Author Archives: Jason Karlawish

Is the Brain Ready for Personalized Medicine? Studies Suggest Not Quite Yet.

Sep 6, 2013, 9:00 AM, Posted by Jason Karlawish

Jason Karlawish, MD, is a professor of medicine, medical ethics and health policy at the University of Pennsylvania and the director of Penn’s Neurodegenerative Disease Ethics and Policy Program. He is the recipient of a Robert Wood Johnson Foundation Investigator Award in Health Policy Research.

“Prescribe the right drug to the right patient at the right time” is not a new medical practice, but when a biomarker—that is, a measure of disease pathophysiology—or a gene makes this decision, that is a radically new medical practice. The promise of personalized medicine is that biomarker and gene driven algorithms will do much of the work of medicine. By predicting patients’ future health and the outcomes of an intervention, they will guide what doctors recommend to their patients. Like the theory of evidence-based medicine, personalized medicine promises a more objective, efficient and precise medical practice.

To date, personalized medicine has largely flourished “below the neck,” that is, in the care of patients with common medical diseases, particularly cancer and cardiovascular disease. In the last two decades though, the National Institutes of Health, the pharmaceutical industry, and researchers have invested substantial time and money in research such as the Alzheimer’s Disease Neuroimaging Initiative (called “ADNI”) dedicated to discovering and validating the biomarkers and genes that predict whether a brain will fail. This research is beginning to reshape how we talk about the diagnosis and treatment of the aging brain, an organ that is more and more, like hearts and bones, regarded as an organ “at risk.” As a result, clinicians, ethicists, and health care policy-makers are beginning to ask how we should practice personalized medicine for the seemingly healthy brain that is at risk for neurodegenerative dementias such as Alzheimer’s, Parkinson’s, Lewy Body Disease and frontotemporal lobar degeneration.

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What We Talk About When We Talk About Alzheimer's Disease

Mar 12, 2012, 1:00 PM, Posted by Jason Karlawish

Just one year after President Obama signed the National Alzheimer’s Project Act into law, the U.S. is beginning to talk about Alzheimer’s disease. With input from 23 federal departments and agencies, the Department of Health and Human Services has issued the nation’s first National Alzheimer’s Plan, and the President’s budget proposes to increase funding for Alzheimer’s research and care by at least $156 million.

Alzheimer’s disease is now a national problem that we will tackle guided by a plan with five goals. Goal #1 is ambitious—to prevent and treat Alzheimer’s by 2025. The other goals are far reaching. They include detailed proposals to change the delivery of health care for patients and families, evaluate new models of care and housing for people with Alzheimer’s, and to provide services for their caregivers’ health and well-being.

Health care reform is hotly contested, and may even be repealed, but so far, this disease specific expansion of federal interventions and spending has largely escaped the recurrent and bitter partisan disputes over the role of the federal government in solving the nation’s health care problems, and the size of the federal budget and its deficit.

Alzheimer’s may, like other diseases of aging, largely remain free of partisanship at least in part because America is aging. Studies show that the chief risk factor for developing Alzheimer’s is something we can little change: our age. Demography is destiny, and as the number of Americans over 65 steadily grows, so too will the number of Americans with Alzheimer’s.

National action is needed, but as the U.S. is about to dive into tackling the Alzheimer’s problem, it is worth considering a fundamental guide of ethics. Before you decide what to do about something, you have to know what it is, otherwise, your plan may fail. Alzheimer’s disease is called the most common cause of dementia. But what we talk about when we talk about Alzheimer’s disease is changing. How might this changing language impact the success or failure of our national plan?

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From Dependency to Interdependency: Coach Pat Summitt's Challenge to America

Aug 29, 2011, 12:00 PM, Posted by Jason Karlawish

Pat Summitt’s announcement that, at the age of 59, she has been diagnosed with dementia caused by Alzheimer’s disease is sad news. Her plan to continue working as the head coach of the eight-time NCAA Division I national championship University of Tennessee Lady Vols basketball team is a shot heard round an aging world.

A person diagnosed with dementia still working? The idea seems bizarre, and yet a big-money college athletic program does not run its coaching staff like a small town volunteer basketball program. The University’s decision to retain her as a coach is an opportunity for society to engage in a vigorous debate about how we will live with cognitive impairment as well as with other impairments associated with chronic diseases common to older adults.

Summitt’s exact story is unusual. Alzheimer’s disease is rare before the 7th decade of life. But the theme of her story is common, and, in the coming decades, it will be even more common.

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