Welcome to This Month in HIV. Dr. Cohen, what do you think is the most important thing that women with HIV should know? If you were going to make a top 10 list, what would be the first thing on it?
Dr. Mardge Cohen: It's very hard to figure out a list of what is useful to get across to a woman during her first visit to a health care provider. I think what women are most worried about is: How long am I going to live? Am I going to make it?
But I try to get to that concern by going through a lot of other things. I think a very important thing to explain to women is how women and men do pretty well with HIV, and it's important to be very encouraging.
I also try to get to the issue of support. Are people supporting the patient? Who has she told? Who does she feel will be there for her? Who can advocate for her in the many difficult situations she might find herself in, in terms of medical issues or other issues. I think it's important to encourage people, if possible, to disclose to someone and to seek as much support as they can.
[Click here for a list of tips for HIV-positive women, compiled by Mardge Cohen and Cathy Olufs.]
In general, who do people with HIV disclose to?
Dr. Mardge Cohen: Many of the women that I see disclose to a friend. Some disclose to a sister. The mother issue is sort of mixed. Some do, and some don't. The issue of partners who they know might be infected, and they've communicated with, is sort of out there.
But the biggest difficulty, I think, is thinking about disclosing to new partners and also disclosing to children. In my experience, there's a certain age and a certain time in the family when that happens. It's 2007, and many, many women disclose to many people. I definitely still have patients who disclose to no one but their partner, but that's very rare. For the most part, I think women are disclosing to a group around them that will provide support for them.
Do you think there's a mind/body kind of angle to this, in that if you don't disclose to anybody it adds unnecessarily to your stress level?
Dr. Mardge Cohen: I think there is something to that. You know, if you don't have to disclose your illness, you don't have to think about it. You don't have to be reminded. But I find that most people get a lot of help and support if others know.
Cathy, what's your take on this?
"In support groups, they have discussions about how
to disclose, when
to disclose, who
do you need
to tell, who do you have
-- Cathy Olufs
Cathy Olufs: You know what? I completely agree. There's just one thing I would add. Before a woman can get to the point where she's comfortable and confident in disclosing, it's important that she have a good understanding of the basics of the disease. Because what usually happens, at least in my experience, being a positive woman and having had to disclose to many people over the 10 years, now, that I've been living with the virus, is that a lot of times you have to educate people about the disease.
I remember the first time I told my mom. Immediately, she thought, "Oh my God. My daughter's going to die!" So I had to explain, "Well, not necessarily. The medication's out there." This was 10 years ago.
It's important for women to be confident about what they are going to disclose, because a lot of times it's very easy to make mistakes during disclosure, which can then push a woman back into the closet about her status, depending on how whatever she's disclosed has been received by the other parties and what their reaction has been.
Counseling is helpful. A lot of times, in support groups, they have discussions about how to disclose, when to disclose, who do you need to tell, who do you have to tell. It's really helpful getting peer feedback, I think.
What if you're not in a big city? How would you find one of these groups?
Cathy Olufs: The biggest piece of advice I can give to any woman out there, if she doesn't already know how to use a computer and the Internet, is to learn. There is so much information and online support available for people that live in rural settings. Getting online, you can find places that you can send an e-mail to, and they'll send you their newsletter. There are a lot of ways to stay connected if you don't live in a big city that has established support organizations for people with HIV.
I'm sort of surprised that disclosure is the number one thing, and not medical concerns.
Dr. Mardge Cohen: Prognosis always used to be on people's minds, and it's still on people's minds. In terms of what I find is an important thing to get to in order to establish a partnership with a patient -- which is part of what I think we're talking about here -- you have to have a sense of whether this woman is in it alone, or who else is there. I ask about this to get a sense of the emotional vulnerabilities that are there that HIV is on top of and/or that HIV may be causing.
So I totally agree that the way to establish [a support network] is for the woman to have the best understanding she can of the disease and all the other things on my list. I could start going through my list. It includes:
Understanding how HIV affects people and what the usual prognosis is
How HAART [highly active antiretroviral therapy] is extremely effective right now
How well most people are doing who are being diagnosed now and going on therapy, if it's indicated
Disclosure is related to prognosis for me. People are, I think, scared and not knowledgeable, and want to learn more. I think they want to be able to not just know about HIV for themselves, but to share it if possible and if encouraged and supported to do that with others, so that they aren't going through this major life issue alone.
What was number two on your list?
Dr. Mardge Cohen: Understanding HIV and knowing how it affects many parts of your body is very important. My sense of one of the best ways to do HIV care is an integrated model, where a woman feels that her provider or the setting in which she's receiving her care as much as possible attends to all of her medical and psychosocial problems, or at least that they can be named, articulated and then addressed in some fashion.
I think the shorthand for that is -- know your numbers. There are certain things that people with HIV should really know and understand the meaning of.
Meaning, know your CD4 count.
Dr. Mardge Cohen: Know your CD4 count. Know your viral load. Know what cutoffs mean. Not so that you're dreading a cutoff, but that you understand a context of continuum and you understand what you could best do at each of those points to live well, very well. I mean, that's the point, I think. ["Cutoffs" are used in phenotypic resistance tests to determine whether a particular HIV medicine will be active against HIV (no resistance to the drug), or whether it may have some moderate activity against HIV (low-level resistance).]
Cathy, isn't that what you meant when you said, "Know your HIV"?
Cathy Olufs: Yes. Well, my number one was actually -- it's sort of interrelated and it's really hard to put this list in kind of a linear one, two, three. Because I think women move through their own personal priorities about what's important at different times in their life with HIV. You know, it shifts.
For me, as I stated earlier, it's important to have a really good knowledge of the basics, which includes:
Myself and other advocates work with people who still cannot articulate the names of the meds they are on -- not even the brand name, the drug name -- either one. And that's troubling. I think it's very important, for people to at least be able to state to a physician or a medical provider what medications they're taking.
So, for my list, having a really good understanding of the basics is important, but it's not an easy process to get there.
Do you think a lot of women avoid knowing their illness because they feel it's depressing to learn too much about it?
Cathy Olufs: No. You know, I can only relate this to my own experience, personally. But not having a medical background when I became HIV positive, not really understanding much about the immune system, having not had high school biology or any of that, I was shocked. I felt like, "Wow, this is too much information. I'll never be able to understand it. The words are too big."
It took a lot of time, and it took a lot of effort and motivation on my part and on the part of other people that were around me in my life, to help me get to the point where I wanted to understand this information and I wasn't afraid to understand it.
A lot of people are intimidated when they first get diagnosed, because, all of a sudden, all these words that are often very foreign are being thrown at you. You're making these decisions and you really don't understand why.
The doctor says, "Well, I can put you on this med or that med. Which one do you want to go on?"
A lot of times, you feel helpless. That's why I would really encourage women to use whatever resources are at their disposal, to become educated. Like I said: It's not a quick, overnight process. As long as there's not an expectation for it to be an overnight process, I think women can be very successful in understanding this information.
Do you think there's something that they should be reading? Is there a book that you read that you thought was very interesting? Or a Web site that you went to that really helped you?
Cathy Olufs: There are some great Web sites out there. Not to toot your horn, necessarily, Bonnie, but The Body is a terrific resource for people with HIV. So is The Well Project for women. It's Dawn Averitt's Web site. Dawn Averitt is a longtime AIDS advocate, a woman living with HIV.
There are several women's organizations that have some Web sites. I know WORLD, out in Oakland, which I'm associated with, has a Web site that has information available on it. So I think there are lots of resources where people can access and begin to get some of this information.
There used to be some great booklets out about women and treatment. ACRIA [AIDS Community Research Initiative of America] has a Treatment Issues for Women booklet.
There's plenty of stuff available. So let's go down our lists more quickly, because we're going to be running out of time soon. Dr. Cohen, what else do you have on your list?
"It's important to understand that you're not just a woman with HIV; you're a woman who has all these other parts to her body, and all these other possibilities for deseases. So making sure you and your provider can go through screening for those other diseases is very important."
-- Dr. Mardge Cohen
Dr. Mardge Cohen: Understanding what one needs to do to keep generally healthy in the context of HIV is important.
People should be tested for hepatitis A, B and C. If they are not currently immune, they should get immunized against hepatitis A and hepatitis B.
They should get a pneumococcal vaccine -- which many people should get, not just HIV-infected people but people who smoke, people who are a little older, or have some other chronic diseases -- in order to prevent pneumococcal pneumonia. You only have to get that shot, say, every five to 10 years, but a flu vaccine, people should get every year.
These are just things that are part of providing the best care. They should be available, and hopefully are, in most settings. But sometimes things get hectic, and people forget. If a woman knows that there is some essential regular monitoring that should be done, she can be on top of it herself.
This includes getting a Pap smear: a little bit more often in the beginning, but then [at standard intervals], as is the usual guidelines for any woman. HIV does absolutely impact a woman's gynecological state, such that if there is human papillomavirus, HPV, the HIV virus acts sort of synergistically and creates abnormalities that we call dysplasia, that are abnormal Pap smears, which most often don't lead to cancer, but can. We certainly err on the side of detecting these abnormalities through Pap smears. So abnormal Pap smears should be followed up very well with a colposcopy. That sort of gynecological care should be very available.
Now, the good news is that with antiretroviral therapy, we're seeing a real reduction in the progression of these abnormalities in the cervix in women with HIV. So with the more effective treatments of women with HIV, gynecological problems are probably going to be less of a problem for women. But over time, still, many women with HIV will have HPV. It's really important to take care of those things.
Also, it's important to understand that you're not just a woman with HIV; you're a woman who has all these other parts to her body, and all these other possibilities for diseases. So making sure you and your provider can go through screening for those other diseases is very important. We know hepatitis C is an important virus that is prevalent in women with HIV, especially if there's been use of injection drugs in the past. Hepatitis C is a very important disease that has to be treated. So all the other diseases that impact women who have HIV have to be identified and well treated.
Another important disease is depression, which is shown to decrease both the quality of life and the quantity of life. You know, the decreased survival in women with HIV should be identified and addressed. So I think that both from a general health standpoint to a specific health standpoint, those things are very important.
A whole other area that's critical for women is where they are at in terms of reproduction. Do they want to prevent pregnancies? Or do they want to have pregnancies? Then on the other part of the continuum, how are they doing with menopause? Those are all areas that, in some situations, we know a lot about, and it would be really important to share that information as much as possible and for women to make sure they have whatever resources are available, to make good decisions about what they want to do. That's a really important area that I think most women who are making choices about having children or not having children really want a lot of information about.
Cathy, I wondered if you would talk to the first part of what Dr. Cohen said, which is some of the tests that women with HIV should be getting on a regular basis, and some of the vaccines that they should be getting? Did you have anything else on your list?
Cathy Olufs: Well, we know that the HPV vaccine is available, although I would imagine that most women who are already HIV infected have probably been exposed to HPV at some point in their life, so we're not really sure how effective that vaccine would be. However, there are increasing reports of women coming up with anal cancers associated with HPV infections. As women, we grow up learning to wipe front to back. If a woman has HPV it can very easily be transmitted to the anal area. So it's important for women to be screened for anal cancers, as well.
So they should get an anal Pap smear?
Cathy Olufs: Exactly. A lot of women would probably be embarrassed to have their provider perform an anal Pap, but I think it's really, really important. Because I know there were some reports at CROI this year, the retrovirus conference, showing that cancers -- non-HIV-associated cancers -- are actually increasing in people with HIV, including anal cancers. So I think it's important for women to be screened for that, whether or not they have ever had anal sex. That's not necessarily an issue.
Where would one find an HIV-experienced gynecological care clinic?
Cathy Olufs: You can ask around in your community. I think it's important to interview the physician who is going to be treating you, to ask what their experience is. Are they affiliated with any one of the HIV medical associations? [The two major medical associations for HIV specialists are the American Academy of HIV Medicine and the HIV Medicine Association.] Do they keep up on the latest information? Do they attend the conferences?
Do HIV specialists refer patients to gynecologists experienced with HIV?
Cathy Olufs: Yes. That's been my experience. Whenever I've needed gynecological care, my treating physician usually will refer me to someone who they are familiar with, that's also familiar with treating HIV. Because it's crucial.
Dr. Mardge Cohen: This is an important area for this patient-doctor partnership, because if a woman is not clear that gynecological issues are important in women with HIV and the HIV providers are going through all their stuff and not attending to that, then they're going to miss a very important area. If the patient is not going to a gynecologist in addition to the HIV provider, then she won't have an opportunity to get a Pap smear and discuss these issues, ensure that these issues are addressed.
Some groups have thought about a card for women with HIV, which are the things that they have to sort of check off on the list, to make sure they're getting the best care. I think getting a Pap smear that someone looks at, that someone understands in the context of HIV, is a good starting point for that card.
A very important point. Is it in the guidelines now, particular care for women with HIV?
Dr. Mardge Cohen: Yes. It's very important. Someone could say, "Oh, make sure you get one." I'm not sure every HIV physician is doing gynecological exams. Some are, and that's good. Some will refer, and then have someone else do it. But it is an issue for women, that women have to name as an issue, that should be addressed -- just as contraception, just as having children, etc.
Dr. Cohen, I have one more question. You have mentioned hepatitis C. I think there are a lot of misconceptions about this. A lot of women think that they have already been tested for it. They think, "Well, I got tested for HIV and other STDs, so I must have gotten tested for that." Or they already got their initial care for HIV, so they think, "Well, they probably looked if I had that, too."
Dr. Mardge Cohen: Again, this is a routine, expected guideline, that people with HIV should have their status, in terms of hepatitis A, B, and C checked, to know whether they are immune to A and B, or have been infected at some point with hepatitis C, and would require further investigations. A lot of people clear hepatitis C. For a lot of people, it's not a problem.
Increasingly, it's a very important disease entity for women and men with HIV to understand, to take seriously. People are living longer with HIV; therefore, we don't want them to die from other causes. We want them to get the best treatment for other diseases that they have, now that their HIV is under significant control.
I think, between patients going to different providers and a poor health care information system, a lack of a national health care program, health care is not as good as it should be. I think people understanding and having a list in their heads of what the diseases are that they have to make sure they have been evaluated for is the best way to ensure this.
So you would recommend that if a woman doesn't know if she's been tested ...
Dr. Mardge Cohen: She should find out, right. I definitely would suggest that she should know.
You go with a checklist.
"We need patients and doctors partnering. Sometimes the best way to do that is for patients to remind doctors, and sometimes it's for doctors to ensure that they have all this available information so that they are reminded to do the right thing all the time."
-- Dr. Mardge Cohen
Dr. Mardge Cohen: I think that's the best way. In general, patients in whatever disease they have feel at a disadvantage because they don't know everything and often physicians and patients don't partner to deal with a disease. That's what we most need in order to make HIV and every other medical problem get the best resolutions. We need patients and doctors partnering. Sometimes the best way to do that is for patients to remind doctors, and sometimes it's for doctors to ensure that they have all this available information so that they are reminded to do the right thing all the time. I think both working together is really the best way to make that happen.
Cathy, do you remind your doctor to do things?
Cathy Olufs: Actually, I'm very lucky. I have a great physician. She's one of the top female HIV physicians in the country. So I feel blessed, in that quite often we have some very interesting discussions about treatment, but I haven't ever found myself needing to remind her. It's usually quite the opposite. She'll remind me, "It's time for your Pap," or something like that. But we have a great relationship. I think that's crucial, as well -- that you have open lines of communication with your physician. If you feel at all uncomfortable with the physician that you're seeing, it is within your right to request to be seen by a different doctor.
Were you always so brave?
Cathy Olufs: No. Absolutely not. It came with time and listening to other women and taking the advice of other people to stand up for myself and stand up for my health.
How did you find your doctor?
Cathy Olufs: Well, I ended up at the clinic where I'm at right now through the form of health insurance that I have. But I actually saw my doctor's name in print long before that, in relation to HIV research studies for women.
So you picked a researcher who was also treating?
Cathy Olufs: Yes. I got lucky. When I went to the clinic, I requested to see her and she was available. So I'm pleased about that. I've never really had a bad experience with a physician, but I've had some uncomfortable experiences with some physicians over the years. But never really a bad experience. I think most physicians that are in this work truly, truly care about what they're doing. There are many different opportunities that they can be involved with, as far as medical care. If they have chosen to be involved with HIV, I feel like there's an extra special commitment there.
Dr. Cohen, in your previous answer, you mentioned women who want to have a baby. Could you go into that a little bit? What if a woman is thinking about having a baby? What kinds of things should she take into consideration?
Dr. Mardge Cohen: It should be brought to the table, and a woman should feel empowered to have that discussion. We want to ensure that she goes about that in the healthiest way for her and everybody else involved.
That would require a very sympathetic and knowledgeable obstetrics team that is committed to using medications and treating her throughout the entire pregnancy, and monitoring well, and following at labor and delivery and postpartum.
The idea that I was referring to is that this is a serious desire on many women's parts, and it should be met. Women who know they are infected with HIV are becoming pregnant and are doing well during their pregnancy. It doesn't increase disease progression of HIV. It's pretty much all good news for women who are doing well on antiretrovirals, or who are early in the course of illness, to proceed appropriately to have a child.
"Women who know they are infected with HIV are becoming pregnant and are doing well during their pregnancy. It doesn't increase disease progression of HIV. It's pretty much all good news for women who are doing well on antiretrovirals, or who are early in the course of illness, to proceed appropriately to have a child."
-- Dr. Mardge Cohen
We discourage the use of efavirenz or Sustiva [Stocrin] in women who are thinking about getting pregnant. We would recommend different medications. But there is a whole host [of options], and there are good choices and great results, in our country, for women who are HIV infected and know it, who desire to have a child.
It's a really important issue to state: Women with HIV can make these reproductive choices. I say this because of the history of HIV care in women. Women were more often discriminated against. If they wanted to have children, they weren't taken seriously. It wasn't thought to be appropriate. That's really changed today, and it should continue to change, so that women can have the right to the reproductive choices that they want.
Would you say this is true for women at any CD4 count? Or is there some cutoff point?
Dr. Mardge Cohen: The woman makes the decision, basically. I've seen women at every CD4 count have children. Sometimes there weren't exact choices being made. Things just sort of happened. But right now, we have the potential to have women improve their CD4 count. So therefore, there can be a discussion of, "Well, maybe it would be better for your situation, for you and for what you want to do in the future, to see how you respond to HAART therapy, to antiretroviral therapy. When we see you're doing well, that will be a better opportunity to think about getting pregnant."
But to make sure that it's a discussable point, and that you feel comfortable talking about it with the provider, and the provider feels comfortable talking about it with you. Otherwise, you're going to get mixed messages.
Cathy Olufs: I agree. You hit on a really important point about making sure that you discuss your desire to get pregnant with your physician, hopefully prior to actually becoming pregnant. There are a lot of things that women can do to bolster their health prior to actually achieving a pregnancy, which will help support a healthy pregnancy and a healthy outcome.
So whenever possible let your physician know that you're considering this. There are vitamins that you can take and we know that it's very important for a woman to have a low viral load going into a pregnancy, as well as a low viral load during pregnancy and delivery. So, again, whenever possible, it's great to plan a pregnancy, and it's such fabulous news for women living with HIV, at least in the developed world, that we can have that option now and be relatively safe.
Does a woman have to be on HIV treatment?
Dr. Mardge Cohen: Yes. When she's pregnant?
Dr. Mardge Cohen: We recommend it, actually, regardless of her CD4 count, in order to reduce transmission of the virus. It's, of course, always the woman's choice, what she wants to do. The recommendation is not only to reduce the viral load and increase CD4, but to reduce the risk of HIV transmission during pregnancy. Being on HIV medications is believed to be quite important.
Pregnancy is also a time to discuss other issues that are important, actually, during many parts of a woman's life. Cigarette smoking, alcohol, drug use, violence issues are also important to consider for a healthier time with HIV, as well as, for sure, to maintain the best pregnancy.
In terms of breastfeeding, I know there was recent news from the big HIV conference in Los Angeles about breastfeeding in the developing world. Could you talk to what this means for women in the U.S.A.?
Dr. Mardge Cohen: I think the recommendation is going to stay the same in our country: for women with HIV to not breastfeed. There is an increase in HIV infection with each month of breastfeeding. I think what we saw in the study that was done in South Africa by really wonderful people is that other issues of mortality in the developing world do weigh in. Breastfeeding itself for the first six months solely -- solely breastfeeding -- was the most effective way, compared to supplementation or mixed feeding [to reduce infant mortality]. That's not the situation we have in our country. I think I'm not convinced that our guidelines are going to change soon.
Whatever was recommended and is being recommended now ... nothing should change as a result of that conference?
Cathy Olufs: I agree that there were clear indications, that there are special issues in some of the countries in the studies ... poor sanitation, problems with unclean water to mix the formula. We don't have those issues here. I think there are other options for women in the U.S. who may want to be able to provide breast milk to their infant. There are programs where women can share breast milk. So maybe if you have the resources, you could obtain breast milk through one of those sources, rather than putting your child at risk if you're HIV positive.
What if you don't want to get pregnant? What are the contraceptives that you can use, if you're on treatment?
Dr. Mardge Cohen: The information on the difficulties related to birth control with hormonal contraception in women with HIV is hard to interpret, in my opinion. So that really, it's whatever regimen the woman and her provider finds to be the best for her. ... We have women on things that they've chosen -- whether that's Depo-Provera, or whether that's other approaches. The thing to, of course, remember is that anything that is contraception, that prevents a woman from getting pregnant, if not a condom, will not, of course, prevent another infection with HIV. Though the data's a little unclear on that, as well, I think reinfection is not a good thing.
Do you think HIV medications lower the effectiveness of hormonal birth control pills?
Cathy Olufs: I think there's enough data out there to know that a woman who is taking hormonal contraceptives definitely needs to have her drug levels monitored, to make sure that she's not either losing effectiveness of either the contraceptive itself or the protease inhibitor, or the HIV medication that she happens to be on. There's a lot of data that shows that either the meds impacted the contraceptive, or the contraceptive impacts the meds. I think if a woman really does not want to take any risk of becoming pregnant that she might consider using a second barrier method of contraception ... just in case.
I know that there's a push for further studies to actually find out what the impact is of some of the newer medications, and even the ones that we have, on hormonal contraceptives. This is one of the many, many still-unanswered questions in relation to HIV treatment for women. We get little bits and pieces each year. Maybe a small study comes out with a little more information. I think we still don't know everything we need to know.
Are there any gender differences, in terms of responsiveness to treatment, that you've noticed? I know there have not been that many studies yet. But what do we know so far. Anything? Dr. Cohen?
Dr. Mardge Cohen: Well, there are some studies that have shown that there's a greater viral rebound in women when they stop certain medications. There are some studies that show that, just starting with women versus men, that women's viral load at any particular CD4 count is lower than a man's viral load at that same CD4 count. But much of what we know along those lines has not produced a clinical significance at this point.
We think that the reasons for these changes -- I'll get to side effects in a second -- but we think the reasons for this might be hormonal, might be fat distribution. There are lots of really important areas to continue to investigate.
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.
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