Below is an op-ed about an important vote that will occur in the Senate, perhaps as early as today. It was written by Debora Moritz, a breast cancer survivor and the parent of a child with Tuberous Sclerosis Complex (TSC). As you can see, Debora feels passionately about the medical research programs for both TSC and breast cancer supported by the Department of Defense.
Skip the Bureaucracy/Continue to Save Lives
Innovative, life-saving medical research conducted by the Congressionally Directed Medical Research Program (CDMRP) is currently at risk because of bureaucratic provisions in the National Defense Authorizing Act (NDAA) drafted by the Senate Armed Services Committee chaired by our Arizona Senator John McCain.
The CDMRP is a unique streamlined program occupying a niche in medical research emphasizing higher risk exploratory research, new investigators, and innovative approaches. It responds quickly and efficiently to advances in research and clinical care. The peer review panels guiding prioritization and selection of research are comprised of basic scientists, clinicians and consumers. Patients themselves have a voice in what research will make the greatest impact in their lives.
I know because I’ve been a consumer reviewer; an intense, empowering experience guided efficiently and competently by the U.S. Army Material Command. Inclusion of consumer advocates and patients ensures the human dimension and true disease burden is recognized and responded to; administration by the U.S. AMC is fabulous peace time use of military expertise with low administrative overhead and little bureaucracy.
Provisions in the current draft of the NDAA would block the Department of Defense from continuing that vital research (section 756) and impose additional levels of bureaucracy (section 898). Why? Neither of these provisions addresses any identified problem. By all accounts the CDMRP has a proven track record of success. Why insert more government and more red tape into a process that is working and providing fabulous results?
Research from the CDMRP is changing lives, saving lives for the active duty military, veterans, their families and the people they lay down their lives to protect. Congressional support ensuring critical CDMRP research is continued is a small way of thanking our military for their service and recognizes the administrative efficiency and innovation that makes the program so successful.
CDMRP successes are not just advancing basic scientific understanding of diseases but changing clinical care. I am a breast cancer survivor. A few years ago I wouldn’t be because I have an aggressive form of breast cancer, HER2-Positive, which had a uniformly poor prognosis until research funded by the CDMRP led to the development of Herceptin. Now I and other breast cancer patients have a fighting chance. An Armed Services Health Surveillance Center study reported military women were 20–40% more likely to develop breast cancer and were evacuated from combat zones because of breast cancer more “than for any other condition.”
Progress is being made in treatments for other conditions. My son, Griffin, has a rare genetic disorder, tuberous sclerosis complex (TSC). A few years ago he developed a life threatening complication, tumors in the ventricles of his brain causing fluid to build pressure on his brain. The only intervention was surgical resection. He was not a good candidate for surgery because of the bilateral presentation, autism, intellectual disabilities and intractable epilepsy. CDMRP basic science research had pointed clinicians toward a cellular pathway providing potential drug targets as alternatives to surgery. A tiny clinical trial investigating one such drug saved my son’s life and so much more. Today, FDA approval of that drug has reduced the disease burden for thousands of people. This same class of drugs may provide treatment for traumatic brain injury; a rising injury for combat troops.
Let’s continue results oriented innovative research and skip the bureaucracy. Senator Dick Durbin (IL) is leading a bipartisan group supporting an amendment (SA4369) to remove those problematic, unnecessary provisions and keep life-saving research going. Ask your senators to say “YES” to research in the right place and producing results. Support the Durbin amendment. #ResearchNotRedTape