Sending Office: Honorable Theodore E. Deutch
Sent By:
Joel.Richard@mail.house.gov

SUPPORT KIDNEY RESEARCH

Defense and LHHS Language Request

Deadline March 15, 2018

Current Signers: Deutch, Costello, Hastings, DeSaulnier, Danny K. Davis, Clarke, Lewis, Marino, Meehan,
Rice

Dear Colleague:

Please join us in supporting the inclusion of report language supporting funding for critical kidney disease research at the National Institutes of Health (NIH) and the Department of Defense Peer-Reviewed Medical Program by signing the letter below to the
Appropriations Subcommittees on Defense and L-HHS.

Focal segmental glomerulosclerosis (FSGS) is a rare and devastating kidney disease that is a leading cause of end-stage renal disease (ESRD). More than 5,400 patients are diagnosed with FSGS every year.  The number of annual diagnoses is rising, faster than
any other cause of Nephrotic Syndrome. It is one of the leading causes of Nephrotic Syndrome and kidney failure in children. Adults and children of all ages and races can get FSGS, but people of African ancestry have a diagnosis rate five times higher than
the general population.

We encourage you to support the below language request for NIH and Department of Defense PRMP research by joining these letters no later than COB Thursday, March 15, 2018. If you would like to sign on, please complete this
form. Contact Joel Richard (Rep. Deutch) at 5-3001 with any questions.

Sincerely, 

Ted Deutch                              Ryan A. Costello                Alcee L. Hastings
Member of Congress               Member of Congress         Member of Congress

March __, 2018

Dear Chairwoman Granger, Ranking Member Visclosky, Chairman Cole, and Ranking Member DeLauro:

Thank you for your leadership as the Appropriations Committee considers spending priorities for Fiscal Year (FY) 2019. We write to ask that you again include Focal Segmental Glomerulosclerosis (FSGS) as a condition eligible for study through the Department
of Defense Peer-Reviewed Medical Research Program (PRMRP) and to encourage continued research advancements in Focal Segmental Glomerulosclerosis (FSGS) and End-Stage Renal Disease (ESRD) at the National Institutes of Health (NIH), within the Committee Report
accompanying the bill.

FSGS is a rare disease that attacks the kidney’s filtering units (glomeruli) causing serious scarring which leads to permanent kidney damage and even failure. FSGS is a leading cause of end-stage renal disease (ESRD), kidney dialysis and transplantation.
FSGS is disabling, potentially fatal, and treatment options remain limited for affected individuals.

On average, veterans have a greater burden of chronic kidney disease (CKD) than the general population. Nearly 30,000 veterans suffer from ESRD and an additional 3,000 veterans are expected to reach ESRD each year. Almost 40% of people with ESRD are African
American. This health disparity is particularly striking in young African American men of the age typical for active duty service, as rates of kidney disease in men 20-40 years old are as much as 20-fold higher in African Americans than the general population.

Researchers suggest there are new opportunities for investigating FSGS in the military population with respect to environmental exposures. An in-depth characterization of military FSGS cases using the Department of Defense serum bank to look at baseline
and subsequent exposures could lead to a new area of investigation with immediate relevance to military readiness, troop health and the cost of long term medical care for CKD. Please support the inclusion of Focal Segmental Glomerulosclerosis (FSGS), as a
condition eligible for study through the PRMRP during consideration of FY 2019 appropriations for the Department of Defense.

In recent years, research coordinated by the National Institutes of Health (NIH) has improved our scientific understanding of glomerular diseases, including discovering the role that the APOL1 gene plays in the onset of FSGS in African Americans. More should
be done though to advance research activities and improve the lives of families impacted by glomerular diseases. NIH is also at the forefront of increasing critical research into end-stage renal disease (ESRD).

The language below builds upon glomerular diseases recommendations that the Subcommittee has made in the past, including through the Committee Report accompanying the FY 2018 House LHHS Appropriations Bill.       

1. National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at NIH:

End-Stage Renal Disease (ESRD).—The Committee recognizes the work in supporting critical kidney research that NIDDK has accomplished including end-stage renal disease (ESRD). The Committee notes the recent GAO report on research funding and encourages
NIDDK to continue working with stakeholders to disseminate critical information and discuss new opportunities for research.

2. National Institute on Minority Health and Health Disparities (NIMHD) at NIH:

Focal Segmental Glomerulosclerosis [FSGS].—The Committee recognizes the work that NIMHD and NIDDK are doing to address the connection between the APOL1 gene and the onset of FSGS. The Committee encourages NIMHD to work with community stakeholders
to identify areas of collaboration.

Thank you for your consideration of this request.

Sincerely,

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