Pandemic Advocacy: American Kidney Fund Keeps Patient Issues Front and Center with Policymakers

ROCKVILLE, Md. (May 22, 2020) – Since the nation shut down in March, the American Kidney Fund (AKF) has been engaging with policymakers to ensure that the needs of kidney patients are considered in coronavirus emergency orders and legislation. Americans with underlying chronic diseases — including chronic kidney disease (CKD) and end-stage renal disease (ESRD) — have been hit hard by the spread of COVID-19, and AKF has joined coalitions of numerous other patient advocacy groups in the chronic disease community.

In addition to advocating on a broad range of issues ranging from caution in relaxing social distancing requirements to the establishment of free electronic banking accounts for recipients of stimulus funds, AKF has requested federal funding to convert its Coronavirus Emergency Fund into a sustained safety net program for low-income dialysis and recent transplant patients who are particularly vulnerable to the disease and experiencing extreme financial hardship that will persist over time.

On May 13, AKF sent a letter to the National Governors Association urging caution as states begin lifting safety precautions because dialysis and post-transplant patients – especially those in minority communities — remain at high risk for serious complications from COVID-19. As an active member of the HHS Kidney-COVID-19 workgroup that includes HHS officials and stakeholders in the kidney community, AKF submitted proposals that address COVID-19-related issues that the dialysis and kidney transplant communities are facing, including emergency funding for needy ESRD patients.

AKF established its Coronavirus Emergency Fund in late March to provide one-time assistance to low-income dialysis and post-transplant patients to help with the immediate financial impact that patients reported relating to obtaining kidney-friendly food, affording safe transportation to treatment, and purchasing essential medical supplies. Each subsequent week has deepened the financial crisis these patients face. AKF has asked Congress to include funding in the next COVID-19 federal aid package to allow the organization to convert the Coronavirus Emergency Fund into a sustained safety net program that can help these patients with monthly grants over the longer term.

"This public health emergency is exacting a heavy toll on some of the nation's sickest and most vulnerable patients, hitting especially hard in minority communities that are already disproportionately affected by kidney disease," said LaVarne A. Burton, AKF president and CEO. "In addition to the many policy and regulatory fixes we have proposed, federal funding for our Coronavirus Emergency Fund will help keep these patients from falling into homelessness, missing treatments or vital prescriptions, and able to maintain their strict renal diet in the coming months."

The vast majority of patients living with kidney failure are too sick to work, and many have family members who have lost employment. Yet their treatment cannot be deferred; they must travel to dialysis multiple times per week, continue taking an array of prescription medications, and eat renal-friendly foods that are often unavailable from food banks. Kidney transplant patients, who take immunosuppressive drugs to prevent rejection of the transplanted kidney, are also extremely vulnerable to COVID-19.

These patients' financial shocks from the COVID-19 crisis will be long-lasting, and AKF is uniquely positioned with its existing financial assistance programs for low-income ESRD patients to quickly get funds into the hands of those who need them most.

AKF sent a letter to the American Hospital Association, the Federation of American Hospitals, and America's Health Insurance Plans reminding them that health systems cannot discriminate against dialysis patients. AKF alerted them to the March 28, 2020 bulletin released by the HHS Office of Civil Rights which stated that "rationing" intensive care unit beds and ventilators and making ineligible people with disabilities, including organ failure or reliance on a dialysis machine, is illegal. 

AKF has also activated its 14,000-member Advocacy Network of AKF Ambassadors to advocate on behalf of patients by:

• Urging members of Congress to ensure that hospitals and transplant centers are fully equipped with personal protective equipment (PPE), ventilators and staff and requesting that any kidney transplants delayed or postponed during the crisis be prioritized once it is over.
• Requesting that Congress include health insurance protections in the next COVID-19 federal aid package, including a special enrollment period for qualified health plans (QHPs) in the Marketplace/Exchange and providing a 65% COBRA subsidy so recently terminated employees can keep their insurance.
• Asking Congress to include language that would ban "surprise bills" in the next COVID-19 federal aid package. Surprise bills can be much higher than normal copays or coinsurance that consumers pay, and they have led to financial hardship and even ruin for some patients. Anyone with COVID-19 symptoms should be able to go to their doctor and in-network hospital for testing and treatment without the fear of affordability.

AKF has joined several coalitions urging the administration and Congress to take action on several important issues related to the COVID-19 crisis, including providing adequate personal protection for health care workers; providing additional funds to states for health care costs and providing financial protections to people diagnosed and treated for COVID-19.