This Month in HIV: State-of-the-Art: Women and HIV/AIDS
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 to tell."
-- 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:
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'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.
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.
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This article was provided by TheBody.com. It is a part of the publication This Month in HIV.
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