June 14, 2018
HHS Secretary Azar Meets with Kidney Disease and Rare Disease Advocates
On Wednesday, Secretary Alex Azar met with representatives from Kidney Care Partners, an umbrella organization representing kidney-disease nonprofits and companies, and the National Organization for Rare Disorders.
With Kidney Care Partners, Secretary Azar shared the Trump Administration’s interest in continuing to improve the quality of kidney-disease care provided in the United States, including through payment model advances, reductions in regulatory burden, and new pathways for reimbursement that may support innovation. Participants individually provided feedback on challenges for kidney-disease patients and advances in the kidney space, including the growth in home-based care and ways to support it.
At the kidney disease meeting, Secretary Azar was joined by HHS Acting Chief Technology Officer Ed Simcox, who oversees HHS’s support for KidneyX, a public-private partnership to advance innovation in kidney care.
With the National Organization for Rare Disorders, Secretary Azar expressed the Trump Administration’s strong support for biomedical innovation, including patient-focused drug development and drug pricing reforms to improve the affordability and access of rare disease therapies. The individuals meeting with the Secretary expressed interest in similar issues and support for the Food and Drug Administration’s recent efforts to end gaming of orphan drug designation loopholes.