30 Jun 2008

See also ASG companion story.

Share your ideas with the ASG by joining the Alzforum's Webinar "Early Detection of Alzheimer Disease" on 9 July 2008, 2-3:30 p.m. (U.S. EST). Register now.

As our country has awakened to the fact that by mid-century the number of people with Alzheimer disease could triple, many stakeholders are concerned that society is not responding with an appropriate sense of urgency. In response to rising calls for action, last year, the Alzheimer’s Study Group (ASG) was formed as an independent, non-partisan panel of U.S. national leaders from government, academia, and the business community. The Congress of the United States charged this group with developing a national strategic plan to head off the growing national crisis of AD, which is projected to afflict some 14 million Americans and consume up to a trillion dollars in Medicare spending by 2050 if present trends continue. The ASG intends to issue a report in February of 2009, just after a new administration has taken office. The Alzforum has introduced the Alzheimer’s Study Group to our audience before (see ARF SfN story; ARF ASG story). Now that the panel is deep into its work, here is an update of what it is doing.

The ASG grew out of a bipartisan congressional task force on Alzheimer disease headed by Senators Hillary Rodham Clinton (D-NY) and Susan Collins (R-ME), and Representatives Ed Markey (D-MA) and Christopher Smith (R-NJ). It was established in July 2007 as a 501(c)(3) nonprofit organization. Its leaders are former Speaker of the House Newt Gingrich and former Senator Bob Kerrey. They chose Gingrich’s Center for Health Transformation as the institutional home, and obtained support from the Booz Allen Hamilton consulting firm to assess the state of Alzheimer disease in the year 2007. The ASG will use the remainder of this year to craft a set of overarching recommendations to accelerate AD research, drug testing, and prevention efforts, as well as to expand and improve care and training/support for caregivers. The ASG will disband when its work is complete. Six months after the group has named all its members, it is midway through the process, and along the way has assembled a record of public documents to make its work transparent. It has also reached a point where input from Alzforum readers can inform and advance its work.

None of the study group members are Alzheimer disease experts. This was a deliberate decision. According to Robert Egge, the ASG’s Executive Director, Gingrich and Kerrey felt that the ASG’s recommendations would have the best odds of being acted upon if the people who made them did not have a particular stake in the outcome, e.g., no grants on the line, clinic to fund, drug to expedite. The metaphor would be a corporate board where people who are not employed by the corporation have a general responsibility to help the success of the enterprise. The ASG members represent the different stakeholders to whom the recommendations will be directed, and as such have a good sense for ensuring that they will be viewed as “actionable” and practical. The group comprises those with a congressional background in the U.S. House and the Senate, former heads of four different government agencies, leaders of the business community and of geriatric medicine, as well as the judiciary and the media.

They Know What They Don’t Know
That said, the ASG members are keenly aware that there is a world of specific knowledge about AD that they lack, Egge said. They see their role as one of policy translation, that is, to learn from experts in the field and to communicate recommendations on how to boost the country’s current efforts on AD to the new incoming government and leaders in industry and philanthropy. To this end, the ASG has spent the past few months on a fact-finding mission to assemble and distill a knowledge base. In doing so, the ASG tried to reach out methodically to the community, Egge said. The group communicated with the head of each Alzheimer Disease Research Center in the U.S. to assemble a representative set of informal advisors on AD research and clinical issues. These were then invited to give their input, and some 125 did. The ASG similarly reached out to representatives of the caregiver community. It also engaged Ray Woosley, who heads the Critical Path Institute, as well as leaders in clinical trials outside of AD.

In addition, ASG staff conducted 25 interviews and invited presentations that formed the basis of discussion at the ASG. The list of interviewees is public on the ASG website. This page also has available for download briefing presentations from 17 experts, which make for interesting summer reading on broad challenges and opportunities across issues of care, insurance coverage, and the path toward better trials and prevention. Further below, this ASG page lists, for public download, a variety of current perspectives to round out an assessment of the current state of affairs in AD, ranging from impediments to drug development, the Center for Disease Control’s Healthy Brain Initiative, several takes on prevention initiatives, as well as views from funders and recommendations to the ASG from a range of parties. Finally, the ASG took into consideration resource documents, such as a general Report on Alzheimer’s Disease in 2007 compiled by the Center for Health Transformation, which is downloadable at the bottom of the ASG Resources page.

Together, this material led to a general conversation among ASG members and staff about the challenges in AD to date. It also provided the foundation for the ASG’s first work meeting, held on 11 March 2008. The ASG strives for transparency, and in this spirit, all key aspects of this meeting are public—the agenda with the invited speaker’s PowerPoint presentations, a PDF of the summary, and a brief recap of the outcome.

“The ASG is extremely impressed with the work that has already been done across the board from basic research to hospice care. They have heard that these professionals often feel that they could be much more productive if there was a more favorable environment for their work. So the mission of the ASG is to help talented and dedicated people by developing the right recommendations, whether it be on the federal policy or state policy level, or even to the private sector,” Egge said.

Having taken stock of the field in this way, the ASG decided to focus their strategy development on five areas. They are as follows:

Encouraging Information Sharing & Collaboration among Researchers
Improving Alzheimer’s Clinical Trials
“Rapid Learning” from Large Population/Epidemiological Datasets
Community-based Care Model
Better Information to Support Policymaker Decision Making

The meeting summary defines these areas further. In the months that followed this meeting, ASG staff assembled task forces for each of these areas, which are charged with developing a set of recommendations for their topic. A follow-up story will list the names on the task forces once they are complete.

The March 11 meeting also brought out several themes. For one, the ASG wants to avoid a “disease war” where one disease competes for capped funds at the expense of another. The goal instead is to bring additional resources to the table and look for changes that will encourage investment. Another was that this new group coming to the problem does not aim to reinvent the field. In contrast, it seeks to identify solutions that are already working in some places and deserve to be endorsed, highlighted, supported with further funds and logistics, and expanded to be available more broadly. This is an area where you, esteemed reader, can directly contribute at this time.

Where You Can Help
“The ASG is looking for feedback on what people who are working in the trenches see as the most promising initiatives today,” Egge said. On this question in particular, the ASG is seeking public input from the AD research and care communities at this point in the process. If you are aware of research programs that work particularly well, or of enlightened, integrated care approaches; if you know the best day care programs for early-stage patients, come forward. Perhaps you know of local initiatives to create a favorable environment for support groups, or of clinical care/research arrangements that serve families especially well. How about state regulations that foster pharma and biotech investment in this difficult area? International perspectives are welcome, as well.

The ASG in June/July 2008 is at the recommendations development stage, and for this goal is at present considering solutions that already work. Ways to communicate include e-mailing work documents to public-comment@alzstudygroup.org, or alternatively you can e-mail admin@alzstudygroup.org to request access to the ASG’s wiki. Also, the Alzforum is producing a “virtual town hall” live discussion to gather input from invited panelists and invite open discussion by the community. The discussion will focus on Early Detection of Alzheimer Disease and will be held on 9 July 2008, 2:00-3:30 p.m. (U.S. EST).

Selected community feedback will go into the upcoming ASG meeting later this summer, when the group will start formally discussing recommendations to address the challenges identified at the March meeting. At that point, the ASG will invite community feedback on the candidate recommendations. In the fall, the group will meet once more to finalize the list of recommendations, and in the winter the ASG staff will compose the narrative leading up to the final report next year.—Gabrielle Strobel.

The U.S. Alzheimer’s Study Group: What It Does, What You Can Do

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