PACE Pilot Act of 2014

Mr. Speaker, recently, The Sacramento Bee wrote a three-page article on Alzheimer's and the effect that it has.

I would like to quote from that newspaper:

Gasps were audible as the images flashed before the

gathering scientists at a recent U.C. Davis Alzheimer's

Disease Center pathology conference. On the screen before

them were photos of a brain, severely wasted with age, with

what looked like silver rivers of atrophy cutting deeply

through the tissues. Even for the experts, it can be shocking

to see the damage that Alzheimer's disease inflicts on the

aging brain.

What can stop the devastation of Alzheimer's?

Without better answers from researchers, the degenerative

brain disease--already the Nation's sixth leading cause of

death--will be diagnosed in as many as 16 million aging baby

boomers by 2050. Unchecked, it will rob millions of their

memories and lives, of their pasts and futures, even as it

threatens to overwhelm the health care system.

Tonight, in a bipartisan 1-hour session, we are going to talk about Alzheimer's. Unfortunately, our time is being cut short, but we will take this up again in the weeks ahead as we deal with one of the most profound and expensive and damaging issues Americans face.

I have here a diagram that explains what is going to happen with Alzheimer's cost to Medicare and Medicaid in the years ahead. Right now, it is $122 billion, and it will rise in 2020 to $195 billion, to $346 billion in 2030, and by 2050, it will be approaching $1 trillion.

We have a problem. Americans--every family is facing this issue. My family has, and I suspect every other family in this Nation at one time or another already has faced this issue, and they will in the years ahead.

This is not a new issue for the Congress. It is an issue that has been dealt with. There has been legislation introduced, and in a few moments, I will talk about some of the bills that have been introduced by my colleagues here in the Congress, both on the Democratic and on the Republican sides of the aisle.

This issue has to be addressed, and the principal thing we need to do is to provide research and care and support for the families that have this issue in their midsts.

I want to take up a couple of other charts and then turn to my colleague from Kentucky.

This chart deals with the issue of what is going to happen with the funding. If we are going to solve this problem, we are going to have to increase the funding. We are, fortunately, spending around $5.5 billion a year on cancer through the National Institutes of Health.

HIV/AIDS is close to $3 billion a year. Cardiovascular issues are around $2 billion. Alzheimer's is down here at just over $566 million. We are not yet at $1 billion on this. As we can see here, this is going to be the most expensive illness facing the Medicare and Medicaid populations in the future years.

We also know of the deaths from the illnesses that have the greatest funding--breast cancer down 2 percent, prostate cancer down 8 percent, heart disease down 16 percent, stroke down 23 percent, and HIV--a remarkable success--with deaths now declining by 42 percent.

On the other hand, deaths from Alzheimer's are increasing at a rate of 68 percent.

So we are seeing this extraordinary shift occurring in the illnesses that are facing Americans and their families. We are seeing this extraordinary increase in Alzheimer's deaths as we see, thankfully, success. Often, that success is a direct result of what is happening with the research that is going on.

I would like now to turn to Mr. Guthrie, my colleague from Kentucky, as he discusses this issue from his perspective. And then we will spend the next 15 minutes in a dialog about this problem.

Thank you so very, very much. Thank you for being part of what, to my knowledge, is the first bipartisan hour. We ought to do this more.

This issue isn't a Democratic or Republican issue, a left or right issue. This is a true American tragedy--and one that is also going to be a true American financial as well as a family problem.

One of the gentlemen that has been involved in this from the very early days is my friend from New York (Mr. Tonko).

Thank you for joining us, Mr. Tonko. I know you have had a very difficult evening with one of our colleagues who lost her spouse this evening. Thank you for caring for her and joining us this evening.

Thank you very much, Mr. Tonko.

I know Mr. Guthrie may have some additional remarks. We have got about 7 minutes. I am going to take maybe 3 minutes and talk about some of the legislation that is here. I am going to go through this very quickly.

Mr. Markey, who is now a senator, introduced H.R. 1507 when he was here

in the House. This deals with the Social Security and Medicare diagnosis.

Of course, we have the Accountability Act you have introduced, Mr. Guthrie.

There is H.R. 489, the Global Alzheimer's Resolution. Next month is Global Alzheimer's Month. This will be part of that effort to talk about this issue around the world.

We have H.R. 4543, the PACE Pilot Act, to keep elderly people in their homes, which was introduced by Chris Smith, who will join us the next time we come out on this issue.

And also, H.R. 2975, the Alzheimer's Caregiver Support Act, was introduced by Representative Maxine Waters and, again, deals with the kind of support that you and Mr. Guthrie were talking about.

One more. We have H.R. 2976, the Missing Alzheimer's Disease Patient Alert Program, dealing with the issue both of you have talked about with elderly or people with Alzheimer's that wander off.

All of these are bipartisan pieces of legislation. All of them in one way or another deal with this problem.

The one thing that is not among these is specific money for research, which I would hope comes from our efforts to talk about this and make this a major issue.

Mr. Guthrie, I know you have some additional comments.

I would like to close with a statement of hope and a statement of opportunity. Here is what happens when you spend money on research and on treatment. Breast cancer is down 2 percent, as well as deaths from these other cancers. Prostate cancer is down, heart disease is down, stroke is down, and HIV has a 42 percent decline. That is what research and treatment will do.

Alzheimer's is up 68 percent. That is what happens when you spend this kind of money.

Cancer, over $5 billion a year. The result, a decline in cancer. HIV/ AIDS, almost $3 billion a year. You see the extraordinary success of that. Cardiovascular illnesses, $2 billion.

Again, a decline in each and every one of these causes of death. With Alzheimer's, right around half a billion dollars. The result is this: increased deaths.

So we have a way of answering this question of what to do with this, and that is turn our focus on the research and the care and the support for the families. That should be our watch word.

I think that is a bipartisan way of going at this. That is something that we can focus on as 435 Members of this House and our colleagues over in the Senate. This is a bipartisan issue, a bicameral issue, with a known path to a solution.

With that, we are out of time this evening. I want to thank my two colleagues in a bipartisan hour, my Republican colleague from Kentucky and my friend who is often on the floor with me, Mr. Tonko.

We are going to come back and do this for another hour in the last half of the month of June. I know that there are several of our Republican colleagues that wanted to be here tonight. And I know the Democrats do, also. We will see if we can go move forward with a solution.

Mr. Speaker, I yield back the balance of my time.

I want to thank my friend from California for yielding.

I rise today, Mr. Speaker, to talk about this devastating disease that impacts nearly every family in America: Alzheimer's disease.

According to the Alzheimer's Association, Alzheimer's is the costliest disease in America, with a direct cost of roughly $200 billion--most of which is paid by Medicare and Medicaid, and accounts for 20 percent of Medicare spending. These numbers will only continue to increase, making the discovery of a cure, or a way to delay onset, critical to our health care economy.

Across the United States, more than 5 million Americans are living with Alzheimer's today. In addition, the Alzheimer's Association estimates that someone will develop this disease every 67 seconds. Eleven percent of Kentucky's seniors are currently living with Alzheimer's. It is the sixth-leading cause of death in the United States.

But it is not the financial drain that is the most devastating.

My family has been personally touched by Alzheimer's. My great uncle suffered from the disease. I will never forget as a little boy hearing my grandmother talk to my mother about my uncle getting lost and trying to find his way home from the grocery store. Nobody really understood it. I remember as a young boy being confused about how this uncle I knew could be so confused and lose his way.

I also experienced it in my family with my wife's grandfather. I will never forget when my wife and I went to visit him the first time he didn't recognize her. The devastation on her face that someone she loved so much didn't know who she was has still stuck with me today.

This disease is emotionally wrenching for families who are impacted.

Beyond the direct emotional and physical impact, family members serving as primary caregivers are stretched to their limits. Many spouses and grown children work full time-jobs and then come home to care for their family member.

Finding a cure or treatment for Alzheimer's is of the utmost importance. I was pleased to introduce H.R. 4351 with my colleague, Representative Paul Tonko of New York.

H.R. 4351, the Alzheimer's Accountability Act, seeks to ensure that the research and resources needed to find a cure for Alzheimer's are properly conveyed to Congress. By receiving a professional judgment budget directly, Congress will be in a better position to see the needs and promise of researchers and use that information to make critical decisions, especially during difficult budgetary situations.

Today, H.R. 4351 is bipartisan. My friend Paul Tonko and myself filed this legislation. We have 80 cosponsors. There is also a Senate companion bill, and it is gaining momentum.

Again, I want to thank my colleague for organizing this evening and for allowing me to be part of this effort to shine a light on Alzheimer's disease. I would also like to encourage all of my colleagues to cosponsor H.R. 4351, and help make fighting Alzheimer's a top priority.

I will just take a couple of minutes. Thank you for yielding.

I thank Representative Tonko for cosponsoring and working on this legislation together.

I will have to give also my sympathies to Ms. Slaughter. She took me in when I first got here. I know she is from upstate New York, but if you listen to her accent, it has got a little bit of Kentucky mountain in it.

She is from our beloved mountains. We had that connection. She has been special to me. So my prayers are with her.

The one thing I want to share, because we are short of time, is we are doing research into this. The Alzheimer's Association said by 2050, Alzheimer's disease will cost the Federal treasury a trillion dollars.

So I remember thinking, Well, by 2050 my great grandkids would have to take care of that. Then I did the math. I am going to be 86 in 2050. So the generation that will be in that category is me. It is not some long-off issue. So my children will be dealing with it, as well as me and people my age.

I am the end of the Baby Boom. I was born in 1964. So by the time I am 86, the entire Baby Boom will be older than me. At least my age, or older. And that will be not just a stress on the Federal budget, but as I said, the dignity of the person with the disease and the stress on the family dealing with the disease and the emotion of it is why it is so important.

I saw it with my great uncle, with the early onset of Alzheimer's when I was a young boy and didn't quite understand what was going on. And later on in life, we figured out what was happening. Our whole family didn't really understand what was going on in the 1970s. But we do now. And I think it is something we need to put the efforts of both parties together on--as you see, we are standing here together--the effort to move forward. It is when my generation is retired, our children aren't going to be able to sustain it financially or emotionally. Therefore, it is something we need to do today.

Well, we all love Louise Slaughter. We extend our condolences for the loss of her beloved Bob, who was part of this institution. He was here so much and intellectually invested himself in the business of the House.

Representative Garamendi, let me thank you for bringing us together in such a meaningful and bipartisan-spirited way to address the issue of Alzheimer's disease.

It is my honor to sponsor the measure, the Alzheimer's Accountability Act, with Representative Guthrie. Alzheimer's knows no boundaries-- political, geographic, age, whatever. It is so important for us to come together in a spirit of unity and support for the Alzheimer's community.

Recently, I joined the many advocates that came to the Hill here in Washington from around the country. Around a thousand people gathered for a breakfast. I heard of folks being diagnosed in their twenties. I heard of a gentleman diagnosed in his thirties and who died in his forties. It seems to be penetrating deeper and deeper into the younger age category.

So it is important for us to make an all-out effort to invest in research and respite care and all sorts of developments that respond to the individuals and families who live with Alzheimer's on a day-to-day basis.

The Alzheimer's Accountability Act is, I think, is so sound an approach because it addresses a professionally inspired budget that will have the scientists, the clinicians, those most in the front lines of addressing Alzheimer's, and their patients, forecasting what the needs are. As you know, we have set up a national project that requires planning from now to the year 2025.

I think what is so good about the measure introduced by Representative Guthrie and myself is that it will require this professional judgment that will name the pricetag for each year as we go to 2025. It won't be left to us as a political force, but rather to the clinical health care provider community that will have the best estimates of what is needed.

As I gather at the town halls that we have so that we can know of the progress or lack thereof, you hear heart-wrenching stories. People tell you they go to work because their spouse is struggling with Alzheimer's. They search employment so as to pull themselves out of that day-to-day routine because it is wearing on their relationship. And they spend every dollar earned to go toward respite. But they do it to save their relationship.

People have acknowledged to me that they mourn twice. First, when the diagnosis happens and they have lost their loved one somewhat. They lost their personality or whatever. And then they mourn again with the physical departure.

And others have said to me--one who comes to mind, a high school buddy--My husband knows my voice; he doesn't know my name.

It doesn't get more heart-wrenching than that.

So this is an immediate need, a priority, an urgency. Let's go forward and let's in a bipartisan-spirited way, bicameral, and working with the executive branch, get it done. Let's make certain the planning is there, that the resources are there for research, for respite care, for the entire continuum of services that are required so as to address the dignity and deliver hope to the doorsteps of individuals and families who face this constant struggle, who live with it on a daily basis and who have really seen the entire persona be lost in their mid.

So it is an honor to be on the floor this evening with both of you gentleman and to work with you in tandem, in partnership, in a spirited way to make things happen.

More than a little.

Representative Garamendi, as Representative Guthrie said, we are at the $200 billion-plus mark today. And the tragedy of the situation is that for every dollar spent on Alzheimer's today, less than a penny of every dollar is spent on research to find a cure.

We have to do better than that. The hope and the miracle lies in research. We have trained clinicians, we have a medical community that is raring to go. We need to invest in a far more significant way. It was a message we heard from our advocates when they came to the Hill.

Again, I think it goes without saying that we all commit to that research budget.

So, again, it was an honor to join you this evening in this very special caucus.