Kathryn Anastos, M.D.: For women with HIV, the biggest issues are how to optimize their health and prevent disease progression, as is true for men. However, two thirds of women with HIV were infected by heterosexual contact, and many did not know they were at risk. Thus, they may be more likely than men to feel ashamed and want to maintain absolute confidentiality about their HIV infection. This makes them feel very alone and isolated. In addition, women are far more likely to be the primary or only source of support and care for minor children; for many women with HIV, maintaining their health until their children reach adulthood is their first concern.
I think it is extremely important that we determine through studies whether or not women respond to [HIV] treatment in the same ways as men. The information that women in one study developed AIDS at a lower viral load than men, and in fact at a viral load below the recommended level for treatment with HAART, makes it extremely important that we determine if we are treating women early enough. My impression, both from clinical experience and from unpublished data, is that following the current treatment guidelines will be appropriate for women as well as men. However, we should know that this is the case, and this we can learn only through further study.
Claire Borkert, M.D.: Empowerment of women worldwide, and helping to protect women from domestic violence -- perhaps empowering women to believe they have options when their safety is in question. Women need to feel more in control of their own bodies, so they can more effectively make their own decisions and choices. It is amazing to witness the strength and ingenuity of some of my female patients -- sometimes caring for others in very difficult and complicated situations, yet finding the courage and ability to do it, while at the same time feeling very disempowered in their relationship with the man in their life. We need to understand that empowering women doesn't mean disempowering men, and that truly we can all win when there is an equal playing field.
Victoria Cargill, M.D.: 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.
Mardge Cohen, M.D.: The biggest issue that women with HIV face is how many issues they face. The medical and psychosocial aftereffects of HIV and other associated infections and complications can be quite devastating. Managing their medication regimens, managing their jobs and families, worrying about transmission to others, recovering from difficulties during disclosure and managing other medical and gynecologic problems are all major issues for women with HIV.
Recently, we also found that a history of using drugs, being African American, and having a history of abuse was associated with not taking appropriate antiretroviral regimens, even when medically indicated. Special attention to treatment referrals for abuse and drug use as well as efforts to provide equitable access to medications is essential to overcome these obstacles.
Women with HIV who are pregnant or considering getting pregnant face an enormous array of issues in addition to coping with their own illness: deciding on the correct perinatal transmission-reduction regimen, considering C-section, dealing with issues of family disclosure, worrying over HIV transmission to their infant and over their ability to see their child grow up are all enormous issues. I continue to be moved by how strong and nurturing the women I care for are, especially considering how many obstacles they have faced and how many there are still to face. I am truly grateful for having had this opportunity for the past 17 years.
Ruth Greenblatt, M.D.: Each woman is unique. All are coping with a chronic disease that requires long-term treatment and medical follow-up. All are facing potential stigmatization. Many women in the U.S. with HIV are poor and must cope with limited resources, inadequate housing, past problems with drugs and, for some, a truly chaotic life. Many women living with HIV are mothers or have interest in becoming mothers. Recent advances in preventive therapies for pregnant women do not completely eliminate the anxiety attendant with HIV infection and risk of transmission. Many women also report menstrual irregularities and cervical, vulvar and anal epithelial dysplasias [abnormal developments of the cell lining, often a precursor of cancer] are common, and are an ongoing concern for many patients.
HIV care is lumped into general medical practice, which has many implications for the services we provide. Female patients tend to be especially in need of counseling and close follow-up for medication adherence, depression, domestic violence, substance dependency and social issues. Current reimbursement for clinical services covers only a brief clinic visit, which is inadequate for the needed standard of care. Our program is completely dependent on Ryan White Care funds to provide the needed service -- if this funding is cut, we will be in deep trouble.