What are some of the biggest issues facing women with HIV?
For women with HIV, the biggest issues are how to optimize their health and prevent disease progression, as is true for men. However, two thirds (66 percent) of women with HIV were infected by heterosexual contact, and many did not know they were at risk. Thus, they may be more likely than men to feel ashamed and want to maintain absolute confidentiality about their HIV infection. This makes them feel very alone and isolated.
In addition, women are far more likely to be the primary or only source of support and care for minor children; for many women with HIV, maintaining their health until their children reach adulthood is their first concern.
I think it is extremely important that we determine through studies whether or not women respond to HIV treatment in the same ways as men. The information that women in one study developed AIDS at a lower viral load than men, and, in fact, at a viral load below the recommended level for treatment with HAART, makes it extremely important that we determine if we are treating women early enough.
My impression, both from clinical experience and from unpublished data, is that following the current treatment guidelines will be appropriate for women as well as men. However, we should know that this is the case, and this we can learn only through further study. [Click here to see PDF of U.S. HIV treatment guidelines.]
Where have you focused your work with HIV-positive women?
My focus has become much more international recently. I now work both in the South Bronx, [N.Y.] and in Rwanda. Many of the issues are the same, though they may be more extreme in Rwanda. They are so similar -- South Bronx and Rwanda -- starting with just the general feeling of the epidemic when you're there. In the South Bronx in 1990, you'd walk into a ward -- and we did have open wards in Bronx-Lebanon Hospital at that point -- and it was just full of people dying from AIDS. We did not have a way to treat them. We could do little things. We could delay death. Then, after that, we could help people die.
Now, when I go to Rwanda, I can walk into a ward and it's the same thing: full of people who are dying of AIDS, both women and men, in separate wards, obviously. One difference is that, in Rwanda, there are two people in a bed.
The thing is, when I think back to the South Bronx wards in 1988, 1990, [there were enough people to put two to a bed]; we just weren't allowed to do it. So, instead we'd create beds by having stretchers out in the hallway. For every ward of patients, there was almost another ward's worth, either in the hallway or in the emergency room, waiting to be admitted.
The difference is: You can walk into the ward in Rwanda and know that, if you can make treatment available, they will live. They will get better. They'll gain weight. They'll get their appetites back. They can go home to their families. We didn't have that in the South Bronx in 1990, or in the late 1980s.
Another similarity between the two places is the hope that treatment brings. Rwanda is a very remarkable country, actually. First, it has committed to treat absolutely everybody who needs it. Everybody with HIV in Rwanda who needs treatment will be able to get it as the country scales up [its infrastructure]. They don't have the ability to treat everybody right now, but they're scaling up very, very quickly. They don't have a plan that, "Oh, we'll only get to a third of the people." The plan is: You get to 100 percent of the people. I think that's unusual. It's certainly not what we do in this country.
Isn't it unusual for Africa, as well?
Yes, it's unusual for Africa. In the South Bronx, before we could treat effectively, many, many people chose not to be tested. Everyone said, "Oh, people don't want to get tested." But it wasn't true. As soon as people saw that one could live by being treated, thousands of people got tested. Not everybody has yet. But thousands of people got tested.
People said exactly the same thing in Africa. They said, "Oh, nobody's going to want to get tested because of the stigma." In fact, there aren't enough resources to test everybody who wants to be tested. We test 2,500 people a month. Not actually in our clinical program, though. We send mobile teams out to community-based, grassroots networks. They're called mobile VCT teams, VCT being Voluntary Counseling and Testing.
So that's another similarity between Rwanda and the South Bronx: The powers that be said, ""Oh, people don't want to be tested." Not true.
Another thing people said is, "Women won't access care." Not true. Women access care more than men. Everywhere in the world, women access care more than men. In general, 60 to 65 percent of every primary care practice is made up of women. Some of that's because there are more women in the world. But some of it's because women choose to go into care much more frequently then men do.
Why do you think that is?
You know, it's a couple of things. One is, clearly, women are accustomed to being in care, because of birthing. Also, it's the mother who usually brings the kids in to receive care. But I think there might be more to it than that. In general, women take their kids [to get health care]. Now, that's true in HIV, as well. In every primary care practice -- HIV, non-HIV, elderly people, young people -- more women seek care than men. Women have more reasons to seek care when they are younger, but they don't have more reasons when they're older.
Why is that?
Women have more reasons to seek care when they're younger because they get pregnant. … You know, really, young men have no reason to see a doctor, except once every five years to get their cholesterol checked, maybe, and their blood pressure. But later, men are much more likely to be sick.
You said that the government of Rwanda guarantees 100 percent care to everyone. Yet you have seen these wards that are just packed with people. Are these people dying? Are these people receiving treatment?
Well, that was in June 2004, which is when Rwanda was just beginning to be able to give antiviral therapy. So now, anybody who is in the hospital and who makes it through that hospitalization receives antiviral therapy. They are referred into a system of care that's actually right there. It's an issue of resources. No country can go from caring for zero to 100 percent [of its HIV-positive population] in a year.
I think Rwanda will go from zero to 100 percent within four years, though ... four years from when they started offering HIV treatment in June 2004. So that means they only have 18 months to get to 100 percent.
The world will watch them carefully.
I think they will watch themselves. Really, I think they will. Let me just tell you: One more similarity [between the South Bronx and Rwanda] is the position of women. The women are responsible for their children. They are subject to abuse or violence, and particularly the women we care for. More than 50 percent of them are victims of genocidal rape. It's a level of trauma that we cannot fathom, really. They struggle to support themselves, struggle to support the kids. The issues for poor women are the same. Maybe they are the same the world over. Another lesson of Rwanda is that people are the same the world over. It's a very nice place to be. I feel at home when I'm there.
Why do you like it so much?
Well, frankly, I think it's because I have an African soul. I think Africa is my spiritual home. I felt that way the moment I got off the plane.
So then to extrapolate from what we said before about what matters to women: All these things still matter exactly the same for women with HIV in Rwanda -- and Africa. How to optimize their health. How to prevent disease progression. Knowing that they need to get tested. Rwanda will do pretty much universal testing because really, everybody's at risk -- at higher risk in Rwanda than they are here, because the prevalence is higher. But really, anyone who's had sex is at risk here, too. You know? We don't really know what our partners have been doing, right?
Rwandan women frequently feel alone and isolated. But there is a lot of support. There's a very extensive network of grassroots organizations that actively reach out to bring people, and especially women, into a social setting that leaves them feeling less isolated. A supportive setting, in other words, both for widows of the genocide, and for people with HIV, and, frankly, for poor people.
Are there similar kinds of support networks for women who are HIV positive in the United States?
Why do you think that is? Why is that one aspect so different, when there are so many similarities between the two cultures?
I think that's the difference between the developed and the less developed world, although I can't speak for all of the developed world. [I'm not really familiar with] what's going on in Europe. But certainly, here in the United States we're just not very community based. Whereas Rwanda -- and I think most African countries -- are very, very community based. People feel obligated to the community. It's not about the individual; it's about the community and the country.
These groups and organizations are everywhere. They are sometimes called NGOs [non-governmental organizations], but it would have to be big to be called an NGO; a lot of them are much smaller than that. They are just an association. They do HIV work with nothing; people with commitment give an incredible service, with almost no resources.
That doesn't exist here. The best we do are the few community-based organizations. They have a much smaller reach. I'm in no way an expert on community-based organizations in the U.S., but I know I could never do here what we did in Rwanda. In Rwanda these organizations contacted us. They said, "We need help accessing antiviral therapy." We went over to see if we had a skill to share. We didn't know if we would. The real reason I have a skill to share is because I developed and ran clinics in the South Bronx for 20 years. It's the same scarcity. It's not enough doctors, not enough space, and, to a certain extent, not enough money.
Are there enough meds?
There are enough meds because Rwanda has the Global Fund [to Fight AIDS, Tuberculosis and Malaria] and PEPFAR [the President's Emergency Plan for AIDS Relief] funds. The only way that a country can guarantee it will treat everybody is that it has to have access to medication. That comes through PEPFAR and the Global Fund.
What Rwanda didn't have was the infrastructure to deliver treatment. Now, having medication is good. It's necessary, but not sufficient. You need an infrastructure in which you can deliver care and monitor what happens. They are doing it much faster than anyone I've ever seen, and they do a very good job. Our role there is to help with that. The way we do it is to respond to the request that the women's grassroots organizations made, which was, "Please put the care at our site." That way, everything we do is done through the grassroots organizations. They own the clinic. We run it. The expectation is: They will run it within three years.
That's fantastic, because then you have got people serving their own people.
That's sustainable, right? But it can't last without money. I mean, you still have to pay salaries, but you don't need foreigners running it. It's much better to have Rwandans run it.
We do also provide other services that are not necessarily at their sites, but the community accesses our services through these grassroots organizations. [That's why we started doing] VCT in the middle of September and by October we served 2,500 people.
We provide VCT to 1,200 to 2,500 people a month now, depending on demand. It's because we're using an existing infrastructure that is very broad, and very deep. We provide the service and we teach the organizations how to provide the service themselves.
How do you think a model like that could be implemented in the United States? Is there a way to reach women that way in this country?
I have thought about it. I think it might be interesting to explore that, and see if there is a way to do it in the U.S. It would take looking at the grassroots organizations that exist, and talking with them about whether they think this kind of a model could work. It doesn't take a lot of space or a lot of personnel. Basically, you can have a clinic that has four midlevel providers -- nurse practitioners or physician assistants -- who are HIV experts and one or two doctors. We built a clinic in Rwanda that has reception space, medical records space, four exam rooms, a lab and a pharmacy. Really, you don't need that much room to do it. You could probably do it in a thousand square feet. You can take care of about 3,500 people that way. Now, really, you could do that here, if you could guarantee that 3,500 people would be there. We can do it so cost effectively in Rwanda because even if we're providing money, it's the NGO association that brings the patients in, that follows the patients, that knows where they are, that knows if they're sick.
So it's possible you could do it here. The difference here is that we're so much less community based. If you go into a community in Rwanda, and you ask where so-and-so is, they know where she is. They know if she died. They know if she was sick. They know what happened.
There's got to be a way in the United States to reach out to women in the same, or at least in a similar, way -- through churches or parent teacher associations [PTAs], or something.
That's possible. What if you put it in a church? That's not a bad idea. It doesn't just have to be for women.
You could put a clinic in a church and serve the entire church. Now, there are issues of confidentiality, so if you put a clinic in a church, you protect confidentiality by making it a general medical site. That is a very different, more difficult and more expensive proposition, though. It's definitely much better as a way to give care. But it's harder. Especially financially. I do think it's a replicable model throughout most of the rest of the world.
Switching gears a bit: What do you see as offering the most hope to people with HIV, both here in the United States and in Rwanda?
Clearly the most miraculous is that treatment is being provided in Africa and Asia. That all the talk about how it couldn't be done was nonsense. All it takes is money. We set up our clinics in Rwanda as models of a place you or I would want to go. You go there, you get taken care of, you don't spend forever. You have a nice running, high-quality clinic.
Someone in Rwanda said to me, "Well, you can't do that here. This isn't America. You can't do that here." I said, "Well, why not?" She said, "Well, you know, there are always problems with electricity and water." And that's true. But I said, "Yeah. But that's just money." You know? You buy a generator and you buy a water tank. Not only that; it's not even very much money. You [can] put in enough water on [just] one thousand dollars. A thousand dollars, you get this gigantic water tank. Mostly, it's filled by rain. In the dry season, you pay to fill it up with water. It's just money.
They said, "Well, nobody will want to come for appointments." I said, "That's what they said about my patients in the South Bronx, too." It wasn't true in the South Bronx, and it hasn't been true in Rwanda.
Without question, the most hopeful thing is that care is being given in Africa; that it's not that hard; that there's money to do it -- maybe not enough -- but there's money. The developed world still has to come up with more money. Caring for people with HIV is probably going to work better there than it works here, because people will most likely be more adherent. They start the drugs when they are naïve, and they are less likely to get resistant.
Another reason treatment will work better in Africa is that the governments in the World Health Organization actually practice evidence-based medicine; and they control it. Meaning, the doctors can't be out there, doing whatever they feel like -- giving two drugs instead of three, giving this drug instead of that drug, giving combinations that are antagonistic. The government controls what regimens can be given, and in what order they are given.
That's true, I think, in almost every African country. It's certainly true in all of [the East African countries] I know about. Actually, I'm pretty sure Senegal and Côte d'Ivoire do that also, because I just talked to some people from there.
The third reason [HIV care will work better in Africa is that] the patients are more adherent. They take the drugs. Part of the reason people are more adherent in the developing world, I think, is actually, also, being community focused instead of individually focused.
How does that relate to adherence?
Well, you have to be alive to take care of the orphans. Everybody takes care of orphans. If someone tells you this is what you're supposed to do, you do it. It's reasonable. If it's not reasonable, you may choose otherwise.
So you're saying there's an obligation between the doctor and the patient that doesn't exist here?
Yes. Well, between the patient and the community, too -- between an individual and the rest of the community, and the family.
Because they think that they owe it to the community to remain healthy?
Yes. To not be a burden, to be able to do their share. They want to work. I mean, here's the order in which we were asked for help. We were asked for antivirals, followed almost immediately by food. Followed by, "I need my children to be tested." Followed by, "I need a job. I'm strong and I want to work."
Rwanda is a very, very inspiring place to be. Actually, another hopeful thing for people with HIV is that the research will get done in Africa. We will do research. We will figure out what works best.
Then the third really hopeful thing, I would say, is what we're learning. The genetic discoveries are amazing. You know what? It's not that expensive to do. Running the genome is really less expensive than one resistance test. If we can afford resistance testing, why don't we run the genomes? Now, the reason is, we don't know what to do with the information yet. But [our knowledge of genetics and HIV is] just exploding. Researchers are looking into genetic determinants of adverse effects on HAART. What determines lipodystrophy? What determines high lipids? Some of it is determined by a genetic profile. If you know somebody's genotype is going to cause -- not just predispose, but almost certainly cause -- an adverse effect like abacavir hypersensitivity, which is life threatening, you can just do the genotype and not give the medication to those people. Avoid it, and give them a different drug.
Now, what are our problems in treating HIV? Our problems are adverse effects, to which there is a heterogeneous response -- meaning, not everybody responds the same way -- and efficacy, to which there is a heterogeneous response. It doesn't work for everybody. Genetics are sometimes responsible for the failure of an HIV medication.
There's one other area in which I'd like to see more research. Just like in the United States, it's important to be able to distinguish individual differences. It's important that we study how the drugs work in Africa, or in Asia, or in Latin America.
You mean, how different populations respond?
And how different viruses respond. The viruses aren't the same in Africa, either. The virus has different clades. We're clade B. The drugs are all tested on clade B. In fact, most of them were designed around clade B. We know they work. When we're testing efficacy, a 15 or 20 percent difference is considered a big difference between drugs. So what if there's a 15 to 20 percent difference, better or worse, among Africans, or among West Africans, compared to East Africans, or South Africans? That's something we need to know.
Now, fortunately, the mapping of the human genome has led to the general acknowledgment that a lot of what we see happen clinically -- [interaction with either the drug or the infection] -- is actually driven by our genetics. You need to know what happens in different populations. There is even some evidence that other clades do not respond exactly the same way, or that disease progression is different in different clades. So that's why we need to study it.
It's so important for us to plan for the future, and to think globally. So you have to give care. You have to do research. Because you have to know how the virus works across the globe. We can't just focus on the United States and Western Europe.
Click here to read Dr. Anastos' HIV Frontlines interview about her work in Rwanda.
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