For clinicians committed to helping patients with end-stage kidney disease (ESKD) receive the care that best meets their needs, care decisions are often constrained by systemic and policy-level factors. While the patient-clinician relationship remains central to care decisions and quality, systemic access to preferred renal replacement treatments -- including living and deceased donor kidney transplantation -- is heavily influenced by regulatory frameworks. The Centers for Medicare & Medicaid Services (CMS) and the Health Resources and Services Administration (HRSA) establish the structural incentives, payment rules, and performance metrics that govern modern nephrology practice and patients' pathways to transplant.
A recent Nature article reported that the NIH has begun deprioritizing grant applications aiming to inform policymakers, including CMS and HRSA staff. This shift warrants critical examination. In organ transplant and advanced kidney care, translational health services research that informs policy is critical for determining patients' treatment options and examining whether they have a fair opportunity to pursue transplantation.
Gaps in Early ESKD Care
Over 120,000 patients transition to ESKD annually in the U.S. For most, the diagnosis is highly disruptive and bewildering, which makes it especially important for patients to receive appropriate care navigation support as well as education about treatment options. While this perspective is emphasized in clinical practice guidelines, observational data demonstrate that more than half (52%) of patients receiving in-center hemodialysis reported they were not educated about home peritoneal dialysis as a treatment option; a similar proportion (52.8%) reported they were not educated about transplantation.
