Alzheimer's and Brain Awareness Month
Floor Speech
BREAK IN TRANSCRIPT
Mr. TONKO. Thank you, Representative Garamendi, for bringing us together in this very Special Order as we discuss the impact of Alzheimer's upon the quality of life not only of the individual living with the disease, but on family members and loved ones that surround that individual. So much of the work that we do in this House, so much of the work done on the Hill here in Washington, needs to be guided by the moral compass.
Our budget priorities should reflect who we are as a people and the compassion that is required as we see these numbers continually grow--balloon--in terms of an impact on the budget. And that should challenge us to do all that we can to be not only compassionate, but to be effective when it comes to the fiscal impact of what is happening to far too many families across this country.
It is a known fact now that Alzheimer's is the most expensive disease in America. That should strike home. That should call upon our hearts and our minds to respond with dignity and with effectiveness to the given issue at hand. Our efforts for Alzheimer's need to be enhanced. There is no mistaking it. This is the most expensive disease in America. It is impacting the budget here in Washington. Our national numbers are a challenge, and we need to address the budget not only in sound strategy for the present moment, but with preventative elements brought to bear.
So when we look at the most recent data--and those data are very telling--for 2014, the calendar year of 2014, the numbers are there, and it will remind us that $214 billion was the need, the drawdown, for speaking to Alzheimer's, responding to the Alzheimer's situation. That is a large number that is only projected to grow exponentially. As more and more baby boomers ascend the age ladder, climb that ladder, we should only anticipate that doing what we are doing is not going to be enough, that research needs to take hold here.
We have the intellectual capacity as a nation. We have resources at our fingertips, and the priority here for providing the preventative elements of research are important. The President has offered an initiative with the study of the mind, the brain, that can provide several opportunities. It can release the information, the documentation, that is required to move forward to find a cure for this ever-growing disease.
Look at the stats. Representative Garamendi, when we look at the research moneys, for every $100 invested in those individuals and families that are impacted by Alzheimer's, 25 cents is spent on research--for every $100, 25 cents. That is a very minute amount of investment, investment that has an anticipated lucrative return, paying dividends for all of us to address a cure, a hope for individuals. This country requires our government to respond in full fashion so that public-private partnerships in research institutes like the NIH, the National Institutes of Health, are funded appropriately. Accordingly, with the data that have been assembled, knowing what needs to be done, we should go forward with those efforts.
Now, I am reminded, Representative Garamendi, routinely by families--and many women will draw that perspective for me, that of those who are living with Alzheimer's in this country, two-thirds--two-thirds--of the individuals living with Alzheimer's, or 3.2 million people, are women. This disease is impacting women in a disproportionate measure.
It is extracting from us all sorts of voluntary efforts that are required. Volunteers are responding as unpaid caregivers. We know the stats. The data are compelling: 15.5 million volunteers, caregivers, providing unpaid services, unpaid care, equaling 17.7 billion hours. These are staggering numbers, 15.5 million providing 17.7 billion. That amasses to $220.2 billion in terms of services provided, unpaid services provided.
So it is not only costing the Federal Government money, projected to balloon heavily, but it is also extracting $220 billion worth of unpaid services that are provided to individuals by loved ones, by those concerned in their community, for the struggles that these individuals and their family members are facing. So this behooves us to do much better than we are doing.
We are a compassionate society. We are unique. We have opportunities galore. I know what can happen. I have talked to our team in my district. Beth and the team from Alzheimer's Association of Northeast New York, they have done a tremendous job. I see what they do for respite care and what they are doing for services with the Alzheimer's Cafe, where people gather and cluster. They are given music therapy. There is an enhanced quality of life. It is with dignity that we respond. But more needs to be done, and there has to be that element that is provided out there that is speaking to prevention, that is speaking to a cure.
So, Representative Garamendi, there is much to be done.
I was lead Democrat on the Alzheimer's Accountability Act, which responded to the planning requirements that were earlier set up statutorily in this country. That act, the Alzheimer's Accountability Act, that passed successfully in both Houses and was signed into law by the President, requires that a professional judgment budget be put together. As was stated earlier on the floor, until 2025, there needs to be this commitment made for research for Alzheimer's and related diseases.
But we furthered the quality of that legislation, of that statute, by requiring professionals to project the numbers that are needed. That is a very important element. Clinicians and professionals in the medical community will tell us, they will advise what that number ought to be. That is speaking with integrity, with the veracity that is required, with the dignity, and with the compassion that is so much required for the Alzheimer's community.
So again, I thank you, Representative Garamendi, for having that heart, for leading us in this Special Order so as to comprehend what we need to do here, to move that moral compass, to be there for those individuals, to be there for those unpaid caregivers, and to be there for the research community, but most importantly, to be there for the soul that is struggling with Alzheimer's or dementia-related diseases. We are at our best when we connect emotionally so that we can put together the programmatic response and the intellectual response that enable us to provide that light at the end of the tunnel which is so important and so meaningful to the families that endure.
I thank you, Representative Garamendi.
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Mr. TONKO. Absolutely.
Representative Garamendi, it only takes one visit, but there have been many visits that I have made to the centers, the day care center operations that are conducted for individuals and families who are living with Alzheimer's, and to witness and hear the hurt, the confusion, the pain that surrounds the individual. It is enough challenge to try and get this done in as quick a fashion as possible.
But if that doesn't move us, the economics on this. You know, we earlier talked about the $214 billion impact in 1 year--some of our most recent data. Well, that is 1 in every 5 Medicare dollars. How much are we willing to have that take over the Medicare expenditures before we come to our senses to say, let's do more in research, let's do a preventive response? Does it need to grow that much more? Does the drain on Medicare, does the reflection of Alzheimer's-related Medicare expenditures need to be that much greater to bring us to a response? The challenges are there, the data are there. We need to move accordingly.
Now, earlier, I had expressed that two-thirds of the people living with Alzheimer's, the 3.2 million people, happen to be women. Well, 60 percent of the unpaid caregivers happen to be women. So there needs to be a response here to enable people to be addressed with a sense of compassion, with dignity brought into the equation. It is absolutely essential.
And when we talk about those caregivers and the $220.2 billion that is the calculation for the volunteerism they offer as caregivers, of that community of caregivers, they have been worn down physically. So the price tag for them is an additional $9.3 billion in terms of response to their physical health care needs. This is a drain on families, on loved ones. It is an undignified outcome for far too many Alzheimer's patients who require our support, who have earned the respect of this body and Congress moving to provide for research opportunities.
Now, one other effort that I am making now in the aftermath of the Alzheimer's Accountability Act, that victory being behind us now, I have now served as the lead Democrat on the HOPE for Alzheimer's Act, which would authorize Medicare investment in sound planning upon diagnosis of Alzheimer's so that individuals and their families who are so diagnosed can sit down and plan accordingly for their care, for their treatment, for their needs.
That is an important bit of quality that can be introduced for the individual and her or his family so that their life, already severely impacted by this outcome, can be as manageable as possible. And we are hopeful with some 183 cosponsors of a bipartisan nature who have come forward to say, Sign me up for the HOPE for Alzheimer's Act.
So isn't that what we are supposed to be? Aren't we those agents of hope? Do we walk away from this dilemma? Do we walk away from this need? Do we walk away from the struggle, the pain, the hurt, the confusion that people live with every waking hour of every day? Or do we respond in that all-American fashion and say, yeah, we have the intellectual capacity as a Nation; yes, we have the resources.
It is an order of prioritization. And that priority here needs to be a response, a full-fledged response, a compassionate response, a loving response coming from us as individuals and collectively as Congress to say, yes, we support these efforts that are required, that are possible. Do not deny the possibilities. Let us go forward and be those sound decisionmakers who understand that this issue, when addressed accordingly, with human compassion offered, with the humanization of this process, we are then offering a cost-effective outcome. A study of the brain initiative that the President has advanced should be supported.
These resources that are required for planning, for research, for services, for respite need to be funded accordingly. It is within our grasp, and it makes sense to do so.
So, Representative Garamendi, I thank you for leading us in this Special Order, which is absolutely key to public information exchange.
For those who may be viewing, I would suggest that you contact those of us who serve you in Washington and let us know that you want this to be a priority. Tell us you believe in the research capacity of this country. Tell us you want to humanize that response, more deeply respond to the individuals and families that are so impacted.
When we hit so many people, when we see the millions who are living with this disease, we can't escape that impact falling upon us. Neighbors, family members, friends who we know are living with this disease require our attention, require our responsiveness.
So I thank you for leading us in what is a very valuable discussion.
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Mr. TONKO. That chart is very powerful. The trillions--with a T--will really balloon our budget, and really it is undoable. It gets to a level where it will exhaust, it will overwhelm other areas of investment that are required.
But translate that from dollars into human suffering, pain, confusion, reduced quality of life. That is a calculus that needs to be made. If it is going to save us money and at the same time respond with that moral compass, why are we not doing that, why are we not responding?
So, to me, that is where we are at. When you see the unleashing of technology, of research, of the potential for progress to be made, it is there. It is documented from so many perspectives in work that is done by the National Institutes of Health and others. For many, they will say, well, leave it to the private sector. No, there is a track record up there for this country to have stepped up to the plate and made a difference, for vaccines and other sought-for outcomes that affected people in a positive way. They gave them hope.
Our government has a track record of having stepped up and invested in research where perhaps the private sector wouldn't go or where we have shaved some of the risk off of that demand for research in a public-private partnership. So it is there within our potential. We should not deny our loved ones, our constituents, our country the opportunity to advance the cause of research and to respond again with a sense of hope for those who are living with this within this darkness. We can and we must do better.
I am happy to work with individuals like Representative Garamendi to push to make a difference and to be there in a responsive manner, and I thank you.
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Mr. TONKO. And as we are concluding here, I was just bringing to mind one of the Alzheimer's town halls that we are required to conduct, and it told me a few things: that this disease is percolating lower and lower into the age demographics.
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Mr. TONKO. So it may be--I am just guessing here--that it is more than just genetics. It may be environmental in its impact or cause. Whatever it is, let's go for that cause.
At one of these townhalls, a contemporary of mine whom I have known for a long time, as I have known her husband for a long time, said: ``My husband knows my voice, but he doesn't know my name.''
How do we not say ``yes'' to research? How do we not say we want to do all that we can to make a difference?
When we do so, we are going to save our budget. We are going to save our budget a great number of consequences by being that powerful force that will do things academically, soundly, wisely, effectively, efficiently.
That is what this business is about, a thoughtful response, a heartfelt response that, by the way, is the budgetwise thing to do.
Let us respond as a government, as a nation.
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