The following is a guest post by Linda Furlini, PhD, who works as a research associate at the Faculty of Dentistry, McGill University, in Montreal.
Editor’s note: When Hillary Clinton’s campaign gathered reporters on a conference call recently to announce her plan to devote $2 billion annually to Alzheimer’s research that would lead to a cure by 2025, most of the major news media reported on the announcement. For one day broadcasters, print and online news journalists focused on the story and then attention moved on to other developments. We think this will continue to be a story in 2016 since Alzheimer’s disease affects so many. We asked Canadian researcher Linda Furlini to share some personal and professional insights with journalists on how such a research investment might realistically affect millions of seniors and caregivers.
I am glad that Hillary Clinton is paying attention to Alzheimer’s disease. Age is a risk factor for developing Alzheimer’s and baby boomers are aging rapidly. As Clinton already knows, Alzheimer’s disproportionately affects women. In 2006, I wrote an article documenting not only this poorly known fact, but that women frequently are those that care for someone with this disease.
Both my parents were affected by Alzheimer’s disease simultaneously at age 60, with no known family history of the disease. I was a caregiver for 20 years of my young adult life. I wrote a doctoral thesis in 2005 on the educational needs of family caregivers looking after persons with Alzheimer’s disease. So, my interest in Alzheimer’s disease is at the same time personal and professional.
If Clinton were to win the election and could devote funds to Alzheimer’s research, I would hope journalists would hold her feet to the fire and ask if she has taken the time to critically examine the existing evidence on this disease before spending any money. Since the late 1980s I have followed developments in the field and the results are not pretty. Researchers have focused on drug development without enough understanding about the disease. The end result is that pharmaceutical companies have been able to make extravagant profits from drugs of questionable worth, while misleading desperately sick people and their caregivers. Unfortunately, current directions in drug development are following the same path as those of the past. For over 25 years, the amyloid hypothesis that led to the development of these ineffective drugs has remained the hypothesis of choice. Yet, after all this time, no evidence exists that confirms whether amyloid plaques are a precursor or a result of the disease. In fact, many people who show evidence of amyloid plaques under brain imaging show no evidence of symptoms and conversely, some with symptoms show no evidence of amyloid plaques.
Journalists need to cut through the hype and scientific jargon and ask hard questions. They need to hold Clinton accountable for the types of research she funds so that if new drugs are developed, they make a meaningful difference. They need to ask tough questions, such as, are selected biomarkers for the disease proven before testing drugs? Are we testing people without a diagnosis of Alzheimer’s? How can testing Alzheimer drugs on those who may only suffer from a minor cognitive impairment for a multitude of reasons be considered credible science?
Will there be a breakthrough soon? I sincerely doubt it. More to the point, journalists need to ask what will be done to help those living with the disease and their family caregivers. It is abhorrent that caregivers are providing this care without adequate support and resources. Many empty their savings and/or quit their jobs and most suffer dire physical and psychological health consequences that only compound over the generally long course of the disease. Caregiving for persons with Alzheimer’s and other dementias should be a shared societal responsibility and journalists should ask Clinton how she will ensure this happens.
While many news outlets reported only what was stated by designated speakers in the campaign’s conference call, a few, including the Wall Street Journal and STAT, went further and put the news in context:
“Experts in the field praised Mrs. Clinton’s proposal, though they said there are no guarantees researchers can find a cure for Alzheimer’s by 2025, the goal Mrs. Clinton has set. Timothy Armour, president and chief executive of the Cure Alzheimer’s Fund, which raises money for disease research, said a cure within 10 years is “a stretch goal.”
“This is a very complex disease and it will take complex answers,” he said. “We probably will not have one white pill to kill the disease. It’s going to be a mixture of different kinds of therapies taken at different times.”
“Most scientists, however, caution against promising ‘cures’ for serious diseases — arguing that the most realistic strategy for many conditions is to make as much incremental progress as possible, rather than expecting major breakthroughs.”