When a woman with HIV visits your office for the first time, do you evaluate her care differently than you would evaluate a man's care?
This depends upon whether or not the woman is a new patient with no prior HIV care or has been in care before. I will handle these as two separate scenarios:
- If the woman is new to HIV care or newly diagnosed, we will try to learn the context of her diagnosis -- in other words, was she diagnosed while in treatment, during prenatal care or in a sexually transmitted disease clinic?
- If she is substance using, I'll probe the issues around the role of a partner in her use, such as the provision of drugs, commercial sex work, sexual safety or domestic violence.
We will also ask: Does she have any children? Are they infected? If yes, are they on treatment? What's her role in treatment? Are her children living with her, or has she lost custody?
I'll take a sexual history, including gynecological history: past sexually transmitted diseases, current sexual practices, number of current sexual partners. Did she use any barrier or safe-sex method? Does she have any history of syphilis in her lifetime? When was her last menstrual period? Does she have pregnancy concerns? Does she have a history of HPV [human papilloma virus, the virus that causes genital warts], treated or untreated? Abnormal Pap? Has she ever had a colposcopy [examination of vaginal and cervical tissue lining]?
We'll also find out if the patient has support systems in place. Does she have a network of support? A network of risk-partners, shooting/smoking/snorting buddies? These kinds of things may influence risky behavior or adherence [how regularly the woman takes her medication].
- If the woman has been in HIV care before, but is new to my office, we'll generally ask most of the same questions, with a few differences. For instance, we'll try to learn her reasons for changing her care -- it may provide us with insight into her particular issues. We'll ask her what medications has she been on, and how they have affected her -- including a discussion of any impact they may have had upon menstrual function.
- We'll survey the biggest challenges for her to be in care. Is it difficult for her to remain in care? If she's on medications, is it difficult for her to take them? We'll listen for support issues, child care issues, lack-of-support issues and stigma concerns.
Do you see different side effects in women than in men?
We're seeing a few things:
- Menstrual irregularities, like amenorrhea (no menstrual periods), polymenorrhea (periods come too often) and oligomenorrhea (periods don't come often enough).
- Body composition changes: some women complain of breast enlargement or increased abdominal girth that is not very responsive to increased aerobic exercise.
- Sexual function changes: decreased sexual interest, delayed or difficult orgasm (all of these may be secondary to the psychological issues around transmission and safety).
What are some of the biggest issues facing women with HIV?
That's a tough question; it's hard to tease out the socioeconomic/cultural problems from the treatment problems. Stigma continues to be an issue, as does insufficient treatment for substance abuse. Funding for appropriate drug therapy is also a problem; there is a cap on Ryan White funding, and the formulas that determine funding differ from state to state and region to region.
The long-term impact of HIV infection upon the family -- upon the family networks and dynamic -- is also a major issue. The multiple roles that women play often make it hard for them to care for themselves, since as caregivers they are always caring for everyone else. Many women are also in serodiscordant relationships [relationships where one person is HIV positive and one is HIV negative] and want to get pregnant.
Then there are the socioeconomic issues: Women with HIV infection continue in general to be overwhelmingly poor, and are in racial and ethnic minorities with limited economic opportunities. There are wide variations in care for minorities and women, especially in treatment decisions and decisions to refer to clinical trials.
What other important issues should we pay attention to regarding women and HIV?
We continue to need a heavy emphasis on prevention, especially targeted to women, that is responsive to not only the context of their lives, but the contexts within which their risk behavior occurs.
We need HIV treatment education and advocacy for women, to help them understand some of the unique decisions and challenges ahead of them regarding HIV infection.
We need increased awareness among HIV-infected women about the risk of cervical and other cancers, and the need for increased vigilance by them and their health care providers.
We need more substance-abuse treatment slots, and improved delivery of substance-abuse treatment where women get "one-stop shopping" care. One-stop shopping means that a woman will be best served if she can get her substance-abuse treatment at the same place she receives her medical care. Better still if the place provides child care and also has social services on site. Then all of her needs are housed under one roof. This makes it easier to make sure she is routed correctly from one site to the next, and makes it more likely that she will be engaged because all that she needs is there. Plus she won't have to run from one end of town to the other -- buses, car fare, children being dragged all over town, she herself may not feel well, etc.
Also, if a woman goes into substance-abuse treatment, in some communities there are limited resources available to her if she has children. By and large, women will not go into substance-abuse treatment if that means that they will either lose their children or have to give up their children to an outside care provider. To understand the powerful disincentive this can be for women you need only go back to the situation in South Carolina, where women were drug tested without their knowledge in prenatal clinics and then arrested -- sometimes in labor and delivery -- and taken away.
For almost every racial and ethnic group of women -- perhaps with the exception of Native Americans and Asian Pacific Islanders -- more than half of HIV cases can be linked to substance abuse. Women need help with their substance abuse like anyone else does, but the issues for them are different. There is a gap between the substance-abuse treatment slots available and the need in the community.
A broader societal view dictates that we consider the economic futures of the women who are becoming infected. Until we offer greater incentives and opportunities for economic growth, the complex forces of racism, poverty and social alienation will continue to affect women and serve as fuel for the HIV epidemic, robbing these women of their very lives.