Advocacy plays an important role in advancing kidney-related legislation
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Key takeaways:
- Legislation has been passed to improve the state of kidney care.
- Funding is needed to continue improving kidney health.
SCOTTSDALE, Ariz. — Advocacy groups succeeded at placing kidney disease front-and-center on the roadmap to legislative support in Washington, but more improvements are needed, according to presenters at the Southwest Nephrology Conference.
Lauren K. Drew, JD, director of congressional relations at the National Kidney Foundation, told attendees that several bills are under development in Congress that will benefit patients with kidney disease.
The Living Organ Donor Protection Act would prevent discrimination against living donors and is sponsored by Sens. Kirsten Gillibrand, D-NY, Tom Cotton, R-Ark., and Gerald Nadler, D-NY. Another bill being curated is the Improving Access to Home Dialysis Act, which is designed to add coverage for staff to coach patients during the initial 90 days of home dialysis and to improve wait time for patient training.
The Organ Transplantation Transparency, Accountability and Reform Act is a newly drafted bill in response to what some have seen as recent failures in the organ transplantation system.
“It is a very, very hot topic on Capitol Hill right now,” Drew said. The NKF is supporting all three bills, Drew said.
The first part of the Organ Transplantation Transparency, Accountability and Reform Act focuses on increasing access to transplantation through grants. The second part focuses on transparency to improve patient decision-making.
Transplant drugs
Mark E. Neumann, BA, editor-in-chief of Healio/Nephrology News & Issues, offered details on recent legislation supporting nephrology, as well as updates on regulatory issues and FDA approvals of drugs for treating kidney disease.
Passed 2 years ago and put into effect this January, the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act was designed to help patients who did not have coverage for immunosuppressive drugs. According to Neumann, the act offers lifetime coverage of immunosuppressive drugs to kidney transplant recipients younger than 65 years. The coverage comes with a premium of $97.10 a month, a 20% copay and it does not offer Medicare enrollment to cover other medical needs. Additionally, eligible patients must receive the transplant at a Medicare-approved facility.
In regard to payment models, Neumann cited an update to the Medicare Physician Fee Schedule, which includes a 1% increase for nephrologists in 2023 based on an increased value placed on services provided to patients.
Further, the Prospective Payment System has been updated with a 3% increase to the base rate for dialysis facilities ($257.90 to $265.57 per treatment) for 2023, but the Renal Healthcare Association has protested the increase, saying the increase should be higher due to higher costs related to staffing shortages and other needs.
Federally approved drugs
Recently, the FDA approved daprodusat (Jesduvroq, GSK), the first hypoxia-inducible factor prolyl hydroxylase inhibitor to treat anemia in patients on dialysis. However, a drawback to this approval is that physicians prescribing this drug must wait for a patient to be on dialysis for at least 4 months.
“The question is,” Neumann said, “by that time the patient has become acclimated to the injectable ... What is the incentive for a doctor to switch to the other drug?”
Additional FDA approvals include a drug to treat gout and empagliflozin to reduce kidney progression. In addition, a new phosphorous drug is under review.
Future legislation
Drew noted the recent Health Resources Services Administration (HRSA) Modernization Initiative that will bring accountability and transparency to the Organ Procurement Transplant Network. Neumann also reviewed the initiative, which intends to release new patient-friendly organ donor and transplant data. The contract between HRSA and United Network of Organ Sharing ends in 2024, but the bidding process had not started yet, Drew said.
Funding
“We are currently treating kidney disease when we really need to be treating kidney health,” Drew said in the presentation.
Although the recently passed bills can improve patient outcomes, Drew said, funding for kidney awareness remains an issue.
According to Drew, the priorities set by the NKF include obtaining increased funding for the CDC and NIH. Funding will save the federal government money overall, and preventing kidney disease will improve outcomes – physical and financial.
“It could bankrupt the Medicare trust fund; kidney disease alone could do that if we don't change the way we are taking care of patients,” Drew said.
In 2023, a priority of the NKF is to request Congress to increase funding for the CDC-Chronic Kidney Disease Initiative to $15 million. It has recently increased from $2.5 million to $4.5 million.
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Drew LK and Neumann ME. Legislative update on kidney care initiatives. Presented at: Annual Southwest Nephrology Conference. March 23-24, 2023; Scottsdale, Ariz.
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