Kidney Care Partners (KCP) – a non-profit coalition of more than 30 organizations, comprising patients, dialysis professionals, physicians, nurses, researchers, therapeutic innovators, transplant coordinators and manufacturers – has submitted comments through the Centers for Medicare & Medicaid Services (CMS) to the U.S. Department of Health & Human Services (HHS) in response to the Agency’s request for information (RFI) on kidney care improvements. This request focused on how to advance equity and reduce disparities in organ transplantation, improve life-saving donations, provide individuals with CKD with access to more preventative services, promote greater care coordination for individuals receiving dialysis and empower individuals when making decisions about their treatment options, including removing socio-economic barriers to selecting home dialysis.
“We’re very pleased to see HHS and CMS spotlight the unique needs of the more than 37 million Americans living with kidney disease, kidney failure, and kidney transplants by calling on the kidney community to come together with actionable, tangible recommendations to improve care,” said John P. Butler, Chair of KCP. “Given that individuals with kidney disease are disproportionately from communities of color and often experience inequities in the delivery of care, now is the time to investigate, invest in, and implement policies that will improve access and choice to quality care and innovations for all.”
The response letter, written with input from leadership among KCP members from across the kidney care continuum, addresses a broad range of topics, emphasizing improving the organ and transplantation ecosystem and delivering care to individuals with chronic kidney disease (CKD) and end stage renal disease (ESRD). KCP brought together experts in each of the topic areas of the RFI – CKD, dialysis, and transplant – in a series of half-day working sessions to build the consensus recommendations.
Regarding transplants, KCP’s letter notes that “the current processes involved in waitlisting a patient leads to only a fraction of patients being actually listed.” Policy recommendations to address this issue include enhancing education and communication to patients around transplant, increasing transplant data transparency and addressing patient access issues, among others.
KCP specifically calls on HHS and CMS to “eliminate the silos within the health information system and ensure that all providers in the kidney care community can have a 360-degree view of patients’ health data” to improve care coordination and patient outcomes.
KCP also recommended that “HHS work across its agencies and with other stakeholders to slow the progression of CKD and empower patients to select the modality that works best for them” when considering their health care choices.
The comment letter specifically highlights the work of Senators Ben Cardin (D-MD) and Roy Blunt (R-MO) along with Representatives Terri Sewell (D-AL) and Vern Buchanan (R-FL) who have introduced The Chronic Kidney Disease Improvement in Research and Treatment Act of 2021 (H.R. 4065/ S. 1971) that would address shortcomings of the current Kidney Disease Education benefit (KDE) in Medicare and expand it to allow more patients access to KDE services and permit more providers to offer these services. The legislation would also increase awareness among beneficiaries by incorporating CKD screening in the annual Medicare wellness visit.
Additional recommendations in KCP’s response include expanding telehealth access, increasing education and awareness of kidney disease and incentivizing providers to help slow disease progression to delay or avoid ESRD altogether.
KCP also calls on the Administration to remove artificial restrictions that make it difficult for dialysis facilities and nephrologists to support patients whose socio-economic status creates barriers that can prevent them from accessing home dialysis options or receiving a transplant.
“The potential for individuals with kidney diseases to live longer and fuller lives is better than ever, but there’s still much more to be done,” said Michele Kimball, Executive Director of KCP. “KCP has always been a leading advocate for patients and pro-patient policies, and we look forward to working with HHS, CMS, and other stakeholder groups to expand options and choices for patients that drive changes for even better access to quality care and improved outcomes.”
To view the full response from KCP, click here.
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