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“FUNDING ALZHEIMER'S RESEARCH” mentioning the U.S. Dept. of Justice was published in the House of Representatives section on pages H904-H908 on Feb. 10, 2015.
The publication is reproduced in full below:
FUNDING ALZHEIMER'S RESEARCH
The SPEAKER pro tempore. Under the Speaker's announced policy of January 6, 2015, the gentleman from California (Mr. Garamendi) is recognized for 60 minutes as the designee of the minority leader.
Mr. GARAMENDI. Mr. Speaker, ``Alzheimer's,'' a word that brings fear and trauma to families all across America and, indeed, around the world. Tonight we are going to spend our time talking about this dreaded disease for which there is no known cure and which always ends in death.
I would like now to turn to my colleague, this being a bipartisan Special Order hour, unusual to be sure, but absolutely appropriate given the fact that this illness affects virtually every American family. I yield to the gentleman from Virginia (Mr. Goodlatte).
Mr. GOODLATTE. Mr. Speaker, I thank the gentleman from California
(Mr. Garamendi) for organizing this Special Order for 1 hour to talk about the blight that we face here in America, and I am sure in many other countries around the world, known as Alzheimer's. I note the flyer that the gentleman sent around, a beautiful picture of him and his wife, Patti Garamendi, and some other family members, one of whom I am sure has had this difficulty themselves. So again, from the bottom of my heart and my constituents, I thank you for taking the time to organize this Special Order.
Alzheimer's robs an individual of a most valued possession--their memory. But we will not forget the them. I have met with many families across the Sixth District of Virginia who have been impacted by Alzheimer's, and it has been my honor to represent them by being a member of the bipartisan Congressional Alzheimer's Task Force.
Tonight I would like to take a moment to thank the men and women who care for those suffering from Alzheimer's--the spouses, children, grandchildren, friends, doctors, and nurses who assure them who they are, where they are, and affirm for them their dignity as an individual. Though their memories and clarity may fade, who they are is not truly gone. And we will not forget those suffering from Alzheimer's.
I look forward to working with my colleagues to promote bipartisan policies that will benefit the fight against this dreaded disease of Alzheimer's.
I thank the gentleman for yielding me this time to participate.
Mr. GARAMENDI. I thank the gentleman from Virginia for joining us and for his commitment to this very serious issue. There are approximately 5.1 million Americans who have Alzheimer's today, and it is expected to substantially grow. As the baby boomers come into their latter years, we would expect to see as many as 13 million Americans with this disease in the years ahead. It will be an incredible challenge for this Nation.
I now yield to the gentleman from New York (Mr. Higgins) for him to join us and share his thoughts on this issue.
Mr. HIGGINS. I thank the gentleman from California for bringing this issue to the House floor, underscoring the urgency of investing, through the National Institutes of Health, proper funding to find a cause and, thus, a cure for Alzheimer's. As the gentleman said, 5 million Americans are living with Alzheimer's. It is the sixth leading cause of death in the United States. Death from Alzheimer's increased 68 percent between the years 2000 and 2010, while deaths from other major diseases decreased.
The cost to the United States is over $200 billion a year. Without a breakthrough, treatment will cost $1 trillion a year by the year 2050. We are still seeking an adequate level of funding. For every $100 that the National Institutes of Health spends on Alzheimer's research, Medicare and Medicaid spend $26,000 caring for those who have the disease.
In Congress we have two pieces of legislation: the Alzheimer's Accountability Act, which would ensure that Federal priorities and goals for Alzheimer's research actually reflect what scientists believe is needed; and the HOPE for Alzheimer's Act, which would provide Medicare coverage for the clinical diagnosis of Alzheimer's disease and for care planning of newly diagnosed Americans.
But all of this, as the gentleman from California pointed out, becomes localized and becomes very personal. The origins of Alzheimer's are unknown, but the end is absolutely certain. It ends in losing your cognitive ability, your dignity, and, ultimately, your life.
In western New York, we have approximately 130,000 people who are impacted by Alzheimer's: 32,000 people who are afflicted, and 96,000 who love and provide care for the afflicted. That number is expected to triple by 2015.
The Alzheimer's Association of Western New York works year-round to highlight the effect of Alzheimer's disease and to help people and caregivers touched by this disease.
One of the people who was touched by this disease is Nancy Swiston, a constituent who lost her mom, Grace Swiston, who bravely fought the disease for 10 long years. Today, Nancy volunteers with the Alzheimer's Association of Western New York to be a voice for those suffering from the disease and the families who care for those with Alzheimer's. Nancy's story is one of too many families across the Nation we share, but we commit to fighting with her to raise awareness in funding for a cure that we will all embrace one day.
I thank the gentleman from California again for committing us to this important issue.
Mr. GARAMENDI. Mr. Higgins, thank you for sharing your thoughts on this dreaded disease for which there is no known cure and there is no way to diagnose it until it is present. You cannot get ahead of this illness, but there are ways we can make progress. You pointed out what has happened over the last decade with extraordinary research efforts, and this chart really lays it out there as to where we are.
For breast cancer, we have seen a decline of 2 percent in breast cancer deaths; prostate cancer, an 8 percent decline; heart disease, a 16 percent decline; stroke, 23 percent decline; and then one of the great victories, HIV/AIDS, a 42 percent decline in the number of deaths. This is the result of research, an extraordinary amount of research going on, not only in the United States but around the world, resulting in significant drops in the death rates for those diseases.
On the other hand, Alzheimer's, where we have just over $500 million of research, we have seen a 68 percent increase in the death rates. This is the story of Alzheimer's. This is the challenge that we face. This is the challenge that every American family faces and our communities. We will talk more about this a little later.
The cochair of the Alzheimer's Task Force here in the Congress of the United States is the gentlewoman from California (Ms. Maxine Waters), who has joined us this evening to talk about the work that the task force is doing and her own commitment to this profoundly important issue. Maxine and I have had the pleasure of working together for 40 years, so it is all good.
Ms. MAXINE WATERS of California. Thank you so very much.
John Garamendi, I would like to thank you not only for allotting me this time this evening, but I would like to thank you for your commitment to educating on this issue and to helping our colleagues to understand that we must focus on this issue and that we must do more to support research. You are indeed a leader. This certainly is not the first time that you have organized one of these evening meetings on this, and I thank you for the work that you are doing.
Mr. GARAMENDI. Thank you.
Ms. MAXINE WATERS of California. Mr. Speaker, as cochair of the Congressional Task Force on Alzheimer's Disease, I know how devastating this disease can be for patients, families, and caregivers. The task force works on a bipartisan basis to increase awareness of Alzheimer's, strengthen the Federal response to the disease, and provide assistance to Alzheimer's patients and their caregivers. I am proud to lead the task force, along with my returning cochair, Congressman Chris Smith, and incoming cochairs Michael Burgess and Chaka Fattah.
Alzheimer's is a tragic disease affecting millions of Americans, and it has reached crisis proportions. There is no effective treatment, no means of prevention, nor even a method for slowing the progression of the disease. According to the Centers for Disease Control and Prevention, 5 million Americans are living with Alzheimer's disease as of 2013. This number is expected to almost triple to 14 million by the year 2050.
The cost associated with Alzheimer's disease and other forms of dementia are also growing at an unsustainable rate. A recent RAND study of adults ages 70 years and older found that the total economic cost of dementia in 2010 was estimated to be $109 billion for direct care alone. That is higher than the cost of both heart disease and cancer. Furthermore, when the cost of informal care is included, the total cost rises to between $159 billion and $215 billion.
We must act now to change the trajectory of this disease. The bipartisan-supported National Plan to Address Alzheimer's Disease calls for a cure or an effective treatment for Alzheimer's by the year 2025. Reaching this goal will require a significant increase in Federal funding for Alzheimer's research.
Last December, I joined together with task force cochair Congressman Chris Smith to call for a $200 million increase in funding for Alzheimer's research in the President's budget for fiscal year 2016. However, while the President's budget did recognize the importance of Alzheimer's research, it only increased funding by $51 million. This year, I plan to work with my colleagues on the task force to make certain Congress appropriates robust funding for Alzheimer's research to meet the urgent need.
I also plan to reintroduce three bills to expand the available resources for Alzheimer's research and assist patients, families, and caregivers.
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First, I will reintroduce the Alzheimer's Caregiver Support Act. This bill will authorize grants to public and nonprofit organizations to expand training and support services for families and caregivers of Alzheimer's patients. With the majority of Alzheimer's patients living at home under the care of family and friends, it is important that we ensure these caregivers have access to the training and resources needed to provide proper care.
Second, I will reintroduce legislation to reauthorize and improve the Missing Alzheimer's Disease Patient Alert Program, a small but effective Department of Justice program that helps local communities and law enforcement agencies quickly identify persons with Alzheimer's disease who wander away from their homes and safely reunite them with their families. This program is very valuable. It is a valuable resource for first responders. More importantly, it protects vulnerable Alzheimer's patients and brings peace of mind to their families.
Several years ago, I offered an amendment to continue funding for this program, which cost only $1 million for the year. The following year, I called for, and received, a doubling of the funding for this important program.
Since then, I have made sure this program gets funding every year. I am not happy with the amount of the funding. We need to do more, and we have to fight more beyond 2015 into the 2016 budget to make sure that we get more money because it is desperately needed.
Finally, I will reintroduce the legislation to require the U.S. Postal Service to issue and sell a semi-postal stamp, with the proceeds helping to fund Alzheimer's research at the National Institutes of Health. This would encourage concerned individuals to get involved and contribute to Alzheimer's research efforts, just as many have done in the case of the popular and successful Breast Cancer Research semi-
postal stamp.
Our Nation is at a critical crossroads. The situation requires decisive action to search for a cure and protect the millions of Americans currently living with Alzheimer's disease. Together, we must take every possible action to improve treatments for Alzheimer's patients, support caregivers, and invest in research to find a cure for this dreadful disease.
Once again, I want to thank John Garamendi, my colleague from California, whom I have worked with for many, many years, for again organizing yet another night Special Order.
Mr. GARAMENDI. Congresswoman Waters, thank you so very, very much for your leadership as cochair of the Alzheimer's task force here in Congress. Obviously, it is leading to some good pieces of legislation. Last year, when you introduced that legislation, I had the privilege and pleasure of being a coauthor. I will join you again as you introduce those pieces of legislation. I bet we can get all 194 members of the task force on board. That will give us--let's see, we need 18 plus 6--24 more Members and we can get it past the House of Representatives.
Ms. MAXINE WATERS of California. Let's do it.
Mr. GARAMENDI. Let's do it. Yes, we can. Si, se puede.
Thank you very much. I really appreciate your leadership on this. I know this is a personal issue for you with family having been impacted by it.
I want to just take a few moments--and I know you are going to have to take off and head to another meeting--but Alzheimer's is very, very much a personal thing.
This is my wife, Patti, with her mother as her mother was entering the last year of her 15-year struggle with Alzheimer's. We had the good fortune of Patti's mom, Merle, living with us in our home, and we were able to take care of her. We had a daycare come in to handle the issues during the day. But then in the evening, Patti and I took care of her. It turned out to be a good experience for us where the family really pulled together, the grandchildren and the great-grandchildren all coming together.
I think our situation was, perhaps, unusual in that my mother-in-law was always kind, always gentle, even though in the last couple of years she could not speak and was unable to really move very much. But, nonetheless, it was a period of time where the grandchildren came to know her in a very different way.
I remember one incident that took place about a year, maybe 14 months before she died. Her speech was garbled and not really clear. We couldn't understand. But our little 3-year-old granddaughter climbed up on great-grandma's bed and was listening to the great-grandmother talk. The rest of us adults were gathered around and we were talking about whatever it was, and our little 3-year old began to translate what great-grandma was saying. We were suddenly caught up in the awareness that, while the mind was not functioning fully, it was, nonetheless, functioning in a way in which this woman, who was then 90 years old, was able to understand what we were saying, but because of this disease was unable to articulate, at least to us, her involvement in the conversation.
It was one of those moments when we realized that this illness destroys the mind a piece at a time. It doesn't just wipe out, as a stroke might, but it takes away the cognitive ability of the mind in a slow progression through time. This progression was about 15 years, but other progressions might be very, very rapid.
I know earlier today our colleague from Missouri, Vicky Hartzler, had intended to join us, but was called away late this evening. Her mother died just 3 weeks ago of this illness. She explained some of the way in which it happened. When we come back in about a month to do another Special Order hour, I will ask her to join us and, hopefully, she will be able to share her experiences.
But I suspect among the 435 of us here there are, perhaps, more than 50 percent of us whose families have been personally impacted, and then the neighbors, as Mr. Goodlatte was sharing with us.
If you would like to join in, let's have a colloquy. We will share thoughts about what we can do about the research effort. I will put up some charts and we can chat on for a few minutes.
Ms. MAXINE WATERS of California. Well, thank you so very, very much, Mr. Garamendi, again, for your leadership and for affording our Members the opportunity to have shared their experiences because all of what we learn as we serve as caregivers who happen to be relatives and friends, that information is going to be very valuable to our researchers. Because of you, we are going to be able to get those stories out. Thank you so very much.
Mr. GARAMENDI. Let me just pick up this chart. You mentioned research in your opening remarks, and then again. Your leadership on this has been absolutely extraordinary--the bills that you have introduced and the encouragement you have given to others to introduce legislation and push it forward.
I think this is where we are going to spend our time--fighting for research. I am going to go through this.
Ms. Waters, I know you must leave. Thank you so very much for joining us.
This poster shows how we are spending our National Institutes of Health research dollars. We can be thankful for each piece of this research that is going on.
First, on the cancer research ongoing with considerable success--and I will come back and show an earlier poster that I had--we are spending
$5.418 billion. This is in fiscal year 2014--$5.418 billion.
What does that result in? Well, over the years, between 2000 and 2010, we have seen breast cancer deaths decline by 2 percent, prostate cancer decline by 8 percent. That is what research will do. It is successful.
With HIV/AIDS, just under $3 billion spent annually in 2014, and again we are seeing HIV/AIDS an incredible success story. Still with us, but nonetheless, we have seen death from HIV/AIDS decline by 42 percent as we have invested $3 billion over the years; in 2014, $3 billion, and a little less in the previous years.
Similarly, cardiovascular illnesses--heart disease, stroke, and heart attacks--we are spending around $2 billion of your taxpayer money on this particular disease. What is the result? The result is that deaths from heart disease from 2000-2010, deaths from heart disease are down by 16 percent and stroke down by 23 percent.
What does this mean? This means that research really works.
Where are we with Alzheimer's research? Alzheimer's research in 2014 was $566 million, just over half a billion dollars for Alzheimer's research. And where are we with Alzheimer's? Well, that same period of time, we have seen Alzheimer's deaths increase by 68 percent, in part because there is no cure except death, and that is what has happened. As the baby boomers age, as that cohort of the population moves through into advanced age, Alzheimer's is taking a grip on those people.
So this is the story. Our goal this year, along with the research that Ms. Waters has already discussed, and some other bills that will be discussed in the days ahead, our goal this year is to ramp up this research. A project, as a result of the legislation that was passed in the year 2011, gave us information from the National Institutes of Health and other scientists that the appropriate level of funding to understand Alzheimer's, to find a cure or at least a way of prolonging health and delaying the onset of the illness, should be about $2 billion a year, something similar to what we are spending on cardiovascular research.
Fortunately, in last year's budget--that is the 2015 budget, that is the current budget--we increased the funding by about $25 million. Good. We are not getting very close to $2 billion, which is the goal to really get and understand this disease. But, nonetheless, we put $25 million more into it last year.
I hope that all of us who are concerned about this make a full-court press this year to try to get that number up to a much more substantial number so that we can really get at this research. The President, recognizing this problem--as was discussed earlier by one of our colleagues here--the President has proposed an additional $50 million. Good. But, once again, not what the scientists tell us we need to really adequately fund this illness. So we are going to work on this.
I notice that my colleague from California--would you like to join us? This is a bipartisan Special Order hour. Unusual, to be sure. Usually, we talk both sides--one side talks about the other side, the other side talks about them. This time we are talking about a common problem that affects all of us--Democrat, Republican, Independent, left, right, center, up, and down--all Americans.
My colleague from California, welcome.
Mr. ROHRABACHER. Will the gentleman yield?
Mr. GARAMENDI. I yield to the gentleman from California.
Mr. ROHRABACHER. Let me just note that I have been here 26 years, and I have always tried to vote for increases in the specific level of funding for the National Institutes of Health, which, of course, oversees much of this health research that we are talking about today. I know we have people coming in all the time talking to us. They want us to sign onto a bill to increase this particular disease or that particular disease.
But I think the approach that we have to have is basically let's provide as much money as we can to this type of research and programs by people who are the experts, and let them determine where is the best use of our limited research money. So I have been very much supportive of your efforts and the other efforts of many bipartisan people in this Congress.
I would like to add that we can't just rely on the government. The next speech I will be giving in a few moments deals with the patent issue. We need to make sure that people in the private sector will be encouraged to invest in new types of technology and new types of approaches to curing these problems, like medical equipment and things that will really help save people.
I know Al Mann, for example, has a new inhalant so that 60 percent of the people who now use needles for diabetes won't have to use them. They can just do a little inhale before every meal.
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It took him 10 years to get that through the FDA--10 years. We need to make sure the FDA is doing its job, and we need to make sure those people who are out in the private sector who are investing in new medical technologies have a way to recoup their money. At the same time, like you are focusing on tonight, we have to make sure the government is doing its part both in patents and in the FDA and, especially, for the National Institutes of Health. So thank you very much for what you are doing.
Mr. GARAMENDI. Thank you, Mr. Rohrabacher.
I know in your district--in the Orange County area--there is major medical research going on at the University of California at Irvine and, certainly, at UCLA, at the mind institutes there. Out of that research do come new technologies, new drugs, new kinds of equipment, some of which are patentable; and the licensing of the new drugs through the FDA is always a challenge, so we do have multiple tasks here. We have to deal with the patent laws and the availability of patent research dollars and then have to make sure that the drug actually is made available to address the illness. I thank you so very much for joining us.
Mr. Speaker, I want to go back to a couple of things that we were talking about earlier on the research side. Our goal is to ramp up this research to try to get to the level that is suggested. Now, we always look at cost benefit. Is this research going to pay off? I think it will.
As I was preparing for this evening, I came across an email, actually, from the University of California at Davis, which I represent--near Sacramento--at their California National Primate Research Center. They have been using stem cell research to address the issue of Alzheimer's. What they have found is that they are able to use this Nouvelle stem cell therapy in primates, which is similar to the human brain, and to actually have some success. They have now taken it the next step further. Here is where we are into the FDA and the approval of drugs, Mr. Rohrabacher. They have taken it the next step further, and they are doing clinical human trials with this drug, and it seems to restore the human brain.
Now, that is a long way before we get to the end of this story, but this is what happens when we have research developing a new therapy--in this case, a stem cell therapy with primates--and now transferring it over to the human in a clinical trial. How exciting it is--the possibilities--not just in slowing down the progress of the disease, which has been the short-term goal, but maybe in being able to restore the human brain. Wow. Wow. I think of my mother-in-law. I think of those whom I know who have come down with this illness, and I am going, wow, what if? What if it had been available? Well, it could be.
I know, Mr. Rohrabacher, you are very interested in international work. You have traveled extensively. You are involved with other countries and their research. This is not just a United States issue; this is an international issue.
Earlier last year, in June, the new cochair of the Alzheimer's Task Force here in Washington, in the House of Representatives, conducted a bipartisan international conference in New York at the United Nations, pulling together researchers from around the world. We have another piece of this puzzle available to us in the United States--
international research, NIH research, research at the universities, at the various mind institutes around the Nation--all of that.
As a result of the wars in Afghanistan and Iraq, with improvised explosive devices and the extraordinary impact that those have had on our military--the soldiers, the marines, and others who have suffered from those explosions--we are now, in the military budget, appropriating a significant amount of money for research into traumatic brain injury as well as into posttraumatic stress syndrome, trying to understand the human mind. What happens when you get that blow against the head? What causes the brain to react and to deteriorate? That research also informs us about Alzheimer's.
One of the goals that I will be pursuing this year is to try to bring together all of these research programs that are underway. Even the National Football League is engaging in research having to do with traumatic brain injury to the football players in the professional football leagues. They are trying to understand what it is all about. So, if we could pull together all of that research and pool the information and make it available--perhaps what is going on at UC Davis and at other research institutions--I think we can jump-start the solution.
Fortunately, I won't be doing this alone. Our former colleague here, Patrick Kennedy, heads up an organization called the One Mind organization, and that is their goal: to pull together the research--to get all of the international, the military, the National Institutes of Health, the National Football League--and to have all of us working towards a common goal of understanding the human mind, what the injuries are, and how we can deal with Alzheimer's as a result of all of that.
I am going to put up a couple more pieces of this puzzle and the trauma that it brings. We discussed this briefly early on, and I just want to come back to this.
The already high cost of Alzheimer's will skyrocket as the baby boomers age. This is driven by three things: one, the cost of treating Alzheimer's, which is very expensive and is ongoing; secondly, there is no known cure; and, thirdly, the demographic growth of the population. Today, you are looking at somewhere around $225 billion spent by the government and private and individuals and families on Alzheimer's, and it is expected to grow to close to $1 trillion by 2050. This is an extraordinary growth rate. A lot of this money is going to be taxpayer money spent on Medicare and Medicaid.
This one shows the cost increases to Medicare and Medicaid. In 2010, Medicare and Medicaid were spending about $122 billion. In 2020, it is expected to go up to nearly $200 billion and then just continue to escalate. This, many think, is the way in which Medicare and Medicaid will be bankrupted--just with Alzheimer's alone. Now, this is the government spending. The private spending--private insurance and families--will probably be spending somewhere around a third of this amount in the years ahead. So, if we are able--and we believe we can. Just take one look at what is going on at UC Davis, and that is just one of dozens and dozens of examples.
What is happening is that the research is coming on. The first goal is to delay the onset. It is anticipated that, if we were able to quickly ramp up to $2 billion a year of research, we would, within the next 4 to 5 years, be able to find a way, perhaps with a drug therapy, to delay the onset of Alzheimer's by 5 years. What does that mean? That means that the $2 billion that is spent on research leading to the delay--not the cure but just the delay of the onset--would, in the next 3 years, after that delay goes into place, save the taxpayers the $2 billion that was spent on research, and then those savings would continue on into the future. If you are a financial analyst on Wall Street and if you are able to get a payback within 3 years, you are thinking that that is a pretty good investment. So we ought to look at this in terms of cost benefit, in terms of investment--the financial side of it. That is appropriate.
Yet, on the human side, think what could be done. Think what could be done to those families, to my wife's mother--my mother-in-law--if her illness were delayed 5 years. She would have had 5 more years of healthy life. She didn't die of heart disease or cancer. She died of Alzheimer's. She could have had an additional 5 years if we had been able, at that moment, to have delayed the onset of the disease. As we understand how to delay the onset, we will also learn how to cure the disease. This is where we are headed. This is our goal. This is what we want to try to accomplish.
I am going to put this one up because it is so dramatic. Here is the cost of treatment today for the Federal Government. This is 2014: $150 billion from the Centers for Medicare and Medicaid Services. CMS: $150 billion. These are actually 2012 expenditures. Then this is where we are spending the money: $560 million on research. It is lopsided.
My final point before I turn back my time today is to take these two charts, actually. This one: Research works. Research saves lives. Research improves the quality of life for Americans.
Cancer research: we have decreased the cancer rate for breast cancer. Cancer research: we have decreased by 8 percent prostate cancer. HIV/
AIDS research: a 42 percent decrease in the death rate. Heart disease and stroke: 23 and 16 percent. Alzheimer's: we are not there yet. We are researching, but we are not there yet, so we wind up with a death rate that is rapidly increasing.
Ultimately, it is about this: it is about my family, and it is about your family. It is about the American families. It is about the American families who are enduring their loved ones--their parents, their grandparents--slowly, slowly dying of Alzheimer's, losing their mental capabilities. It affected our family, and I suspect it has affected your family. It doesn't have to be. We can deal with this. Yes, we can--si, se puede. We can do this, and your Congress--Democrat and Republican--is working on this issue. We are going to beat Alzheimer's. It is our task. It is our challenge.
Mr. Speaker, I yield back the balance of my time.
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