Not a day goes by when I do not think about my late partner Steve Michael. But at the beginning of December, World AIDS Day, the memories came flooding back – vivid, raw, and sad. Steve died in 1998, just as new anti-retroviral treatments for HIV/AIDS were emerging. Together, we experienced firsthand the challenges of negotiating a complex and fragmented health care system for people without insurance. While some of these challenges have been addressed, in part, by the Affordable Care Act (ACA), it would be too late for Steve.
Steve lived with HIV for many years. However, he was not sick enough to qualify for Medicaid. Steve was caught in a Catch-22 – he could obtain Medicaid only after his diseased progressed from HIV to AIDS. Yet, the health care benefits and services provided by Medicaid could have slowed the progress of his illness and helped prevent the onset of deadly opportunistic infections. Like so many living with HIV without health insurance, Steve relied upon a patchwork of programs and free clinics, where sporadic funding and lack of quality controls led to significant gaps in his safety-net care.
Then Steve contracted cryptosporidiosis, a waterborne parasite, most likely by drinking unfiltered tap water after one of his many arrests leading ACT UP protests. His physician prescribed a high-powered antibiotic and a newly-approved medication to treat AIDS wasting syndrome. However, these were not covered at that time under the AIDS Drug Assistance Program in DC – a program for un- and under-insured persons.
Steve went downhill fast. I sat for six hours at DC’s Income Maintenance Center to process Steve’s Medicaid application, because he was too weak with dehydration and diarrhea. The intake worker told me to come back with additional documentation showing proof of residency because somehow his DC license, voter card, lease, utility bill, and second utility bill, were not enough.
We ultimately obtained the antibiotic through another program for emergency assistance, and won approval for the AIDS wasting treatment under the manufacturer’s patient assistance program. But it was too late. Steve spent three weeks in the Intensive Care Unit at Washington Hospital Center, hooked to a ventilator. By then, Steve had Medicaid, but also pneumonia and multiple other opportunistic infections. He would not bounce back. I ultimately agreed to disconnect Steve from life support. One week after Steve died, his prescription for the AIDS wasting drug arrived in the mail.
These experiences led me to the University of the District of Columbia’s law school, with its focus on public interest and social justice. I graduated ten years to the day after Steve died. Not long after Congress passed the ACA, I joined the National Health Law Program (NHeLP) as a staff attorney, where so much of my work directly relates to my earlier experiences with Steve.
One of my first projects was working with state advocates to implement improvements to the Medicaid application and eligibility determination process. The ACA required states to adopt a single streamlined application for Medicaid with agencies verifying information such as income and residency using government electronic sources like tax data. Applicants would no longer need to make repeated trips, in person, to agency offices. I also developed NHeLP’s resources to help advocates understand new rules for determining financial eligibility for Medicaid and how to challenge unlawful denials.
The ACA’s Medicaid expansion means that low income people, including those living with HIV, can now qualify for Medicaid before they develop a debilitating medical condition. While thirty-seven states and the District of Columbia have taken up Medicaid expansion, people with HIV in non-expansion states, mostly in the Deep South, struggle to access care.
NHeLP continues to work to expand prescription drug access, a critical health care issue, and not just for people with HIV/AIDS. NHeLP fought insurance companies overcharging for HIV/AIDS treatments, exposed shortcomings in the administration’s “blueprint” to lower prescription drug costs, and advocated for expanded access to PreExposure Prophylaxis (PrEP) to prevent new HIV infections.
The memories of those terrible, tumultuous days when AIDS took my partner’s life will forever linger in my heart. They also continue to inform and drive my advocacy efforts as a health law attorney. At NHeLP, I work with amazing colleagues, whose own experiences and deep commitment to health equity are making progress real.