Policy Advances During the Dogs Days of Summer

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ASN's advocacy efforts take to the sky

Although transplantation is the ideal therapy for those living with kidney failure, there are nearly 90,000 people, including 1100 children, on the U.S. kidney waitlist. And albeit that the nation's organ transplantation system has made many gains in recent years that are worth celebrating, many opportunities are also within reach to better serve our patients by maximizing access to kidney transplantation.

ASN recently joined other organizations in advocating that congressional leaders urge the Federal Aviation Administration (FAA) to make a key change in how donated organs can be transported through the nation's commercial aviation system. As a result of protocol revisions brought about by the federal response to the September 11, 2001, attacks, organs are now transported in the cargo area of the airplane instead of the passenger area, unaccompanied and at greater risk of logistical issues in the cargo hold. Delays that increase cold ischemic time also increase the risk that an organ cannot be transplanted or may face reductions in quality, ultimately impeding patients' access to a successful kidney transplant. ASN and 17 other groups, including patient organizations and other health professional organizations, urged the U.S. Senate Committee on Commerce, Science, and Transportation and the U.S. House Committee on Transportation and Infrastructure to consider a legislative provision in the FAA's reauthorization for the next 5 years that would require the FAA to develop regulations to enable the safe and efficient transportation of a donated organ in the passenger cabin instead of in a cargo hold of an airplane (1). This change is one of several opportunities for improvement that ASN is requesting to ensure that transportation and logistical challenges cease to be a barrier to transplant for any patient.

The nation can secure its future for transplantation with the SUS OPTN Act

Introduced by Representatives Larry Bucshon, MD (R-IN), and Robin Kelly (D-IL) in the House and by Senators Ron Wyden (D-OR) and Chuck Grassley (R-IA) and six other bipartisan lead sponsors in the Senate, the Securing the U.S. Organ Procurement and Transplantation Network (SUS OPTN) Act provides an opportunity to help ensure that the nation's organ transplant network is as effective and efficient as possible (2). This bill would grant the Health Resources and Services Administration (HRSA) the statutory authority to fully implement HRSA's OPTN Modernization Initiative, which would include enabling more competition and new ways of thinking about certain aspects of the transplant system, ensuring good governance, and increasing the amount of funding that can be invested in improving the system. These changes aim to make certain that patients are served by the best in class in every aspect of the nation's transplant system and that the system is as transparent and efficient as possible for patients, nephrologists, and every other member of the care team involved in a patient's journey.

The House Committee on Energy and Commerce passed its version with unanimous bipartisan support on May 24, 2023, and the Senate version of the bill was referred to the Senate Committee on Health, Education, Labor, and Pensions on May 17, 2023.

“The SUS OPTN Act allows for reforms that represent crucial, foundational changes to ensure America's kidney health ecosystem serves patients as optimally as possible,” remarked ASN President Michelle A. Josephson, MD, FASN, on the bill's introduction.

The SUS OPTN Act is a result of years of advocacy by ASN and community stakeholder organizations to allow HRSA the flexibility to make improvements to—and greater investments in—the transplant system (3, 4). ASN plans to hold an advocacy day on Capitol Hill this summer in support of the bill. ASN will continue to work with Congress and the HRSA to ensure that the OPTN Modernization Initiative fulfills its aims, including that the HRSA works closely with patient organizations, health professional organizations, and other stakeholders in the policy development and implementation process.

ASN urges CMS to increase access to dialysis for people receiving hospice services

In May, ASN responded to the hospice request for information issued by the Centers for Medicare & Medicaid Services (CMS) in the fiscal year 2024 Hospice Wage Index and Payment Rate Update, Hospice Conditions of Participation Updates, Hospice Quality Reporting Program Requirements, and Hospice Certifying Physician Provider Enrollment Requirements proposed rule (5).

Only 25% of dialysis patients receive hospice services compared with 50% of the general Medicare population, and, of those on dialysis, nearly half receive hospice for less than 3 days. These figures are likely caused by how the current care model views dialysis and barriers caused by payment and reimbursement. Dialysis is narrowly portrayed as a therapy to prolong life rather than as a treatment that might be customized to manage symptoms and maximize comfort concurrently with hospice services. ASN believes that dialysis strongly aligns with the goals of hospice services to reduce symptoms and enhance quality of life for patients with a limited prognosis. Dialysis costs often greatly exceed a hospice service's daily reimbursement. Hospices receive a flat per diem rate between $150 and $200, whereas the base rate of dialysis averages approximately $250 per session.

ASN encouraged CMS to support the following:

  1. Broader coverage of concurrent hospice and dialysis (including transportation)

  2. Patients' ability to dialyze in a dialysis center with palliative approaches to dialysis care, allowing flexibility in the dialysis prescription to achieve patients' goals served with palliative or customized dialysis with hospice. This may involve exceptions to classical Quality Incentive Program measures.

  3. Upstream models of care including palliative care to assist with symptoms and goals of care for patients receiving or planning for maintenance dialysis. This would improve the patient experience as well as promote a more timely and smooth transition to hospice services.

ASN urged CMS to pursue reforms within its authority and to consider both concurrent hospice and dialysis as well as more palliative and customized dialysis approaches, while sharing that ASN will be reviewing necessary statutory changes with Congress.

HHS encourages states to adopt new strategies in Medicaid redeterminations

As the nation emerges from the COVID-19 pandemic, and Medicaid returns to its prior operations with full Medicaid renewals beginning, it is important to protect individuals and families from procedural termination. Noting that a number of individuals were unnecessarily losing coverage while monitoring Medicaid and the Children's Health Insurance Program enrollment, the Secretary of the Department of Health and Human Services (HHS) Xavier Becerra penned a letter to U.S. governors calling for each state to review its elected flexibilities and consider additional policy options to protect eligible individuals and families from losing coverage due to administrative processes. Secretary Becerra highlighted several existing and new flexibilities for states to consider adopting, including:

  • Spreading renewals over 12 months for all populations, providing more time to prevent systems from getting backlogged while ensuring that those eligible for continued coverage do not experience a gap in care, and those no longer eligible can easily transition to other sources of coverage

  • Strategically using data sources by renewing individuals based on their eligibility for other programs, such as the Supplemental Nutrition Assistance Program or Temporary Assistance for Needy Families, reducing the need for some individuals to complete and return a Medicaid renewal form

  • Partnering with managed care plans to help beneficiaries complete these forms and using data available from the U.S. Postal Service to update beneficiaries' contact information so they actually receive the renewal forms that states are disseminating

A full list of strategies that states are encouraged to use and adopt to protect eligible beneficiaries from inappropriate coverage losses is available (6).