Groundbreaking Report Identifies Unique Needs of Women Living with HIV, Challenges to Engagement in Care

**FOR IMMEDIATE RELEASE**

Contact: Jennie Smith-Camejo, jsmithcamejo@pwn-usa.org, 347-553-5174

 March 10, 2016 – “What would improve your ability to stay in care?” That is the fundamental question 14 researchers, all women living with HIV, asked 180 participants from seven different geographic areas in a community-based participatory research project spearheaded by Positive Women’s Network – USA (PWN-USA), a national membership body of women with HIV. Participants were then asked about which specific services they needed, which services they currently had access to, and how well those services were meeting their needs. Among the key findings:

  • Women living with HIV are living in extreme poverty. 89.7% of the women surveyed were below 138% of the Federal Poverty Level (FPL), with 73.8% below 100% FPL.
  • Poverty affected more than just their ability to pay for drugs and medical services. 50% of respondents who had missed a medical appointment in the past year cited transportation as the reason.
  • 17% of respondents had been diagnosed with post-traumatic stress disorder (PTSD) and9% with depression. Cost, lack of coverage, lack of available services or waitlists for services presented significant barriers for many women in accessing these services.
  • While most respondents had been screened for cervical cancer according to current guidelines, only 40% of women of reproductive age had been asked if they needed birth control; just 39.4% had been asked if they wanted to get pregnant. And shockingly, 38.1% of participants had not been told by a provider that achieving viral suppression would dramatically reduce risk of transmission.

The Ryan White CARE Act, first passed by Congress in 1990, has been a life-saving safety net program for hundreds of thousands of women living with HIV, serving as a payer of last resort for medical care and the supportive services that so many people living with HIV—particularly women, who are so often heads of household and responsible for multiple generations living under one roof—need in order to stay engaged in care. The Ryan White Program is due to be reauthorized and remains desperately needed, particularly in states that have refused to expand Medicaid.

The Ryan White Program is working well, but the needs of people with HIV have changed and some women are still simply not able to access the services they need to stay in continuous care. “One thing that struck me is how many women need counseling and mental health assistance, but don’t know how to go about getting it,” said Pat Kelly of Orangeburg, South Carolina, one of the community-based researchers on the project.

For others, stigma or inadequate knowledge among medical providers means women living with HIV are not receiving comprehensive sexual and reproductive care that affirms their rights and desires to have families post-diagnosis. “I believe if more providers discussed the option of treatment as prevention with their patients, especially female patients, it would open up more opportunities for the patients to consider starting a family safely. For a lot of women living with HIV in their childbearing years, having a family is important. Many of them still think it’s not possible to do safely. But if this conversation starts happening with their providers, it will give them a choice and hope. All women should have that choice,” explained Evany Turk, research team member from Chicago, IL.

PWN-USA will be presenting more detailed information about these and other important findings of the project today on a webinar, “Securing the Future of Women-Centered Care,” at 1 PM EST/10 AM PST, and will host a Twitter Chat with special guests Greater Than AIDS and The Well Project at 3 PM EST to continue the conversation using the hashtags #NWGHAAD and #PWNspeaks.

The full report is available here.

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President’s Budget Affirms Commitment to HIV but Raises Concerns for Women and Youth

FEBRUARY 12, 2016: President Obama released the final budget of his presidency this week. While several components of his proposed budget offer good news for women living with and vulnerable to HIV, Positive Women’s Network – USA (PWN-USA) remains concerned by the renewed proposal to eliminate Part D of the Ryan White HIV/AIDS Program, the only federal funding stream that prioritizes services for women, youth and families living with and affected by HIV.

President Obama’s budget maintains level funding of the Housing Opportunities for Persons with AIDS (HOPWA) program at $335 million. This program is critical for many low-income, unstably housed people living with HIV, and we are relieved that, under the President’s budget, it would remain in place and funded. Legislative language changes also modernize the program to ensure better distribution of funding to geographic areas where it is currently most needed.

PWN-USA commends President Obama for eliminating funding for abstinence only until marriage (AOTM) sex education, a policy that has proven completely ineffective and unrealistic. Studies show that states teaching AOTM have higher rates of teen pregnancy and sexually transmitted infections, a waste of taxpayer dollars which could be used to fund comprehensive and non-stigmatizing sex education that affirms people of all gender identities and sexual orientations.

Further, we applaud the addition of $9 million through a Special Projects of National Significance (SPNS) initiative in dedicated funding for Hepatitis C testing and treatment through the Ryan White Program. About a quarter of people living with HIV also have HCV; this new initiative will assist in identifying those individuals and making sure they have access to medications that can cure HCV.

We are pleased by the President’s ongoing commitment to the Ryan White Program, a crucial safety net for women living with HIV, a majority of whom are low-income–particularly in states which have refused to expand Medicaid.

As in years past, our primary concern with this budget is the proposed elimination of Part D of the Ryan White Program. Part D-funded programs provide coordinated care and support services to women living with HIV who may be juggling caregiving responsibilities to family members and children. They also ensure support and services for youth who acquired HIV perinatally or at a young age as they transition to adult care. These programs often function as crucial and culturally relevant entry points into care for underinsured women living with HIV — and for youth, the fastest growing population living with HIV in the U.S. For young people and women living with HIV, their ability to stay engaged in care and deal with the psychological aspects of living with HIV may depend on the availability of services which educate and support family members. Part D is the only Ryan White program which has historically had some flexibility for including affected family members in service delivery.

“We are pleased to see the President’s continued commitment to the Minority AIDS Initiative (MAI) and new efforts to address Hepatitis C co-infection, as well as eliminating outdated abstinence-only policies. However, in light of the failure of National HIV/AIDS Strategy 2020 to address sexual and reproductive health of people living with HIV, it is urgently important to ensure that high-quality sexual and reproductive health care is maintained in the Ryan White program and expanded to people with HIV of all ages and genders.  In addition, the Part D program has historically provided services that facilitate access to care for women and youth. Independently of the mechanisms to fund such services, they must be maintained,” says Naina Khanna, Executive Director of PWN-USA.

“Part D services are vital to meeting the needs of women, children and young adults,” adds Kari Hartel, co-chair of PWN-USA Colorado and a Client Advocate and Retention Specialist in a Part D program. “The reason we’ve seen a decrease in vertical transmission is because of the extraordinary efforts of these programs. Part D is uniquely equipped to focus on the needs of women living with HIV and provides a level of support to young people that cannot be matched in other parts of the program. As we continue to see increases in the number of young adults being diagnosed with HIV, cutting Part D would be catastrophic, especially at a moment when, for the first time ever, we have the tools in care and prevention to turn the tide.”

For more details on the President’s budget proposal, click here.