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.

If you have only recently begun to pay attention to the work of the U.S. Alzheimer's Study Group, one way of catching up on what this independent task force is doing to support the nation’s fight against Alzheimer disease is to read the companion story, which describes the nuts and bolts of the process and invites community feedback. But a more entertaining, colorful, and inspiring way to understand what the ASG is all about is to look back at their most recent public event. Last month, two ASG members testified before the U.S. Senate Special Committee on Aging in a hearing room packed with a quiet, attentive crowd. According to Senator Elizabeth Dole (R-NC), it was the largest hearing she had seen in her five years in the Senate. Called by Committee Chairman Herbert Kohl (D-WI), 11 senators attended the two-hour event, seven of whom in their introductory remarks mentioned their own experience with a parent afflicted by Alzheimer’s.

“This is really the story of the ASG as well. The ASG did not know these senators had a relative with AD. In America as a whole, many people have contended with these issues of loss and caregiving, and so it is in the Senate. You can’t find a random set of Americans who are disinterested because it is such a pervasive condition right now,” said Robert Egge, who directs the ASG staff, in an interview with this reporter.

It was the first time Sandra Day O’Connor, the retired Justice of the U.S. Supreme Court who is a member of the ASG, spoke publicly about her husband John’s Alzheimer disease, and she captivated her audience. Here is a quote from O’Connor’s testimony: “What we have to ask is whether this rapid growth [of projected AD cases] is inevitable. I think it is not, if we can fund the research…and get clinical trials coordinated and broadly based.... We might even encourage drug companies to do more, if they thought they could extend the life of the patent. It could take 15 years to do the testing, and if the patent life is 17 years, you are not going to have a lot of encouragement there.… [Alzheimer’s disease] is a problem that cries out for help.”

A central theme that is running through the ASG’s work came out clearly during the Senate hearing, as well. It is a focus on prevention, and allocating resources toward that goal. At the hearing, for example, Senator Carper (D-DE) said: “For every $100 that we spend helping to keep our parents, our grandparents, our aunts and uncles, in a nursing home, and to take care of them the last months, years of their life, we spend $1 in research and trying to figure out how do we prevent this disease and how do we cure it. And the sooner that we can wake up to spend $2, $3, $4, $5 for the prevention and cure, we can spend a lot less of those $100 bills.” Scientists working with the ASG emphasize the goal of prevention, as well. (See, e.g., Reiman comment.)

The Senators also heard testimony from ASG Co-chairmen Newt Gingrich, who brings an enthusiastic and visionary appreciation for explosive technology and science growth to bear on his efforts to modernize government structures and funding rules. Extending O’Connor’s theme about fostering treatment development, Gingrich suggested that all of pharma/biotech drug discovery in brain diseases, even common ones like Alzheimer’s, be treated as an orphan drug activity. This might help attract more investment in this difficult area, which has a lower success rate in terms of drug approvals than any other major medical need.

A White House Alzheimer’s Czar?
Above all, Gingrich argued that a problem of this magnitude requires a national strategy coordinated by a top-level appointee. It should not be left to a disparate, decentralized web of agencies and institutions that each march to their own drummer and communicate insufficiently. On funding, the former Speaker called for a tripling of the NSF budget, as this small agency funds much of the mathematics and physics innovation that underpin advances in AD research, such as new imaging, computing, or proteomics technology. He promoted increasing the NIH budget by 7 percent in real dollars every year.

Gingrich spoke extensively about spending priorities, bemoaning that the government is unable to distinguish properly between investment and cost. He further argued for substantial set-asides for young researchers to support more radical innovation than can be expected from older, well-established scientists who, he said tongue-in-cheek, have more prestige than new ideas. Gingrich finally argued to develop HIPAA-protected, anonymized ways to analyze electronic databases of tens of millions of health records in order to find predictors of disease and other helpful markers that are buried in those large datasets but can’t be efficiently mined at present. (Rapid learning from large datasets is also one of the five priority areas of the ASG.)

Gingrich made clear that he wants the ASG to reach beyond modest tweaks around the edges of how things are done currently. How internal checks and balances on the ASG will temper Gingrich’s firebrand energy during the final consensus negotiations remains to be seen. The panel will work to come up with recommendations that stand a real chance of being taken up, Egge said.

Besides links to newspaper, CNN, and NPR clips of the hearing, the ASG website has posted for download O’Connor’s and Gringrich’s pre-submitted written testimony as well as a transcript of part of the hearing. It makes for fascinating evening or beachside reading. Where else can one hear from a politician an impassioned, optimistic argument for revolutionary science on behalf of AD, chock full with outrageous quotes, studded with the words “insane” and “stupid,” and the line “this alone is grounds to replace the whole department.” Clearly, Gingrich has little patience for step-on-no-toes diplomacy when it comes to shaking up the system to do a better job on Alzheimer disease.

The Senators also heard from Chuck Jackson, who suffers from early onset Alzheimer disease as a member of the Wolga German families whose research participation has enabled the discovery of the first PS2 FAD mutations, and from AD researcher Rudy Tanzi, among others.—Gabrielle Strobel.

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.

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References

Webinar Citations

  1. Early Detection of Alzheimer Disease—A Virtual Town Hall Meeting

Other Citations

  1. ASG companion story

External Citations

  1. Register now
  2. two-hour event
  3. O’Connor’s testimony
  4. ASG website
  5. Rudy Tanzi

Further Reading