A Weekly Advocacy Message from Research!America: Long-term commitment, short-term action. We need both.
Dear Research Advocate:
In a terrific op-ed in the Sacramento Bee, Greg Sorensen, MD, CEO of Siemens Healthcare North America and Research!America board member, writes about a young girl, Kayla Saikaly, diagnosed with aplastic anemia at 13-years-old and the life-saving bone marrow transplant she received at Southern California’s City of Hope Hospital.
FASEB Vice-President elect and Director of the Human Genetics Program at Sanford-Burnham Medical Research Institute, Dr. Hudson Freeze, appeared on a segment of San Diego’s U-T TV daily program “The Roger Hedgecock Show” with Morgan Fischer, an 8-year-old girl with a disorder called hypophosphatasia that severely hinders proper bone formation. Dr. Freeze discussed a groundbreaking therapy that has enabled the growth of new bone tissue in Morgan and other patients with this rare disease, dramatically improving the quality of their lives.
Whether or not Congress fosters medical progress through robust research funding and policies incentivizing private-sector medical innovation is not an academic discussion. It’s decision-making that bears on the lives of real people. It’s about Kayla and Morgan.
The theme underlying Research!America’s Medical Progress NOW initiative is that as Congress considers a variety of proposals aimed at generating more medical progress in the future — supplemental funding strategies, ways to make the innovation pipeline work smarter and faster over time — there is an opportunity to take action this year to reinvigorate medical progress. That opportunity is the FY15 appropriations process, and we ask appropriators to seize it. Kids like Kayla and Morgan, Americans all over our country fighting for the chance to lead normal lives or simply hold on to the lives they have, can’t place their illnesses on pause while Congress chooses between long-term commitment and short-term action. We need both. We need FY15 appropriation levels that enable medical and health research to flourish, not flounder. Read our letter to the leaders of the House and Senate Appropriations Committees here. And please send a note to your representatives in Congress urging them to speak up about the need for medical progress now. Continue reading →
Research that protects kids and patients is on the chopping-block. Why?
Legislation is being developed in the House of Representatives that would severely restrict or eliminate the appropriations funding mechanism for the Agency for Healthcare Research and Quality, the Administration on Children and Families, the National Center for Health Statistics and other programs charged with protecting children and patients. If the legislation passes with no alternate means of keeping this work going, Americans would lose the benefit of research that translates medical progress into safe healthcare, makes sure new medical treatments reach patients in rural as well as urban areas, prevents deadly medical errors, and protects at-risk children in the foster care system.
Help nip this legislative effort in the bud. Before Members of Congress take away access to information that saves the lives of children and other Americans, they should explain why saving those lives isn’t important.
By Ellen L. Woods, President of the American Foundation for Pharmaceutical Education
The American Foundation for Pharmaceutical Education (AFPE) is a national nonprofit organization located in Arlington, VA. AFPE was founded in 1942 and is the oldest pharmacy foundation in the nation. Now for more than 70 years, AFPE has provided fellowships, scholarships and grants to help educate thousands of the very best and brightest students in the pharmaceutical sciences in preparation for distinguished careers.
AFPE fellows engage in important, cutting-edge drug research that affects health outcomes in areas across the spectrum, from diabetes, heart disease, cancer, obesity, Alzheimer’s and other life-threatening conditions to medication adherence, arthritis, pregnancy, aging and smoking cessation. This sort of research lays the foundation for the health of generations to come.
The nation’s promising pharmaceutical scientists and their academic institutions have been significantly impacted by the diminished funding from federal agencies. AFPE and other nonprofit organizations attempt to fill that void. Students enrolled in pre-doctoral, PharmD and undergraduate programs in pharmacy look to AFPE to support their research endeavors. When not burdened by continuously seeking funding, researchers can more effectively spend time on research and innovation to improve public health. The investments AFPE makes in U.S. schools of pharmacy ultimately have a positive impact on patient health and fuel the economy.
AFPE is grateful for the unified voice and the partnership that Research!America provides to ensure that investment in research continues to keep pace with the need.