This year, the Affordable Care Act (ACA) celebrated its fifth year of providing millions of people with health insurance. In 2015, 11.7 million Americans — including 6.2 million women — got covered thanks to the health reform law.1 The ACA has been a huge advance for women’s health, and has largely met its goals to increase the number of people with insurance, improve the overall quality of health care, and stem the tide of rising costs.
Yet, there have been kinks in implementing the ACA, and the most vulnerable Americans risk falling through the cracks. In particular, people living with HIV (PLHIV) have been hard-hit by problems with the ACA — especially women living with HIV (WLHIV), who need access to reproductive and sexual health care. For example, the ACA does not provide for any social support or case management services structured to meet WLHIV’s unique needs and keep them engaged in life-saving care.
In commemoration of National Women & Girls HIV Awareness Day (March 10), the National Women’s Health Network (NWHN), Positive Women’s Network – USA (PWN), and SisterLove, Inc., published a paper about WLHIV’s continued challenges in accessing health care. The paper, Ryan White & the Affordable Care Act: Advocating for Public Healthcare for Women Living with HIV,2 analyzes how well the ACA and other publicly funded health care programs meet WLHIV’s need for comprehensive, high-quality care delivered without stigma or discrimination, regardless of the ability to pay.
We believe that HIV services should be integrated into all comprehensive women’s health care efforts. Yet, our review finds that WLHIV have been overlooked during the course of ACA implementation. In order for WLHIV to fully realize health care reform’s benefits, women’s health advocates must advocate for other public benefits programs that fill the gaps in ACA coverage. Until we have a robust health care system that adequately addresses the needs of all Americans, other publically funded programs continue to play an essential role in helping WLHIV met their sexual and reproductive health care needs.
The ACA & Women Living with HIV: More to Do
Over a quarter million U.S. women (280,000) are living with HIV, but women’s infection risks are not uniform.3 There are stark racial disparities among people with new HIV diagnoses. A White woman’s likelihood of being diagnosed with HIV in her lifetime is 1 in 526, a Latina’s likelihood is 1 in 106, and an African American woman’s likelihood skyrockets to 1 in 32.4 Latina women make up 16 percent of the U.S. female population and represent 19 percent of WLHIV; African American women, who comprise only 13 percent of the U.S. female population, represent 60 percent of WLHIV.5
The ACA has improved WLHIV’s access to care. Women who work for most large employers can’t be denied private health insurance or charged higher rates due to their HIV status. Insurers can no longer impose lifetime caps on coverage. And, many preventive services are now covered without cost — including well-woman visits, HIV screening and counseling, and screening and counseling for interpersonal and intimate partner violence (IPV).6
Yet, WLHIV still face significant barriers getting the full spectrum of health care they need. This is particularly true for women in the 22 states that did not expand Medicaid coverage (7 of these are debating expansion) in the wake of the 2012 Supreme Court decision striking down the ACA’s Medicaid expansion requirement.7
Currently, an HIV diagnosis is not a “disability” that allows PLHIV to automatically qualify for Medicaid; PLHIV only qualify for disability-based Medicaid coverage when HIV progresses to AIDS. If all states expanded Medicaid, as the ACA originally required, PLHIV would have been able to access services based on an HIV (vs. AIDS) diagnosis; this makes good sense medically and helps PLHIV live longer, healthier lives. In states that refuse to expand Medicaid, the result is a devastating gap in coverage for PLHIV, especially for women who need reproductive health care. The problems are particularly acute for WLHIV’s access to prescription drugs and affordable coverage.
In terms of prescription drug coverage, although preventive services must be provided without cost-sharing under the ACA, HIV treatment is very expensive. Some insurance companies discriminate against PLHIV by charging more for HIV-related prescriptions.8 Some have placed all HIV medications (including generics) in their highest cost-sharing tiers. A recent study estimated that a person living with HIV could pay more than $3,000 out-of-pocket, annually, due to discrimination in HIV medication pricing.9
In terms of affordable care, the Supreme Court decision allowing states to not expand Medicaid eligibility pushed many low-income people into “the coverage gap.” State Medicaid expansion generally lowers the income requirement levels and makes more people eligible for Medicaid coverage. The “coverage gap” occurs when a person’s income is too low to qualify for health care subsidies,10 but too high for state Medicaid.11
Unfortunately, almost half (43 percent) of PLHIV reside in states that didn’t expand Medicaid, like Texas and Georgia.12,13 For example, Masonia Traylor, a 28-year-old WLHIV pharmacy technician, makes less than $10 per hour (less than $1,000 per month, and less than $10,000 annually). Her schedule is capped at 30 hours per week, precluding her from getting employee benefits. At her current income, Masonia and her two children qualify for Medicaid in Georgia, but she’s starting a part-time position as a health advocate. The second job will raise her income above Georgia’s Medicaid qualification cut-off. And, even with her increase in income, she won’t make enough to qualify for a subsidy on the marketplace. Without a subsidy, she can’t afford to pay a private plan’s monthly premiums for herself and her two children, as well as the out-of-pocket costs like deductibles and copays for her HIV treatment. Without health insurance coverage, Masonia’s and her family’s health will be jeopardized due to a marginal shift in income.
Ryan White Program Helps WLHIV: Supplementing Gaps in ACA
Until these problems can be addressed, it is critical that other public programs are supported to meet the identified needs of low-income Americans, including WLHIV. In particular, the Ryan White program is critical to ensure that WLHIV can access the full range of care services and medications needed to stay healthy.
Jacqueline Muther — long-time Atlanta HIV advocate and policy manager of the Grady Infectious Disease Program — notes that many of her clinic’s patients make too much to qualify for Medicaid and cannot afford the costs associated with private plans. Muther comments: “The ACA isn’t working in Georgia. It will not work in states that fail to expand Medicaid. That’s the core of the thing.” The clinic — like so many serving PLWHA — is often forced to pick up the tab for their care, which it does largely using Ryan White HIV/AIDS Treatment Extension Act funds.
Ryan White funding is distributed via complementary “parts,” which together, provide primary care and wrap-around services to ensure that PLWHA receive uninterrupted care. “Part D” funds culturally relevant, family-centered services to help women, children, and youth living with HIV maintain continuous care. Part D services — which include case management, peer support, reproductive and mental health care, health education, and transportation for medical appointments — are indispensable for vulnerable PLHIV.
Without Part D services, people who fall into the “coverage gap” will have no way to get the care they need to stay healthy. This is especially true in states that did not expand Medicaid. These programs are essential to meeting the needs of women and others living with HIV.
There is much to do to fully realize the ACA’s goals and protect Americans’ health. Advocates and policymakers must ensure full access to treatment, without interruptions in care, so that PLHIV can lead long, healthy lives. Our document presents three key recommendations to ensure accessible, consistent, and affordable health care coverage is available for all people living with HIV through the ACA and other public programs:
- ACA Regulations Must Address Discriminatory Prescription Drug Benefits. Advocates must ensure that HIV medications stay affordable and accessible as the ACA is implemented. Advocates should act as watch-guards over instances of price and/or medication coverage discrimination and any resulting disruptions to care. Advocacy around discriminatory practices around HIV-related medications should also examine the role of the Ryan White CARE Act to meet WLHIV’s needs.
- Access to Ryan White Services Must Be Protected. Since ACA implementation is still in its early stages, and many states failed to expand Medicaid, Ryan White must be supported as a critical tool to meet WLHIV’s needs. Part D standards provide a model for the ACA, and should be preserved and/or expanded.
- Ryan White Part D Services Must Be Expanded. Advocates must remain vigilant in ensuring that WLHIV’s needs are met by programs like Ryan White Part D services. Ryan White Part D services should be preserved, expanded, and used as a model for the required care provided through Marketplace insurance plans serving PLHIV.
The NWHN and our allies will continue to fight for truly universal health care for women and their families. With our partners in Raising Women’s Voices (RWV), we will advocate for the remaining states to expand Medicaid as part of their ACA implementation. We will oppose high premiums, imbalanced pricing structures for HIV medications, and threats to vital social and medical services that provide care to WLHIV. We will keep working until the U.S. health care system finally meets the needs of all people, including those living with HIV.
This article was written by: Ariel Tazkargy, Esq.
Ariel Tazkargy is the NWHN’s Law Students for Reproductive Justice (LSRJ) Reproductive Justice Law & Policy Fellow. She co-authored the policy paper and article with Melanie Medalle, LSRJ Fellow at SisterLove, Inc. and Nerissa Irizarry, LSRJ Fellow at Positive Women’s Network – USA.
1. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation (ASPE), Issue Brief: Health Insurance Marketplaces 2015 Open Enrollment Period: March Enrollment Report, Washington, DC: Department of Health and Human Services, 2015, See Appendix Table A1. Retrieved March 12, 2015 from http://aspe.hhs.gov/health/reports/2015/marketplaceenrollment/mar2015/ib_2015mar_enrollment.pdf.
2. On the NWHN website (nwhn.org) or directly at: http://bit.ly/1E347we.
3. Centers for Disease Control and Prevention (CDC), HIV Surveillance Report, Atlanta, GA: CDC, February 2013. Retrieved March 10, 2015 from: http://www.cdc.gov/hiv/pdf/statistics_2011_HIV_Surveillance_Report_vol_23.pdf. See also Kaiser Family Foundation, HIV/AIDS Policy, Fact Sheet: Women and HIV/AIDS in the United States, Washington, DC: Kaiser, March 2013. Retrieved March 10, 2015 from: http://www.s-cap.org/events/documents/WomenHIVAIDSintheUS_KaiserFamilyFoundation3-2013.pdf.
4. Kaiser Family Foundation, HIV/AIDS Policy, Fact Sheet: Women and HIV/AIDS in the United States, Washington, DC: Kaiser, March 2013. Retrieved March 10, 2015 from: http://www.s-cap.org/events/documents/WomenHIVAIDSintheUS_KaiserFamilyFoundation3-2013.pdf.
5. Kaiser Family Foundation, HIV/AIDS Policy, Fact Sheet: Women and HIV/AIDS in the United States, Washington, DC: Kaiser, March 2013. Retrieved March 10, 2015 from: http://www.s-cap.org/events/documents/WomenHIVAIDSintheUS_KaiserFamilyFoundation3-2013.pdf.
6. U.S. Department of Health & Human Services (HHS), Family Violence Prevention & Services Program, The Affordable Care Act & Women’s Health, Washington, DC: Family Violence Prevention & Services Program, Dec. 2013. Retrieved March 10, 2014 from: http://www.acf.hhs.gov/sites/default/files/fysb/aca_fvpsa_20131211.pdf. IPV screening is critical for WLHIV, who disproportionately experience it: more than 50 percent of WHLIV have experienced IPV, compared to 36 percent of women nationally. Positive Women’s Network – USA, Healing Trauma and Ending Violence Against Women Are Crucial for Improving HIV Health Outcomes, Oakland, CA: PWN. Retrieved February 20, 2015 from: https://pwnusa.files.wordpress.com/2014/03/nwghaad-white-house-fact-sheet-final.pdf.
7. National Federation of Independent Business v. Sebelius: 132 S. Ct. 2566 (2012).
8. Jacobs D, Sommers B, “Using Drugs to Discriminate–Adverse Selection in the Insurance Marketplace,” New England Journal of Medicine 2015; 372(5):399-402, http://www.nejm.org/doi/full/10.1056/NEJMp1411376.
9. Jacobs D, Sommers B, “Using Drugs to Discriminate–Adverse Selection in the Insurance Marketplace,” New England Journal of Medicine; 372:399-402, http://www.nejm.org/doi/full/10.1056/NEJMp1411376.
10. In 2014, single adults had to make at least $11,670 to qualify for financial assistance to purchase a private plan on the Marketplace. A family of three, like Masonia’s family, must make at least $19,970 to qualify for financial assistance.
11. Kaiser Family Foundation, The Coverage Gap: Uninsured Poor Adults in States that Do Not Expand Medicaid – an Update, Washington, DC: Kaiser, 2014. Retrieved March 10, 2015 from: http:// kff.org/health-reform/issue-brief/the-coverage-gap- uninsured-poor-adults-in-states-that-do-not-expand- medicaid-an-update.
12. Kates J, Garfield R, Young K, et al., Assessing the Impact of the Affordable Care Act on Health Insurance Coverage of People Living with HIV, Washington, DC: Kaiser Family Foundation, 2014. Retrieved March 10, 2015 from: https://kaiserfamilyfoundation.files.wordpress.com/2013/12/8535-assessing-the-impact-of-the-affordable-care-act-on-health-insurance-coverage.pdf.
13. Southern AIDS Strategy Initiative (SASI), Georgia Ryan White Advocacy Two-Pager, Durham, NC: SASI, April 2014. Retrieved March 10, 2014 from: http://southernaidsstrategy.org/state-portal/georgia/.