Saturday, September 21, 2013

NIH & NIA Fulfill $45 Million Pledge

Earlier this week, Dr. Francis Collins, director of the National Institutes of Health (NIH) fulfilled his promise to Alzheimer’s advocates to designate $40 million from his 2013 budget for Alzheimer’s research. I was one of more than 700 advocates at the Alzheimer’s Association Advocacy Forum, where Dr. Collins made the announcement that he was taking this unique step to show the NIH’s commitment to finding a cure for a disease that has baffled scientists for decades.

During his keynote address on April 23 at the forum, Dr. Collins said, “I so wish it could be more, but I hope you hear in this kind of a commitment the way in which we at NIH see this as an opportunity and responsibility. We also hope that moving forward we can put medical research back on the stable track that is needed in order to support the research and the researchers.”

The story in last week’s New York Times and USA Today both report that an additional $5 million has been designated by the National Institute on Aging (NIA) to provide support for innovative clinical trials.

Among the trials being supported through these additional funds is the Dominantly Inherited Alzheimer’s Network Trials Unit (DIAN-TU) trial at Washington University, St. Louis. Dr. Randy Bateman is the team leader. I met Dr. Bateman several years ago when he accompanied Missouri advocates on our visits with our legislators at the Alzheimer’s Forum in Washington, D.C. Hearing firsthand the possibilities of research to find therapies or a cure for early onset Alzheimer’s is encouraging in a way that reading about it cannot touch. Dr. Bateman is passionate about his work, confident, and optimistic that a cure can be found for the hereditary form of Alzheimer’s that can strike during early adulthood.

The APOE4 trials being conducted by Drs. Eric Reiman and Pierre Tariot at the Banner Alzheimer’s Institute in Phoenix will be fully funded in 2013. Several other trials are being funded to move them forward. An Allopregnaolone Regenerative Therapeutic study at the University of Southern California will evaluate the safety and tolerance of a natural brain steroid to treat Alzheimer’s disease. Other studies will analyze data collected from volunteers to identify promising therapies, test existing drugs currently used for other conditions for effective treatment of Alzheimer’s, and treatment based on targeting the immune system.

In a letter I received as an Alzheimer’s Ambassador, Alzheimer’s CEO Harry Johns said that the fulfillment of NIH’s pledge is historic. “In addition to fueling much needed research toward treatment, prevention, and ultimately a cure, it shows the growing recognition that our cause is receiving at the nation’s highest levels.” Johns praises hundreds of Ambassadors and hundreds of thousands of advocates for making the case in Washington, D.C., and in communities nationwide. In the Alzheimer’s Association news release, Johns said, “These studies are examples of the quality research in the pipeline that needs further funding in order to prevent and effectively treat Alzheimer’s disease by 2025 as outlined in the National Alzheimer’s Plan.”

Kudos to NIH and NIA for taking this first step toward prioritizing research for Alzheimer’s. Now, we need to keep pressing our legislators to take a proactive approach to finding a cure for this disease.

Alzheimer’s is an equal opportunity disease. It affects people without regard to race, religion, financial status, political party, intelligence, education, or any other classification you can think of. No human is immune to Alzheimer’s. It could happen to you or to someone you love if it hasn’t already.

It’s not a question of whether we can afford the research for Alzheimer’s, the real question iscan we afford not to fund research? Does it make sense to spend only $484 million on research that costs this country more than $140 billion annually in Medicare and Medicaid? Alzheimer’s is the sixth leading cause of death in the United States, yet the funding is minuscule when compared to research spent on other diseases which received billions annually to fund research.

Some of us have spent years advocating for Alzheimer’s research dollars. It can be frustrating when funding is stagnant, or worse yet, the years funding was cut. By hanging tough, advocates have fought for treatment equity for those living with Alzheimer’s and other dementias.

This is not the time to rest on our laurels, it is the time to step up our advocacy while the focus is on research. The ultimate goal is a world without Alzheimer’s, and it can be done.

Copyright (c) September 2013 by L.S. Fisher


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