Rally for Medical Research What's Going on in DC, and How Does It Affect Me? If You Want Your Voice to Be Heard in Support of Medical Research, Send an Email to or Call Your Us Representative and Senators. Write a Letter to the Editor or Op-Ed for Your Local Paper, or Gather a Group of Individuals to Schedule a Meeting with Your Member of Congress' District Office

By Bhattacharya, Prerana; Edelson, Vaughn | The Exceptional Parent, May 2013 | Go to article overview
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Rally for Medical Research What's Going on in DC, and How Does It Affect Me? If You Want Your Voice to Be Heard in Support of Medical Research, Send an Email to or Call Your Us Representative and Senators. Write a Letter to the Editor or Op-Ed for Your Local Paper, or Gather a Group of Individuals to Schedule a Meeting with Your Member of Congress' District Office


Bhattacharya, Prerana, Edelson, Vaughn, The Exceptional Parent


For children like Jordan Boucher, scientists are not men in white lab coats running around ivory towers, and biomedical research is not an abstract concept; it is tangible and life-giving. Jordan was diagnosed with acute lymphoblastic leukemia at 15 months old. After years of treatment, remission, and two relapses, doctors told her family that there was nothing more they could do. Fortunately, Jordan was referred to St. Jude Children's Research Hospital, where researchers had developed a bone marrow transplant procedure specifically aimed at Jordan's unique type of leukemia. Several months after her procedure, Jordan's test results showed no signs of cancer.

Jordan's father told his family's story at the Rally for Medical Research, (1) organized by the American Association for Cancer Research, on April 8th in Washington, DC. He spoke of "the value of hope, the power of gratitude, and the importance of research" in saving his daughter's life.

The United States is a world leader in medical research but, for the past decade, funding for the National Institutes of Health (NIH)--which awards hundreds of millions of dollars in funding for research and supports hundreds of thousands of scientists across the world--has been stagnant. Adjusted for inflation, this means our investment in research has been steadily declining. Treatments and medical devices that are the products of NIH-funded research improve the lives of countless individuals in the United States and abroad every day. However, budget cuts, including the current (as of this writing) five percent cuts through sequestration, will slow the pace of American innovation and reduce the number of stories like Jordan's. The rally was organized to encourage policymakers to make lifesaving medical research a national priority.

DID POLICYMAKERS HEAR THE RALLYING CRY?

In DC, budget plans and bills help bring medical research from the bench to the bedside, and there is currently some movement using both approaches.

Two days after the Rally for Medical Research, President Obama unveiled his budget for Fiscal Year 2014. The plan includes modest funding bumps for agencies that support life sciences research, such as the NIH, the National Science Foundation (NSF), the Centers for Disease Control and Prevention, and more. While it is hard for many of us to perceive $500 million as a "small" increase, the bump in the NIH budget of that amount will likely not be enough to cover the expected rise in costs due to biomedical inflation.

Still, a small increase is better than no increase, and the budget plan provides funds for interdisciplinary research and education, new manufacturing technologies, and innovative public-private partnerships--all of which have the potential to keep the US competitive when it comes to the global life sciences industry.

Some members of Congress are also paying attention to important public health initiatives. To wit, newborn screening is an essential public health program that celebrates its 50th anniversary this year. It ensures that all babies are screened for certain serious conditions at birth. For babies with the conditions, newborn screening allows doctors to start treatment before some of the harmful effects happen. In the US, more than four million babies receive newborn screening each year. (2) Recently, Congresswoman Lucille Roybal-Allard (D-CA) and Congressman Mike Simpson (R-ID) introduced legislation to reauthorize the Newborn Screening Saves Lives Act, which established national newborn screening guidelines and helped facilitate comprehensive newborn screening in every state. Before the act was passed in 2008, only 10 states and the District of Columbia required infants to be screened for all the recommended disorders. Today, 44 states and the District of Columbia require screening for at least 29 of the 31 treatable core conditions. (3) If Congress passes the reauthorization, it will extend support for states to improve and expand their newborn screening programs, support parent and provider newborn screening education, and ensure laboratory quality and surveillance.

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Rally for Medical Research What's Going on in DC, and How Does It Affect Me? If You Want Your Voice to Be Heard in Support of Medical Research, Send an Email to or Call Your Us Representative and Senators. Write a Letter to the Editor or Op-Ed for Your Local Paper, or Gather a Group of Individuals to Schedule a Meeting with Your Member of Congress' District Office
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