What Legacy Do We Leave?

“Alzheimer’s is the most expensive disease in America, with costs set to skyrocket in the years ahead.”

This fact more than any other was the one most emphasized at the Alzheimer’s Advocacy Forum I attended recently in Washington, D.C. Without a significant increase in funding for research to find a cure and treatment to prevent this devastating disease, Alzheimer’s is on the road to help bankrupt America.

According to Dr. Francis Collins, Director of the National Institutes of Health (NIH),  “We are not, at the moment, limited by ideas.  We are NOT limited by talent.  We are, unfortunately, limited by resources…”

Some facts.  Nearly 1 in 5 Medicare dollars is spent on a person with Alzheimer’s.  In 2014, the total combined cost of Alzheimer’s treatment by Medicare and Medicaid will be $150 billion, yes, BILLION!  While only $566 million, yes MILLION, will be spent on Alzheimer’s research.

Compare that with the $5,418 million spent on cancer research, $2,078 on HIV/AIDS, and $2,015 million on cardiovascular disease.   The good news is that the millions spent on research for these diseases have produced dramatic results.  Thanks to aggressive research, the death rates for people with cancer, HIV/AIDS, and heart disease among others have been reduced dramatically, while the death rate for Alzheimer’s increased by 68% between 2000 and 2010!

Unless something is done, Alzheimer’s will cost an estimated $1.2 trillion, yes, TRILLION, by 2050.  Costs to Medicare and Medicaid will increase by nearly 500 per cent.

This is not a legacy we want to leave to our children and our children’s children!

The facts show that research has helped to significantly reduce the death rate for other major diseases.  Why not Alzheimer’s as well? So what can we do to change the trajectory of the current path this disease is leading us down?  As you know from my previous columns, Congress recently passed the National Alzheimer’s Act Project (NAPA), the first ever comprehensive plan to attack this disease on many levels.  It is now time for Congress to pass some follow up legislation to help ensure that the NAPA goals are met.

This is where you and I come in.  While I was in Washington I, along with nearly 900 other advocates from all over the country, met with our senators and representatives to share the stories of our personal experiences with Alzheimer’s and to ask them to support increased funding for research along with two bills:  the Alzheimer’s Accountability Act, and H.O.P.E., the Health Outcomes, Planning and Education for Alzheimer’s Act.  Now I am asking you to urge your legislators to do the same.

Ask them to increase our country’s financial commitment to finding a treatment and a cure for America’s most expensive. Although Congress did provide an additional $100,000 million for research for the 2014 fiscal year, Alzheimer’s research is still chronically underfunded.  For every $100 that the National Institutes of Health (NIH) spends on Alzheimer’s research, Medicare and Medicaid spend $26,500 caring for those with the disease.  We are asking our legislators to increase funding for Alzheimer’s research by $200 million in the fiscal year 2015.

  1. Ask them to co-sponsor the Alzheimer’s Accountability     (S2192/H.R.4351), requiring NIH scientists to submit an annual              budget directly to Congress and the President specifying the resources that they need to meet their established research milestones and timelines for implementing NAPA.  This will help Congress know quickly and exactly what the scientists need, and will avoid the usual cumbersome and time consuming bureaucratic process that budgets usually need to go through.  NIH has been doing this for cancer research since 1974.
  2. Ask them to co-sponsor the Health Outcomes, Planning and Education for Alzheimer’s Act, H.O.P.E. (S 709/H.R. 1507), which will improve access to early diagnosis, provide immediate care planning, and insure that the diagnosis is documented in the patient’s medicalThis act bundles together services Medicare already provides but does so separately.  Unfortunately, too many people have Alzheimer’s and don’t know it.  Early diagnosis is the key to planning care, deciding on treatment options, and possibly getting into clinical trials.  It ensures better coordination with other health care professionals who need to be aware that the person as Alzheimer’s, for instance in the case of emergency room treatment when the patient is disoriented, confused, or non-communicative.
  3. I have the names, addresses, email addresses and phone numbers of legislators if you are not sure where and how to get in touch with them.  And when you do, if you have a personal story to share, please include that in your message.  An important lesson I learned in Washington is that politicians are moved to action by personal stories more than by facts and figures. A world without Alzheimer’s.  That is the legacy we want to leave our children and our children’s children.

[Alzheimer’s Association.  2014 Alzheimer’s Disease Facts and Figures. 2014 Advocacy Forum Advocate’s Guide, April 7-9.

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