OPINION – For me, the countdown to 2020 felt more like a ticking time bomb than the start of a new decade as I scrambled to find out how I would survive after a new law, AB 290, caused the loss of my charitable premium assistance. However, a California judge understood the peril that kidney failure patients like me were facing and granted an emergency injunction preventing AB 290 from becoming law, pending the outcome of a trial. The injunction allowed the American Kidney Fund (AKF) to reopen their charitable premium assistance program on December 31st, right in time for me to ring in the new year knowing I would be covered for the foreseeable future. I hope the court rules in our favor later this year.
Although this represents a positive turn of events, AB 290, a law that would force AKF to cease operations in California due to conflict with federal regulation, could still go into effect if the court rules in favor of the State. The loss of the charitable premium assistance program would impact me and the other 3,700 patients in the state, all of whom are low income.
Ten years ago, I passed out and woke up in the hospital. Before that day, I had been healthy and living a normal life. My trip to the ER was the start of my new normal.
Before I was seen, I had an ominous feeling that my kidneys had failed because it had happened to both my mother and uncle. Unfortunately, I was right: my kidneys had stopped functioning and I was ordered to begin dialysis immediately. Dialysis treatments consumed my life—I had to spend hours every day hooked up to a dialysis machine, alone, to do what my kidneys could no longer do. I lost my job, and with that, the ability to support myself. I also could not afford my health insurance.
I relocated to California to be closer to family, so that I could have a support system to battle my kidney disease. I had worked since I was 15—not being able to work was a completely foreign concept for a man like myself. I was in my sixties, and not ready to retire. I wanted to keep working and supporting myself. Not being able to work left my financially strapped. I was able to get health coverage under Medi-Cal and Medicare, but the cost sharing that Medi-Cal required left very little to live on with just a Social Security Disability income.
I was able to turn to the American Kidney Fund for assistance to help pay my Medicare premiums as well as a Medigap supplemental insurance plan. But even with that significant financial assistance, I still struggled and continue to struggle to make ends meet. Rent, a car payment, and living costs consume most of my small income—AKF’s assistance has eased much of the stress in my life.
I have been fortunate to get help from AKF’s health insurance premium program for the past 3 years. Legislators passed AB 290 knowing full well it would force AKF to stop helping patients in California, leaving us without any safety net. There is nowhere else to turn for help in paying for our premiums. If the law is passed and AKF is forced to leave, I am not sure how I will make ends meet.
The temporary injunction has given me a renewed faith. I was scared that I would be left behind by legislators, but the court’s decision marks a momentous occasion that questions the integrity of a bill that serves special interests rather than the constituents of the legislators across the state. The court saw the immediate harm the law would have caused, since patients should not be left without access to care.
Our elected officials knowingly abandoned sick patients across the state. I am a victim of their lack of responsibility and hope that once and for all, patients like me will be given the opportunity to receive charitable assistance without the looming prospect of legislation which takes that all away. I sincerely hope that the courts will defeat this bill, knowing that without charitable premium assistance, many patients will be left with no other options for care.
By Russell Desmond | Special to the OBSERVER