Combating Alzheimer’s with continued investment and a dedicated action plan

By U.S. Sen. Susan Collins, R-Maine

I recently joined with U.S. Sen. Mark Warner, D-Virginia for a television interview to discuss our priorities as co-leaders of the bipartisan Congressional Task Force on Alzheimer’s. We began our presentation by holding up photographs.  Sen. Warner’s was of his mother, mine was of my father – two bright, beloved, and accomplished individuals who were robbed of their minds and health by this terrible disease. I also lost my grandfather and two uncles to Alzheimer’s.

We are hardly alone in experiencing this heartbreaking loss.  6.7 million Americans — including tens of thousands of Mainers — are currently living with Alzheimer’s. By 2060, barring any major breakthroughs to prevent, slow down, or cure Alzheimer’s, that number is expected to more than double to 13.8 million.

In addition to the human toll, Alzheimer’s is our nation’s most expensive disease, costing an astonishing $345 billion per year, an increase of $24 billion from just a year ago. If we continue along this trajectory, Alzheimer’s will surpass $1 trillion in annual costs by mid-century. 

Moreover, family caregivers provide an estimated 18 billion hours of unpaid care for loved ones with dementia each year. Nearly half of baby boomers reaching age 85 will either be afflicted with Alzheimer’s or caring for someone who has it.

For U.S. Sen. Warner and me, and for our Task Force colleagues, our fight against Alzheimer’s is both personal and a matter of crafting effective public policy. That is why we have introduced a pair of bills that would cement and build on the important work that is underway to prevent and effectively treat Alzheimer’s disease. 

In 2011, I authored the National Alzheimer’s Project Act with then-U.S. Senr Evan Bayh, D-Indiana. Under NAPA, a panel of experts created a coordinated strategic national plan to prevent and effectively treat Alzheimer’s disease. 

The expert council that NAPA created calculated that $2 billion per year in federal funding would be needed to make progress toward that goal. We met that target level for the first time in 2018.  This year, Alzheimer’s and dementia research funding will be a record high $3.74 billion. As vice chair of the Appropriations Committee, I am committed to sustaining this crucial investment, despite the President’s budget proposal which does not increase funding specifically for Alzheimer’s.

NAPA is set to expire soon and must be reauthorized to ensure that research investments remain coordinated and their impact maximized. The first bill we introduced, the NAPA Reauthorization Act, would extend NAPA through 2035 and modernize the legislation to reflect strides that have been made to understand the disease, such as including a new focus on promoting healthy aging, reducing risk factors, and supporting family caregivers. 

The second bill, the Alzheimer’s Accountability and Investment Act, would continue through 2035 a requirement that the Director of the National Institutes of Health submit an annual budget directly to Congress estimating the funding necessary to fully implement NAPA’s research goals without first going through the White House Office of Management and Budget. Only two other areas of biomedical research — cancer and HIV/AIDS — have been the subject of special budget development aimed at speeding discovery.

This national focus on Alzheimer’s and sustained research investments have spurred the development of a new class of treatments for Alzheimer’s patients. Despite life-changing new therapies coming to market, patients continue to face roadblocks to treatment because of a Centers for Medicare and Medicaid Services decision to not cover for an FDA-approved class of Alzheimer’s drugs. This misguided – and outright unprecedented – decision is severely limiting patients’ access to new Alzheimer’s treatments, particularly in rural America. That is why I have led the charge against this unprecedented action taken by CMS. It is not CMS’s job to second-guess FDA’s approvals.

In February, I authored a bipartisan letter that was signed by 20 senators urging CMS to stop putting these promising new treatments out of reach for most patients. In addition, at a recent Appropriations hearing in front of a sea of dedicated Alzheimer’s advocates dressed in purple, the disease’s trademark color, I urged the secretary of the Department of Health and Human Services who oversees CMS to change course. Medicare beneficiaries deserve immediate access to FDA-approved treatments if the patient and clinician decide it is right for them.

While more remains to be done, we have made tremendous progress in boosting funding in recent years for Alzheimer’s research and these two bills will maintain our momentum and make sure that we do not take our foot off the pedal just as our investments in basic research are beginning to translate into potential new treatments. With continued investment and a dedicated action plan, we will not let Alzheimer’s be one of the defining diseases of our children’s generation as it has been for ours.