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Alzheimer’s Association Advocacy Forum 2015


For a number of years now, I have attended the advocacy forum in Washington DC as an ambassador for the Alzheimer’s Association. It is amazing to see such a wide range of people from all over the country gathered in the same room for the same purpose- to push for an end to Alzheimer’s disease.

I thought I would let you know exactly what we’re doing, the messages and the reasons behind them.  Tomorrow a sea of 1000 purple advocates will march on Capitol Hill.

Here is the broad message:

  • Alzheimer’s is the most expensive disease in America
  • Alzheimer’s is over-taxing state and federal budgets
  • Alzheimer’s is devastating to patients and their loved ones

Here is the staggering truth:

  • NIH will spend $586 million on Alzheimer’s research in 2015, but…
  • Medicare and Medicaid will spend $153 BILLION on caring for people with Alzheimer’s in 2015
  • Despite the growing burden of the disease, the chronic underinvestment in Alzheimer’s research persists.

Here is the obvious truth:

  • There is no way to prevent, slow, or cure Alzheimer’s disease- there will be more people with the disease than this nation can afford to care for ($1.1 TRILLION in 2050).
  • Investment in research is the only way to change this reality.
  • In other diseases where research has been heavily funded, significant gains in treatments and cures have resulted.

Here is how we’ll turn this ship around:

  • If we develop a treatment by 2025 that delays the onset of Alzheimer’s by just five years, then…
    • 5.7 million people expected to develop Alzheimer’s would not in 2050.
    • Families would save $87 billion in 2050.
  • If we achieve the National Alzheimer’s Plan 2025 goal, there would be a total savings of $220 billion over the first five years.
  • A federal research investment of $2 billion a year, as suggested by the scientific community, would be recouped in the first three years after a treatment became available.

Here is the financial ask:

  • Request senators and representatives to send a letter to the Appropriations Committee in support of a $300 million increase for Alzheimer’s research

Here is the legislative ask:

  • Support of the HOPE for Alzheimer’s Act.  The Health Outcomes, Planning, and Education (HOPE) Act will ensure Medicare beneficiaries newly diagnosed with Alzheimer’s disease and their families receive comprehensive care planning services.

The interesting part of this experience is that Alzheimer’s is a bipartisan issue.  Red + blue = purple.  Everyone knows someone.  Everyone is at risk.  Alzheimer’s doesn’t discriminate.

I am prepared to hear the question, “How can we afford to do this?”

I am prepared to answer, “How can we not afford to do this?”

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  1. Thanks for the great summary. Among other things, $153 billion in Medicare and Medicaid cost is outrageous. At some point, the world needs to pull the heads out of the sand.

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