Press release

American Kidney Fund Responds to Rep. Porter letter: "bad policy driven by special interests that only serves to hurt low-income, minority patients"

ROCKVILLE, Md. (December 9, 2019) – The following statement may be attributed to LaVarne A. Burton, president and chief executive officer of the American Kidney Fund (AKF) in response to a letter sent to AKF from Rep. Katie Porter (D-Calif.):

"Throughout the time that the California legislature was considering AB 290 and before the Governor signed the bill, AKF continuously and clearly communicated our position that we could not operate our program under the requirements in the California bill.  To do so would put us at odds with Federal requirements and endanger our ability to provide assistance to patients nationwide.   The legislature persisted in enacting AB 290 without making any provision for how the patients we have been assisting for more than two decades would receive health care if AKF were no longer able to assist them. The State is now looking for someone to blame for a problem that they have caused.

"AKF has been, and continues to be, painstaking in our efforts to communicate with all state and federal policymakers about the impact of AB 290, and the reasons why conflicts between the new state law and federal rules mean that our program cannot operate in California. 

"AKF will continue its due diligence in working with all policymakers, as well as seeking resolution in the courts to overturn what we believe is bad policy driven by special interests that only serves to hurt low-income, minority patients."

Timeline of AKF communications with California state legislators and California delegation:

AKF has been warning California lawmakers throughout 2019 that AB 290 will force AKF to leave California. We've been working diligently to communicate with our grant recipients throughout this period. What are California lawmakers doing to help their constituents?

March 15 — AKF sends letter of Opposition to members of the California Assembly Health Committee.

April 3 — AKF meets with Assembly Health Committee Chairman Jim Wood to discuss AB 290 and warn that AB 290 may force AKF to leave the state.

May 17 — AKF meets with Senate Health Committee Chairman Richard Pan to propose compromise legislation and warn that AB 290 may force AKF to leave the state.

May 20 — AKF letter of opposition sent to members of the Assembly.

May 21 — AKF Floor Alert, Assembly.

June 28 — AKF sends legal memo to California Senate Health Committee explaining our position.

July 2 — AKF sends Letter of Opposition to members of the Senate Health Committee

July 3 — AKF testifies at Senate Health Committee hearing that AB 290 will force AKF to leave the state. "Our lawyers have determined that we will be forced to shut down in California if AB 290 is enacted," says AKF President and CEO LaVarne Burton. Committee passes bill.

July 26 — AKF sends email to California Congressional delegation to update the delegation. 

July 29 — AKF meets with Rep. Porter's office about our HIPP program.

Aug. 6 — Letter of Opposition to members of the California Senate Appropriations Committee

Aug. 9 — AKF sends letter to all of its California grant recipients letting them know that if AB 290 becomes law, AKF will have to stop the program in California. AKF advises patients to begin to research all health coverage options for which they could qualify and that they could afford in 2020, without AKF assistance. AKF provides patients with links to state and federal resources. AKF also provides advice to those patients who are on the transplant list.

Aug. 22 — AKF meets with Senate Appropriations Committee Chairman Anthony Portantino and shares with him the letter to patients that went out on Aug. 9. AKF urges Sen. Portantino not to let AB 290 out of committee because of the harm it will cause patients. 

August 23 — AKF sends letter to Sen. Portantino reiterating our position.

Sept. 9 — AKF distributes Floor Alert, California Senate.

Sept. 10 — AB 290 passes California legislature by slimmest of margins. Behind closed doors and without AKF's input, the bill has undergone major last-minute amendments that would rewrite AKF's program in the state. AKF needs to study the amendments and determine if they will allow AKF to continue operating without violating 97-01. AKF issues national press release urging a veto and stating that it is considering what to do in California. 

Sept. 11 — AKF meets with Congresswoman Porter and her staff to discuss our HIPP program.  A HIPP grant recipient and constituent of Congresswoman Porter's also attended the meeting.  

Sept. 12 — AKF sends letter of opposition to Governor Newsom.

Sept. 12 — AKF issues national press release stating that if AB 290 becomes law, AKF will have to end its program in California. "After careful consideration, we are informing all of our grant recipients in California and the social workers at the clinics, hospitals and nursing homes where they are treated that if Governor Newsom signs AB 290, it will force us to stop providing charitable premium assistance in California on the day it becomes law, January 1, 2020. If this happens, we will be communicating with our grant recipients throughout the shutdown process to answer their many questions and respond to their concerns."

Sept. 13 — AKF sends national press release directly to Rep. Porter's office.

Sept. 20 — AKF meets (over the phone) with Rep Porter's office again.

Sept 23 — AKF sends email to California delegation updating delegation on AKF's position. 

Sept. 24 — AKF meets in person with Gov. Newsom's office as well as with the Department of Managed Health Care to warn that AKF will be forced to leave the state if AB 290 becomes law. 

Sept. 25 — AKF sends memo to Governor's Office explaining AKF's legal position and impending departure from state if bill becomes law.

Oct. 13 — Gov. Newsom signs AB 290. AKF distributes national press release. "On the day this bill becomes law — January 1, 2020 — the American Kidney Fund will be forced to stop providing financial assistance to these vulnerable patients who depend on it to access the health care they need to stay alive."

Oct. 14 — AKF emails California Department of Managed Health Care asking to work together to find a solution for patients who will lose health coverage. 

Oct. 14 — AKF sends email to California delegation informing them that AKF will have to leave the state. 

Oct. 15 — AKF sends letter to all of our grant recipients to notify them of impending end of program. "AKF will no longer be able to pay your health insurance premiums beginning in January 2020. Because you are currently receiving assistance from us, we will continue to accept grant applications on your behalf until December 13, 2019 and must make any payments on those applications by December 31, 2019." 

Oct. 15 — AKF launches webpage for grant recipients, that gives updates, provides a resource guide for financial assistance, and includes a PDF of the letter that AKF sent to patients. 

Oct. 16 — AKF sends letter to California state lawmakers notifying them we must end the program and urging them to help the patients. "We hope you and your colleagues will consider exploring alternative options for low-income dialysis patients, particularly those that do not qualify for Medicare or Medi-Cal and/or are unable to access Medicare Supplement Plans (Medigap) due to California's unique carve-out that allows insurers to refuse to cover ESRD patients under 65 years old."

Nov. 1 — AKF, Dialysis Patient Citizens and two patient plaintiffs file suit in federal court against State of California, seeking to overturn AB 290. 

Nov. 4 — AKF emails California delegation to notify them that AKF has filed suit against California and reiterating that without a court's action, AKF will have to leave California.

Nov. 15 — Fully one month after AKF contacted California DMHC asking the agency to work with AKF to ensure a smooth transition for patients, AKF receives a letter from California Secretary of Health and Human Services Mark A. Ghaly, offering to inform AKF grant recipients about Covered California. 

Nov. 20 — AKF responds to Secretary Ghaly that AKF will be happy to provide detailed information about Covered California to patients if the state will send this information to AKF. (AKF already has general information on its website.) AKF informs the Secretary that most patients won't be eligible or able to afford this coverage, and asks the Secretary to come up with a solution that will take care of all 3,700 patients. To date, AKF has not received a response. The State still has not responded to AKF.

Dec. 6 — AKF sends email to California delegation explaining what AKF has done to date, refuting the erroneous claim that AKF doesn't have to leave the state, and urging lawmakers to set aside differences and come up with solutions for patients. 

About the AKF charitable assistance program: For more than 20 years, the American Kidney Fund's 100% needs-based Health Insurance Premium Program (HIPP) has provided grants to low-income dialysis and kidney transplant patients, helping them pay for their health coverage when they cannot afford to do so on their own. AKF's program is governed by Advisory Opinion 97-1, which was issued by the Inspector General of the U.S. Department of Health and Human Services in 1997. AO 97-1 requires strict firewalls and safeguards to protect and ensure patient choice of provider and insurance coverage, providing a safe harbor from federal beneficiary inducement laws. This protocol has set the standard for dozens of similar national charity care programs for more than two decades.
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About the American Kidney Fund

The American Kidney Fund (AKF) fights kidney disease on all fronts as the nonprofit with the greatest direct impact on people with kidney disease. AKF works on behalf of 1 in 7 Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. AKF fights for kidney health for all through programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy. AKF is one of the nation’s top-rated nonprofits, investing 97 cents of every donated dollar in programs, and holds the highest 4-Star rating from Charity Navigator for 21 consecutive years and the Platinum Seal of Transparency from Candid, formerly known as GuideStar. 

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