Senate Appropriations Subcommittee on Labor, Health and Human Services and Education Holds Hearing on Alzheimer's Disease
FDCH TRANSCRIPTS
Congressional Hearings
Apr. 1, 2003
Senate Appropriations Subcommittee on Labor, Health and Human Services and Education Holds Hearing on Alzheimer's Disease
MURRAY:
Thank you, Mr. Chairman, and thank you and Senator Harkin for your tremendous bipartisan work on funding research at NIH. It's made a tremendous difference and I really appreciate your having this hearing, and your continued advocacy for that. And really to thank everyone that is here today, to remind all of us with everything going on in the world, there are people who are dealing with a serious illness in their families every single day and how important it is for us to continue to fund the research.
I want to ask the panel, because all of you have mentioned genetic work on this and one of the most promising breakthroughs in understanding the disease and seeking treatment options has been the discovery of a possible genetic link that could lead to early diagnose and treatment.
But I'm concerned that the development of genetic testing could be hindered by lack of protection against discrimination in employment and insurance if an employer notes that a worker could be pre-disposed to Alzheimer's Disease, they could use that information to deny future employment or advances, or exclude them from insurance coverage, and we're going to be marking up a test bill on genetic discrimination in the Health, Education, Labor Committee sometime here in the near future, and I wondered if any of you wanted to comment on how important genetic non-discrimination legislation is for your research.
ALBERT (?):
There is no question that everybody who is involved with genetic research is very concerned about confidentiality. At all the medical centers that I know there are special consent forms that need to be signed if anyone is in a genetic study that is separate from the consent form for the rest of the study. We lay out for individuals how concerned we are about confidentiality and how careful we are, but we also point out to them that right now there are concerns that there would be discrimination in the workplace and we're very grateful for the legislation that you're proposing.
MURRAY:
Dr. Hunt?
HUNT:
I would certainly reinforce what Dr. Albert has said, in particular with genetic disease, the issues of even informed consent take on a special meaning in that a given individual may consent to studies regarding his or her own genetics, but the family members, family members who may not be giving their own consent, are in the end unavoidably affected by informed consent of any one, and so in the end I think it is only the kind of legal protection that you are working so hard to develop, that really can be functional and will go beyond the ability of any single individual to make a decision about his or her own confidentiality.
MURRAY:
I hope we get your help and support in getting that through. It's been a long road but I think it needs to be done, so I appreciate that. We've had a lot of conversation today about the amount of money needed for research, and Mr. Goldberg was very clear that we need to find an answer to this disease because of the costs in Medicare and Medicaid, but at the same time there are thousands, if not millions of families who are dealing with it every single day.
Alzheimer's is not a disease that just affects one person, it affects everyone around them and their ability to be able to be productive in their own lives. And Sam Mikulski, who is the (inaudible) member on the Aging Subcommittee and the Health Committee has been really working hard to expand efforts on family caregivers support, and part of the Older Americans Act, and I wanted to just, because I think it's so important, if you would comment on how important these kinds of services are to patients and families, and is there anything else we should be doing to help support families?
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MURRAY:
Dr. Hunt, can you give us an example?
HUNT:
Well the first stage of a study called Reach, which was a multi-center study designed to look at nine different intervention components for reduction of stress, has now been completed and on the basis of that first study, has led to a second generation that we will reach to, which has taken the most promising components of these several studies, into a clinical trial. It includes such things as providing respite care and looking at the new communications modalities such as the World Wide Web to provide resources, information, and support ...
SPECTER:
Dr. Hunt, would you complete your answer in writing? We have six more witnesses and we are going to have to conclude this hearing by 11:00.
MURRAY:
Thank you, Mr. Chairman. I know my time is up and I would love to hear more because I think we have to pay attention to the families who are taking care of these people as well. Thank you.