A few weeks ago I had the distinct honor of attending the Alzheimer’s Association Advocacy Day on Capitol Hill. 800 purple sashes streamed across the National Mall on clear spring day. My group of ten traveled together in a van into DC, which felt oddly similar to a tank of soldiers headed into battle. We were excited about our mission and banded together like a brotherhood of righteousness. That experience alone made the trip worthwhile.
As an Ambassador for the Association to my local congressman (Representative John Delaney D-MD), my job was to sit down with his staff and explain the needs and goals of the Association. It’s really a fairly simple process once the appointments have been made and the information has been reviewed. The lobbyists and legislative team for the Alzheimer’s Association are top notch political action trainers- even I knew what I was doing :).
The nice thing about the Alzheimer’s cause is that it is universal, not controversial. Alzheimer’s disease does not cause a heated debate or polarize political parties in any way. Discussing the impact of Alzheimer’s is not like debating gun control or abortion- there is no for or against position. The challenge of advocating for Alzheimer’s disease lies in convincing decision makers to open the purse strings and to explain to them the sound logic in spending now to avoid costs later. Advances in medical research have had an impact on reducing mortality in major diseases including cancer, heart disease, stroke, and HIV/AIDS- but deaths from Alzheimer’s disease have only increased. The Alzheimer’s Association is very careful in its messaging that one disease isn’t more “worthy” of funding than another, but stresses that where investment in diagnostic and treatment research has been made for other major diseases, lives have been saved.
The investment argument is quite sound. 5 million Americans are living with Alzheimer’s today. Medicare spends nearly $1 of every $5 on someone with Alzheimer’s or another form of dementia. Without any way to prevent, stop or even slow the progression of Alzheimer’s, we are on a course toward having as many as 16 million Americans living with Alzheimer’s disease by 2050, which will drive an annual uninflated cost of $1.2 trillion. This could bankrupt Medicare and Medicaid. This will paralyze our generation and the ones that follow in a vat of caregiving quicksand. The family members who will be caring for these 16 million people won’t be working, therefore they won’t be contributing to the Medicare pot they’re pulling from. By increasing funding to research, the NIH is hopeful that progress can be made. Really, what choice do we have?
The Alzheimer’s Association is asking Congress to support The Alzheimer’s Accountability Act (S. 2192/H.R. 4351) which authorizes NIH to submit a Professional Judgment Budget to Congress identifying the funding and research projects needed to accomplish the goals of the National Alzheimer’s Plan in each fiscal year leading up to 2025- the year we hope to be rid of Alzheimer’s disease. Accountability will ensure that funds are being well spent.
For me, the best part about participating in Advocacy Day was all the inspirational people I met from all over the country. From the family from Indiana- the dad who was diagnosed with EOAD at age 46, and his son the 19 year old entrepreneur/networking dynamo- to the women from Nebraska who literally stormed the steps of Capitol Hill with their arms linked like a human chain… the Alzheimer’s cause is something that transcends our differences. It is not mired in discrimination or greed or the malicious intent of a ruthless dictator. We are all victims of Alzheimer’s. I hope our legislators and decision makers are listening.
Get involved and advocate for Alzheimer’s disease. It’s easy, it’s rewarding, and it’s empowering. See you on the Hill.