My mom and I have been fighting the dialysis industry for years because they have taken advantage of her. It’s not something we set out to do. We just felt we had to do it. Now, we have a chance to keep other patients from going through what my mom experienced by supporting AB 290.
After my mom’s kidneys failed in 2007, she knew she wanted to get a kidney transplant. Most patients prefer getting a transplant because it’s easier on their body, but it often means waiting for years until a donor is found. In the interim, patients’ only way to stay alive is through dialysis, an exhausting process that requires being hooked up to a machine that filters their blood for hours at a time, three days a week.
Patient care was never the priority of the American Kidney Fund. It was making a profit for its funders, DaVita and Fresenius.
When my mom started dialysis, she received health coverage through Medi-Cal and got on the waiting list for a kidney transplant. She didn’t owe any premiums, co-pays or deductibles for her care. It was an arrangement that largely worked for her.
However, one day a social worker at her dialysis clinic urged my mom to sign up for private insurance. The social worker told us that my mom had a better chance of getting a kidney transplant if she signed up with a program called the American Kidney Fund. It is an organization that receives hundreds of million dollars each year from the two largest dialysis corporations, DaVita and Fresenius, and uses those funds to pay dialysis patients’ healthcare premiums.
It sounded like a great opportunity, so she signed up for financial assistance through the American Kidney Fund.
It didn’t take long for us to realize what a mistake we’d made. Patient care was never the priority of the American Kidney Fund. It was making a profit for its funders, DaVita and Fresenius. Patients like my mom were encouraged to switch to private health insurance because it lets the large, for-profit dialysis corporations make more profit than they would from patients covered by Medi-Cal or Medicare.
After signing up with the American Kidney Fund, my mom started having to pay high out-of-pocket costs for her medications – something she never had to do with Medi-Cal. When she tried to schedule a normal appointment with her doctor, the clinic said they couldn’t see my mom because they didn’t accept her new health insurance.
With all the money we were spending, we were getting so stressed. That’s when we began trying to get my mom back into Medi-Cal, a process that took eight months. By that time though, she was 68 and considered too old to be eligible for a kidney transplant.
We were devastated. My mom’s dialysis clinic told us we were doing the right thing by switching to commercial insurance paid for by the American Kidney Fund, and yet she ended up with inferior coverage that cost my mom her chance of getting a new kidney.
That’s why we’ve been talking with legislators about the need for reform. AB 290 will allow the American Kidney Fund to continue paying for patients’ premiums, but clinics owned by DaVita and Fresenius would be prevented from price gouging. Instead of charging excessive prices, the corporations will be reimbursed at the Medicare rate for any patients receiving assistance through the American Kidney Fund.
Such a system would preserve the program’s charitable mission while removing corporations’ incentive to convince patients, like my mom, to sign up for health insurance that isn’t in their best interest.
We support AB 290 because it’s a sensible way to ensure that dialysis companies act in the best interests of patients – not profits.
Editor’s Note: Cristina Castro lives in Sacramento.