I dreaded the approach of Jan. 1, the day a new law in California was going to end the charitable help that pays health insurance for myself and thousands of kidney patients in California. Assembly Bill 290, which was passed and signed by California politicians, was set to go into effect that day and I spent the holidays bracing for it, confounded over how I was going to find the money to pay for medical care that literally keeps me alive.
Luckily for me, a California judge understood the peril that kidney failure patients were facing and granted an emergency injunction preventing AB 290 from becoming law, pending the outcome of a trial later this year. This emergency injunction allowed the American Kidney Fund to reopen their program on Dec. 31 and means that I am still able to receive financial support for my medical care, which I cannot otherwise afford.
But my future fate still hangs in the balance—we do not know what will happen with the trial. This injunction gave me a new, hopefully not temporary, lease on life.
Kidney disease effects 37 million people in the United States. In my case, my kidney disease is a genetic disorder called polycystic kidney disease. I was diagnosed with it at age 19. As this disease progresses, the need for dialysis is pretty much a certainty.
When the time came for me to go on dialysis three years ago, my doctors had me begin with home dialysis. After two life-threatening illnesses, I had to switch to dialysis in a clinic.
Kidney failure and dialysis treatment caused my life to change dramatically. I was a film producer but could no longer work full-time because of my disease. Although this has caused significant financial hardship for my family, I consider myself lucky. My treatment is consistent and well-managed, and I was fortunate to receive financial help that ensures I stay healthy.
I can afford to pay the health insurance premiums for my Kaiser Senior Advantage plan, but I rely on support from the AKF to cover the costs for my Medicare Part B plan. This alleviates a fair amount of financial stress so that I can concentrate on my health and my family, as I wait for a transplant. As a result of the injunction, I am grateful that I can still receive support from AKF.
Politicians in Sacramento passed AB 290 even though they knew the law would leave thousands of Californians without charity support. That is why when AB 290 was passed, I was thrown into a crisis of life or death proportions—the legislature left us high and dry, without a safety net. Charity care should never be attacked and dismantled without a backup plan for patients who desperately need that financial assistance because access to care is not optional for us.
The emergency injunction is literally saving my life. I am grateful that the court acknowledged the needs of thousands of patients, since without charity care, we cannot afford to pay for coverage. I am also hopeful that the case is decided favorably for patients like myself, so that we continue to receive financial assistance for the treatment that keeps us healthy and alive.
I need to stay healthy as I wait for a transplant. If AB 290 eventually goes into effect, I may never be able to get that transplant. For patients like me, life these days feels like a ticking time bomb.
Michael Brinker is a California kidney disease patient who receives financial support from the American Kidney Fund, the nation’s largest charitable assistance program for people with that disease.