I’ve been arrested 14 or 15 times now — I’ve lost count. You may wonder what on Earth I’m doing to get in so much trouble. All of those arrests in Washington, D.C., were for protesting actions being considered by Congress or the Supreme Court. About nine of those arrests were for protests specifically related to health care.
Most people would say that’s a lot of time in handcuffs just to make a point. But for me, it’s not just about making a point. When it comes to health care, it’s about life or death.
I have been living with HIV since 1999, but ironically, that’s not the condition that has been the greatest threat to me. My HIV medications are actually the only prescription I’ve consistently had access to since my diagnosis, thanks to the AIDS Drug Assistance Program (ADAP). If it weren’t for the Ryan White Care Act, I wouldn’t even be here. Before Congress passed and President Obama signed the Affordable Care Act (ACA) in 2010, I was not eligible for Medicaid — and I could not afford the 20 percent copays I had with the Medicare I was able to get through my Social Security Disability Insurance (SSDI). So I had to pick and choose which medications I really needed and which ones I might be able to do without for a little while.
I have needed blood pressure medication almost my entire adult life, as well as medication for my cholesterol, which is high as a side effect of my HIV drugs. But SSDI is barely enough to make it through the month; I go to a food bank every week and try to find meetings that serve food to eat at — and that’s now, even with our medical bills covered. It was even worse before. Bills have to come first, then food on the table, and meds after that. I couldn’t afford the 20 percent copays for doctor visits, so I only went when I needed a prescription refilled, when I was told I had to, or when I knew I wouldn’t have a copay. And even then I still didn’t pick up my pills, even when they were covered, because I couldn’t afford the copay. My husband and I never went to a dentist because that was not covered — he was only able to get dentures after the ACA. Between my husband and me, we had only one pair of eyeglasses to share, which we got through a Goodwill program that provides one pair of glasses per household.
Not treating chronic conditions like high blood pressure and cholesterol can have serious consequences. I didn’t take my blood pressure pills regularly for years because I couldn’t afford them — and at the age of 38, had a heart attack. After that, I took my heart medications, but was still missing the others I needed.
The ACA changed so much for us — though unfortunately not before I suffered long-term damage from so many years of not being able to manage my health conditions. I now have diabetes and kidney disease as well. When Ohio expanded Medicaid, my husband and I were finally eligible. All of my conditions are covered now; I can get the prescriptions I need without worrying about it interfering with my ability to keep food on the table, and I can go to the doctor when I need to. I had a stroke in December of 2017, which has further impaired my mobility, and have chronic back pain. Medicaid pays for water therapy, which is the only physical therapy I’ve found that has been really effective, as well as chiropractic care.
I am doing so much better in managing my conditions and am working on losing weight, which will help my heart, kidneys, and back, through a water aerobics class that is also covered by my Medicaid. Yet I know that if the Supreme Court rules in favor of the plaintiff in Texas v. United States and strikes down the entire ACA, I will be right back to where I was eleven years ago — but with even more preexisting conditions to worry about.
I know that if it were not for Medicaid expansion, I would be bedridden or dead. I know that we can’t afford to go back to those days. Until we have universal health care, the ACA is critical for keeping people like me around to fight another day. That’s why I’ve been arrested nine times to protect it, and that’s why I will keep risking arrest to fight against attempts to take it away.
Happy birthday, ACA!
Olga Irwin is the Ohio regional cochair and outreach coordinator at Positive Woman Network-USA, and has been living with HIV for over 20 years.