American Kidney Fund President Testimony to Senate Health Committee on California AB 290


SACRAMENTO, Calif. (July 3, 2019)—The American Kidney Fund (AKF) president and CEO LaVarne A. Burton delivered the following testimony today at hearing held by the California State Senate Health Committee on AB 290 (Wood), a bill that will harm thousands of low-income dialysis and transplant patients throughout California. The bill was opposed by 70 organizations and numerous individuals representing a diverse cross section of consumer interests.
In reaction to the bill passing committee, Burton added: “I am extremely concerned that thousands of dialysis and transplant patients who depend on AKF in California are closer to losing an essential financial lifeline that gives them access to lifesaving medical care. All of our State Senators have to understand the gravity of the consequences if AB 290 becomes law and AKF is forced to discontinue its charitable premium assistance program in California.”

My name is LaVarne Burton. I’m President and CEO of the American Kidney Fund. I want to talk about who we are and why we oppose AB 290.

AKF is a servant organization helping people fight kidney disease at every stage—from prevention to dialysis and transplant.

We've done this work for almost 50 years. Last year, almost 4,000 Californians depended on us to help pay their health insurance premiums. We paid Medicare and Medigap premiums for just over half of them.

We have always operated with the highest ethical standards and efficiency. Charity Navigator has given us a 4-Star rating for 17 years running and we are on their Top 10 charities list. We do this with fewer than 80 staff people.

Despite our great work and commitment to patients, our lawyers have determined that we will be forced to shut down in California if AB 290 is enacted. My general counsel is here today.

First, I know that legal opinions differ about whether we can safely continue operations under AB 290. But, the advisory opinion for our premium assistance program from the Inspector General at the U.S. Department of Health and Human Services is legally binding, and it requires that we act in good faith to comply. Should we not do so, we become liable to IG sanctions.

Your own Legal Counsel, on page 6 of its letter, confirms AKF's conclusion that AB 290 would take us outside of the protections of our Advisory Opinion.

Why would we, an organization that has always played by the rules, step out on a limb when our best judgment and that of your own Legal Counsel says that AB 290 takes us outside our protections?

When the HIPAA law that enables the IG opinion was written, I was a Presidential Appointee in the Clinton Administration working at HHS. I co-chaired efforts in the department to develop this legislation. Our chief concern was  protecting against disclosure so that patients could have true freedom of choice in selecting health care professionals. AB 290 undermines that. 

Now, if AKF is forced to shut down in California, here's what happens to thousands of Californians if they cannot find another way to pay their premiums:

  • Many will lose Medicare altogether or face unlimited out-of-pocket expenses without their Medigap.
  • Those who depend on COBRA will lose coverage for themselves and their families
  • Those turning to Medi-Cal may face unaffordable spenddown requirements
  • Many will lose insurance altogether and have to seek emergency dialysis at hospitals.

Finally, there is something very disturbing about the fact that folks in kidney failure are overwhelmingly black and brown. This is not true at the beginning of the disease when it affects all groups proportionately. Why is this the case? It is because we have a broken health care system that does not provide adequate access to care for low-income minority people.  I urge you not to break the system even further by taking away the AKF safety net for people who are literally fighting for their lives.
And now, I want to introduce AKF grant recipient Russell Desmond.

About the American Kidney Fund

As the nation’s leading independent nonprofit working on behalf of the 30 million Americans with kidney disease, the American Kidney Fund is dedicated to ensuring that every kidney patient has access to health care, and that every person at risk for kidney disease is empowered to prevent it. AKF provides a complete spectrum of programs and services: prevention outreach, top-rated health educational resources, and direct financial assistance enabling low-income U.S. dialysis and transplant patients to access lifesaving medical care. AKF holds the highest ratings from the nation’s charity watchdog groups, including Charity Navigator, which includes AKF on its “top 10” list of nonprofits with the longest track records of outstanding stewardship of the donated dollar, and GuideStar, which has awarded AKF its Platinum Seal of Transparency.

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