Cort
Phoenix Rising Founder
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Maybe someday something like this will happen for the NEID's . Isn't this true:
We are bunch of small (very small) efforts looking at a very complex disease (group of diseases, really). With FM, IBS, IC and all other others we certainly have the numbers.. We really should have our own institute at the NIH.
Some of this is so ripe for CFS. How about this one?
And
http://www.nytimes.com/2010/12/16/us/politics/16alzheimer.html?_r=1&scp=2&sq=alzheimer's&st=cse
With Alzheimer’s Patients Growing in Number, Congress Endorses a National Plan
By PAM BELLUCK
Congress has voted unanimously to create, for the first time, a national plan to combat Alzheimer’s disease with the same intensity as the attacks on AIDS and cancer.
The bill, expected to be signed byPresident Obama, would establish a National Alzheimer’s Project within the Department of Health and Human Services, to coordinate the country’s approach to research, treatment and caregiving.
Its goal, the legislation says, is to “accelerate the development of treatments that would prevent, halt or reverse the course of Alzheimer’s” and “improve the early diagnosis of Alzheimer’s disease and coordination of the care and treatment of citizens with Alzheimer’s.”
The project would include an advisory council of representatives from agencies like the Centers for Disease Control and Prevention, theNational Institutes of Health, the Department of Veterans Affairs, the Food and Drug Administration, the Indian Health Service and the Centers for Medicare and Medicaid Services. Scientific experts, health care providers and people caring for relatives with Alzheimer’s would also be included.
“If you go to war, you have planning, planning, planning,” said RepresentativeChristopher H. Smith, Republican of New Jersey, who co-sponsored the bill. “Well, this is a war on a dreaded disease. We need to bring all the disparate elements together for the greatest possible result.”
While the act itself does not authorize more money, one of the recommendations of the national plan “is likely to be for an increase in research money for Alzheimer’s,” said another co-sponsor of the bill, Senator Susan Collins, Republican of Maine.
“We spend one penny on research for every dollar the federal government spends on care for patients with Alzheimer’s,” she said. “That just doesn’t make sense. We really need to step up the investment.”
The legislation was driven by the rapidly rising number of people with Alzheimer’s — about 5.3 million now, and expected to triple by 2050. The cost of their care to Medicareand Medicaid was about $170 billion last year. By 2050, Ms. Collins said, it will grow to $800 billion a year, more than the military budget.
The House passed the bill on Wednesday, and the Senate last Thursday.
The advisory council would draft an annual report on federally financed programs involving research, treatment, nursing homes and home care, recommending which to expand or eliminate. It would also ensure that members of ethnic and racial groups at higher risk for Alzheimer’s be included in research and treatment.
Alzheimer’s experts said the effort could make a significant difference.
“What really makes this so powerful is that it takes us from a lot of small efforts going on locally to doing something in a coordinated way,” said Dr. Kenneth Kosik, a neuroscientist at the University of California, Santa Barbara. “If there’s one thing we know in science it is that to draw conclusions we need numbers, large-size populations to study.”
The national plan will reinforce efforts to detect brain changes that occur years before people develop symptoms of dementia, and to develop drugs to prevent or substantially delay symptoms.
“Dealing with symptoms only after the fact is not going to solve the problem,” said Dr. Zaven Khachaturian, a former director of Alzheimer’s research for the National Institutes of Health. Delaying symptoms for just five years, he said, “we will cut down tremendously” on the number of people who live long enough to develop Alzheimer’s.
Representative Edward J. Markey, a Massachusetts Democrat who co-sponsored the bill, said his mother had had Alzheimer’s. “We’re trying to create a sense of urgency so that we’re developing multiple pathways that ultimately might be successful,” he said. “We’ve done it with polio, we’ve done it with AIDS.
“It’s a unique disease to the extent that patients can’t lobby for themselves, and the person close to them cannot lobby because they’re home taking care of that person. There are no Alzheimer’s survivors.”
A version of this article appeared in pr
We are bunch of small (very small) efforts looking at a very complex disease (group of diseases, really). With FM, IBS, IC and all other others we certainly have the numbers.. We really should have our own institute at the NIH.
Some of this is so ripe for CFS. How about this one?
And
http://www.nytimes.com/2010/12/16/us/politics/16alzheimer.html?_r=1&scp=2&sq=alzheimer's&st=cse
With Alzheimer’s Patients Growing in Number, Congress Endorses a National Plan
By PAM BELLUCK
Congress has voted unanimously to create, for the first time, a national plan to combat Alzheimer’s disease with the same intensity as the attacks on AIDS and cancer.
The bill, expected to be signed byPresident Obama, would establish a National Alzheimer’s Project within the Department of Health and Human Services, to coordinate the country’s approach to research, treatment and caregiving.
Its goal, the legislation says, is to “accelerate the development of treatments that would prevent, halt or reverse the course of Alzheimer’s” and “improve the early diagnosis of Alzheimer’s disease and coordination of the care and treatment of citizens with Alzheimer’s.”
The project would include an advisory council of representatives from agencies like the Centers for Disease Control and Prevention, theNational Institutes of Health, the Department of Veterans Affairs, the Food and Drug Administration, the Indian Health Service and the Centers for Medicare and Medicaid Services. Scientific experts, health care providers and people caring for relatives with Alzheimer’s would also be included.
“If you go to war, you have planning, planning, planning,” said RepresentativeChristopher H. Smith, Republican of New Jersey, who co-sponsored the bill. “Well, this is a war on a dreaded disease. We need to bring all the disparate elements together for the greatest possible result.”
While the act itself does not authorize more money, one of the recommendations of the national plan “is likely to be for an increase in research money for Alzheimer’s,” said another co-sponsor of the bill, Senator Susan Collins, Republican of Maine.
“We spend one penny on research for every dollar the federal government spends on care for patients with Alzheimer’s,” she said. “That just doesn’t make sense. We really need to step up the investment.”
The legislation was driven by the rapidly rising number of people with Alzheimer’s — about 5.3 million now, and expected to triple by 2050. The cost of their care to Medicareand Medicaid was about $170 billion last year. By 2050, Ms. Collins said, it will grow to $800 billion a year, more than the military budget.
The House passed the bill on Wednesday, and the Senate last Thursday.
The advisory council would draft an annual report on federally financed programs involving research, treatment, nursing homes and home care, recommending which to expand or eliminate. It would also ensure that members of ethnic and racial groups at higher risk for Alzheimer’s be included in research and treatment.
Alzheimer’s experts said the effort could make a significant difference.
“What really makes this so powerful is that it takes us from a lot of small efforts going on locally to doing something in a coordinated way,” said Dr. Kenneth Kosik, a neuroscientist at the University of California, Santa Barbara. “If there’s one thing we know in science it is that to draw conclusions we need numbers, large-size populations to study.”
The national plan will reinforce efforts to detect brain changes that occur years before people develop symptoms of dementia, and to develop drugs to prevent or substantially delay symptoms.
“Dealing with symptoms only after the fact is not going to solve the problem,” said Dr. Zaven Khachaturian, a former director of Alzheimer’s research for the National Institutes of Health. Delaying symptoms for just five years, he said, “we will cut down tremendously” on the number of people who live long enough to develop Alzheimer’s.
Representative Edward J. Markey, a Massachusetts Democrat who co-sponsored the bill, said his mother had had Alzheimer’s. “We’re trying to create a sense of urgency so that we’re developing multiple pathways that ultimately might be successful,” he said. “We’ve done it with polio, we’ve done it with AIDS.
“It’s a unique disease to the extent that patients can’t lobby for themselves, and the person close to them cannot lobby because they’re home taking care of that person. There are no Alzheimer’s survivors.”
A version of this article appeared in pr
