Rare Disease Report

AHC Families Call to Action: Advocate for Federal Funding of Medical Research!

APRIL 20, 2017
AHCF and Albert George, MD, Northwestern Medicine
Your help is needed to advocate for the funding of the 21st Century Cures Act and for increasing support for rare disease research through the NIH.
A proposal by the White House in March 2017 to cut the NIH budget by 18% would cripple medical research in the U.S.A. for years to come and endanger a new generation of innovative scientists at time when powerful new approaches are making it possible to accomplish work that could not be dreamed of just a few years ago.
Please call or email your congressional representatives and U.S. senators soon and tell them your child’s story to emphasize the importance of rare disease research to help fight Alternating Hemiplegia of Childhood and other rare diseases. Tell them to fully fund the 21st Century Cures Act and to boost, not slash, NIH funding. The airwaves and inboxes need to be flooded, your voice needs to be heard!
The National Institutes of Health (NIH) is the largest and most successful funder of medical research in the world, and is one of the best investments of tax payer dollars in terms of return on investment, job creation and business development. Nearly half of all drugs approved in this country between 1998 and 2005 were developed in part because of public-sector support including NIH funding. In 2015, NIH supported more than 350,000 jobs nationally. When income generated from these jobs along with the purchase of research-related supplies, equipment and materials is considered, the economic impact of NIH is estimated to be more than $60 billion.
Last December, the 21st Century Cures Act was signed into law with the purpose of strengthening medical research in the U.S.A., particularly in areas related to brain diseases, cancer and precision medicine. The various initiatives funded by the 21st Century Cures Act are expected to promote the discovery of new disease cures that will benefit many Americans.
This law received strong bi-partisan support, but has not been put into action due to the lack of an approved federal budget. The law follows several years in which the NIH budget remained ‘flat’ with no adjustment for the high rate of inflation typical of scientific research. This led to a severe loss of purchasing power for U.S.A. researchers, and an erosion of our leadership in medical research in the world. At the same time, other countries have expanded their funding of medical research and it is predicted that China will overtake the U.S.A. by 2019 as the world’s leader in medical research.
NIH funding is the only mechanism to provide multi-year funding for fundamental science in rare diseases. Medical research into the causes and treatments for rare diseases, such as AHC, is not done by pharmaceutical companies because of high risk and limited market value. The proposed cuts to the NIH budget are a direct threat to rare disease research, which is expected to be placed at a lower priority than more common disorders.
Rare disease research funding will be the first to get cut if the NIH budget is reduced” according to Dr. Alfred L George at Northwestern University. Dr. George along with his colleague Dr. Kevin Ess at Vanderbilt University have been studying AHC for the past few years with the support of AHCF. They are planning to submit a multi-year NIH grant in 2017. “Our chances of getting an NIH grant have been improved by the generous support from AHCF these past few years” says Dr. Ess. “But, if the NIH undergoes a drastic budget cut this year, then we may need to wait” he notes.

Talking Points:

  • Investing in medical research provides a strong return on investment, promotes job creation and business development
  • NIH supports more than 350,000 jobs nationally, and has economic impact in all states
  • NIH supports research into the causes and treatments of rare diseases, which is not done by the biopharmaceutical industry because of high risk and small market value
  • The 21st Century Cures Act enacted in 2016 will promote discovery of new disease cures that will benefit many Americans; funding this important law should be a high priority
  • Cutting the NIH budget by 18% would cripple medical research in the U.S.A. for several years to come and endanger a new generation of innovative scientists    
  • China could overtake the U.S.A. by 2019 as the world’s leader in medical research; this will occur sooner if federal funding for NIH is cut as proposed by the White House

To learn more about NIH and 21st Century Cures Act, click here.
To find your congressional representive and senator, click here

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