Karen Cyphers: What do Steve Southerland’s daughter’s friends have to do with Alzheimer’s funding?

Policy textbooks say that when considering alternatives, all equal, invest in the one that will have the greatest reach.

But the political process has an appetite for eating good ideas, leaving just piecemeal chunks on the bone.  No shock there, particularly for contentious issues. But what’s more confounding is when policies of uncontested merit fall by the wayside with no natural enemy.

That’s where funding for Alzheimer’s research is today. And this is what we’re going to do to change that.

Alzheimer’s disease is the No. 1 threat to Medicare and Medicaid budgets. It is more costly to the nation than heart disease or cancer. Average Medicaid payments are at least 19 times greater for people with Alzheimer’s than for people without. For more data, visit here.

Alzheimer’s is the sixth leading cause of death in the U.S., and one in three seniors die having the disease.  There is no cure.

Last year, Alzheimer’s cost Medicare $107 billion, and Medicaid $35 billion. This doesn’t take into account the $35 billion imposed on families, or costs incurred by private insurers or charities. It also doesn’t factor in the $216 billion value of unpaid family care and lost caregiver employment last year.

And no dollar amount explains how much Alzheimer’s just plain sucks.

The solution is to pay for research. This means the National Institutes of Health needs to set priorities, and the Food & Drug Administration must streamline the process that channels discoveries to market.

The good news is that the NIH and FDA are on board.

At the 2013 National Alzheimer’s Association conference in Washington, D.C., directors from both institutions joined patient advocates to appeal to Congress for more Alzheimer’s dollars. In fact, the NIH director allocated his own discretionary funds for Alzheimer’s research.

This graphic explains why: research saves dollars and lives.  For HIV/AIDS, the NIH invested $32 billion in research in 2011, consistent with levels in previous years. Between 2000 and 2010, mortality from HIV fell by 42 percent.

For cancer, the NIH invested nearly $61 billion in research in 2011; and between 2000 and 2010, mortality from cancers fell by 10 percent.

For heart disease and stroke, the NIH spent $42 billion in 2011, continuing momentum on a 10-year decline in mortality of 16 and 23 percent, respectively.

During the same period, deaths from Alzheimer’s rose by 68 percent.

If the public policy goal is to trim spending and reduced liabilities, go after the biggest monster — Alzheimer’s. But the federal dollars spent on Alzheimer’s research is relatively small: just $448 million in 2011.

These data beg a new measure that reflects the inverse relationship between research spending and Medicare spending. I’ll call it the “research-to-care” ratio.

NIH funding for Alzheimer’s research is 0.44 percent of Medicare spending to treat the disease.  Comparatively, HIV/AIDS research dollars represent 54.9 percent of Medicare costs to treat it.  For cancer, NIH research funding represents 7.8 percent of treatment costs, and for heart disease, about 4.1 percent.

If an investment in Alzheimer’s research resulted in a 1 percent reduction in Medicare Alzheimer’s costs, this would more than cover the research bill.

I and a few hundred other advocates divided up to meet with members of Congress to present these facts. Most were sympathetic, including Florida’s Rep. Steve Southerland, but they were not willing to authorize the paltry $100 million increase requested by President Obama in his 2013 budget.

Why? Because, Southerland told us, his college-age daughter has friends who abuse the welfare system and receive food stamps they don’t really need, and that’s a problem he thinks needs fixing first.

Wasteful and wrong, yes, but it’s an insulting comparison to make when the goal is to treat a disease so efficiently that taxpayers would save substantial amounts of money each year.

My interest is personal. My father, at 63, suffers from the early stages of Alzheimer’s. My grandfather died from it and my grandfather’s mother and sister did too.

When he got the diagnosis, my dad did the unthinkable: he actually got energized. Knowing that his time left is uncertain and that the House is unlikely to budge, he’s working daily to raise awareness and tackling the stigma associated with the disease.

Politics can get the better of us, but the sheer economics of Alzheimer’s makes providing money for research a no-brainer.

If you, like my dad, don’t want to wait for members like Southerland to figure out the economics on their own, consider supporting the Florida State University College of Medicine, Center for Brain Repair, which recently created a research fund in his name.

Chart 1:

dental carve out2Chart 2:

dental carve out3

Karen Cyphers

Author: Karen Cyphers

Karen Cyphers, Ph.D., is a public policy researcher, political consultant, and president of Cyphers Group, LLC. She serves as Senior Policy Counsel with Sachs Media Group and is an adjunct instructor at Florida State University. Karen previously served as Director of Health Care Policy for the Florida Medical Association (2008-2012), was senior policy staff on the statewide gubernatorial campaigns of Bill McCollum (2010) and Charlie Crist (2006), served as deputy policy chief to Gov. Crist in health and human services (2007-2008), and was legislative staff in the Florida House and Senate. Karen is active in raising awareness and funds for Alzheimer's disease research, and was recently appointed as a Patient Representative on the federal Food & Drug Administration, Central & Peripheral Nervous System Drugs Advisory Committee. She earned her doctoral degree in political science at Florida State and her bachelor's degree at New College of Florida. In her spare time, Karen writes children's books and can be found "testing out" playgrounds across Tallahassee where she lives with her husband Brett and their three daughters.

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1 Comment

  1. Karen, you are very very right and it is a shame not more people understand.

    Marc Wortmann
    Alzheimer’s Disease International

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