By Margot Kirkland-Isaac
I was truly saddened when I received the news that the President’s proposed 2015 budget sought to eliminate Ryan White Part D. It is unacceptable to me to think that, after all these years of the HIV epidemic in the U.S., women and children remain an afterthought when it comes to providing care and supportive services.
Far too many women do not seek or will fall out of care simply because programming does not provide them with a comprehensive, welcoming environment free of judgment, and one that addresses their specific needs.
If we do not have specified funds set aside for women-focused, culturally appropriate, family-centered programs, where is the guarantee that these programs will be provided? How will we monitor whether existing programs are actually meeting women’s complex needs? Without gender-sensitive programs staffed by knowledgeable providers, one can only surmise how many physicians, clinics and other well-meaning but ignorant professionals will try to dissuade women from having children and marginalize them into thinking they are not worthy of a full, quality life — a right that every citizen has — simply because if you were a “good” woman you would not be HIV positive.
I don’t want to see a return to the kind of damaging, ill-informed and ill-fitting care that I, and women like me, received more than 20 years ago.
When I was pregnant and diagnosed with HIV, in 1991, there were no services supporting women living with HIV as well as their families. The limited services that were out there were geared toward the gay white man, not black and brown women with children. I was admonished by providers and advised to abort my daughter, and even threatened with the removal of my other children. Meanwhile, women in similar positions to mine would take the food they got from the food pantry for themselves and give it to their babies, and would literally starve to death.
Twenty-three years later, we’re still fighting for the same thing: supportive services like childcare, transportation, housing and nutrition programs that are what make it possible for many women to stay healthy and be in care. Had there been programs that educated women and uplifted them, perhaps, just perhaps my daughter may have been one who survived. But the lack of knowledge, the shame and rejection, only taught me to run and hide. Sadly, this is still the rule not the exception when it comes to women and HIV.
Back then, when women were hospitalized, there was a program called Respite Care. Once a woman’s child went to Respite Care, when the woman was released from the hospital she would then oftentimes have to prove to the social workers and in some instances courts that she was healthy and “fit” to get her children back. So here is a woman, poor, in ill health, HIV positive, who now has to prove that she is a “fit” mother in order to regain custody of her children.
This was a terrible time here in D.C. If it wasn’t for other women living with HIV stepping up and sharing resources, i.e. food, transportation, clothing and in some cases shared housing, taking care of each other’s children, many more women would have perished.
Removing funding earmarked to address the specific needs of women and families living with HIV is one more insult, one more action sending the message that we are second-class citizens. When women come into care without Part D, they may not be linked to the proper care, to mental health services, to information about their right to pursue parenthood.
Woman-focused, culturally appropriate, family-centered programs that provide care, treatment and support services also provide women with a place to find their voices. These programs provide women with the necessary tools and education needed to become empowered to make informed decisions regarding their health care and the care of their children. Healthy women make healthy communities!
Margot Kirkland-Isaac is a Maryland-based PWN-USA member, a participant in the Common Threads program, and a past Part D program client.