh. I'm really quite pleased to be asked - it seems like a compliment, given that they'd been talking with me for a couple of days, and it's certainly an interesting topic. But I'm also not entirely sure what I'm going to say.

Some of the things that come to mind:
- loving yourself and accepting your HIV as a (probably) necessary precondition to finding someone else to love and accept you.
- refusing to accept bad treatment from a partner just because you think no one else would have you.
- disclosure: why secrets are harmful, why early disclosure is better than late disclosure, why your reasons for thinking you don't have to tell your partner are pretty much all flimsy rationalizations.
- educating your partners about HIV and being patient about the time they need to become comfortable with the information.
- broadening your definitions of a sexual relationship and being more creative about sexual interactions, so that you can focus on lower-risk activities without decreasing your total enjoyment.
- why you still need to worry about health risks to yourself, even though you're already positive.
- pros and cons of only dating other people who are HIV positive.

I'm expecting that, even though they presented it to me as a "talk," we'll want to structure it to include a lot of group discussion. After all, they're a lot closer to being experts at this than I am. I really think this is going to be fascinating.

Wednesday's Salon had an essay by a man who has been living with AIDS for eighteen years. He was 23 when he was diagnosed, and was told he could expect to die shortly - so, he says, he stopped traveling along the path to adulthood. He never built a career or put down roots or invested his money, because he never expected to be around long enough to need them.

He started getting sick in the early 90s. Those were still the days before protease inhibitors, which didn't really start making a difference in mortality rates until 1997, and about which he says

For some it was too little too late. For others, it was the moment in the movie when the ticking bomb stops seconds before everything is destroyed. For me, it was both.

and then

My first round of protease inhibitors were even less resilient than I'd been.

and finally

I've developed resistance to most current meds available yet my health remains stable. [...] I'm too healthy to die, too ill to assume "normality."

Here's the thing, and it's a card that is very often palmed in these kinds of stories: if he's in this situation with his meds, that means he's been taking them inconsistently. If he's developed resistance to all the protease inhibitors, that means that he threw away regimen after regimen by skipping doses, by stopping and starting, by disregarding instructions. There are other ways to develop resistance - for example, most long-term survivors are resistant to AZT through no fault of their own, because it used to be prescribed as a single-drug regimen before anyone knew that you couldn't do that. With the protease inhibitors, though, and the other recent drugs, it's all about nonadherence.

Does this make his story any less sad? I don't really know what to say. I don't see many people like him in my clinics, children of privilege and gay high society brought low by AIDS. But I see lots of people in his situation: still alive long after having given up on life.

The thing about his predicted death sentence, likely enough when it was imposed upon him at the age of 23, is that it didn't just absolve him of the necessity of becoming an adult - it left him permanently excused from the responsibility to care for his own health. When he was diagnosed, there was nothing that could be done for people with HIV, and precious little they could do for themselves. Comfort care, mostly.

The state of the art has changed, but many of the underlying attitudes haven't. Hopelessness. Fatalism. Often the same people who rage against the doctors for not doing enough, or "the system" for not having a cure, are the ones developing resistance to drug after drug because they haven't really committed to their treatment. Because they don't really believe, at a deep and maybe unconscious level, that anything can be done. Because in their hearts they are dead men walking.

This author, this Hugh Elliot, has to know that the reason for his drug resistance is his own nonadherence. After they've had to change your regimen a couple of times, they tend to harp on it. But he doesn't acknowledge it. Most AIDS narratives don't. I've become so acutely aware of that omission. Probably sometimes it's self-serving, a desire to appear the innocent victim. More often, I think it's a matter of learned helplessness, the conditioned absence of a sense of control over one's situation.

I do my best. But sometimes I feel as though I'm trying to sweep back the sea.

Life's getting back to normal, although I'm still following the news with more vigor than usual. I've also been unusually tired. I thought I was coming down with some kind of bug, but now I'm wondering if it was just accumulated stress.

It's a good time for me to be getting back to full alertness and concentration, because things are heating up at work. Lydia and Lauren (the new intern, who is also my new meatspace friend) came up with the idea of studying HIV+ patients' stress and coping in response to the disaster, and seeing whether stress was correlated at all with changes in immune function. So Lauren's trying to get the proposal together, and she's never done anything like that before so I'm shepherding her through the process. I'm dubious about whether she'll come up with anything - I think by the time the study gets approved and off the ground, too much time will have passed since the bombing and our patients won't be stressed about it anymore. Oh well, doesn't cost anything to try, I suppose. And - we're all stepping sort of hesitantly around this, not wanting to say it - if something else happens, we'll already have the study approved.

*shudder* Ick. Ugly things can happen to the minds of people who study stress.

At any rate, that's not the only new project. ( Read more... )