By Mari Margil
My family has a long history of being involved with the Alzheimer’s Association, so I was excited to hear about the development of the Washington State Plan to Address Alzheimer’s Disease and Related Dementias. Even more exciting is that Governor Inslee will officially launch this plan on February 12th in Olympia, during the Alzheimer’s Association’s annual Advocacy Day.
What most interests me in the State Plan is Goal 7: “PROMOTE RESEARCH AND INNOVATION INTO THE CAUSES AND EFFECTIVE INTERVENTIONS FOR DEMENTIA.” I refer to it as simply the Research Goal.
In 2012, the National Plan to Address Alzheimer’s Disease was introduced by the U.S. Department of Health and Human Services with the goal to prevent and effectively treat Alzheimer’s by 2025. With over 5 million people in the U.S. living with Alzheimer’s, a number expected to grow to over 7 million by 2025, finding ways to prevent and effectively treat Alzheimer’s over the next decade is essential. We cannot accomplish this without research.
There are, however, many challenges to Alzheimer’s research. Many of which are addressed in the State Plan.
The first barrier, of course, is money.
Research in the U.S. is largely funded at the federal level. The Alzheimer’s Association has successfully worked with Congress to increase research dollars by hundreds of millions over the past few years. For fiscal year 2016, federal funding for Alzheimer’s research is close to $1 billion.
While funding for research comes largely from the federal level, under the Washington State Plan collaboration between state and local agencies to expand funding opportunities is a key goal.
The second barrier is diversity.
Researchers find a lack of ethnic and racial diversity with research participants. This is true for a number of reasons including language and cultural barriers.
To address this the State Plan will “develop relationships with key community stakeholders to assess and pilot culturally specific and relevant services” to increase opportunities for a greater diversity of people to learn about and access research trials.
The third barrier is the lack of research participants.
This is where I believe the State Plan could have the biggest impact on research.
According to the Pharmaceutical Research and Manufacturers of America (which represents some of the major researchers and biotechnology companies that work on Alzheimer’s) recruiting and retaining clinical trial participants is currently “the greatest obstacle to developing new Alzheimer’s treatments.”
Today, according to the National Institute on Aging, more than 70,000 volunteers are urgently needed to participate in more than 150 active clinical trials and studies taking place in the United States.
Seventy thousand volunteers. We can do better, and the State Plan will help us get there.
The fourth barrier is a lack of resources for Primary Care Physicians.
According to a 2014 study published in the journal Health Matters, one of the most significant barriers to research participation is that primary care physicians lack sufficient time to learn about research trials in their area. To address this, the State Plan outlines a strategy to engage local physicians about Alzheimer’s research, and to simplify the process of referring patients to research trials.
Part of making this happen is helping physicians with even having the conversation with their patients about why they should consider participating in research. And their patients have, understandably, lots of questions which the physician may or may not have sufficient information to answer. Those questions include concerns about possible side effects, whether the patient will have to stop taking certain medications, whether the research will be invasive, and many more. Patients may also fear being stigmatized as having been diagnosed with Alzheimer’s.
Helping physicians in overcoming barriers with their patients is critical to increasing the number of participants in trials.
Studies show people would volunteer more for research if they have more information. A Research America poll, for example, found that 76 percent of Americans are very, or somewhat likely, to volunteer for a research study, if they are referred by a physician.
Together, we must make sure the State Plan is fully implemented to help us reach the goal of preventing and ending Alzheimer’s by 2025.
Mari Margil serves as the Alzheimer’s Association Ambassador for Washington State’s Congressional District 5.