New efforts to tackle dementia are stirring to life around the globe, in part because U.K. Prime Minister David Cameron made it a prominent issue in his country’s 2013 presidency of the G8. Last December, he hosted leaders of the G8 (now G7) countries in London for the first summit dedicated to the illness (see Dec 2013 news story). From that, a World Dementia Council was appointed to stimulate innovation in treatment and care across the globe. The council includes 18 members from academia, industry, health care, and regulatory agencies. Following the summit, G7 countries planned four “legacy events” to address different issues in dementia care and research. At the Alzheimer’s Association International Conference 2014 held July 12-17 in Copenhagen, Denmark, the events’ hosts offered an update on their work.
“We feel the winds of change and collaboration, not only between researchers, but between countries, policy makers, and research funders,” said Yves Joanette, University of Montreal, Quebec, who chaired the session.
On June 19, the United Kingdom hosted the first legacy event in London. Scientists, world leaders, policy makers, and funding organizations discussed barriers to investment in research and ways to stimulate it. Dennis Gillings, who was appointed World Dementia Envoy by Cameron, described how the U.K.’s Medical Research Council used the meeting to launch a £16 million public-private partnership called the U.K. Dementias Research Platform (see Q&A with Gillings below). The platform is intended to bring together data from two million research participants in 22 existing cohorts within the U.K., from healthy controls to people with early stage disease. International researchers will be able to access this diverse data from a central portal and extract epidemiological and biomarker data. Also at the meeting, Cambridge-based Alzheimer’s Research U.K. launched its Defeat Dementia campaign, which aims to raise £100 million for new research over the next five years.
Three more legacy events will take place between now and February 2015. On September 11-12, France and Canada will co-host a meeting in Ottawa that will focus on more closely linking academia and industry, using big data, and engaging the biotechnology and IT industries. During a three-day event in Tokyo on November 5-7, participants will learn about Japan’s patient-care initiatives and unique, community-based education. Finally, on February 9-10, 2015, stakeholders will meet at the National Institutes of Health in Bethesda, Maryland, to discuss how best to translate targets from basic science to clinical trials, new strategies to prevent disease, and new ways to assess and monitor it.
Beyond these official meetings, other countries and organizations have offered support, said Joanette. For instance, Scotland recently held a conference on strategies for better diagnosis and care, reducing crisis points for patients, and boosting participation in clinical trials. The World Health Organization (WHO) has pledged to assist in the exchange of knowledge between high- and low-income countries to share successful prevention and care strategies. The Organization for Economic Co-operation and Development (OECD) has pledged to help countries develop dementia plans. The OECD will host a big-data workshop in Toronto right after the Ottawa legacy event to examine what should be shared to accelerate research, as well as best practices for data-sharing and barriers against it.
“The G7 legacy events indicate increased public awareness of dementia around the world,” said Ron Peterson, Mayo Clinic, Rochester Minnesota, who sits on the World Dementia Council. “There appears to be a solid commitment on the part of the G7 members to pursue strategies for dealing with dementia.”
At AAIC, some audience members wondered what will come of all of this. “What is the culmination of all this activity?” asked Zaven Khachaturian from the Campaign to Prevent Alzheimer’s Disease by 2020. “There need to be recommendations to OECD, the Alzheimer’s Association, WHO, or to various societies to translate your findings into actionable legislation.” Joanette responded that a concluding legacy event in March 2015 will assemble an action plan from reports of the preceding meetings. Others called for dementia to be added to the agenda of the G20 Summit in Australia, given that dementia extends beyond the developed countries of the G7.
Alzforum sat down with Gillings after the session. A biostatistician, businessman, and consultant to the pharmaceutical industry, Gillings is the founder of the Fortune 500 company Quintiles, the world’s largest biopharmaceutical development and commercial outsourcing firm.
Q: What is your role as World Dementia Envoy?
A: I’m trying to coordinate a variety of efforts throughout the world to accelerate disease modification. Research will get there in the end, but we don’t want to wait 20 or 30 more years. My role is to speed up the process.
Q: It seems a daunting task to essentially coordinate researchers, politicians, and industry around the world to conquer dementia.
A: It is, and one can’t coordinate everything that’s going on in the world. But what you can do is pick out things that need further stimulating, where there’s not enough effort, things that could be accelerated if you invested more. And you can also stimulate more collaboration. I think collaboration is one of the things that is not happening enough.
Q: How will the World Dementia Council accomplish these goals?
A: We’ve boiled everything down into three big priorities. One area is the regulatory environment. We want to change the risk/reward ratio. In dementia, 104 products have been put into clinical trials since 1993 and only three have been approved. We’d like to deploy progressive authorization so that applications for new drugs get a better consideration. I’ve also tried to put a special emphasis on dementia by coining the phrase “life-shattering disease.” It would be wonderful if regulatory agencies recognized this as a category; there might be an elevation of priority as a result of that designation. In terms of finance, we want to get more investment in research. The pharmaceutical industry is one big source, but we want governments to increase their investment. The third area I’m calling big data. We’d like a one-stop shop to access almost all data on dementia to facilitate more open-source collaboration in research, and more access to state-of-the art care for patients.
Q: What has changed since the G8 summit last December?
A: Awareness. It has increased by more than 50 percent, according to market research indicating that people over 50 in the U.K. are now more worried about dementia than cancer. That is amazing. It points to a shift in public perception. This galvanizes the politics. I would also say that David Cameron’s personal involvement has been enormously beneficial, because that automatically raises the profile.
Q: What’s the general feeling you perceive from politicians, scientists, and industry leaders facing the dementia challenge?
A: If I judge by these meetings and the legacy event in London, there’s increasing momentum and enthusiasm. With the U.S. setting out its plan in 2012, with the G8 formulating its strategy last December, and these legacy events being held, clearly things are happening. There’s also more funding. All that, I think, is elevating optimism considerably.
Q: Where will the necessary funds come from?
A: A variety of sources. First of all, governments are investing more. But the lion’s share, if this is going to be successful, will come from the pharmaceutical industry. That’s why the risk/reward ratio is critical. I would say that dementia needs at least a tripling of investment to have a hope of getting to our goal. That’s not going to happen overnight, but all this awareness, public perception, and media attention is good.
Q: Have any concrete initiatives or funding resulted from the G8 summit?
A: In the United Kingdom, there’s been an upping of government funding. Alzheimer’s Research U.K. announced their initiative to raise £100 million. David Cameron wrote to the other G7 countries about creating a global charter on dementia. My hope is that an international entity would come out of this, where my role and that of the World Dementia Council would evolve to have its own governance structure and financing, whereby these efforts get continued under a permanent executive leadership.
Q: What does this mean for the average person concerned about a loved one, or who has a family history of dementia?
A: If you’ve had dementia in your family and are concerned about genetic linkages, it would be nice to know we are making progress and that you won’t have to suffer from the same disease. If we can delay dementia onset by five years or more, that would be very substantial to the man on the street.
Q: Thank you for this conversation.
A: It’s important that researchers read and get energized about this.
See Gillings speak at the June 19 legacy event in London here.—Gwyneth Dickey Zakaib