We are encouraged by the reduction in death rates among people with AIDS, but concerned that the rate among women still lags that of men by 6 percent. Additionally, in our East Harlem neighborhood, the rate of HIV cases per 100,000 people has increased steadily from 1,171 in 1991, to 3,404 in 1996, and 3,956 in 1997. For comparison, the borough of Manhattan as a whole averaged 2,827 cases per 100,000 inhabitants in 1997. Our increased case load takes place in an environment of daily battles to access treatment for our clients, sustain their adherence to that treatment, and handle growing funding cuts under welfare reform. For the women we serve, keeping their families together despite these immense hurdles is a constant fight.
At Iris House, a new face of the epidemic has begun to disturb us. It is that of grandmothers, women between 45 and 62, who are increasingly being diagnosed with HIV/AIDS. As usual, we are playing catch up. The prevention efforts of the City of New York focus on a population targeted according to past AIDS incidence, mainly gay men, IV drug users and their partners. As a result, we may very well have missed the sexually active heterosexual men and women over 50 who may feel that they are not threatened by HIV.
One recent case we faced is particularly startling. A 58 year-old grandmother and main family caregiver came to us in search of information to help her newly HIV diagnosed son. A young married man, he and his wife were expecting the birth of a new child. In the event that the mother was also infected, the family's hope for a HIV negative grandchild was heightened by the new treatment protocols which could reduce the risks to the baby. A few months after coming to us, the grandmother not only discovered that she was HIV positive, but that her similarly aged sister had just been diagnosed HIV positive as well!
AIDS incidence among older women is a new nightmare for HIV care. Many of these women already battle other chronic illnesses such as diabetes, hypertension, obesity and the host of social and financial ills facing women on fixed incomes. Many of them have no idea of their risk until diagnosis. These grandmothers often assume the role of mother to their grandchildren who have often times already lost their parents to AIDS. As the long-standing pillars of support for our communities, we cannot afford to also lose them to this epidemic.
So 1998 presents new challenges: ensuring that all women have access to the ever changing number of AIDS treatments, supporting them to maintain their adherence, assisting them with unexpected side effects and challenging their hopes. Our response to these challenges must maintain women's integrity and the dignity they deserve.
Marie St. Cyr is the Executive Director of Iris House, a residence and service provider for women living with HIV in Harlem.