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Victims Urge Congress Not To Cut Funds for Research, Medicaid

April 11, 1995

WASHINGTON (AP) _ Telling stories of family struggle and sacrifice, people touched by Alzheimer’s disease urged lawmakers Tuesday not to cut funds for research on the illness that afflicts 4 million Americans.

``Our message to Congress is simple: You cannot save money by slowing down medical research,″ actress Shelley Fabares told a Capitol Hill news conference.

``We also want Congress to understand that they will not solve any problems by making massive cuts in Medicaid,″ said Fabares, a national spokeswoman for the Alzheimer’s Association. ``In fact, they will make things worse. ... People with Alzheimer’s disease aren’t suddenly going to be able to take care of themselves.″

About 600,000 people with the disease rely on Medicaid, the government program that pays medical costs for the poor, because they have used up their savings to pay for long-term care, Fabares said. The actress, who plays the career woman and football wife on ABC’s ``Coach,″ lost her mother to the disease.

Alzheimer’s progressively destroys the brain, wiping out memory, thought and the control of bodily functions. It strikes about 10 percent of the population over the age of 65.

The Republican majority in Congress is considering reshaping Medicaid to give lump-sum payments to the states and let them decide how to provide medical care to the poor. The GOP also seeks to slow the program’s annual rate of growth from the current 10 percent.

``We are struggling to preserve″ Medicaid, said Fernando Torres-Gil, assistant secretary for aging at the Department of Health and Human Services. ``That program is in jeopardy. ... We have a tough struggle.″

Public awareness of Alzheimer’s grew significantly after former President Reagan announced in November that he is suffering from the disease, and Nancy Reagan has made public service announcements on the subject.

The Alzheimer’s Association, which organized the news conference, is asking lawmakers for $360 million for research on the disease for the next fiscal year, an increase of $50 million.

Although medical science now has little to offer Alzheimer’s patients, experts say there eventually will be drugs to stop the disease’s progression and an early diagnosis will be critically important. One existing drug, Tacrine, slows the progression only in some patients.

``I would like to ask the people in Congress: Please don’t scale back the research funds for a cure for this disease,″ said Frances Powers, 45, of Lebanon, Pa., who has early-onset Alzheimer’s. ``If Congress cuts back support for research, they are dooming my children and my nieces and nephews, and the generations to come, to continued suffering from this disease that could be cured with government support.″

Powers recounted how she deteriorated from being the organizer for her family to having ``brain blips″ and forgetting to pick up her children.

Powers’ mother also developed the disease at the same age. She said she watched her father spend all his savings for her mother’s care and then divorce her as a last resort so that the state would take over her care.

``She died in a despicable state hospital where the conditions were deplorable,″ Powers said. ``I know a lot about what I am walking into, because I took care of my mother and I watched her vanish as a person,″ Powers said. ``My children are now watching me.″

Also telling their stories were Walter Dawson, a 12-year-old from Falls City, Ore., whose father has Alzheimer’s; Elaine Millon of Galesburg, Mich., whose husband has the disease; Dona Lyttle of New York, who takes care of her mother; and David Stuczynski of Cleveland, whose mother died in January after a 16-year struggle with the disease.

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