Daisy Duarte knows there may not be a cure for Alzheimer’s in time to help her 60-year-old mother, diagnosed with the disease years ago.
But the 40-year-old Duarte, who’s tested positive for the gene that causes early-onset familial Alzheimer’s and expects to get the disease by her 65th birthday, hopes there just might be one for her.
Far from the headlines of a turbulent campaign, Duarte is one of millions of Americans with a very personal stake in the presidential election: research into Alzheimer’s and care for those who have it.
Scientists, advocates and families affected by the disease are pushing the federal government to spend more on Alzheimer’s research, which lags far behind that of other diseases including cancer, the one that garners the greatest attention nationally.
“Hopefully we will finally have a cure for this,” said Duarte, who’s from Springfield, Missouri. “If we get the funding I really believe we could do it.”
Medical experts agree that it could be possible to either delay the onset of the disease or stop its symptoms - after significant research.
The one candidate who’s making a detailed push is Democrat Hillary Clinton, who has had an interest in the disease since she was first lady.
“Everywhere I go, people talk to me about the quiet challenges that keep them up at night,” Clinton said in a statement provided to McClatchy. “One issue that comes up again and again is caring for a loved one with Alzheimer’s. . . . There’s so much helplessness, because there is so little anyone can do.”
Clinton proposes pumping $2 billion a year into Alzheimer’s research, saying it could lead to a cure in less than a decade.
Republicans have criticized Clinton for wanting to create spending programs without saying how she would pay for them, but this proposal drew bipartisan praise. Campaign aides say she would pay for the plan by raising taxes on the wealthy or closing tax loopholes, though they did not provide details.
As a senator from New York, Clinton co-chaired the Congressional Task Force on Alzheimer’s and pushed for money for research, including stem cell research, and a hotline that provides assistance for tens of thousands of callers each month.
Clinton aides said they did not know what had prompted her interest in the disease. But those in the field welcome it.
In September, Clinton met Keith Thompson, a New Hampshire librarian who cares for his mother, diagnosed with Alzheimer’s. Clinton teared up as Thompson talked about taking his mother to work with him since he can’t afford full-time care.
Other candidates also have talked about the issue.
– Republican Mike Huckabee, a former Arkansas governor, spoke about Alzheimer’s during a September debate in California. Republican Jeb Bush, a former Florida governor, has talked about his mother-in-law’s struggle with dementia.
– Four years ago, Republican former House Speaker Newt Gingrich advocated for brain research to help patients with Alzheimer’s, Parkinson’s and other diseases as a way to save trillions of dollars and create thousands of jobs as he campaigned for president.
But none as much as Clinton.
The Alzheimer’s Impact Movement, for example, has been sending information to presidential candidates and attending campaign events in the early nominating states of Iowa and New Hampshire. Only Clinton and fellow Democrat Martin O’Malley asked for additional information, said executive director Rob Egge.
“Hillary Clinton is so far ahead of everyone,” said Virginia Lee, a doctor at the Perelman School of Medicine at the University of Pennsylvania, who consulted with the campaign on the proposal.
Alzheimer’s is the sixth leading cause of death in the United States, but it’s the only one in the top 10 that doctors can’t prevent, cure or even slow down. It causes memory loss and halts the ability to carry out tasks such as talking, walking, even swallowing. It disproportionately affects women and minorities.
More than 5 million Americans suffer from Alzheimer’s, most over the age of 65. But with life expectancy nearly doubling over the last 70 years, that number is expected to triple to nearly 15 million by 2050.
“We’re on a collision course from a societal and economic standpoint,” said Ronald DePinho, president of the University of Texas MD Anderson Cancer Center in Houston, who studies age-associated degenerative disorders.
Last year, the National Institutes of Health invested $586 million in Alzheimer’s research. Congress passed a spending bill in December boosting it to $936 million for this year.
By comparison, more than $3 billion is spent on HIV research, more than $4 billion for heart disease and more than $6 billion for cancer research.
Susan Charnas, 71, of Manatee County, Florida, who cares for her husband, Eliot, who has Alzheimer’s, said more money should be spent helping to pay caregivers, who may charge as much as $25 an hour.
“Money is going to research, but research is a long way away,” she said. “What do you do in the meantime?”
Clinton’s plan would include caregiving, though there is no specific price tag for that piece of it. She wants to give a tax credit for those who care for family members, expand Medicare to cover care-planning sessions, support paid family leave for caregivers and create a program across the federal government to deal with the needs of paid caregivers.
Duarte, who sold her sports bar to care for her mom, a former teacher’s assistant from Chicago, has just completed her first year in a clinical trial.
“It’s good to see these candidates are finding something we are all fighting for,” she said. “I hope Hillary can make it happen.”
Numbers of people with Alzheimer’s by state in 2015
North Carolina 160,000
South Carolina: 81,000
Source: Alzheimer’s Association