Supporting DOD Research for Fragile X

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Supporting DOD Research for Fragile X

Several years ago, NFXF Advocates were successful in adding Fragile X research to the Department of Defense’s Congressional Directed Medical Research Program (CDMRP) list of authorized research areas. Each year, the NFXF advocates for continuation of the program as a whole, both for funding and to even exist, as attempts are made by some in Congress to eliminate the program. We work with a coalition of groups toward this common goal because, as we say, Together, We’re Stronger.

This week the coalition sent a letter to key House and Senate members urging continuation of the program. Below is the text of the letter or you can download the House (PDF) and Senate (PDF) versions.


Dear Appropriations Committees:

As you begin work on the Fiscal Year 2019 (FY19) Defense Appropriations bill, we write to request your continued support for the critical and highly successful defense health research programs funded through the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense (DoD).  We deeply appreciate your support in a challenging fiscal environment for these programs during the FY18 budget process.  As in previous years, you both exhibited extraordinary leadership in ensuring continuity in funding and operations for defense health research programs. 

The highly innovative research portfolio supported by the CDMRP fuels scientific discovery by funding high impact research not sponsored by the National Institutes of Health (NIH), the Department of Veterans Affairs (VA) and other federal agencies. Many of the programs’ award mechanisms propel the exploration of revolutionary ideas and concepts.  Programs focus on the potential of having a significant impact upon both their respective fields of research and support and treatment for members of the military.  Defense health research programs are worthy of continued federal support for the following reasons: 

  • Directly relevant to DoD-prevalent conditions: The medical research programs at DoD directly impact the health and lives of the U.S. military, their families, veterans and the public.  Programs provide groundbreaking research on psychological health, Gulf War Illness, spinal cord injury, and hearing and vision loss (which comprise a significant portion of current battlefield injuries). Research also focuses on existing and emerging infectious diseases that may threaten operational readiness and health security, and why diseases like ALS and multiple sclerosis occur at greater rates in those who have served in the military.  The DoD’s defense health research program has also funded the orthopedic research program that has resulted in new limb-sparing techniques to save injured extremities and preserve and restore the functions of injured extremities.  

Equally important, this disease-specific approach includes important medical research programs related to several forms of cancer (breast, blood, colorectal, kidney, melanoma, pancreatic, brain tumors, lung, ovarian, prostate, stomach, liver and cancers related to radiation exposure) and other disorders (like neurofibromatosis and tuberous sclerosis complex) that have led to breakthroughs on nerve regeneration, traumatic brain injury (TBI) and post-traumatic stress disorder (PTSD).Page Break 

  • Complementary – and not duplicative – of other federal research:  Defense health research program grants neither duplicate nor supplant NIH or VA research efforts, but rather enhance those efforts. They fund highly innovative projects – support that is typically unavailable through other federal programs.  For example, programmatically- related VA research funding is only available to VA employees (at least 0.625 full-time equivalent). CDMRP funds the best-qualified proposals from researchers and research teams at top research universities and medical centers.  The NIH and DoD medical research portfolios have symbiotic relationships, allowing NIH-funded basic research to serve as a foundation for ground-breaking, disorder-targeted research at DoD.  NIH and DoD program officers meet regularly to ensure collaboration and prevent duplication.
     
  • Cutting-edge and focused on cures:  While the NIH funds high-quality basic biomedical research, the defense health research programs provide essential emphasis on and support for finding innovative cures or new therapies for medical conditions.  For several disorders, DoD breakthroughs have led to new clinical trials, new drug products, and novel procedures that are making a difference in the everyday lives of affected patients and families.  For example, research funded by DoD led to the development of the only treatment for tuberous sclerosis complex approved by Food and Drug Administration. The ALS Research Program is supporting translational research and has developed four potential treatments for the disease, for which an effective treatment currently does not exist. Enclosed is a detailed white paper providing many examples of breakthroughs that have benefitted active duty warfighters, veterans, military families and civilian populations. 

 

  • Agile, adaptable, and collaborative:  Each of the separate programs is guided by a specific vision and mission statement, which in addition to incorporating Congressional direction, reflect rapid change in knowledge, address research gaps, and prevent duplication.  Annual funding prevents out-year budget commitments, which in turn further enhances programmatic flexibility. Many DoD programs identify, develop and fund collaborative and consortium-based researchhelping to bring unique, interdisciplinary, inter-institutional, collaborative efforts to bear on complex medical research issues unlikely to be solved though the inherent limits of individual researchers. 

 

  • Competitive and unique peer review process:  While Congress allocates funding through the annual Defense Appropriations Act to specific medical conditions, it does not direct the programs’ dollars to specific researchers.  These programs utilize an efficient multi-tiered process that includes multiple stages of peer review, including two levels of formal peer review of final proposals. Proposals are scored in a number of key areas such as scientific merit and impact for patients and the military, providing a robust comparative basis for helping accomplish the program’s mission of finding and funding the best research related to these important medical conditions. 
  • Consumer review: All defense health research programs incorporate the full and equal participation of consumer reviewers at every stage of the multi-tiered review process – a novel and valuable practice in medical research funding.  Consumers – people actually affected by the disease or medical condition – help ensure the program’s funded research will have the greatest impact on those who are affected.  Consumer reviewers also help inform and educate their disease advocacy communities and others.  

 

  • Generating economic growth across the United States:  Research activities promote job growth and encourage long-term economic development through innovation.  It has been estimated that for every dollar awarded in biomedical research grants, more than $2 of additional business activity is created.  Defense health research grants are awarded to universities and institutes in every state in the country. 

In short, the well-executed and efficient programs within the defense health research programs demonstrate responsible government stewardship of taxpayer dollars and benefit current and former military service members, the general patient population, and our nation’s economy. 

Perhaps most importantly, DoD’s innovative approaches to funding biomedical research have led to several significant breakthroughs and achievements, contributing to national security and the health and welfare of U.S. Armed Forces personnel and their dependents.  Continued federal funding will only build on these successes.  

Lastly, we are encouraged by and supportive of your efforts to restore “regular order” and proceed expeditiously with committee markups of the fiscal year 2019 Defense Appropriations Act.  Continuing resolutions have had negative consequences for medical research, creating unnecessary instability and uncertainty in the grant solicitation, grant review, and grant making processes at DoD.  Enactment of a fiscal year 2019 Defense Appropriations Act will allow DoD to most effectively convene programmatic panels to identify and implement programmatic changes, effectively convene peer-review panels to provide thorough review of grant applications, and conduct appropriate negotiations to ultimately award FY19 grants. 

The undersigned respectfully request your support for FY 2019 funding of all programs within the defense health research programs.   

Sincerely,

Adult Congenital Heart Association
ALS Association
American Academy of Dermatology Association
American Academy of Neurology
American Academy of Ophthalmology
American Association for Cancer Research
American Autoimmune Related Diseases Association (AARDA)
American Brain Tumor Association
American College of Obstetricians and Gynecologists
American College of Rheumatology
American Diabetes Association
American Gastroenterological Association
American Liver Foundation
American Lung Association
American Psychological Association
American Thoracic Society
American Urological Association
Aplastic Anemia and MDS International Foundation
Arthritis Foundation
Association of American Cancer Institutes
Asthma and Allergy Foundation of America
Autism Speaks
Beyond Celiac
Bladder Cancer Advocacy Network
Celiac Disease Foundation
Children’s Tumor Foundation
Christopher & Dana Reeve Foundation
Citizens United for Research in Epilepsy
Coalition for National Security Research (CNSR)
Crohn’s and Colitis Foundation
CureHHT
Debbie’s Dream Foundation: Curing Stomach Cancer
debra of American
Digestive Disease National Coalition
Duke University
Duke University School of Medicine
Dystonia Medical Research Foundation
EB Research Partnership
Fight Colorectal Cancer
FORCE: Facing Our Risk of Cancer Empowered
Foundation to Eradicate Duchenne
GBS|CIDP Foundation International
Global Health Technologies Coalition
Harvard University
Hepatitis B Foundation
HIV Medicine Association
Hydrocephalus Association
Indiana University
International Foundation for Functional GI Disorders
International Myeloma Foundation
Interstitial Cystitis Association
KCAN-Kidney Cancer Action Network
Kidney Cancer Association
LAM Foundation
Leukemia & Lymphoma Society
Littlest Tumor Foundation
Living Beyond Breast Cancer
Lung Cancer Alliance
LUNGevity Foundation
Lupus Foundation of America
Lymphedema Research & Education Network
Lymphoma Research Foundation
Malecare Cancer Support
METAvivor
The Michael J. Fox Foundation for Parkinson’s Research
Michigan State University
Michigan Technological University
Muscular Dystrophy Association
National Alliance for Eye and Vision Research
National Alliance of State Prostate Cancer Coalitions
National Autism Association
National Brain Tumor Society
National Fragile X Foundation
National Kidney Foundation
National Multiple Sclerosis Society
National Organization for Rare Disorders (NORD)
National Psoriasis Foundation
National Vietnam and Gulf War Veterans Coalition
NephCure Kidney International
Neurofibromatosis Midwest
Neurofibromatosis Network
Neurofibromatosis Northeast
Ovarian Cancer Research Fund Alliance
Pancreatic Cancer Action Network
Parent Project Muscular Dystrophy (PPMD)
Penn State University
Princeton University
Prostate Cancer Clinical Trials Consortium
Prostate Cancer Foundation
Pulmonary Hypertension Association
Research!America
RLS Foundation
Scleroderma Foundation
Sergeant Sullivan Circle
Sjögren’s Syndrome Foundation
Sleep Research Society
Society of Gynecologic Oncology
Susan G. Komen
TB Alliance
Texas NF Foundation
Tuberous Sclerosis Alliance
University of California System
University of Iowa
University of New Mexico Health Sciences Center
University of Pittsburgh
US Hereditary Angioedema Association
Us TOO International Prostate Cancer Education & Support
Vanderbilt University
Vanderbilt University Medical Center
Veterans for Common Sense
The Veterans Health Council
Vietnam Veterans of America
Weill Cornell Medicine
ZERO-The End of Prostate Cancer

By | 2018-05-09T14:49:15+00:00 May 9th, 2018|Advocacy, Research|Comments Off on Supporting DOD Research for Fragile X