(Originally submitted as, Let’s Make New York the Center for Alzheimer’s Research. After submission, I was asked to add a second paragraph to personalize the article, and Newsday edited down to its published format.)
In 2009, a month after turning 63, my wife, Clare, was diagnosed with early/young onset Alzheimer’s disease. By that time she had already been dealing with Alzheimer’s symptoms for three years ... asking me the same questions over and over, losing personal objects, misplacing things, starting sentences but unable to complete them, getting lost while driving locally, no longer enjoying hobbies of previous interest, etc. As her Alzheimer’s worsened over time and she grew increasingly dependent upon me, I needed respite time for myself. Clare started attending social day care programs several times a week and that helped, but it eventually became apparent that as her 24/7 caregiver I could no longer provide the quality of care she needed ... nor could I get the time I needed for myself. Clare now needed 24/7 supervision to be sure she was safe, she needed my assistance each morning to get washed and dressed, and each evening to get undressed and ready for bed at night. She could no longer prepare meals by herself, hygiene was becoming an issue, she was getting more confused each passing week, and even supervising her daily morning and evening medication was becoming difficult. I finally placed Clare in an assisted living facility this past September. She is happy there and is in a safe and secure environment. I visit her daily. But Clare and I are two of the lucky people in this state and this country who purchased long term health care insurance when we retired. Without that support, I’d have had to liquidate our assets over these past five years so Medicaid could foot the bills since many assisted living facilities on Long Island charge around $200 per day, or more, for people with Alzheimer’s. Those costs add up very quickly ... $6000 each month, $72,000 each year ... and more. New York will eventually go broke paying Medicaid costs for those with Alzheimer’s in assisted living facilities and nursing homes. The same will happen in other states until we can find a way to effectively treat, prevent, or cure Alzheimer’s.
We cannot depend upon our nation’s National Institutes of Health (NIH) for sufficient research funding to find a cure for Alzheimer’s. NIH currently only funds Alzheimer’s research at half a billion dollars a year, as compared to yearly allocations of $3 billion for HIV/AIDS research and $6 billion for cancer research.
Congressman Steve Israel and Assemblyman Charles Lavine would both like to see increased federal funding, but they also recognize that we cannot count on that happening, especially now with federal sequestration budget limits in place. Their solution is a $3 billion state bonding initiative similar to state bond issues that have made California this nation’s center for stem cell research, and Texas this nation’s center for cancer research. Those bonding initiatives enabled California and Texas to attract top researchers to come to their states.
New York already has in place some of the major “ingredients” to make an Alzheimer’s bonding initiative a success. Three of our nation’s 29 Alzheimer’s Disease Research Centers are in New York City. In addition, some of the finest research facilities in the nation are in New York, such as Long Island’s Cold Spring Harbor Laboratory, one of the world’s leading centers for genetic and neuroscience research. One can only imagine the synergy of having New York’s world class institutions working cooperatively on Alzheimer’s research with sufficient funding. Such a bonding initiative would also have the potential to create new jobs and attract even more world class researchers and scientists to New York.
In addition to research, a state bonding initiative could provide money for more programs to support those already dealing with Alzheimer’s, and their caregivers. Grants to local non-profit organizations could provide more badly needed support groups and day care programs for those with Alzheimer’s and their caregivers. Grants could provide more training for those who work each day with Alzheimer’s residents living in assisted living facilities and nursing homes.
Congressman Israel and Assemblyman Lavine have made a serious proposal to specifically help those with Alzheimer’s living in New York, and all Americans dealing with Alzheimer’s. Their bonding initiative merits serious consideration. A $3 billion bond issue, spread out over 20-30 years, can make New York our nation’s center for Alzheimer’s research and innovation. A bond issue could lead to new jobs, eventually save money that New York would otherwise spend on Medicaid costs to care for people with Alzheimer’s, and provide programs to help those currently dealing with Alzheimer’s, and their caregivers.
New York ... our country’s center for Alzheimer’s research. It’s an idea worthy of serious consideration.
Published in Newsday, January 6, 2014, p. A.25. Published online in advance of publication on 1/3/14. Access online version at: www.newsday.com/opinion/oped/opinion-alzheimer-s-cure-must-be-pursued-1.6727661.