AB 290 Would Add Insult to Injury for Low-Income Dialysis Patients

September 4, 2019

By Johnny Cooks

Johnny Cooks is a dialysis patient and resident of San Mateo

As a dialysis patient, I’ve been stuck with needles more than 3,400 times, lived out of my car, and suffered muscle cramps that brought me – a grown man and former security guard – to tears.

But perhaps the most painful thing of all is knowing that elected officials from my hometown are considering AB 290, a bill that would cut off a private charitable assistance program that enables me to pay my medical bills.

AB 290 is designed purely to beef up insurance company profits, and it is an affront to low-income Californians who rely upon kidney dialysis several days a week to stay alive.

I go four times a week at 5:30 a.m. to my local dialysis center for the hours-long treatment. The demands of the process cost me my job.

Some days, when depression and exhaustion from the treatments have set in, I just don’t want to get up. But I do. Because I know that without these treatments, I will die.

Now, I’ve learned that the California Legislature will decide whether to approve AB 290, which places new strict rules on certain charitable organizations including the American Kidney Fund. AB 290 requires AKF and other charities to disclose confidential patient information to insurance companies. This would violate federal regulations governing charitable premium assistance and force AKF to stop helping California patents.

This non-profit organization provides charitable assistance to help 3,700 low-income dialysis patients in California pay their health insurance premiums.

AB 290 would pad insurance company profits, even in the unlikely event that charities are able to continue providing premium assistance to low-income patients. The bill allows insurance companies to slash reimbursements to Medicare rates — which amount to less than the cost of the actual treatment — for patients who receive CPA charitable premium assistance.

This will jeopardize access to care for all dialysis patients because some clinics will be unable to afford to stay open.

Without AKF’s assistance, many of us would be at risk of dying.

For me personally, losing this assistance would be life-shattering. I already struggle to make ends meet, with only my permanent disability payments to provide for the prescription medications and other costs that my health condition requires.

Rent in the Bay Area is prohibitive enough, even without other hardships. At times, I have been forced to live in my car while still going to dialysis. I do not believe I would survive without the support of my church and support community.

I would ask lawmakers to visit a local dialysis clinic and speak with patients before they act on a bill that would devastate the poorest among us.

They will see that dialysis is no picnic. It is a grueling process that keeps us alive but also sucks the life out of us at times – causing exhaustion, pain and the mental burnout that comes with losing all personal freedom and spontaneity because we are tied down to these machines to stay alive.

And I believe they will see that AB 290 is an insurance company profit grab that would add insult to injury, something they would not wish on any member of their own family.

I am pleading with them to reject AB 290.

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