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Window On Washington: New Normal At The Alzheimer’s Association Advocacy Forum

Window On Washington: New Normal At The Alzheimer’s Association Advocacy Forum

Jennifer Laszlo Mizrahi is the President of RespectAbility, a nonprofit organization working to empower people with disabilities to achieve the American dream. She works regularly with disability organizations, national, state and local policy leaders, workforce development professionals, media, employers, philanthropists, celebrities and faith-based organizations in order to expand opportunities for people with disabilities. Mizrahi has led numerous national polls and brought significant visibility to the issues of America’s 56 million citizens with disabilities. She is the co-author of a major toolkit on best practices on employment for people with disabilities and frequently hosts webinars on this topic. Mizrahi has published dozens of op-eds and publications on disability issues, including in USA Today, Huffington Post, The Hill and other publications. Dyslexic herself, she also knows what it means to parent a child with multiple disabilities. Reach her at

Speaking to a group of about a thousand activists from the Alzheimer’s Association today at their annual advocacy forum, National Institutes of Health Director Dr. Francis Collins shared the bad news that sequestration has already cost the America’s national medical research budget $1.7 billion dollars.

Collins spoke for around thirty minutes.

In the amount of time Collins was in front of the audience, the United States spent over $11 million in taxpayer money on Alzheimer’s expenses, largely in Medicare and Medicaid, with only a fraction of our investment going to prevent, slow or cure the disease.

Our priorities are backwards as we continue to pay for expensive nursing care and medical services and allow our citizens to suffer, but deny our nation the benefit of further medical research that can find ways to prevent, slow or cure diseases. It’s insane.

During that same thirty minutes that Collins spoke, on average, another 26 Americans got Alzheimer’s. For the patient, the news is a death sentence. Alzheimer’s is the sixth leading killer of Americans, and the only one of the top killers for which there is no cure. Fully half of Americans who live to age 85 will get it.

For the family, the diagnosis means they’ll lose their loved one twice. Long before death, they’ll be forced to watch helplessly as the ravages of the disease rob their spouse or parent of memory, personality and the ability to perform even the most basic functions of daily living. Today, approximately 5.2 million Americans have Alzheimer’s. Fully one-third of likely voters reported in a poll that they currently have a loved one with Alzheimer’s.

For the country facing a fiscal crisis, as well as the family, it is a tremendously expensive disease. The New England Journal says it is the most expensive disease we face. Indeed, the cost goes well beyond the direct cost of $200 billion this nation currently spends each year for medical, nursing and personal services to Alzheimer’s patients, either at home or at skilled nursing facilities.

To put it in context, given that the Alzheimer’s Association says it costs $150 billion a year in government money to care for people with Alzheimer’s and that there are roughly 300 million Americans, it’s already costing every American man, woman and child more than $500 a year to take care of people with Alzheimer’s. If nothing is done to slow, prevent or cure the disease, with the baby boomers aging, those costs will soon be above $3,000 for every American. The overwhelming majority of these costs will be paid by Medicare and Medicaid, which means the American taxpayers.

We need a cure, but right now we are spending only $100 in research for a cure for every $28,000 in medical expenses. In the case of Alzheimer’s, where the cost of care is so high, and the incidence of the disease is so widespread, it’s much cheaper to find a cure than to keep treating the symptoms.

If a treatment can be developed that can slow the progression of Alzheimer’s, the human and financial savings would be immediate and substantial. If Alzheimer’s was cured, or if there was a vaccine, it would save even more. Remember, at one point America spent a fortune on iron lungs and wheelchairs for people with polio. But the March of Dimes, Federal investments in scientific research and Dr. Salk stepped in. Now we don’t have to pay for polio.

Sadly, the Congressional Budget Office refuses to score such potential savings from actually preventing or curing diseases. Therefore, it’s not surprising that neither Wisconscin Sen. Paul Ryan plan nor President Barack Obama’s budgets have taken future cures into account. Even Bowles/Simpson does not figure in how much can be saved if we up our investments in research and actually find cures.

The first Obama administration set some good goals on Alzheimer’s with National Alzheimer’s Project Act. But much more can and must be done in President Obama’s second term — and it should be bipartisan in scope. His new BRAIN initiative is extremely promising, but is not yet funded.

As James P. Pinkerton, a domestic policy adviser to Presidents Ronald Reagan and George H.W. Bush, observes, “Health cures can be a lot less costly than health care. It’s great to make existing healthcare cheaper, but it’s even greater to use science to make existing diseases disappear. It’s better to beat than to treat.”

It is estimated that by mid-century, when today’s 20-somethings become eligible for Medicare, there will be three times today’s number of Alzheimer’s patients as today, and the yearly cost of their care will skyrocket to $1 trillion. That’s money we don’t have and, as importantly don’t need to spend.

And that’s why America needs a bipartisan effort to find health cures–so we can not only improve lives but also reduce our spending on health care.

Fortunately, private philanthropists are increasing support for vital medical research. Donors like Paul Allen, Eli Broad, Sheldon Adelson, the Klarman Family Foundation, Mort Zuckerman, Michael Milken and others are starting to donate mega-gifts. Indeed, Mort Zuckerman alone recently pledged more than $200 million to Alzheimer’s research, which is greater than the increase in such funding this year from the Federal government.

Mega gifts from billionaires are critical to making the world a better place. But it does not leave the rest of us off the hook. We need to tell our elected leaders that our collective tax dollars need to focus more on cures, and less on care. We can also “crowd–source” our own smaller donations online into promising medical research. Each of us can make a difference!

Jennifer Laszlo Mizrahi has lost four family members to Alzheimer’s and is involved with non-profits that support Alzheimer’s cures.

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