A 'rare' sighting on Capitol Hill: AKF advocates participate in second Rare Kidney Disease Advocacy Day

On Sept. 18, we hosted our second Rare Kidney Disease Advocacy Day, connecting patient advocates and health care professionals with lawmakers on Capitol Hill. During this advocacy day, members of AKF's recently launched Rare Kidney Disease Action Network (RKDAN) were paired with AKF staff members to participate in meetings with their elected officials. 

Representing 17 states, 23 advocates had 53 meetings with their senators' and representatives' offices, including nine meetings with members of Congress in attendance. 

In these meetings, advocates shared their personal experiences to encourage elected officials to support legislation that would positively impact people like them who are living with a rare kidney disease like IgA nephropathy (IgAN). Specifically, participants urged House of Representatives offices to co-sponsor the New Era of Preventing End-Stage Kidney Disease Act (H.R. 6790) and Senate offices to consider introducing a Senate version of the bill. In addition, advocates asked offices to support the Access to Genetic Counselor Services Act of 2023 (H.R. 3876/S. 2323).

Here's more information about each of these important bills. 

New Era for Preventing End-Stage Kidney Disease Act of 2023 (H.R. 6790)

This legislation aims to improve the understanding and timely and accurate diagnosis of rare kidney diseases. There are about 150 rare kidney diseases and most of them have no FDA-approved treatments. Additionally, many patients with rare kidney diseases struggle to receive an accurate diagnosis and expert treatment.

Treatment and diagnostic barriers, coupled with a lack of awareness and education around rare kidney diseases, often cause a delay in diagnosis. This delay can result in a rapid decline in kidney function and ultimately kidney failure, where the only options for survival are dialysis or a transplant.

Among its provisions, H.R. 6790 would create Centers of Excellence at the National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK) to study the causes, diagnosis, progression and treatment of rare kidney diseases and increase public awareness of rare kidney diseases, particularly in rural and underserved communities. The Centers would develop resources for clinical research, training, diagnosis, prevention and treatment of rare kidney diseases.

The bill would also require the Health and Human Services Secretary to submit a study to Congress focused on understanding and slowing the progression of rare kidney diseases through early intervention, testing and treatment. The study would examine the quality and reliability of kidney biopsies and the use of genetic tests, including the use of genetic and genomic tests in detecting the APOL1 gene. (Find out more about APOL1 gene mutations and APOL1-mediated kidney disease.)

The Access to Genetic Counselor Services Act of 2023 (H.R. 3876/S. 2323)

This legislation would change Medicare law so the program would recognize genetic counselors as health care providers, enabling them to be reimbursed directly by Medicare and giving Medicare beneficiaries greater access to genetic counselors' services.

There are several kidney diseases that have a genetic component, including autosomal dominant polycystic kidney disease (ADPKD), Alport syndrome and APOL1 mediated kidney disease. Patients with conditions such as these may benefit from genetic counseling and testing, which could allow for the development of preventive screening and specific treatments based on their genetic results. This may shorten the length of time to get an accurate diagnosis and reduce the use of ineffective treatments based on inaccurate diagnosis.

For more information on genetic testing, please visit our website.

AKF is grateful for the patient advocates, health care professionals and our corporate sponsors Novartis Pharmaceuticals Corporation, Otsuka America Pharmaceutical, Inc. and Travere Therapeutics for their efforts to help us advocate for policies that will improve the lives of those living with rare kidney diseases.

Interested in helping fight for positive change for the kidney community? Sign-up for the Mobile Advocacy Network here, or by texting "KIDNEY" to 52886.

Click here to contact your elected officials through our website and ask them to cosponsor the New Era of Preventing End-Stage Kidney Disease (H.R. 6790) and the Access to Genetic Counselor Services Act (H.R. 3876/ S.2323).