Despite high-profile failures of potential treatments for Alzheimer’s, experts say increased visibility and progress on the underlying causes of the disease are signs of hope.
With a new case of the brain-debilitating disorder developing every minute in the U.S., the need for effective treatment is urgent both for patients and the medical system as the population ages.
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Elements of progress include increased awareness from policymakers and the general public. With that, has come new funding and less stigma, patients and experts said at Preparing for a Treatment, an event tackling the response to the disease, sponsored by The Hill and Biogen on Thursday.
Still, the rate of new patients expected to be diagnosed is not keeping up with new medications and models for the health system to cope, they said.
One prominent expert called for more of a grass-roots movement.
“The reason why we have come close to defeating breast cancer, to a large extent, is because women around the world came together and said ‘we have to do something,’ ” said Charbel Moussa, director for the Laboratory for Dementia and Parkinsonism at Georgetown Medical Center. “We need that for Alzheimer’s.”
The field has moved from one central hypothesis — centered on plaques forming in the brain — to a more nuanced understanding of the proteins and other factors that are most consistent with the onset and development of the disease, Moussa said, calling that a better vantage point paving the way toward a cure.
Since the disease was first identified in 1907, research has come a long way, according to Francois Boller, a neurologist treating patients at George Washington Medical Facility Associates and a noted pioneer in the field.
Patients, advocates and doctors studying and treating patients spoke to the challenges for patients and the medical profession, including the need for new payment models and preparation for how the health system would handle a cure.
Elizabeth Jurinka, chief health policy adviser for Democrats on the Senate Finance Committee staff, said despite party divisions, the issue of treatment and research is nonpartisan on Capitol Hill.
Senate Finance ranking member Ron Wyden (D-Ore.), for example, has worked with Sen. Johnny Isakson (R-Ga.) on new payment models for treating patients at home. Still, she expressed some worry that the debate over ObamaCare repeal would eat into lawmakers’ attention.
“That is the kind of thing that members of Congress I think would like to be working on and the fact that we continue to talk about the Affordable Care Act and how to dismantle it is a distraction,” Jurinka said.
“We need to break this logjam and starting working on payment reform in a more meaningful way,” she said.
Ian Kremer, executive director of the LEAD Coalition, a coalition of patient groups, academic and trade groups, was asked about the federal government’s response and challenges.
Despite increased funding, he said the federal hiring freeze enacted by President Trump was having an adverse effect on grants at the National Institutes of Health.