Are We Not Worth It?

By Martha Cameron

As a woman living with HIV, who has experienced services from Ryan White Part D, I should join the throngs of individual women who are advocating for the continuation of Ryan White program in its totality, and the assurance of designated & quality access to treatment & care for women…

I am originally from sub- Saharan Africa, and had it not been for the existence and efforts of the Elizabeth Glaser Pediatric AIDS Foundation, I would not have been able to have my first HIV negative baby. It was still hard to access services and finds a good doctor to work with but this was understandable, considering the healthcare infrastructure in my country at the time.

As we relocated and attempted to resettle in the United States, I became pregnant again, it was easier to get services here than it was in Africa. What was shocking to find in the United States, however, was the amount of ignorance and stigma that I experienced when I was not at a dedicated HIV (Ryan White) provider.

The OBGYN that I initially saw not only felt that I had no business having babies as an HIV positive woman, but also strongly suggested tubal litigation (tying my tubes). Additionally when my baby was born, a nurse carefully put on a second set of gloves before she touched my baby.

Now being pregnant is already a stressful ordeal, but more so as woman living with HIV. There is an added level of stress that comes with taking extra care of yourself, as well as taking care of your baby. After the loss of my husband’s job, and therefore insurance soon after the bay was born, I was referred to a Part D provider. Part D service providers understood both my physical & mental state, and created a safe and comfortable environment for me; it was an environment where someone understood what you, as an HIV positive woman, and your family is going through. It also helps when someone understands why a hug and cuddle for you and your baby, and a listening ear is just as important as the antiretroviral therapy that you take. And no one even talks about the heterosexual man or husband for whom Part D has been a safe haven.

It has been well worth it, the greatest gift to a life that was otherwise hopeless; my marriage and kids are miracles. The research regarding the prevention of mother to child transmission (PMTCT), female condoms, and PrEP, work not only to ensure the sexual and reproductive health rights of women living with HIV, but also makes it possible for women living with HIV to experience the absolute joy of motherhood.

We are a family of an HIV negative man and HIV positive woman, an HIV negative daughter, and two HIV negative boys born to. We are a perfect Part D family.

The Women’s Collective is filled with many such stories. The Women’s Collective is a home away from home, and for many of the homeless women that we serve, the only home. Part D did not exist when the Founder of The Women’s Collective, Pat Nalls lost her little baby girl to AIDS. Part D exists because women like Pat Nalls & Elizabeth Glaser fought to ensure that other women would not have the same experience.

Nearly 9,000 HIV + women give birth in the United States every year. With this in mind, we have to ask how the consolidation of Ryan White Part C and Part D will help these women, and families such as mine; Will the consolidated Part C assure and maintain access to HIV care and treatment for women, infants, children and youth; will they receive the care and attention required to retain them in care by keeping them connected to their service providers. It’s the kind of care that has no barriers, bears no judgment and is greatly needed. Are we not worth receiving that type of care?

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