107th Congress

Senate Appropriations Subcommittee on Labor, HHS, and Education -- Alzheimers Disease -- April 3, 2001

Members Present

Present for all or part of the hearing were: Arlen Specter (R-PA), Chairman; Tom Harkin (D-IA), Ranking Member; Senator Larry Craig (R-ID) and Senator Harry Reid (D-NV).

Witnesses:

Panel One: Representative Edward J. Markey (D-MA) and Representative Christopher H. Smith (R-NJ), Co-Chairmen of House Alzheimer's Disease Task Force.

Panel Two: Dr. Richard J. Hodes, Director, National Institute on Aging (NIA).

Panel Three: Dr. Steven T. Dekosky, researcher, University of Pittsburgh Medical Center; Ms. Christine Frey, Central Illinois Chapter, Alzheimer's Association; Mr. John Wagenaar, Alzheimer's disease Patient; and Mr. David Hyde Pierce, Actor.

Purpose of Hearing

The Senate Appropriations Subcommittee on Labor, Health and Human Services, and Education convened this hearing to discuss progress in Alzheimer's disease (AD) research. The hearing was held in conjunction with the Alzheimer's Association's annual public policy forum.

Statements of Witnesses and Questions

Panel One: Representative Edward J. Markey (D-MA), co-chairman of the Bipartisan Congressional Task Force on Alzheimer's Disease, whose mother died of AD, spoke fondly about his parents and lamented the indiscriminate nature of the disease. Next, Mr. Markey listed accomplishments that the task force achieved last year. This year, he asked that the Senate support a $200 million increase in AD research funding in FY 2002 and provide $2.25 million to fund the NIA AD Clinical Research and Training Award program.

Representative Christopher H. Smith (R-NJ), co-chairman of the Bipartisan Congressional Task Force on Alzheimer's Disease, expressed his concerns about embryonic stem cell research. Mr. Smith reasoned that embryonic stem cell research is unnecessary because other options, such as research involving adult stem cells, exist. Mr. Smith echoed Mr. Markey's request for AD funding in FY 2002.

Questions - Senator Specter responded to Representative Smith by asserting his support for embryonic stem cell research. Senator Specter said that the literature he has read suggests embryonic stem cells may be more effective than adult stem cells. Further, given that many embryos will be destroyed anyway, the Senator feels it is proper that they be used for research. Senator Harkin also articulated his support for embryonic stem cell research, stating that to cut off embryonic stem cell research is to cut off promise. Although there may be alternative sources of stem cells, he feels that embryonic stem cells shouldn't be neglected.

Panel Two: Dr. Richard Hodes, Director, National Institute on Aging (NIA), summarized recent progress in AD research. He discussed the ongoing AD clinical trials NIA is supporting, eight of which are AD prevention trials. He also highlighted basic research advances, some of which led to the design of an experimental AD vaccine that has been tested in mice and will be tested for efficacy in humans beginning later this year by a private pharmaceutical company. He also cited caregiving studies that the Institute is supporting with the goal of alleviating AD caregiver burden and improving patient care delivery.

Questions - Senator Specter asked Dr. Hodes what the NIA is doing with the increase it received for FY 2001. Dr. Hodes said that in addition to supporting more high quality research, the NIA is supporting eight AD prevention trials. These trials are very costly, $20 to 40 million, and the increase in funding makes these trials possible. When asked how additional funding would be used next year, Dr. Hodes responded that the NIA is only able to fund 25 percent of the meritorious applications it is currently receiving. Thus, an increase will improve the Institute's ability to support more critical research projects. Given the 14 million Americans who are estimated to get AD in this century, the need to support more meritorious research projects cannot be underestimated. Senator Specter asked if more funding could conquer AD in the foreseeable future. Dr. Hodes could not provide a timetable; however, he stated that the outcome of the ongoing clinical trials might enable us to develop an informed estimate in this decade.

Senator Harkin asked Dr. Hodes to elaborate on the details of a NIA-supported clinical study, the Resources for Enhancing Alzheimer's Caregiver Health (REACH) project. Senator Harkin also asked Dr. Hodes how NIH has been involved in the AD vaccine trials being conducted in the private sector. He asked that NIH work with the private sector during the next phase of these clinical trials.

Panel Three: Dr. Steven T. Dekosky is the Chair of the Medical and Scientific Advisory Council Board for the Alzheimer's Association. He asked the Committee to support a $1 billion increase in AD research funding over the next 3 years, which will require a $200 million increase in FY 2002. This increase, accORDing to Dr. Dekosky, could enable the NIH to support research in three broad areas: large-scale prevention clinical trials; basic research to complete our understanding of AD pathology, risk factors and diagnosis; and social and behavioral research to improve management of the disease and reduce the costs associated with it. He also discussed recent scientific accomplishments.

Ms. Christine Frey, Central Illinois Chapter, Alzheimer's Association, is an advocate of AD funding because of the effect the disease has had on her family. Thirty-two members of her family in the last five generations have suffered from a form of early-onset AD. Most of her family members were diagnosed with AD before they turned forty years old, and those diagnosed died by or before they turned fifty-five. Ms. Frey discussed her own fund raising efforts and asked the Committee to provide for more AD research funding.

Mr. John Wagenaar, an AD patient and Iowa resident, recounted the early signs of his diagnosis. Currently. Mr. Wagenaar is on Aricept, and he understands that even though the medicine helps him on a daily basis, it is not a cure. Mr. Wagenaar stated that he would like to continue speaking about AD until he becomes too ill.

Mr. David Hyde Pierce, Actor, is on the Alzheimer's Association's National Board of Directors. Mr. Hyde Pierce's deceased father and grandfather were both diagnosed with AD. Mr. Hyde Pierce focused his testimony on the economic implications of AD. AccORDing to Mr. Hyde Pierce, in the year 2000, Medicare spent $31.9 billion to care for beneficiaries who had Alzheimer's, and that cost will rise to 49.3 billion by the year 2010, an increase of 54.5 percent. He also stated that Medicaid spent $18.2 billion on nursing home care for people with Alzheimer's disease, and by 2010 the cost will reach $33 billion, an 81.3 percent increase. The real problem, accORDing to Mr. Hyde Pierce, will be when the baby boomer generation needs these services, resulting in an even greater threat to the economy.

Questions - Senator Specter asked Dr. Dekosky to help him justify the Association's request for additional money in light of so many competing interests. Dr. Dekosky replied that AD research funding should be viewed as an investment. Devoting more money now to preventing the disease will preclude the country from spending much more later on health care delivery. He also stated that AD research could also benefit other diseases, such as cerebrovascular disease and diabetes. Chairman Specter concluded the hearing by stating that he and Senator Harkin would work hard to get the maximum possible funding for AD research in FY 2002.

Prepared by Lauren Higgins/OD/OLPA