In this field of HIV/AIDS support, advocacy and prevention, it’s not unusual to hear talk about “the gap” between research and programming.  Committed and educated researchers dedicate years to figuring out what works through pilot projects, evaluation and trials.  When they come up with something effective, it’s understandably frustrating to watch organizations, community groups and governments making programming decisions that seem to ignore the evidence that they’ve worked so hard to produce.  Ideally, where we have evidence that a particular HIV-prevention program works, we should be trying to use this evidence-based programming as widely as possible … shouldn’t we?  As it turns out, individuals, groups and governments regularly make choices based on factors other than evidence of effectiveness – prejudice, religion, personal preference, perceived public opinion, etc.  How can we make the best use of evidence-based programming in the context of our specific communities?

I recently learned from CATIE (the Canadian AIDS Treatment Information Exchange) about a fascinating American project called DEBI (the Diffusion of Effective Behavioral Interventions Project).  DEBI’s goal is to make HIV prevention programs that have been proven effective in a research study, available to other organizations.  At the time of writing, DEBI provides online tools for more than 25 population-specific individual-level and group-level “Interventions”, and they support organizations to implement them in their own communities.  This sounds fantastic (and I think it is!) but there are actually some challenges to using evidence-based programming, and in particular, to adapting it for effectiveness in another community (geographical, cultural, ethnic, etc).

While we want to change a program to meet the needs of each community (called program adaptation), we need to keep it “the same” enough that it doesn’t lose its effectiveness (called program fidelity).  The clearest examples of this challenge come from programs that are adapted to accommodate (real or perceived) cultural differences.  Let’s say for example that there is an effort to implement an evidence-based parenting program in a group for whom physical punishment is the generally accepted norm.  Complete program fidelity would mean taking a hard-line anti-hitting approach, but this is alienating the participants so that they are not participating.  “I was smacked and it didn’t hurt me,” say the parents.  Studies and experience have shown that if the program was adapted to “tone down” this key message, more people would come, but the program would lose its effectiveness – the parents would still hit their kids.  Miguelina German of Arizona State University decided not to compromise this core component of the program.  Instead, she and her colleagues adapted it by creating some new materials containing a compilation of the available evidence that hitting is not only ineffective but can lead to a further deterioration in a child’s behaviour.  The parents accepted this and the program had a higher success rate without compromising retention.  (Thanks to Prevention Action for this example.)

In this 2007 article, Connor, Small and Cooney from the University of Wisconsin-Madison provide an excellent overview of the challenges of balancing program fidelity and adaptation.  They list acceptable adaptations, including modifying vocabulary, replacing images, replacing cultural references, and adding relevant, evidence-based content as in the example above.  Risky or unacceptable adaptations include reducing the number of sessions or length of program, eliminating key messages or removing topics, changing the theoretical approach, and using inadequately trained staff or volunteers.

To read CATIE’s informative introduction to program adaptation, with an example of a Canadian adaptation of one of DEBI’s programs, visit their publication Prevention in Focus.

-Miriam

I just got back from a vacation of hanging out along the coast amongst beautiful arbutus trees.  Re-entry after vacation can be a little rocky, but I’m happily jazzed about the microbicide news that came out of AIDS 2010 in Vienna. Miriam blogged about  the conference and the CAPRISA 004 trial a couple of weeks ago, but what’s really caught my eye is that this microbicide does double duty: it also prevents herpes transmission.  

To recap briefly, the study from the Centre for AIDS Programme of Research(CAPRISA) in South Africa trial has been investigating a microbicide that contains tenofovir,one of the many drugs included in HIV treatment regimes.  Results from CAPRISA 004 show it may be a serious contender. According to the press release: 

“The microbicide … was found to be 39%  effective in reducing a woman’s risk of becoming infected with HIV during sex and 51% effective in preventing genital herpes infections in the women participating in the trial."

For women who were strictly adherent (using the microbicide over 80% of the time for sexual intercourse) HIV infection risk was reduced by over fifty percent (see slide 16 of the CAPRISA presentation. Sorry I can’t link to each individual slide!). This is a huge step in the HIV prevention field. But the 51% reduction in herpes transmission is huge too.

Having other STIs can make a person more vulnerable to HIV infection. For those with HIV and herpes, infection with both can make matters much worse. If a product offers multiple benefits, all the better for the women or men who use it. While more research is needed, there is reason to be optimistic, and I’m hoping that the results of this trial will encourage further research dollars. This could be a turning point.

It would be ideal if there was a microbicides that could be used vaginally and rectally. In my dreams, it  could be used by all receptive partners, male or female, whether they’re having anal or vaginal sex (“straights” have anal sex too). And my hopes may be closer to realization now. I don’t think it’s just post-vacation energy.

- Janet 
 

It’s 1 in the morning and you’re thinking about the tingling in your hands that’s been bugging you for a week. Where do you go online for information? You could just use the search term tingling hands and come up with thousands of hits and freak yourself out. Or you could visit Patients Like Me and get closer to info that might help.

Patients Like Me is an online resource created for people living with health conditions to share information. You can read about symptoms, side effects and treatments that have been suggested. You can’t take the info as a personal diagnosis or treatment plan, but you could use it to shed a little light on those tingling hands and then talk to your doctor if it seems necessary. Goodness knows in the field of HIV there’s still lots to learn about side effects of medications.

If you’re looking for information from health care professionals and want to read something that doesn’t require a science degree, Relay Magazine is a good one. Relay offers information on HIV disease, its treatments, treatment side effects and research. It answers questions like “What’s a cohort study?” so you don’t feel out to lunch.

Once you feel okay about the tingling and have a plan in place (Check side effects listings again. Call the doctor. Ask Sue if she had the same issues when she started this med), you can always check in with some peers. If you’re looking for stories that are funny, honest, and gritty, check out our Positive Outcomes section for stories from other positive women. Or visit The Body for a selection of blogs from pos folks that will surely give you something you can appreciate. For a personal connection you could hook up with a peer support volunteer -contact a Support Worker at PWN for more information. 

The nights may be long when you’re feeling worried, but they don’t have to be empty of information and connection.

- Janet

I’m doing some research on HIV and aging, a wonderful term that one wouldn’t have expected even five years ago. I was talking a few weeks ago with several HIV+ women about their experiences. The conversation turned to symptoms: sleeplessness, night sweats, fatigue, and difficulty concentrating. These are typical symptoms pos people experience. But many women will deal with these symptoms during perimenopause regardless of HIV status. So the question for pos women becomes, are these symptoms HIV-related or perimenopause related? Or both? And when should you check in with your doctor?

For women with HIV there has often been a question of whether HIV itself causes change in menstrual patterns. I recently read an article on HIV and menstruation that said prior to comprehensive HIV treatment, many women experienced menstrual irregularities because of dramatic weight loss and wasting. However, for women who have access to HARRT, stabilized weight and improved health with treatment may mean an end to menstrual irregularities at a younger age than non-positive women.

May.

There’s still a lot to learn about HIV and aging for both women and men. How will HIV and long term treatment affect heart health, blood hormone levels, organs that process the drugs? How will aging affect brain function? Dementia has long been one of the frightening signs of advancing HIV disease- can better overall health mean better outcomes? Time will tell. 

And there’s still a lot to learn about perimenopause for all women. Hormone fluctuations that cause extreme symptoms may suggest hormone replacement options. Estrogen or progesterone? Research wages on. 

For now, the women I talked with agreed it’s good to be up to speed on their medications and potential side effects, and to know about what to expect in perimenopause. Some will have major symptoms and some won’t. Talking with other positive women about what’s happening can help- drop by for lunch on a Tuesday or connect with a peer support volunteer (support workers can hook you up). For research information, AIDS Community Research Initiative of America (ACRIA) has a new blog dedicated to HIV and aging.

It’s a new road.

- Janet

It was great to be at the Canadian Association for HIV Research conference in Saskatoon earlier this month. Lots of interesting stuff unrolled at CAHR, but one plenary session in particular lit me up. It looked backwards at the origins of HIV and forwards at what we can do to bring an end to AIDS. 

Friday morning was bright and sunny in Saskatoon, but a dark hotel room housed a crowd to hear Doctors Mike Worobey and Mark Tyndall. Worobey’s work is dedicated to exploring the origins of HIV, a puzzle that hasn’t been solved, nor its findings fully agreed upon. Understanding how HIV has evolved could lead to new developments- perhaps a vaccine (although Worobey admitted he isn’t hopeful for that, given HIV’s mutation rate), or at least microbicide options. Tyndall cast his eyes forward, stressing the power we do and don’t have to limit the spread of HIV.

Worobey presented an overview- variations of SIV (simian immunodeficiency virus), the precursor to HIV, have led scientists to believe that it’s been around for at least 100,000 years. Based on the analysis of the diversity of HIV in samples recovered from around 1960, Worobey suggested that SIV made the jump to humans as early as the turn of the twentieth century. (He cited Beatrice Hahn’s work on the “how.”)

Although HIV had established itself in humans, it didn’t affect a large population until industrialization took off between 1894 and 1956. With new roads connecting emerging cities and development of business in Central Africa, people moved around a lot more, had more sexual partners, and therefore facilitated the spread of HIV.  Worobey emphasized that human behaviour has spread HIV, and human behaviour can stop it too- HIV is not as infectious as the flu, for example, and behaviour modification with the prevention tools we already have could turn the tide.

Ok, done.

But obviously it’s not that easy.

Dr. Mark Tyndall envisioned a world after AIDS, providing a timeline that went forwards rather than back. He too stressed the importance of our behaviour in the spread of HIV, but he took a social sciences perspective, emphasizing that the playing field isn’t even when making behavioural decisions.  Disparities such as gender, poverty, racism, mental health, governmental negligence and governmental ignorance all play their parts in making HIV prevention a challenge on the individual level where it counts.

In order to turn the tide on HIV, Tyndall argued, we need some significant change. We need to convince those with power on a big scale, like governments, that they need to support change through harm reduction policy and programming. We need to convince those with power on an individual scale, like the man in the moment with a condom available to him, to use it. We need better education on HIV, government support for harm reduction programs like needle exchanges, condom distribution, drug treatment and social programs that address the underlying determinants of health. As societies, we need to change gender disparities so girls and women have more power.  Not so easily done, he admitted. But humanly possible.

What fired me up was this doctor’s inclusion of a wide range of realities that affect health. Health is so much more than our physical bodies, and Tyndall acknowledged that in his call for social change. Yes, there’s a lot of work ahead and it’s international in scope. But looking at the work, breaking it down into pieces, and taking on what we can with passion and conviction is an effort we can all make. As PWN’s vision states, Action and Leadership on Women and HIV/AIDS. Every step has to count.

- Janet