Tuesday, May 9, 2017

An Eye on the Goal: A Cure for Alzheimer’s

Setting a goal is the first step to success. If you don’t know where you are headed, you don’t really know when you get there.

In the year 2001, our local Alzheimer’s Chapter Executive Director Penny Braun asked if I’d like to go to Washington, D.C., to the Alzheimer’s Forum. “We’re asking for research funding,” she told me. “The goal is one billion dollars.”

“Well, we need to find a cure, and I don’t mind asking for a billion dollars,” I said with full confidence. It wasn’t long before I discovered that research funding was way short of a billion dollars. Alzheimer’s was pushed firmly to the back burner and funding was so tiny it barely made a blip on the NIH budget.

So year after year, I packed my bags and went to D.C. with that illusive billion-dollar goal in mind. I can remember being challenged with, “And just where would we get that money?” and “We can’t ‘earmark’ NIH funds.” We inched a little higher, except for some of the tight budget years when we lost ground.

Things began to look up when the National Alzheimer’s Project Act was approved in 2010. This act required the Secretary of the Department of Health and Human Services to annually update the National Alzheimer’s Plan. The plan laid out a goal to prevent or find an effective treatment by 2025.

The Alzheimer’s Accountability Act of 2015 required scientists at NIH to submit an annual Alzheimer’s research budget to Congress. This “bypass budget,” and it lets Congress hear what scientist think should be in the budget for Alzheimer’s research to meet our goals. They determined that if NIH invested $2 billion in research, we could meet the goal.

It wasn’t easy to jump research funding from the mid-millions to $2 billion. It wasn’t not an easy sell, and it seems there was always a medical crisis that got the billions to stop them while the five million people with Alzheimer’s waited for a cure.

Alzheimer’s advocates are determined people! Alzheimer’s disease costs our country $259 billion annually, but research dollars have traditionally been tight. In 2015 (FY 16), we received a historic $350 million increase.  Once this increase was appropriated, the annual research budget was closing in on the billion-dollar mark at $991 million.

In 2016 (FY17), the Senate Appropriations Committee requested a $400 million increase which would bring our total to $1.4 billion. We celebrated with the appropriations chair Senator Roy Blunt at the 2016 Alzheimer’s Forum.

Then, this year, we received the bad news that NIH’s overall FY17 budget would be cut, and our historic increase was in jeopardy. We knew we were fighting an uphill battle to reach our goal. We weren’t sure if we had been successful, but our champions vowed to fight for us.

Once the budget was approved, my inbox was filled with “hip-hip hoorays” as Alzheimer’s advocates cheered the success of reaching our research goal.

In his letter to advocates, Alzheimer’s Association CEO Harry Johns said, “This has been a historic week for the Alzheimer’s Association, the Alzheimer’s Impact Movement (AIM) and our cause. As you know, on Monday, congressional leaders from both parties and both houses of Congress announced that the 2017 federal government funding bill includes the largest increase in history for Alzheimer’s research, $400 million. Today, the president signed that increase into law, bringing Alzheimer’s research funding at the National Institutes of Health (NIH) to nearly $1.4 billion.”

First goal reached (around at least since 2001): research funding of $1 billion. Next goal: finding a cure by 2025, or sooner! The sooner, the better. Keep an eye on the goal.

Copyright © May 2017 by L.S. Fisher

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