This Month in HIV: State-of-the-Art: Women and HIV/AIDS
We do know that there are certain HIV medications that women do worse on. The black box warning on nevirapine [Viramune] is an example. It's not recommended for women who have CD4 counts over 250. This recommendation came about because providers were seeing women do poorly on that medication, and actually have a greater reaction in terms of mitochondrial toxicity and liver disease. So there have been absolute differences.
I work with the WIHS study -- Women's Interagency HIV Study -- which is in six different cities. We continually are concerned with looking at what medications are now being used, and how women are responding to them, both in terms of metabolic abnormalities and other side effects, as well as in terms of how effective the medications are for those women. I think it's an important area to continue doing work in.
You were going to mention something about side effects. Were you going to mention body shape changes?
Dr. Mardge Cohen: Right. I think that there are issues there that are important, in terms of lipoatrophy, in terms of fat distribution. I think it's important for both women and men. I think it's also very important to investigate these issues in both women and men. Women historically in the HIV epidemic have called on providers and researchers to pay attention to them in these regards, as new medications came on. I think that's very, very important to do.
Have you noticed a difference in terms of lipoatrophy with women? I know that the facial wasting seems to be a lot less common in women than in men with HIV. Have you seen that kind of thing?
Dr. Mardge Cohen: We absolutely see facial wasting. We see mainly reductions in fat, which is what you're referring to. Actually, many of the studies show that that's true in men, as well as in women. So I think we're learning a great deal. We're trying to put people on regimens that reduce those side effects as much as possible. I think that's really important.
Any idea of what a woman can do if she has thinning legs and a bloating stomach, for instance? That's a common complaint I hear.
Dr. Mardge Cohen: It's very hard. Sometimes with some of the regimens, even if you change them, the side effects continue. Some of my patients have felt that certain exercise regimens and dietary changes have been very helpful. But it's a serious struggle, I think, to deal with what does come with HIV therapy at the moment.
Cathy Olufs: There are some other options, as far as things that will help build muscle mass, but they're usually quite expensive, and sometimes require a physician that's very creative in their ability to demonstrate the need for it in order for it to be covered by some insurances.
Do you mean growth hormone?
Cathy Olufs: Yes, human growth hormone and things like that. I think there's a little bit of data that shows that may help with at least the fat accumulation. Most of my experience with women, and with what I've read, and also what I've seen, is women more commonly have fat accumulation around the belly and in the breast area and sometimes around the face, to some extent. Then they'll have fat loss in the arms and the legs and the butt.
Dr. Mardge Cohen: That's what our studies show.
"I think it can definitely impact a woman's life very negatively if she goes from being normal to being 'an egg on sticks,' as it's commonly referred to."
-- Cathy Olufs
Cathy Olufs: These body shape changes could be very disturbing. You know, I never really want to underplay that. I think it can definitely impact a woman's life very negatively if she goes from being normal to being "an egg on sticks," as it's commonly referred to.
I wish that there were some options that could help reverse that. I have some friends who have experienced really horrific body shape changes, and they've learned to cope with it. But still, it changes things for them, emotionally.
But it seems to be the current price of HIV treatment.
Cathy Olufs: For some treatments. I think things are looking up. I really feel confident about that. I think some of the medications that were more commonly associated with body shape changes are in less use now. I think there are better options out there now that show less indication of these changes -- although currently, all HIV medications are associated with some body shape changes, lipid changes and other side effects.
My next question -- I don't know if either of you have this on your lists, but I know a lot of women have it on their mind. And that is, vitamin supplementation, or the idea that if they just ate well and took a lot of vitamins, they wouldn't need to take other medications. What would you say, Dr. Cohen, to a woman who's thinking of not taking HIV treatment because of the threat of body shape changes, or because she's afraid of the side effects?
Dr. Mardge Cohen: It does happen. What I do say is -- patiently, the first many times. Then I have an impatient character, so it comes out after a while -- that it's a question of different modalities. It would be really, really inappropriate if you're at a certain stage of HIV illness to not use antiretroviral therapy to prevent bad infections and the development of AIDS. I would consider it an inappropriate response at this point in the disease.
I actually recommend vitamins in usual doses, and not in megadoses. I don't mind that people take whatever vitamins they want. I mean, it's their choice. But it's not going to really have a tremendous effect on preventing HIV disease progression, as antiretroviral therapy will. So I'm really concerned.
I have several patients who fit into the description we're discussing right now, and they have not been successful when they haven't been on antiretroviral therapy, when their T cells were very low.
People want things to go their way, and they want to feel that they'll give it one more try, that other alternative method. I think people should use alternative methods, but they should not use them at the expense of using antiretroviral therapy.
Cathy Olufs: I would point back to the availability of better treatments now than we had five to seven years ago. I never want to underestimate the importance of preserving immune function. When I think about my own illness status -- I've been diagnosed for 11 years, now, and never been sick. I really feel like the fact that I got into care early was important ... not necessarily that I was on treatment at a specific time. I think I got on treatment when I needed to. I went off treatment when I needed to. I went back on when I needed to. Just the fact that I got into care and was being monitored and being taken care of; I think that's really important.
I think there is a critical point. I'm not sure that we know exactly when it is yet, as far as when to initiate treatment. I really firmly believe that the immune system -- once it goes past a certain point -- it may not be able to come back fully. If you can avoid going over that cliff, I think that's crucial to long-term survival with this disease.
I guess the key message is to get into care. It doesn't mean that you absolutely need to be on treatment. The benefits of treatment are clear. When to start still needs to be evaluated. It's an individual choice.
Cathy, what do you say to somebody who says, "Well, I know a girl, and all she's taking is a vitamin and she's fine?"
"We all know that everyone experiences side effects differently. We can't base our decisions about treatment on someone else's experience. We need to evaluate each decision ourselves individually, and do what's right for us with all the information that we have available."
-- Cathy Olufs
Cathy Olufs: I hear that all the time. You know, we're all individuals, and everybody copes with the disease differently, and everyone has been infected with a different strain of HIV. It's an individual choice, and an individual decision about HIV treatment and how to pursue treatment. I think that's been a common thread in support groups for many years now. You know, so-and-so takes that medication and they have all these side effects, so I'm not going near that one. We all know that everyone experiences side effects differently. We can't base our decisions about treatment on someone else's experience. We need to evaluate each decision ourselves individually, and do what's right for us, with all the information that we have available.
Cathy, on your current regimen, are you having side effects that are noticeable every day?
Cathy Olufs: No. I take my meds once a day. I'm on a pretty common regimen. I have been on treatment regimens in the past, where I had pretty severe side effects. Having had this disease as long as I have, and knowing what I know about treatment, I'm also very, very adherent, because I don't want to burst this bubble. I'm doing well. I'm happy. I'm not having side effects. All I have to do is take my meds once a day, a few pills. So I'm grateful for that, and I don't take advantage of that.
Do you take any vitamins?
Cathy Olufs: I do take a multivitamin once a day. You know, I try to eat right. I'm just like everybody else. Can't quite get the five a day, with the vegetables. I try, though. I do the best I can and I think it's all we can expect from anybody.
We're almost coming to a close. Did you have anything else, Dr. Cohen, on your list that we didn't mention yet?
Dr. Mardge Cohen: I just would want to mention that -- it's not exactly something you would say to a woman who's sitting in front of you, which is how you're phrasing this question -- but the issue of violence and incarceration for many women with HIV is paramount. I would just want listeners or readers to have that in their consciousness as an issue that we really have to address if we're going to have the most women do the best they can with HIV. Because it rears its head often.
Some women find themselves going back and forth in our incarceration system. It would be really important to ensure that they have care wherever they are, and that they are easily connected to care and that they should as much as possible, get help so that that's not a continuing revolving door.
There are many women who experience issues related to violence that absolutely impact their ability to stick to a regimen, adhere to therapy. If we don't provide intensive therapeutic options for those women, we probably won't be able to address the obstacles that they are experiencing in order to take the best regimens.
So I wanted to make sure, in terms of the issues we've addressed for women, that that's included.
Meaning domestic violence?
Dr. Mardge Cohen: Absolutely. Yes.
The study that you are working on, the long-term natural study, the Women's Interagency HIV Study, showed that many women with HIV have been victims of violence. What was the percentage?
"Two out of three women that we follow, of the 3,000 HIV-infected women we follow, have had some history of violence at some point in their lives. Almost one out of three had experienced sexual violence as a child."
-- Dr. Mardge Cohen
Dr. Mardge Cohen: About 67 percent of the women. Two out of three women that we follow, of the 3,000 HIV-infected women we follow, have had some history of violence at some point in their lives. Almost one out of three had experienced sexual violence as a child. That sexual violence and childhood sexual abuse was associated with a sort of continuum of violence in their lives, and of behaviors that would definitely put them risk for HIV and put them at risk for depression and post-traumatic stress and other difficulties.
Then we found that women who should be on medications for HIV -- for whom it's indicated -- if they had a history of violence in their lives previously, they were less likely to be taking medications. They were more likely to have stopped, or never to have started. I think there's a sort of assault that occurs that takes a lot of effort to recover from, and we have to be very conscious about that as providers, and in support groups, etc.
Cathy Olufs: Agree, agree, agree.
I know you have personal experience working with women who are incarcerated. Is that the kind of thing that you're seeing, as well?
Cathy Olufs: Absolutely. The agency that I work for, The Center for Health Justice, we actually go inside the Los Angeles County jails, which is the largest jail system in the world, actually. There's a large population of women there. We go in and we teach them about HIV. We're lucky because a couple of our staff are living with HIV, so we're able to share from that perspective with the women.
But a lot of times, when the discussion comes to safer sex and being assertive and protecting yourself, frequently it comes up: "Well, how can I do that? I don't feel comfortable asking my partner to use a condom, because of these experiences in the past where there has been violence."
When we're thinking about prevention for women, we absolutely have to take the whole woman into context. I know that's been said in the past, and has become sort of a cliché. But we can't ever forget that. When we're thinking about women with HIV, we have to also think about their lives outside of their health. Their emotional health, their mental health, their wellness, their economic status -- all of this comes into play.
I once did an interview with a woman, and she said something that was very striking to me. She said, "You know, you really have to love yourself to take HIV treatment." Because every day, it's a positive action. You're saying, "I love myself. I want to live" and you take the pill, or the pills. Or twice a day, you have to say that. You have to not be conflicted. You can't be ambivalent. You have to be clear that you want to survive, that you deserve to survive, that you're worthy enough to survive ... and then take that pill. And I think that is kind of a dilemma for a lot of women, making that unambivalent assertion.
Dr. Mardge Cohen: Right. That's why support groups are so important, and having, both locally, nationally and internationally, groups that sort of allow women to say what it's like to have HIV and what they most want, so that women will feel empowered and assertive. And, as much as possible, increase their ability to take care of themselves.
Cathy Olufs: That was actually number two on my list -- get support, keep support, and stay connected. Or come back to support. Because I think a lot of women have gotten to a point in their disease where they are managing it. Maybe they are back at work. We sort of forget about how powerful it is for a newly diagnosed woman to be able to interact with a woman who has been living positively with the disease for some time. I encourage women who have maybe been out of the support group, the women's support network, for a while, to come back in and share what they have to offer -- you know, their positive attitude -- with women who are going through a rough time.
Well, thank you very much, Cathy. Thank you, Dr. Cohen.
Dr. Mardge Cohen: Thank you.
Cathy Olufs: Thanks a lot.
To e-mail Cathy Olufs, click here.
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