Dr. Gillespie goes to Capitol Hill to advocate for rare kidney disease

Dr. Gillespie goes to Capitol Hill to advocate for rare kidney disease

Dr. Barbara Gillespie, Vice President & Therapeutic Strategy Leader at Fortrea, recently participated in “Rare Kidneys on the Hill Day” on July 25^th, joining patients, caregivers, physicians and researchers on Capitol Hill to speak with members of Congress and raise awareness about rare kidney disease (RKD).

She attended this high-profile event through NephCure, where she was recently appointed to the Board of Directors. NephCure focuses on expanding research and improving care for people living with rare kidney disease, such as Focal Segmental Glomerulosclerosis (FSGS), including FSGS mediated by Apolipoprotein L1 (APOL1), IgA nephropathy (IgAN), and Membranous Nephropathy, among several others.

A unique Act for rare kidney disease

“As part of Rare Kidneys on the Hill Day, we spoke to members of the Congress about H.R. 6790, a bipartisan initiative known as the New Era of Preventing End-Stage Kidney Disease Act,” said Dr. Gillespie. “This was the first time a bill has ever contained the words ‘APOL1 kidney disease' which I'm happy about since this disease primarily impacts patients with African ancestry, so we need to address this health disparity."

Alongside 68 other NephCure advocates (includiing her 18 year old son and his friend) from 22 states, Dr. Gillespie met with several of our nation’s lawmakers to discuss several important topics, such as addressing disparities of kidney disease in Black Americans, reducing kidney failure, advancing research and the standard of care, enhancing physician knowledge and empowering patients and communities to take charge of their health.

Rare Kidneys on the Hill also provided an opportunity for RKD patients and families to educate members of Congress and put a face to rare kidney diseases. By sharing their stories, they hope to advance policies critical to the community, such as increased research funding, improved diagnostics and better access to treatments and care. The group collectively engaged 81 congressional offices and secured 8 new cosponsors for the New Era Act in 1 day, with hopefully more to come with ongoing discussions.

"This year, our goal was to highlight the importance of this legislation in improving early disease detection, enhancing education for doctors and patients, and increasing research efforts," wrote NephCure. "These measures could lessen the impact of RKD on people's lives and reduce costs for patients and the healthcare system in the long run. By making our voices heard, we are advocating for a brighter future for the rare kidney disease community."

Ongoing outreach to educate and build trust in the community

"It was great to collaborate with other passionate advocates, meet leaders on Capitol Hill, and be part of this important outreach effort. I want to thank NephCure for setting up my 7 meetings with the Congressional staff, and it was great to talk directly with Representative Jeff Jackson of North Carolina," said Dr. Gillespie.

Her efforts to make a difference for patients by going beyond the boundaries of the clinical research ecosystem haven’t gone unnoticed.

Beyond NephCure, Dr. Gillespie’s work continues to bridge industry, academia and patient advocacy organizations, and she hopes her efforts will result in earlier patient identification, faster enrollment and more efficient trials for sponsors, as discussed in a recent article in NEWS below.

“The more we speed up clinical development, the sooner we will get approved drugs into the hands of patients, see improved outcomes for people living with kidney disease and address current health disparities,” she said.

Learn more about Fortrea’s ongoing efforts to advance kidney disease research