ALZHEIMER’S DISEASE
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.
July 9th, 2007 at 8:48 am
Hello Mike:
Thank you for your insight. In reference to the link below (”Care or a cure? How should Alzheimer’s funds be spent? Lawmakers, researcher’s debate tough question”), maybe of some interest; although it’s a year old article, it does make some valid points:
http://mednews.wustl.edu/news/page/normal/7360.html
Thanks,
~PM
July 11th, 2007 at 11:27 am
Dear Mike,
Your blog site with fresh ideas is wonderful. This is to ask a question about single payer health systems, which you oppose on the basis of dysfunctional trade-offs as occur under Medicare. On the other hand, I note many problems with our private payer system, including 30% overhead expenses and clerks deciding upon individual medical treatment.
In about two years, California will have a
single payer system before its legislature. To counteract many (but not all) possible dysfunctional trade-offs, this program has a number of policy setting boards which include representatives from consumers, doctors, hospitals and administrators. Do you think oversight and policy boards would be adequate to make a single payer system worth trying?
Ron Patten
July 11th, 2007 at 4:55 pm
Mike,
My father has been diagnosed with Alzheimer’s and I wanted to add to your excellent comments on research and discovery that the true cost of Alzheimer’s fails to take into account the cost of care required not only for the patient but for the caregiver. My father, who is 87, is cared for by my mother, 85 (with financial and some care-giving by myself and my wife). Due to the stress and strain of day-to-day care, my mother’s general health has rapidly deteriorated. She has been hospitalized twice for being just plain rundown. She will not let other professionals care for Dad (which I admire, but sadly regret because it is harming her, and , frankly, Dad does not understand her sacrifices). He remains kind and gentle (thank God), but I am watching in real life the cost of this disease on those who care for the afflicted.
July 11th, 2007 at 5:20 pm
To Ron Patten:
Thank you for your thoughtful comments on health care. You make two points to which I would like to respond:
• The current private payer system does have huge overhead, but it is unclear how much of that would exist if CMS, the Medicare administrative agency, did not mandate a great deal of detailed reporting, even for non-Medicare patients, or if states did not try to micromanage health care administrative processes. I would argue that we already have a government-regulated health care system, but we are getting the worst of both worlds: heavy regulation of the private sector which negates much of the advantage of a highly innovative private sector system, and the lack of comprehensiveness that a pure profit-driven system can create.
• I do not believe broad-based oversight boards would offset the drawbacks of a single-payer system. Having studied the Canadian system and seen how Medicare has been administered, there are multiple areas of dysfunctionality:
o Politicians invariably react to a particular dramatic coverage problem by adding coverage mandates that carve into stone a popular coverage approach at a particular point in time. Thus, in almost all states, some interest group has successfully lobbied for mandates, many of which raise serious questions. For example, I believe New York mandates coverage of fertility treatments for insured plans. Fertility treatments give couples the chance to have children that would otherwise be deprived of that opportunity, and, to the degree that the state wants to encourage couples to have children, these treatments are a good way to help that process. On the other hand, fertility treatments result in more premature births, which are much higher cost, and premature births increase the odds of developmental and health issues as the child grows. There are legitimate and serious questions about whether fertility treatments should be mandated that the state probably did not address before the law was passed.
o Medicare CMS already has oversight boards, and the pace of change for something that obviously needs change is far too slow. Medicare CMS also has a flawed methodology of focusing on individual medical events, rather than a lifecycle of care, because government budget cycles are annual. When health care is managed relative to annual government fiscal year budgets, longer-term investments in health are simply not done. When we effectively invest in health by making brand-name diabetes drugs very low cost or free, we take a current-year budget hit, but it is a great investment in health and in reducing future health care costs. A government would make the trade-off the opposite way because of budget-balancing mandates.
o Governments, insurance-based health systems, and consumer-based systems do not link health with productive capacity. Employers can and do recognize that employee health pays back in improved productive capability, and the smartest employers are able to see what investments in health can accomplish.
Thank you again for your comments.
- mike
July 12th, 2007 at 8:47 am
To John Goodrich:
John,
Your comment relative to the cost of Alzheimer’s disease with respect to caregivers is absolutely on target. Alzheimer’s disease not only affects caregivers, but it also complicates life for others who help manage the patient’s affairs. Boston University specifically focuses on difficult issues like when the patient has reached the point that he or she cannot continue to drive or to perform other daily functions.
You also bring up another key point: caregivers need support and help themselves. Getting them to acknowledge this is sometimes more difficult than dealing directly with patient issues. Support groups help in this regard, and the Alzheimer’s Association is an excellent resource for helping identify such groups. Recently, I talked with Jay Silverstein, the CEO of Revolution Health, who is a real visionary in thinking about how to build communities of people who can support one another with respect to medical conditions and the related resources needed to address them.
Although medical research will probably not progress fast enough to help reverse or stabilize your father’s condition, I am working with others to move it fast enough that, when our generation reaches the ages of your parents, Alzheimer’s has became a chronic, controllable condition, as opposed to the devastating degenerative disease it is today.
- mike