Moving Forward the National Agenda for Women Living With HIV
October 8, 2014
I had the pleasure of attending Speak UP! A National Leadership Summit for Women Living with HIV, in Fort Walton Beach, Florida. The event brought together 200 women from all over the United States, the majority from southern tier states where services and treatment options are few and far between. Women hailed from such places as Tampa, Florida; Atlanta; Seattle; Philadelphia; Los Angeles; Detroit; Baton Rouge, Louisiana; Colorado; and, of course New York City was in the house.
I was overwhelmed with emotions as I entered the opening plenary session and looked around the room at the beautiful women in different shades of color, younger and older. You see, I have not attended a conference for women living with HIV in over 15 years. I was long overdue for the dose of validation and empowerment I received from other women sharing similar experiences. The spirit of the event was cloaked in sisterhood and solidarity.According to the polling in the room, more than 2,668 years of experience of living with HIV/AIDS was present at the conference. I was part of the story.
I must admit to feelings of frustration, that as a former co-chair of the NYC chapter of the Positive Women's Network -- USA (PWN-USA) we had not succeeded in sustaining the participation of positive women in NYC. I really don't know why PWN-USA didn't catch on in New York. Maybe it is because we have become complacent in living with HIV/AIDS with accessibility to a variety of services, or maybe those newly infected don't understand the history of women and HIV, or even better yet don't realize that HIV/AIDS is 100% preventable. While I am not sure of the correct answer, I realized that the fight for life is not over and we must continue to SPEAK UP.
I was forced to compare the differences between living with HIV in the North and South in 2014. I live in NYC, hailing from the village of Harlem. In my community alone, there are over six AIDS service organizations. Here, individuals have a choice, whereas in the South, access to medical care could be in the next town 100 miles away, and you might have no way to get there, or the shame of disclosing status might mean becoming homeless. Women unite in the South to save their lives just as women in the North did in the early 1990s. Today, with HIV looked at as a chronic manageable disease, women can choose whether or not to disclose and to become involved in advocacy or policy.
I received my diagnosis in the early '90s, when women's symptoms were just being identified. The general population was rampant with HIV stigma and discrimination. We advocated for access to Medicaid and ADAP in addition to changing policies for women and the growth of women's services. I remember attending funeral after funeral of friends and loved ones until I just stopped going because it became too much to bear. So the feelings of shame washed over me because I felt I had not done a good job of expressing to these newly infected women the importance of raising our voices and sharing our experiences in order to continue to create spaces where every woman has access to medical care and treatment, medication, housing, childcare and transportation.
I had an "A-ha!" moment while sitting amongst some of the most powerful Southern women in the room. They were fighting for their lives as I continue to do on a daily basis in NYC. I now understood that the Southern states were experiencing the same horror as NYC in the early days of the epidemic. Southern states now have the highest rates of new HIV diagnoses, the largest percentage of people living with the disease and the most people dying -- and many of them are women. I was overwhelmed with grief and shame that in 2014 we are still fighting for the right to access services and treatment. States in the South have the least expansive Medicaid programs and the strictest eligibility requirements to qualify for assistance, which prevents people living with HIV/AIDS from getting care. I promised myself right then and there, I would become involved once again with reviving the NYC chapter of PWN-USA. While at the summit I attended several workshops. One in particular stood out for me. It was grounded in policy and advocacy and titled "Advancing An Agenda for Women-Centered Care." My "sheroes" Linda Scruggs and Amy Rosenberg facilitated the workshop. The session focused on the importance of building a women-centered care agenda in the face of the Affordable Care Act and the consolidation of Ryan White Part D and Part C funding. The consolidation would expand the focus on women, infants, children and youth across all of the funded grantees and increase points of access for the population. In addition, the consolidation of the Part D program within the Part C program will result in increased efficiencies, reduced duplication of effort and reporting/administrative burden among currently cofunded grantees, and allow more funding to be available for direct patient care services. All of this is well and good but the reality is that Health Resources and Services Administration (HRSA) has not conducted a needs assessment to look at the evolving needs of women living with HIV/AIDS in over two decades, and concerns continue to mount as the Affordable Care Act continues to be rolled out nationally. Health insurance literacy is almost nonexistent when taking a closer look in regard to women's services such as extended gynecological visits, primary care and mental health services. Women experience trauma, depression and substance abuse differently than men and need specific services to meet their needs. Also, there is great concern about the health care needs of transwomen.
The Positive Women's Network -- USA seeks to move the agenda regarding women's need forward. This summit was a step in the process of mobilizing women nationally. I am proud to have been a part of the process.
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