Advocacy / AMAC Action On Capitol Hill / Politics

Alzheimer’s Accountability Act – H.R. 4351

AMAC recently supported a new bipartisan Alzheimer’s initiative – the “Alzheimer’s Accountability Act.” Jointly introduced by Representatives Brett Guthrie (R-KY) and Paul Tonko (D-NY), H.R. 4351 would strengthen Congress’ ability to prioritize and direct critical funds to the specific areas that researchers believe hold the best promise of treating and preventing Alzheimer’s disease. Though Congress already uses the National Alzheimer’s Plan to provide recommendations for priority actions and coordination of all federally funded programs in Alzheimer’s disease research, care, and services, the plan does not indicate what level of funding is needed to accomplish its goals. In particular, the National Alzheimer’s Plan aims to effectively treat and prevent Alzheimer’s by the year 2025 – a goal for which AMAC wholly advocates. Therefore, this bill requires the National Institutes of Health to provide Congress with the information it needs regarding funding levels to carry out the objectives of the plan. H.R. 4351 does not appropriate any funds, but AMAC believes that it will enable Congress to make responsible fiscal decisions at a time when federal resources are limited. On behalf of mature Americans and the many families who have been impacted by Alzheimer’s disease, AMAC is proud to support H.R. 4351.

 

June 12th, 2014

The Honorable Brett Guthrie                                                                 The Honorable Paul Tonko
2nd District, Kentucky                                                                            20th District, New York
308 Cannon House Office Building                                                     2463 Rayburn House Office Building
Washington, DC 20515                                                                         Washington, DC 20515

Dear Representatives Guthrie and Tonko,

On behalf of the 1.2 million members of AMAC, the Association of Mature American Citizens, I am writing to extend support to H.R. 4351, the “Alzheimer’s Accountability Act.” This notable piece of legislation would strengthen Congress’ ability to prioritize and direct critical funds to the specific areas that researchers believe hold the best promise of treating and preventing Alzheimer’s disease.

Since 2010, Congress has looked to the National Alzheimer’s Plan to provide recommendations for priority actions and coordination of all federally funded programs in Alzheimer’s disease research, care, and services. However, the plan does not indicate the amount of funding needed to accomplish the objectives and goals presented. Thus, H.R. 4351 would rightly authorize the National Institutes of Health (NIH) to submit a Professional Judgment Budget to Congress, outlining the justification for funding the research initiatives of the National Alzheimer’s Plan. Through the Professional Judgment Budget, NIH experts would be able to identify what level of federal funding will be necessary to achieve the primary goal of the National Alzheimer’s Plan, which is to effectively treat and prevent Alzheimer’s by 2025.

While this specific bill does not appropriate the funds to carry out the objectives of the National Alzheimer’s Plan, it does equip Congress with the data necessary to make responsible, efficient fiscal decisions. At a time when federal resources are limited, AMAC believes it is imperative for NIH to provide Congress with clear funding priorities in order to combat this devastating disease more effectively in the future.

Like many Americans, AMAC remains very concerned with the devastating nature of Alzheimer’s disease and its affect on mature Americans and their families. Thanks to your attention for this significant issue and your steadfast commitment to mature Americans and seniors, AMAC is proud to support H.R. 4351, the “Alzheimer’s Accountability Act.”

Sincerely,
Dan Weber
President and Founder of AMAC

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Ivan Berry
7 years ago

Hi PaulE,
You are really good at this. Keep up the good work, and know what a help you have been in our understanding.

JD
7 years ago

The answer to the ALZHEIMER’S PROBLEM IS “FIRE YOUR MD NOW “, and find you a Vet that knows how to
take care of his farm animals.He makes sure they get all the right vitamines, and minerals, and feeds them the right food. Your doctor does not how your body works. Your body need’s 60 minerals to be healthy.We can not get them eating the American diet. In America our animals eat better than we do.

Ollie Octopus
7 years ago

This is not a legitimate government function and I believe it to be unconstitutional. But, this is 2014 and the politicians do what they darn well please. What I think is a good way to spend your hard earned tax dollars might not agree with your idea of where the money should go. While I agree that Alzheimer’s is a terrible disease, research should be funded privately and not by government.

Mare
7 years ago
Reply to  Ollie Octopus

I agree with Ollie Octopus: The government already has their hands in too many projects (where they don’t belong) and will only make a mess of this, too. Who will profit? the government, not the people.

Sandra
7 years ago

IMO Congress is not charted to find cures for anything. They are complicit in polluting our food supply which is at the root of this disease, When I read “strengthen Congress” I realized this would be just another way to spend money without accountability. We are assaulted by our air, water, and food supply and redirected funds are supposed to fix that?
My father died from this awful disease and I have dedicated myself to means by which I won’t meet the same fate. The answers are available, and they will not come from anything the government can or should do, especially in the realm
of health. Just more money down the drain.

Chuck
7 years ago

I was going to comment but forgot what I was going to say. :-(

Everybody's Shrink
7 years ago
Reply to  Chuck

Haha. But I forgot what I was laughing at…

Dayana
7 years ago

All of my questions sethdel-ttanks!

Cecilia
7 years ago

I agree with everything PaulE said. Alternative research, treatment protocols and ideas outside are eschewed by NIH, if past actions are any measure.

PaulE
7 years ago

While I applaud the desire to address what is probably the most horrible disease that is going to afflict a disproportionate number of people over the next 20 to 50 years, I have a few questions I hope you can answer about this proposed legislation.

Question 1: What happens to a new promising avenue of research that doesn’t happen to be on NAP for whatever reason? Would it be eliminated from consideration for funding? We all know government bodies are not known for being up on the latest in pretty much anything. So do we really want to prioritize research spending on government information that may be badly out of date or flawed?

Question 2: Politicians have a terrible track record of being able to direct funds, for any purpose, to the most effective areas. Frequently, what such “priority spending” boils down to is who gives the right campaign contributions to the right politicians to ensure their particular research gets “priority funding” in their state. Do we really think politicians will do better with Alzheimer’s research?

Question 3: Who is going to validate that the information coming from NIH hasn’t been skewed to ensure politically connected friends of any administration aren’t being favored? The fact that the information from NIH is “only” being used to establish “funding levels” to meet a target, as opposed to actually doing an appropriation of the funds is essentially Washington double-speak. One group of politicians tells another group of politicians, that actually do the appropriations themselves, what the appropriation levels have to be.

Ivan Berry
7 years ago
Reply to  PaulE

PaulE, all good points and questions. If the people think it’s a real problem, solve it by throwing more politics and money at it. I would rather the NIH, NAP and Congress take a real nap and let the free economy work. Identify a problem, and this disease is a problem, and let the industry take action. If we treat this as a chronic disease, then Mega pharmacy will make billions off of government dollars. Treated as acute and temporary it will be pushed aside.
What should be allowed is that physicians and hospitals take the inititive and be free to do so under free trade principles. Let the research be cause related and not a drug to treat worst symptoms. Once a cause or causes are identified, then a cure becomes more likely over time. I know there are many out there who don’t have much time left, but what’s the alternative? No matter how we proceed, it will not be a quick fix.
There is a good case that our diet as prescribed by the government, the so-called food pyramid, is partly to blame for inflammatory disease. This as well as arterial disease has an inflammatory component, as does diabetes. Why should not those responsible for medical science be the ones to address medical problems from their already established Universities and Hospitals? It should be their research, not government sponsored stake-holders.
If Big Pharma makes billions on colestrol lowering drugs as a chronic condition, what makes anyone think that they will not keep dementia as a chronic state to be treated to slow and only slow the progression?

PaulE
7 years ago
Reply to  Ivan Berry

Agreed Ivan. The best route is to minimize or completely eliminate the constant “governmental tweaking”, via poorly thought out legislation being piled upon other poorly thought out legislation, all in the name of “doing something”. I have yet to see a single case where government inspired priorities have yielded better results over the long run than the free market addressing the exact same problem. All most government efficiency and priority programs do is introduce unneeded layers of bureaucracy, reams of ever-increasing paperwork and regulations, all of which stifles the true innovation needed to solve problems.

While I would appreciate answers to my questions from either AMAC or the politicians drafting this legislation, I do realize the probability of getting a serious response is rather low. It’s the nature of Washington and how it operates these days. In all likelihood, it is doubtful the politicians who drafted this legislation even thought of the issues I referenced. So much of legislation today is created simply to show their constituents that they are “doing something”, even if that something doesn’t improve anything. I call it “feel good legislation”, so they can tell their constituents they are doing something.

The term “limited government” is completely lost on 99.9 percent of the politicians in Washington. To most of them, the answer to everything is more and more legislation to micro-manage all facets of everything. All for our benefit or so they claim. What little is left of the free markets is being systematically legislated out of existence in favor of government approved and government directed solutions that some bureaucrat thinks is the proper way to go. Along the way, we of course lose the innovation that allowed us to become the exceptional nation of ideas and solutions that is now being slowly dismantled.

Anne
7 years ago
Reply to  PaulE

Ivan and PaulE, you both have valid points. But if you see the activity of REDUCING Government funding, you both will see this will follow the category of “maintenance” and if the patient isn’t provided with drugs and quality care, it will eradicate itself.

I am referencing the articles on “death panels” even though this term is not in the forefront but the actuarial figures indicate the need to reduce the care provided to those that are not able to return to a functional quality of life.

PaulE
7 years ago
Reply to  Anne

Anne,

You make my point for me. Obamacare and the IPAB (the death panels your reference) is an example of government stepping in to “do something”, that not only doesn’t lead to better quality care and outcomes, but actually seeks to limit the treatment options of the sick based on government bureaucrats and so-called “government experts”. These bureaucrats, with no input from the doctor or patient involved, decide what treatments are “allowable” or not based on illness, age, and other subjective criteria that the government has decided is now relevant. I don’t think anyone could seriously argue that Obamacare has improved the delivery or effectiveness of health care in this country or reduced its cost. Yet it is a terrific example of the government “doing something”, that it neither has the authority to do or the skills to manage effectively.

I understand the government notion of reduced spending equaling putting something in maintenance mode. That is a government contrivance designed to intimidate lawmakers into continuing funding of all manner of programs and projects under the implied threat of “bad things will happen if you don’t”. So politicians just keep upping the budgets of everything and spending more and more money we don’t have on a lot of things that aren’t the role of government.

What Ivan and I are talking about is that the federal government shouldn’t be involved in the doling out of money for what it determines are the appropriate avenues of research that should be pursued. Even if you ignore the constitutional limitations on what the federal government has the authority to do, the federal government is notorious for picking the wrong priorities and making bad choices.

Doctors and scientists engaged in research constantly communicate with each other in various ways and know far better which avenues of research appear the most promising at any given time. In a free market environment, that information attracts the investment of various major drug and genetics companies to fund those avenues to see if they will lead to treatments or a potential cure. Some research proves valuable over time, while other avenues lead down a dead end. Investment in a free market environment adjusts accordingly to wherever the research look most promising.

In a government backed environment, whatever avenues are initially selected tend to continue receiving research dollars no matter what. Even if research in that area leads to a dead end, the bureaucracy tends to keep the checks flowing. Thus the reason for my initial questions above.

Alzheimer’s is a terrible disease and I would want the best research avenues pursued to find a cure. I don’t want research dollars doled out by the government based on which Congressman sits on an appropriations committee or whether a drug company has given a generous donation to some Senator’s campaign re-election fund or the administration wants to pay back a donor for past contributions. I want the funding based solely on which research is showing the most promise. That means the funding must come from the private sector.

Anne
7 years ago
Reply to  PaulE

I do agree that the Government should be kept out of the research. But again even without the Government involved research, Obamacare has made a death panel decision regarding “anyone” that cannot be considered able to care for themselves. So why should any research funding even be allocated to this other than that what is done via private enterprise. But Government still gets involved since the need to approve drugs etc would fall into the already existing agencies.

PaulE
7 years ago
Reply to  Anne

Obamacare and the IPAB are an issue that we could spend months going over. There have been numerous articles written or referenced by AMAC on both subjects for quite some time now. Sadly, the reality is that the longer Obamacare exists, the less likely it is that it will ever be repealed or even substantially modified to eliminate the most onerous parts. Restoration of the health care insurance environment, that existed before Obamacare, becomes physically impossible. Simply because Obamacare has essentially destroyed the entire operational infrastructure the old health insurance environment depended on to properly function.

That is why when Obamacare eventually results in unacceptable pain and costs for the vast majority of the public, within a few short years, the Democrats will unveil their “fix” in the form of another big push for single-payer. The idea being that the public will have been “softened up” enough, by the pain and cost Obamacare will inflict, that the public will just roll-over and accept pretty much anything that promises to make the pain go away. It will be interesting to see if the American people have the intelligence NOT to fall for this obvious ploy.

As to the IPAB (death panels), the genesis of that can be traced to Zeke Emanuel (Rahm’s brother), who updated the old Progressive idea of eugenics to take into account the concept of “worth of the individual to society”. In essence a young, healthy person, who is likely to work and pay more taxes for more years has more value to society than an older, more sickly person, who is either nearing the end of his or her ability to work and thus pay as much taxes or is retired and thus considered “unproductive”. In this insane theory, the older the individual, the less society should spend on the individual for medical care as a whole. Therefore when it comes time to determine how finite resources should be spent, the rules, via IPAB, will favor approval of spending money on the young, healthy person with many more years of paying taxes ahead of him or her versus the older individual, who will pay less in taxes.

Finally you state “So why should any research funding even be allocated to this other than that what is done via private enterprise. But Government still gets involved since the need to approve drugs etc would fall into the already existing agencies.” I think you’re looking at the research world through the lens of everything being done in the context of being United States centric. Yes, if research were ONLY done to benefit the American market, you would be correct. However, medical research is very much a diversified, global business with research teams and labs setup in several countries around the world.

Just because the United States has chosen to hobble itself with Obamacare and anything brought to market in the United States having to be “blessed” by the FDA, a cure for Alzheimer’s, cancer, or any number of other diseases still has value to the rest of the world. A viable treatment or cure for Alzheimer’s would be worth hundreds of billions to numerous countries around the world. We may be the biggest drug market, in terms of total money spent on prescriptions, but we’re not the only market. Think of what other countries would be willing to pay to gain a massive economic and societal advantage over the United States by being able to inoculate their populations from a devastating disease like Alzheimer’s.

Ivan Berry
7 years ago
Reply to  PaulE

Paul E, I put a comment at the top so all could see it if they visit the site again.
I thank you for your helping all to understand.

PaulE
7 years ago
Reply to  Ivan Berry

You’re welcome Ivan. I was concerned that my comments on the topic may have contained too much detail for most people. I know a number of people have expressed a desire for short comments from all of us, because they don’t want to devote a lot of time to reading all this stuff. However, the nature of the topic required some clarification, so people could better understand where these policies originated from.

Ivan Berry
7 years ago
Reply to  PaulE

PaulE, if you show up here again, let me state:
One of the things that really stand out to me is how you take my tendancy to assume more understanding of my shorter and incomplete thought process, like my mentioning “chronic” vs “acute” conditions. It’s obvious you understand, but I’m not too sure others always or even often do.
Ivan

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