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Kim TaylorBack to OpinionKim Taylor

Lost in the fog of Alzheimer’s

The road to my 56-year-old brother’s diagnosis of early onset Alzheimer’s was the northbound 605 Freeway through Southern California. It was the road that Dr. Stephen Taylor traveled everyday for nearly 30 years, first as a fellow at UCLA, then as a pediatrician and infectious disease specialist at King-Drew Medical Center in South Central Los Angeles. For months, his wife noticed that he was coming home later every day, but he was a busy man, even as the hospital he loved faced closure.

One day, he left work at 7 p.m., and failed to return home. He appeared some 12 hours later. Darkness had overtaken him on the way home and he had lost his bearings, driving almost 50 miles out of his way toward Santa Ana. He’d slept by the side of the road until daylight, too frightened to drive and too humiliated to call his wife to tell her he couldn’t find his way home in the dark.

Today, more than 5 million Americans suffer from Alzheimer’s disease; by 2050, that number will be close to 16 million. Blacks are twice as likely as whites to be diagnosed; Hispanics are 1.5 times more likely. About 5 percent will have the early onset variety that struck my brother, but all patients may show symptoms years before diagnosis. Alzheimer’s is the fifth leading cause of death of those over age 65, and the seventh leading cause of death in the U.S. overall. The cost of caring for Alzheimer’s patients is staggering, some $172 billion dollars per year — almost 35 percent of the Medicare budget – excluding the services of unpaid caregivers. By 2050, those costs could reach $1 trillion per year.

Yet, despite these numbers and no known cure or treatment to prevent the disease or halt its progression, federal spending for Alzheimer’s research equals less than 10 percent of amounts spent on cancer research, and less than 30 percent of research funding for heart disease. In fact, federal spending on Alzheimer’s research has remained flat for several years. And as meaningful as the donations from the Alzheimer’s Association and other private sources are, government funding is sorely needed to avert the coming crisis.

Because the damage caused by Alzheimer’s begins years before diagnosis, research into the disease takes many forms to address its different stages. These include drugs and therapies to prevent the development of Alzheimer’s, methods of earlier diagnosis, prevention of the loss of brain synapses which precedes the formation of Alzheimer’s distinctive brain plaques and tangles, and treatments to slow or reverse the development of those plaques and tangles, which are currently the focus of almost 90 experimental therapies alone. Stem cell research has shown great potential to help reverse the destructive effects of the disease, and numerous studies and trials are ongoing.

A sign of recognition of Alzheimer’s growing shadow was the unanimous passage by Congress of the National Alzheimer’s Project Act (NAPA), which became law on Jan. 4, 2011. NAPA, whose advocates include retired Supreme Court Justice Sandra Day O’Connor and Maria Shriver, calls for the creation of a national plan to fight the disease and to help patients and their families.

While a coordinated plan is a start, NAPA includes no increases in spending for research, currently about $527 million per year. And due to the current atmosphere of deficit reduction that has taken hold in Washington, the outlook for additional government funding for Alzheimer’s research looks bleak. The Alzheimer’s Breakthrough Act, introduced in July 2009, sought to increase research spending to $2 billion, but died in committee. Worse, there is grave concern that the agencies which are central to NAPA’s success, including the National Institutes of Health, are targets for budget cuts, which may reduce already inadequate levels of spending for Alzheimer’s research.

Aside from the financial costs, the losses for families and communities keep growing. My brother was the sole provider for his family for more than 25 years as my sister-in-law waged her own battle with lupus. He was a pioneering researcher of HIV/AIDS and sickle-cell anemia. He headed an AIDS clinic for children at a time when even medical professionals treated AIDS patients with fear and loathing. He fought tirelessly for medical access for South Central Los Angeles, a community devastated by poverty and violence. Having graduated from medical school at a time when there were few blacks in medicine, he mentored dozens of minority students through the years, many of whom went on to become doctors, nurses and scientists.

My brother died on Jan. 9, 2011, at age 60, the youngest Alzheimer’s patient in an assisted living facility in San Dimas, Calif. By the time he died, he no longer remembered how to use a fork. He trembled when his wife tried to shave him. Sometimes he forgot who she was; other times, he thought they were still dating.  Ironically, his last days were some of his happiest ones; he imagined that he was back in the hospital, in charge of his patients and students. His medical training never completely left him, and he managed during his year in the home to save two patients from choking to death by performing the Heimlich maneuver.

How many students missed out on his lessons, including his daughter, soon to be a nurse herself? How many more children might have been helped by research yet to come from his lab? Multiply that loss by millions of parents, grandparents, teachers and mentors, whose wisdom is lost in the fog of Alzheimer’s. How much more can we afford to lose?

Kim Taylor is a New York-based corporate attorney specializing in corporate transactions and regulatory compliance.