ASN Joins Forces with Patient Advocates to Advance Kidney Health on Capitol Hill

Continuing an annual tradition, ASN leaders went to Capitol Hill for Kidney Health Advocacy Day on April 25, 2013. In a first for ASN, society leaders teamed up with patient advocates from the American Association of Kidney Patients (AAKP) and Dialysis Patient Citizens (DPC) for meetings with congressional offices in the House and Senate about issues of importance to ASN and the kidney care community. ASN, AAKP, and DPC met with more than 40 congressional offices, and met personally with members of Congress in one of every four meetings. ASN, AAKP, and DPC participants advocated for three key issues: Transplant legislation, medical research funding, and the Kidney Health Initiative (KHI).

Besides meeting with lawmakers from their own states, advocates also met with congressional leaders and members of Congress who sit on committees that have jurisdiction over the issues discussed, either from an “authorizing” perspective (meaning that the committee can tell a certain program or agency what it is allowed to or must do), or from an “appropriations” perspective (meaning that the committee is in charge of determining how much funding an agency or a program receives).

“ASN was thrilled to partner with AAKP and DPC to advance these important issues on Capitol Hill,” said ASN President Bruce A. Molitoris, MD, FASN. “A collaborative effort to present both patient and physician perspectives strengthens our advocacy case for what we are asking Congress to do for those affected by and at risk for kidney disease.”

DPC President Eric Edwards commented, “Given that ASN and DPC share many of the same policy priorities, joining forces for Kidney Health Advocacy Day was a natural partnership that I believe advanced our goals for patients. We look forward to continuing to work together.”

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“Collaborating to raise congressional awareness about kidney disease and ask lawmakers to take the steps our organizations believe would help patients with kidney disease was a great success,” said AAKP President Sam Pederson.

Making the case for transplant legislation

Advocating for the passage of two transplant-related bills is a top ASN public policy priority for 2013. ASN leaders and patient advocates discussed the Comprehensive Immunosuppressive Drug Coverage Act and the HIV Organ Policy Equity (HOPE) Act in meetings and encouraged members of Congress to support these common-sense pieces of legislation.

The Comprehensive Immunosuppressive Drug Coverage Act (or “Immuno Bill”) would guarantee lifetime immunosuppressive drug coverage to the thousands of Americans who receive kidney transplants through the Medicare End Stage Renal Disease (ESRD) Program. Although patients who receive a kidney transplant must take the immunosuppressive drugs every day for the rest of their lives to prevent organ rejection, Medicare only provides the drugs for 36 months. After that time, many patients who are no longer eligible for Medicare have difficulty obtaining coverage or purchasing the drugs themselves. Patients who can’t take their drugs lose their kidney and wind up back on dialysis, which costs Medicare more than the immunosuppressive drugs otherwise would and reduces many patients’ quality of life.

“Some patients don’t even apply to be wait-listed on the transplant list as they know they can’t afford the drugs and continue on dialysis indefinitely,” DPC member and patient advocate Michael Dickerson pointed out in congressional meetings. Dickerson, a college student who plans a career in nephrology, was diagnosed with CKD at an early age and after two kidney transplants is now back on dialysis.

“I have personally cared for patients who have lost their transplant because they could not afford the drugs they needed and were devastated to lose their gift of life,” said ASN Transplant Advisory Group chair Michelle Josephson, MD. “It was gratifying to advocate for legislation that would prevent other patients from going through that hardship.”

By making sure all patients get the drugs they need to keep their kidneys healthy, the Immuno bill would provide a cost-effective solution that will not only improve the lives of countless kidney transplant patients, but also use limited federal resources more effectively. AAKP, ASN, and DCP are committed to continuing to press for passage of this bill beyond Kidney Health Advocacy Day and in collaboration with the larger transplant and kidney communities.

Urging Congress to sustain medical research funding

In meetings with House and Senate appropriators and other lawmakers, ASN leaders and AAKP and DPC patient advocates discussed the significant prevalence of kidney disease and the expense of treating it and highlighted the imperative of supporting the National Institutes of Health (NIH), including the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and the Department of Veterans Affairs (VA) research budgets. Advocates also highlighted the significant racial and ethnic disparities in kidney disease, and encouraged more research to elucidate and eliminate them.

More than 20 million children, adults, and veterans have kidney disease, the eighth leading cause of death in the United States today. The nearly 600,000 individuals who have end stage renal disease (ESRD) comprise less than 1 percent of Medicare beneficiaries but account for nearly 7 percent of Medicare’s budget. Investing in medical research is crucial to improve patients’ lives and give health care professionals the tools they need to reduce these costly statistics.

Moreover, the combination of an aging population and epidemic increases in obesity and diabetes means the number of Americans with kidney disease will continue to escalate without investments in research. Research advances that can halt or slow progression to ESRD—or make dialysis more efficient—can yield significant savings to Medicare.

“Highlighting the fact that publicly funded research supports one in 500 full-time U.S. jobs, and every dollar invested in medical research generates $2.60 of economic activity, was a very effective way to help congressional staff visualize the benefits that research is bringing to their communities back home today,” said Public Policy Board chair Thomas H. Hostetter, MD.

In discussing the VA, advocates highlighted the Million Veterans Program, the largest longitudinal study ever undertaken to study how genes affect diseases. Blood samples and health information have already been collected from more than 150,000 veterans. At a recent Friends of VA Medical Care and Health Research (FOVA) briefing on Capitol Hill, VA Chief Research and Development Officer Joel Kupersmith, MD, said new funding is needed for the cutting edge research, including kidney disease, that will lead to discoveries that advance health care not just for our nation’s veterans, but for all Americans.

Kupersmith also noted that kidney disease affects a great number of veterans disprortionate to the general population and highlighted the importance of continued VA research funding for efforts such as studying the deleterious pharmacokinetic effects that medications for treating diabetes, hypertension, and other diseases often have on the kidney.

In their meetings, ASN, DPC, and AAKP urged support for the research and kidney communities’ requests of at least $32 billion for NIH, including $2 billion for NIDDK, and $611 million for VA research in the 2014 fiscal year, the minimum investments necessary to avoid the loss of promising research like APOL1 and the Million Veterans Program. They also addressed concerns related to sequestration and the importance of ensuring it does not undercut investments in research.

Leading up to Kidney Health Advocacy Day, ASN laid the groundwork on the medical research advocacy front by:

Joining nearly 300 organizations in opposing continued cuts to NIH in a letter to the President and Congress.

Joining 425 organizations in a letter to the House and Senate Budget Committees requesting $65 billion for all discretionary public health and health research programs in 2014.

Submitting written testimony about the value of NIH and NIDDK research to the House and Senate Appropriations Committees.

Collaborating with the American Society of Pediatric Nephrology (ASPN) to send the House and Senate Appropriations Committees a letter requesting $2 billion for NIDDK that was signed by numerous other members of the kidney community representing patients, providers, and industry.

Participating in FOVA meetings with House and Senate VA Committees to urge support of at least $611 million for VA research, as well as $50 million for up to five major research facility construction projects and another $175 million for minor construction and non-reoccurring maintenance.

Advancing the Kidney Health Initiative (KHI)

In addition to advocating for the Immuno Bill and HOPE Act, and trumpeting the value of investing in medical research, some ASN leaders—and AAKP President and Kidney Health Initiative Board of Directors member Sam M. Pederson—highlighted the Kidney Health Initiative. Focusing on members of Congress who sit on committees with jurisdiction over the FDA, advocates explained the goals, structure, and progress of the public-private partnership between ASN and FDA that aims to bring the kidney community together to improve patient safety and foster innovation in nephrology.

“It’s important that Congress know what FDA and the kidney community are doing to try to advance the therapies available to people with kidney disease,” commented Mr. Pederson, a kidney transplant recipient and previous CAPD patient.

ASN is grateful to the society’s leaders and the AAKP and DPC patient advocates for helping make Kidney Health Advocacy Day a success. The society will continue to engage Congress in the months to come as the budget process plays out and other legislation important to society members and the patients ASN serves moves forward.

May 2013 (Vol. 5, Number 5)