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Background: The Ryan White program is the largest payer of HIV-specific medical care in the United States, providing a range of medical and social support services. Ryan White is currently up for reauthorization, and the health care landscape for people with HIV is changing under Affordable Care Act implementation.
Methods: To determine the unique medical, social and structural support needs of women with HIV in the face of changing health care coverage, service delivery infrastructure, and quality of life concerns, Positive Women''s Network - USA (PWN-USA), a national membership body of women living with HIV (WLHIV) facilitated a community based participatory research project led and executed by 16 WLHIV to inform future advocacy.
A survey addressing access to care and quality of care for WLHIV was developed by the 16-member research team. The survey was administered in eight geographic areas in the US. A total of 180 WLHIV completed surveys.
Results: Data revealed high levels of stigma and multiple barriers to care. Transportation presented the largest barrier to successful engagement in medical care (doctor visits and prescription refills) for women with HIV, whether in rural or urban areas. Nearly two-thirds of respondents had been diagnosed with depression, and 17% had been diagnosed with post-traumatic stress disorder. There was a large unmet need for mental health services and social support, including support groups. Sexual and reproductive healthcare was inconsistently available; less than half of respondents of reproductive age had been asked in the past year whether they were interested in getting pregnant and just over 40% had been informed by a provider that viral suppression would reduce the risk of onward HIV transmission.
Conclusions: As women with HIV are changing, so are care needs. Nearly five years after the data from HPTN052 was published, treatment as prevention science still has not penetrated into communities of WLHIV in the US and sexual and reproductive healthcare (SRH) are substandard. In future iterations, the Ryan White program will need to consider delivering SRH care to people with HIV of all ages and genders. Employment services must be integrated, and there is an urgent need to address transportation barriers.

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