Thursday, February 12, 2015


(This post is derived in its entirety from a Public Comment made to the President's Advisory Council on HIV/AIDS [PACHA] by Vanessa Johnson, JD on behalf of the Positive Women's Network-USA, available also HERE.)


Comments on Proposed Consolidation of Ryan White Part D into Ryan White Part C
Provided to the Presidential Advisory Council on HIV/AIDS (PACHA)
February 12, 2015

Good afternoon. My name is Vanessa Johnson, and I stand before you on behalf of Positive Women’s Network – USA, a national membership body of over 3000 women living with HIV, inclusive of transgender women, throughout the U.S. We also have seven formally affiliated regional chapters which operate at the state and local level. I am here to express our grave concern about the proposed consolidation of Ryan White Part D into Part C in the President’s Fiscal Year 2016 proposed budget. We strongly oppose this consolidation. It is important to note that last year Congress rejected this very same proposed consolidation.
Part D of the Ryan White Program provides family-centered primary and specialty medical care and supportive services to underinsured women, infants, children and youth living with HIV. These are women and young people who are likely to be juggling caregiving responsibilities and challenges accessing care. While not all women living with HIV are eligible to receive care through Part D, more than 90,000 women, young people and family members access Part D services each year. These programs often function as crucial entry points into care for underinsured women – and youth, the fastest growing population living with HIV in the U.S.
The consolidation of Ryan White Part D into Part C has the potential to roll back progress toward all goals of the National HIV/AIDS Strategy: to reduce HIV-related health disparities, improve retention in care and health outcomes for people with HIV, and reduce new HIV cases.
ACA implementation is currently underway; the Ryan White Program should remain stable while stakeholders take the time needed to assess how these and other services may most effectively complement the ACA in meeting the care needs of people with HIV, and the goals of the National HIV/AIDS Strategy. Consolidating Ryan White Part D into Part C has the potential to radically destabilize existing comprehensive care models created by Part D programs.
The Ryan White Program is successful at retaining people with HIV in care. It should be maintained intact, not eliminated, as the Affordable Care Act (ACA) changes the landscape of care. Only 41% of women living with HIV nationally are retained in care, according to CDC’s HIV care continuum. However, the Ryan White Program effectively retains 77% of its female clients in care, according to the most recent available report by the Health Resources and Services Administration (HRSA). Ryan White Part D has also helped drastically reduce rates of vertical HIV transmission through proactive outreach and coordinated care for pregnant women living with HIV and their families. Eliminating Part D could negatively impact both outcomes by expanding expand gaps in the HIV care continuum, at a time when we have made real progress. Further, sexual and reproductive health services for women living with HIV of all ages require specialty expertise, and it is not clear how the scope and quality of these services may vary throughout the other parts of the Ryan White program.
Programs delivering services that are essential for many women and their families to engage in care are at risk of being cut under the proposed elimination of Part D. To read a quote from Morenike Giwa Onaiwu, a mother and advocate from Houston, Texas:
The course of my life changed forever when my family became affected by HIV in 2007. .... Ryan White Part D services … have been a lifeline for our family.
We have benefited from Part D services like medical case management, linkage to mental health treatment, transportation assistance, and educational programs … with staff that provides all services in an inclusive, respectful, and culturally competent way. With Ryan White Part D, the services focus on how to help the whole family, recognizing that it’s not just about the person who is living with HIV. It’s truly a family-centered medical home model.
… It’s not just about access to medicine, although that’s so important. It’s also about connecting with other families affected by HIV. For my children, who are growing up in an HIV affected family, it’s about meeting other affected and/or positive youth and supporting each other. It’s about learning to hold your head up high, to refuse to be ashamed of this disease and the stigma it carries, to learn to be an advocate for yourself and your family.
If Part D becomes subsumed under Part C, there is a risk that community-based providers like the one described above, who have developed years of culturally relevant expertise and community-level approaches that are key to reducing health disparities, may not be funded to provide these services. Although some Part D programs are dually funded by Ryan White Part C, there may be some Part D grantees that are not eligible to apply for Part C funding.
Ryan White Part D is a vital source of funding for services focused on women and families. However, it is also necessary that women's unique needs be addressed across all parts of the Ryan White Program, and across the full spectrum of HIV care and services in the U.S.
We request that the PACHA release a statement that all parts of the Ryan White program should remain intact as Affordable Care Act implementation is underway, and specifically opposing the proposed consolidation of Ryan White Part D into Part C. Administrative concerns should not be solved by cutting essential programs for women living with HIV.


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