January 31, 2008
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Welcome to HIV Frontlines. In this series, we'll talk to a range of health care professionals who have both provided HIV care and trained health care workers in resource-poor areas throughout the world. From China to Ukraine to Rwanda, these inspiring clinicians are doing their part to make a difference in regions of the world where access to HIV treatment and care is only a shadow of what is generally available in the United States. Through these interviews, we'll get a glimpse of the realities of practicing HIV care in some of the world's poorest areas.
I'm here today with Dr. Kathryn Anastos, the executive co-director of a community-based organization known as Women's Equity in Access to Care and Treatment (WE-ACTx). It is based in Rwanda and provides HIV primary care to women who were infected with HIV during the 1994 genocide. Dr. Anastos is also a professor of medicine, epidemiology and population health at Albert Einstein College of Medicine in the Bronx and has provided clinical care and leadership in the South Bronx for more than 20 years. Whether in the South Bronx or in Rwanda, Dr. Anastos is dedicated to working at the crossroads of HIV, race and gender. Her research centers on the role of sex and race in response to treatment, and the impact of HIV or HIV treatment on medical conditions prevalent in urban communities of color. Welcome Dr. Anastos!
Dr. Anastos, I understand you've just returned from one of your frequent trips to Rwanda. Before we discuss Rwanda, can you tell me where you started out in medicine?
|Kathryn Anastos, M.D.|
So, I am trained as a primary care internist. I finished my training in 1983, within the first couple of years of the AIDS epidemic. In fact, I subsequently learned that one of my patients, whom I had cared for as a second-year resident, in 1981 to 82, was the first case of a woman accepted by [the] CDC [U.S. Centers for Disease Control and Prevention] to be heterosexually infected. Up until that point, the CDC had said: "Well, the women just must not be telling us the truth. If their partners were doing drugs, they're probably doing drugs too." I took care of both her and her partner.
Was this in the Bronx?
Actually it was at Montefiore. Montefiore [Medical Center] in the Bronx. Then I was a primary care doctor in the South Bronx, and if you're a primary care doctor in the South Bronx in the late '80s, you quickly learn to take care of HIV [-infected patients]. Although in those days, there wasn't much we could do.
Can you describe the population in the South Bronx?
The South Bronx was almost completely African American and Latino/Latina. Probably about 75% men and 25% women in those days. Almost all of the men had been infected through injection drug use, although there were some gay men in that group. The women had been infected through injection drug use, but equally likely -- or maybe even more likely -- through heterosexual transmission.
This was during those years before HIV treatment was available. How did you deal with having so few tools at your disposal?
There are two levels of answers. One is: there were things we could do. We could prolong life. It made a huge difference to provide prophylaxis for Pneumocystis pneumonia. When we started providing Bactrim, that made a big difference. We used sequential monotherapy for the antivirals, which probably made a difference. And then we helped people die. Really, that's what we did.
As for the patients and the families, we grieved a lot, because people were always dying.
In fact, that is a similarity with Rwanda. In the Bronx, even up to 1996 -- which is when we finally got effective therapy -- basically what we did was prolong life and help people die; help people get their responsibilities taken care of. For women especially, that meant their responsibilities regarding their children. We helped them find alternative guardians, so that when they died, they knew their children would be cared for.
Now in Rwanda, it feels remarkably similar to what I saw in the Bronx: especially when I walk into a hospital ward and find two people to a bed, very sick with HIV. Although that was two years ago. That's actually less common in Rwanda now.
The difference is, in Rwanda, even in 2004, if you walked into a hospital ward and many people were dying of HIV, there was hope. Which we didn't have until 1996, because now you know if you provide treatment, that people will live. If you can just get the HIV drug regimen in for two weeks, you can turn around that process that is inexorably headed towards death.
|Children and leader of virtual orphanage in Cynangugu (click to enlarge)|
© Jonathan Wallen
We got involved in 2004 through a very specific event. Some of the women's organizations in Rwanda, the grass-roots organizations -- in this case through an organization of women who were genocide survivors, many of whom were HIV infected through genocidal rape.
In late 2003, one of these groups, AVEGA [Association of Genocide Widows Agahozo], sent what I think was probably a widely broadcast e-mail to many people, probably everyone they could think of who was connected to HIV and women. What they were asking for was help in accessing antiretroviral therapy. The reason they were asking that was that they had just learned that the perpetrators of their rapes, who were being tried in the international tribunal in Tanzania, that the perpetrators were being treated -- with state-of-the-art, triple antiretroviral therapy. I believe [it was] because they were [being held] under international law. The women were outraged. That's what we were responding to.
That e-mail did not come directly to me. It went to my co-director, Anne-Christine d'Adesky, who was a journalist. We put together a little group, got a little bit of funding from Stephen Lewis [former United Nations Special Envoy on HIV/AIDS in Africa] and did a feasibility trip in April of 2004, to see if in fact we had a skill to offer. That's how we started working in Rwanda.
What was your first impression when you went to Rwanda?
That it was a situation that could be completely turned around. It was a very emotionally difficult time, for Rwandans, and therefore for us. But more for Rwandans. It was the 10-year anniversary of the genocide. So this was a very emotional time. We met with many groups of women who were survivors, who were called the widows of the genocide. They said, between tears: "We're dying from HIV infection." Which they were. You could see it. "A lot of people come, and nobody comes back" -- which was heartbreaking.
You mean people come to Rwanda from the developed world?
Yes, they would come from the developed world, take a look around Rwanda and say, "Oh, I'm going to do something," and then they don't. Right? So we did. Let me add one other thing. The women's organizations had their own little clinics, where they had maybe one nurse or two nurses working with them. Basically they were giving palliative care -- they were helping people to die. Exactly what we did in the U.S., before 1996.
We didn't actually know Rwanda before we got there. We didn't know what the country was like, what the culture was like. Was it urban? Was it rural? In fact, it's mostly rural, but it's also very densely populated. So they're putting in centralized service works; meaning, putting in a clinic works, as opposed to having to have mobile services that go out into the community.
We thought we would do a model, sort of like a village worker model. The leaders of these organizations, all of whom were victims themselves, said "No, no, no. We know the model we think will work. Why can't you train our nurses to give good care for HIV, and provide us with a doctor to supervise them?"
And they were absolutely right. It was a great model. So that's the model that we implemented. We actually trained nurses within three weeks. We got nurses into training through the Rwandan government. None of this could have worked without the Rwandan government already being deeply committed to providing HIV care to all Rwandans.
|Mother and child at Keep a Child Alive Center of Excellence for Pediatric Care/Icyuzuzo Clinic in Kigali (click to enlarge)|
© Jonathan Wallen
Actually, the Rwandan government is a non-corrupt, mission-driven government. It is the people who stopped the genocide: the Rwandan Patriotic Front. When the war was over, when the genocide was over, in July of 1994, they inherited a completely devastated country. They had plans for what they would do if they won the war, but they had not planned on the genocide occurring. They had a deeply traumatized people and a shattered infrastructure in the country.
I wasn't aware of all the details of the Rwanda genocide, so I looked up some numbers. It was a 100-day genocide in 1994; 800,000 people were killed. Two hundred and fifty thousand Rwandan women were raped and 125,000 women are estimated to have become HIV infected.
Those [numbers] are approximately right. Some people say a million people died in the genocide, some people say 800,000. It's actually not entirely known. Those other estimates are the numbers that are usually used.
Seventeen percent or 24,000 women are still surviving with HIV. The rest, I guess, have died.
I would be interested in knowing where that number comes from, because I think probably more women are surviving. You would expect actually, that less than 50% would have died. People really did get treatment in around 2004, 2005, but the median time to AIDS -- almost every place -- is 10 to 11 years. Then, people don't necessarily die when they get AIDS. So you would think that in 10 years, more than 50% of people would still be living. Although nobody has tracked it; it's really hard to know.
In Rwanda are you dealing exclusively with people who contracted HIV in 1994, or are there new infections?
Actually, you can't really tell when anybody got it. They could have gotten it before 1994; they could have become infected after 1994. We do not discriminate. In fact it's illegal in Rwanda to choose one group of people over another group of people. If you provide a service, you have to make it available to everybody. And we do. We take care of women who are genocide survivors and women who are not genocide survivors, but HIV infected through some other mechanism, children and men. It happens that 80% of the adults we care for are women. Of those, about 50% of them are genocide survivors.
How did it work in terms of getting antiretrovirals, getting services, and getting all kinds of tools on the ground? How complicated has that been since you began?
I have to stress again that the Rwandan government had made a commitment -- that many people didn't know about, because it was just beginning to be rolled out. They had made a commitment that they would treat everybody who needed it. And the Global Fund for AIDS, Tuberculosis and Malaria and PEPFAR [President's Emergency Plan for AIDS Relief] were funding Rwanda's antiretrovirals and, to a certain extent, the infrastructure. But what was really missing was the infrastructure to deliver care. That was actually the skill that we had to share.
In spite of my being a specialist in HIV and women, and a researcher in HIV and women, the most valuable skill I had was that I had been an executive in a poor community, and developed large numbers of clinics to deliver ambulatory services.
Really, the shortages were the same. The situation was very similar: not enough space (Rwanda's a very overcrowded country. So is the South Bronx.), not enough doctors, maybe enough money and little existing infrastructure.
So our role there really is helping to provide infrastructure that can deliver the service -- that can bring people into care, deliver patient-friendly, cost-effective, high-quality service and that's linked to what the government already does, in ways that are not duplicative. Ultimately, these services belong to the Rwandans, not to us.
How often have you been going to Rwanda?
Usually I go about once a quarter, for a month. So every third month for a month. Sometimes it varies. This past year because of issues in my family, I went less frequently. Now I go more frequently -- since September I have made three to four trips. Also, when my children can come -- I have three daughters -- when my daughters can come, I stay longer.
What's your typical day like in Rwanda?
This last time I was there was actually really great. It was the first time that I did not have to do what I call "line management" -- you know, the basics of on-the-ground service delivery. We have trained a lot of people to do that. We have 85 employees. We have a management structure that really can supervise those employees. My role this time was to see how things were going; to meet with the staff, but to look towards other activities that the Rwandans feel would be beneficial. This past time, I spent time working on an initiative to do cervical cancer screening in Rwanda, which the Rwandan Ministry of Health is very committed to.
Do you know about cervical cancer and cervical cancer screening in so-called less developed countries?
|Mother and child at Keep a Child Alive Center of Excellence for Pediatric Care/Icyuzuzo Clinic in Kigali (click to enlarge)|
© Jonathan Wallen
We don't have much cervical cancer in the U.S. We still have more than we should, but the reason we don't have it is that we prevent it. We prevent it by doing Pap smears. When you do a Pap smear, you find the early lesions of cervical cancer, which is caused by a virus: human papillomavirus. Then we treat it. When you treat it, you prevent the progression to cervical cancer.
Whereas in most lower-resource countries, there is no prevention of cervical cancer. Like here [in the U.S.] before we screened, in those settings, cervical cancer is the leading cause of cancer deaths in women. It actually is a highly prevalent disease if it's not prevented. Very few lower-income countries prevent it.
But Rwanda is very interested in finding a way to screen and to prevent cervical cancer. We've been working with them on that. And it's not just me; I have two colleagues who do this. Dr. Mardge Cohen, whom you may know, who does a lot of AIDS work with women in Chicago, and then there's Dr. Diljeet Singh, who is a GYN [gynecological] oncologist, who also helps a lot with this work. So I did that.
The other big thing I did this last time was that I met with the medical school in an effort -- at their request actually, the request of the National University of Rwanda -- to develop some liaisons from my medical school, which is Albert Einstein College of Medicine, to the National University of Rwanda, to strengthen their curriculum and their teaching.
What HIV medications are available in Rwanda to patients?
Well, the first line is always -- I actually should say a little bit about this, because it really is a very good system, probably better than what we do. It's better for one reason, because they guarantee to treat everybody, although they're still rolling it out. They keep a lot of scientific control, evidence-based control, over how HIV is treated. So there is a protocol about how you start people on treatment, and what medications you use.
The first-line medications are always a nevirapine [Viramune]-based regimen, unless there is a contraindication to nevirapine, with either AZT [zidovudine, Retrovir] and 3TC [lamivudine, Epivir] or d4T [stavudine, Zerit] and 3TC. They come in single-pill, fixed-drug combinations.
Patients have to take the pill twice a day: one pill in the morning, one pill at night. And you get essentially state-of-the-art treatment. If they need to use an efavirenz [Sustiva, Stocrin]-based regimen, which here [in the U.S.] is Sustiva, they will do that. But then the regimen is a little more complicated.
Just to round out the picture, so you know how it really works, there are a couple of things that have to occur before someone is started on antiviral therapy. The first is: the patient must identify a buddy, or a family member: a person of their choosing who knows that they have HIV and who will attend a required three-day patient education course, with the patient. So every patient gets three days of education. I could never achieve that here for my patients. There is a real effort to educate the patient about what is important and then also to educate the doctor. The other thing that must happen is that there's a selection committee, which is a group of people. In the selection committee, every patient who is going to be started on antiretroviral therapy is presented to the group. There are many such groups. In the beginning, there was one such group, but now there are many such groups -- each of the sites that is providing antiretroviral therapy.
|Community members from Solidarity Association, a community-based organization in Kigali (click to enlarge)|
© Jonathan Wallen
I actually don't know. I don't do that part. Although the big piece is: Why do you need it [antiretroviral treatment]? How do you know you need it? How well will it work? And why does it matter that you take it exactly as prescribed (meaning adherence)?
Are the patients paid to come to the educational sessions?
No, they're definitely not paid. In my opinion, nor should they be. Although we provide their transportation to get there. Many places do not.
What sort of second-line treatment is available?
The second-line treatment is a Kaletra-based regimen; a lopinavir/ritonavir regimen.
How do you make other medications available?
Every medication you use is Rwanda has to come through the government system; everything. There is a centralized procurement mechanism called CAMERWA, which is a French acronym; it's an acronym for French for the drug procurement system for the country. So the "R" in it is Rwanda: CAMERWA. If you think about it, that's actually a huge issue, that in many ways, we don't have. [The question of:] How do you get HIV drugs to people who need it? How do you make sure you have enough drug coming in? How do you make sure it gets to the clinics it needs to be in; and from the clinic to the patient, without getting diverted into a black market. And that you don't have what's called "stock-outs," meaning the entire country runs out of a drug. In which case, everybody who is on the drug would miss their doses.
And you feel that this system, run by the government, works effectively?
Yes, extremely effectively.
So what's going on with the patients who cannot access treatment yet? I know that there's a rollout, which started in 2004, but how close are we to treating 100% of the patients (who need treatment)?
I think they're probably halfway there. They keep numbers; they know how many people they're treating. I think it's close to 30,000. It's a small country, with an infection rate that's somewhere between 3% and 5%. Of the people who are infected, probably only a quarter to a third actually need treatment -- now. The rest probably will progress to needing treatment. They're actually doing a fantastic job.
Do you have available to you all the monitoring tests -- viral load, CD4+ count?
No viral loads. It's all done on the basis of CD4+ counts. But there are CD4's, which is not necessarily true every place else.
And resistance tests?
No. They actually have the equipment there, but, you know, it's 800 bucks to run a resistance test. [Laughs.] If you don't do viral loads, you don't usually do resistance testing. They probably do them in certain circumstances, but we have not run into that yet.
Do you feel that you can function without these monitoring tests?
Well, you do what you have to do. [Laughs.] Right? I think it's more important to reach more people than to use viral loads. I think actually that it's not even proven that you need the viral load. Maybe not even here [in the U.S.], but certainly not in these settings [in Rwanda]. A cost-benefit analysis would not necessarily lead you to do viral loads versus treat more people.
|Welcome dance at Solidarity Association, a community-based organization in Kigali (click to enlarge)|
© Jonathan Wallen
HAART [highly active antiretroviral therapy], triple antiretroviral therapy. It's not single-dose nevirapine. There was a brief period in Rwanda when single-dose nevirapine was used, but pretty much, it's all shifted over to what we would consider state-of-the-art treatment. Without C [Caesarian]-sections though; here you might consider [that] state-of-the-art treatment might contain C-sections also. Which we would not do in Rwanda. Which I'm not so sure we should do here [in the U.S.] either.
Where do you get the financial support for the Women's Equity in Access to Care and Treatment (WE-ACTx) group?
Oh, we struggle, we really really struggle. [Laughs.] You know, we have some really dependable funders: Keep a Child Alive, whose executive director is Leigh Blake, who's really a pretty amazing person. They fund one whole clinic for us. Ronald McDonald Foundation has funded a family program. We do have a lot of enhanced services for the children who are HIV infected. Basically, it's built around family acceptance, the kids' mental health, and the ability to adhere to the treatment. So Ronald McDonald Foundation is funding us for a second year for that. Stephen Lewis Foundation has funded us quite a bit. But we really struggle. We are always, always, always looking for enough money to sustain the programs.
Are you the fundraiser?
I guess so. We're all fundraisers. Well, who's all? Basically there are three of us in WE-ACTx, which is the acronym for Women's Equity in Access to Care and Treatment: myself, Dr. Mardge Cohen and Anne-Christine d'Adesky. We do the fundraising as well as the work, which is very difficult; which really is burning us up. So we need a better solution.
Does the funding help pay for your trips to Rwanda?
No, we pretty much pay for our trips other ways. All the money we have specifically raised for WE-ACTx, we spend in Rwanda.
|Children at the community-based organization Solidarity (click to enlarge)|
© Jonathan Wallen
No, I didn't think about it. I guess I would have thought I'd end up in a Spanish-speaking country, because I have to speak Spanish to work here [in the Bronx.]
And Rwanda is English-speaking, isn't it?
Oh, how's your French?
It's okay. [Laughs.] My French gets better and better and Rwanda becomes more and more English-speaking, especially in medicine. I don't know if you're aware that the role of the French in the Rwandan genocide is considered pretty reprehensible, and with a lot of very ill will from the Rwandans, who recently cut off diplomatic relations with France. So they actually were sort of very deliberately changing the colonial language to English.
Wow. That's pretty dramatic. Are you doing any clinical trials in Rwanda?
No, but I do an observational study there similar to WIHS, the Women's Interagency HIV Study.
That's the one you're involved with here in the United States.
Yes, which is an observational study. We were very successful actually; we enrolled a thousand women in Rwanda in less than six months. I'm not sure that's been done anywhere in the world. Certainly not in the U.S. though. It would be very hard to enroll that many people. Let me say why we were able to do that. In fact, this comes back to something I should have said much earlier.
All of our work occurs through grassroots organizations. The original groups who approached us, as well as now 20 other groups -- we have 24 grassroots partners who are very community based, which provides this incredible reach into the community. Some of them are HIV organizations, some are not. Like the Veterans Association -- we're the HIV provider for [them] and whenever anyone asks us to provide care, we do. Utilizing that infrastructure is part of what makes us successful as a high-volume provider, that the people are already being accessed by the organizations, or the people are accessing the organizations. It goes both ways.
When we started the research program, which we did after asking the Rwandan women (HIV-infected women) whether they thought it should be studied, we did it through these organizations. That's part of the reason why we were successful. Let me just tell you what the Rwandan women said, when we asked if it should be studied. This was on our very first trip there, in April of 2004. I asked the question: "Do you think that there should be research on this? Do you think that this should be studied?"
The women visibly startled and said, "Well, of course you have to study it. How are you going to know what happens to us if you don't study it?" Which is true, right? But what actually took some doing, to get the rest of the research infrastructure there. So we enrolled a thousand women in six months. We disenrolled about 60 women because they had not told us the truth about whether they were on antiretroviral therapy. They had to be na?ve to antiretroviral therapy to enter the study. We're now just finishing the fourth visit for 936 women -- with very high retention. And the retention is high, I think, because of the grassroots organizations with whom we work.
How can other health care professionals get involved?
It's very individual. For example, we have two clinics that are really HIV-dedicated, that we run with a Rwandan partner. But we're also the HIV provider in a public health center, which is how Rwanda wants all of the care to go; they want it to go through the public health centers. For example, the maternal mortality rate in Rwanda is very high. We see, as part of our mission there, lowering the maternal mortality rate, which will also lower the infant mortality rate. So midwives, for example -- working with us -- would be helpful. Although we do have a senior midwife already working with us, and all of this would go through her. But mostly what we need is money. Really. We don't provide the care, the Rwandans provide the care. What we do is help provide an infrastructure.
And that's with money.
Well, money and the knowledge of how to create a delivery system.
All the medications go through PEPFAR so you don't need medicine donations or anything like that?
No, in fact you can't do that. The Rwandans are very strict about that.
So if anybody knows of any fundraisers, you want to hear from them -- if they can raise money for the organization.
Now that you have this knowledge about working in Rwanda, do you ever think about going to another country and helping them as well? Have you gone to another country?
We're asked by many other countries to help. Once the communities hear about this mechanism of using their existing organizations, they can see how well it would work. So we're asked frequently by other countries. The [country] we've been most involved with actually is in the Congo. But there are two things that are kind of critical. One is [that] we must have financial stability before we go to any other countries.
The second is that the country itself makes a big difference. Our success in Rwanda is predicated to a great extent upon Rwanda itself, and the government's commitment and organization around delivering HIV care. [Without] that, it's a different task. It doesn't mean it can't happen, but it really is a much different task. We would have to do a different kind of feasibility assessment before we would actually start delivering care. That pertains to the Congo. There are probably other countries -- Uganda, Kenya -- where it could work almost as well as it works in Rwanda.
Your story is certainly inspiring. It's amazing what two or three women can do. [Laugh together].
My daughter said that. My middle daughter came [to Rwanda] in early 2004 when we were really just starting. It was me, my daughter and one intern. It was obstacle after obstacle. And one thing she said right away, she said: "You know, when you come here" -- she was in high school at the time -- "When you come here you realize that all the things we worry about at home, they don't really matter." And she didn't mean material things, although of course that was included; what she meant was things like: "What are your grades? What are your AP scores? What are your SAT scores?"
We beat the kids up about this stuff. That's what you want your kids to see when you go someplace else. That that's not what life's about. That's not what's important. What's important is making a real difference, to people who need it. But the other thing my daughter said was that she learned how even one person can make a difference if they just keep going. Just keep doing it. Assess the obstacles; overcome the obstacles. Just keep going. [Laughs.] So you're right.
|Women leadership of Solidarity, a community-based organization in Kigali (click to enlarge)|
© Jonathan Wallen
Yes. Which means 100,000 are probably in care. I would look those numbers up myself before I would give them to you -- as the actual numbers -- but ...
So that's an amazing rollout.
Yes, it's incredible. They have done an incredible job.
These are just two or three clinics? Is that correct?
No, Rwanda does it in many clinics. For example, in our clinics, we have 5,000 people in care. And maybe 1,400 on antiretrovirals, which until recently, were actually provided in a government clinic. We didn't provide the antivirals. The government wanted us to refer the patients to them so we did. Now we provide the antivirals in our own clinic. But Rwanda's rolled it out through their public health delivery system.
Well, thank you so much. This has been really inspiring. I hope we can inspire other people to donate money. Is there a Web site people can go to?
Yes, actually the Web site is important. It's www.we-actx.org.
People can donate money on the Web site?
Yes. They can also donate through Crossroads Fund in Chicago.
Thank you, Dr. Anastos.
To support this work, Dr. Anastos is not only accepting donations, but seeking volunteers. Click here to find out more about volunteer opportunities in Rwanda, or e-mail Dr. Anastos at email@example.com.
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