As a person who majored in political science and has been engaged actively in public
Consistent with my philosophy of finding the “road less traveled,” one major area of interest for me is Alzheimer’s disease, which actually is the third-highest cost medical condition in our U.S. healthcare system, far more than HIV/AIDS and many other conditions that get more publicity and funding.
I should confess that I have a personal interest in Alzheimer’s. I have had family members that either had Alzheimer’s or some other form of dementia. I do not know whether my loved ones had Alzheimer’s because autopsies were not done, and, as I understand it, an autopsy is the only definitive way to determine whether a person has had Alzheimer’s. Fairly definite diagnoses can be made through memory assessment, and the earlier memory assessment and diagnosis can be done, the more can be done for an Alzheimer’s patient.
I help advise the Boston University (BU) Alzheimer’s Disease Center, one of the slightly more than two dozen centers designated as a center of excellence by the National Institutes of Health in a highly-competitive process. On June 20, I attended an advisory group meeting at BU Medical School. I also visited a few university mail centers on this trip, and spent some time with one of our top sales professionals who has sold products to many colleges and universities.
Several conclusions jumped out at me:
- While we want world-class research in trying to find breakthroughs for diseases like Alzheimer’s and we get it at institutions like BU, our government and other donors put ridiculous bureaucratic obstacles in the way of focusing on research and clinical care. For example, as one college director of operations told me, universities and other research centers have to account for individual pieces of mail and other low-ticket items because of the government’s obsession with making sure that no dollar is “wasted.” At the same time, no one in government thinks about the waste or opportunity cost of high-skilled researchers or physicians worrying about the cost of single letter or photocopy and charging it to the right account.
- Donors of all kinds congratulate themselves on restricted funding that is targeted only on research and not on “overhead” costs like administrative support, equipment, supplies, and facilities. Yet, no institution can survive without some amount of overhead. I have talked to many CEOs and Chairmen of non-profits who have seen the same thing I have. Many worthy organizations hit a wall on their ability to accept restricted grants and perform on them because their funding for the necessary, but mundane, administrative tasks does not keep pace.
- Government funding for breakthrough medical research and clinical care is declining in relative and absolute terms, even when it would produce significant and measurable payback in future years. Governments at all levels are so fixated on current-year budget-balancing activity that they routinely mortgage the future. Medicare, in particular, ludicrously controls the payouts for individual clinical interventions for Alzheimer’s, and, I am sure, other conditions, to reduce today’s costs, but ignores opportunities for investments in health that will save on future costs. By the way, this is one of the reasons I am strongly opposed to any “single-payer” health system in the United States. Given our approach to democratic government, I have no confidence that politicians, who tightly control and micromanage Medicare and its clinical processes, would think beyond the current fiscal year in how they manage medicine. If there were a single-payer, the whole medical system would make these dysfunctional trade-offs, instead of just the part controlled by Medicare.
- To a greater degree than many other centers of excellence, BU focuses on the less-glamorous activity related to bringing down the cost and devastating burdens of Alzheimer’s. It focuses on genetic risk assessment, actions that might prevent Alzheimer’s, memory assessment programs to facilitate early diagnosis and treatment, and approaches that would slow down the progression of Alzheimer’s, as well as the needs of caregivers. As a society, we are conditioned to have researchers look for “cures” for diseases. I always think about the telethons for various diseases which use some variant of the phrase “there is no cure, but there is hope.” I am glad that we care passionately about finding cures, but the more practical and better investment of resources has to be targeted at prevention and the infrastructure for early diagnosis and treatment.
- The other concept presented to us was the notion that some of the capacity challenges for Alzheimer’s victims may not be memory-related, but may be perception-related. For example, an Alzheimer’s victim may not have forgotten where he or she put the car keys. That person may not be able to see the keys where they were placed. That insight suggests that we can help Alzheimer’s victims to function by improving their perceptual capability with various kinds of tools.
I am confident that significant progress will be made in the next 10 years to slow down disease progression, and maybe even stabilize patient situations. I would hope that we will see a time that the progression of this disease can actually be reversed.