I met Linda, my friend of nearly 40 years and we drove together to attend the farewell gathering for her husband, Bill, at Banner Alzheimer’s Research Institute in Sun City, Arizona. At Bill’s farewell, Dr. Marwan Sabbagh spoke about the Banner Mission and the legacy that Bill was leaving. Afterwards, I spoke to Dr. Sabbagh about the emerging science of epigenetics and who on the Banner staff might be the “expert.” He said, Paul Coleman.
My first meeting with Paul Coleman in 2012 was over lunch at a Chinese restaurant in Glendale, Arizona. We chatted for nearly 2 hours about epigenetics, sailing, politics, Alzheimer’s and our backgrounds. Paul was a senior scientist at Banner Alzheimer’s Research Center. I was a Dissertation Director for an online doctoral program. We both have our PhD’s.
I realized that knowing Paul and his lifetime of research into Alzheimer’s and dementia was an honor. He had been publishing on Alzheimer’s for more than 50 years and was considered one of the leading researchers in the world. All I knew about Alzheimer’s was that my aunt had it and that it was reaching epidemic proportions in the US. I wanted to know more, much more.
Paul and I broke bread several more times and he mentioned a business opportunity where he had an early Alzheimer’s detection blood test. At the time, I was researching potential “prevention” interventions such as changing one’s lifestyle. It seemed to make good overall “sense” to be as healthy as you can be and to know if you had a predilection for getting Alzheimer’s.
For context, my heart attack years earlier led me to become influenced by Dr. Dean Ornish’s research on reversing heart disease through changing one’s lifestyle. I thought we might be able to do the same with Alzheimer’s and other forms of dementia. I wanted to conduct a randomized controlled trial https://www.medicinenet.com/script/main/art.asp?articlekey=39532 to test our hypotheses.
Together, we two scientists would try and detect early and then determine a series of non-invasive interventions that might slow down cognitive decline. Our discussions led us to start a business called Epigenesis.
I wrote a proposal to conduct a very large study with Banner and through my employer at the time and seek research funding. We would need Banner’s permission to move forward and try and attract funding. But our timing was premature. We met with the new CEO about our approach; he mentioned the FINGER Study https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)60461-5/fulltext which was a truncated version of our proposal. His response was to call our study a “kitchen sink” approach with multiple arms (aka independent variables) and did not say much more. We met with his neuroscientific researcher and afterward, the CEO asked one of our medical docs if any of us had any research experience. Obviously, we had failed to convince the CEO and his research scientist of our expertise, skills and education.
That was a shame, because a few years later, a similar research proposal from several different researchers with the US Alzheimer’s Association resulted in funding the current POINTER Study https://alz.org/us-pointer/overview.asp which was nearly identical to what we had proposed a 4 years earlier. That is when I learned about the national “politics” at work in science on ending the worst disease with no cure and no valid and reliable interventions.
I learned that even though Harry Johns, the CEO of the US Alzheimer’s Association had stated https://www.alz.org/documents/national/submitted-testimony-050113.pdf before the Subcommittee on Labor, Health and Human Services, Education and Related Agencies Committee on Appropriations in the United States House of Representatives on March 13, 2013, that due to the projected increases in numbers of people with Alzheimer’s, along with the increased costs and no way to slow it down or reverse it “…the graying of America threatens the bankrupting of America.” And, that “Caring for people with Alzheimer’s will cost all payers-Medicare, Medicaid, individuals, private insurance and HMO’s–$20 trillion over the next 40 years.” Alzheimer’s makes treating other diseases more expensive because most Alzheimer’s sufferers have one or more co-morbidity’s that complicate the management of Alzheimer’s and hence increased costs.
Then, there is the cost and stress with the families and caregivers. There currently is very little for them by way of help or support, save for folks like us. Someone once said to me that if you were fortunate to reach the age of 85, you likely would have Alzheimer’s or be a caregiver for someone with the disease.
This blog and our new book https://www.amazon.com/dp/B08376T9M4 begin to explore this enormous problem. We are not paid, nor working for a corporation, do not have a grant or being subsidized by a university or NGO. We have, in truth, exhausted our own resources over the past seven years to finally bring this evidenced-based research to the public. We are advocating for a national conversation where ALL stakeholders can participate. And that must begin NOW.
