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And I'm Robert Siegel.

When someone becomes sick or disabled and can no longer work, it can mean job loss and losing the health insurance that comes with the job. Some people get health coverage through Medicare, but only after waiting a period of two years or more. Most struggle to pay medical bills at a time when they need health care the most.

NPR's Joseph Shapiro reports on how these problems play out for people with early onset Alzheimer's.

JOSEPH SHAPIRO: Alzheimer's is thought of as a disease of the elderly. But there are also people — maybe a couple hundred thousand or more - who have Alzheimer's in their 40s and 50s. People like Teresa Lambert, she's 54.

Ms. TERESA LAMBERT: Most people that meet you think, oh, gosh, you're normal. Well, you're not at my home with me. I forgot how to use my washing machine. And what I did was I took the clothes and put it in my big freezer because it was big and white. And I didn't know I put our dirty clothes in the freezer. Isn't that nice? It felt good, though, on a hot day.

(Soundbite of laughter)

SHAPIRO: Just several years ago, Lambert was managing a chain of jewelry stores. But she started having trouble making sense of the revenue spreadsheets. She was in her late 40s, she can't remember the exact year when she had to quit her job. Today, there are still a lot of things she can do. She drives her white pickup truck around her neighborhood in Abilene, Texas. She's been a caretaker for her elderly parents, including her father who died of Alzheimer's on Christmas Eve.

And in the past year, Lambert's made three trips from Texas to Washington. She always comes with her friend Libby Connally, who runs the local Alzheimer's Association chapter. They look like sisters — two small women with the same short haircut and wear glasses, even similar black and white print blouses.

Ms. LIBBY CONNALLY (Regional Director, Alzheimer's Association): Good morning.

Unidentified Man: Hi.

Ms. CONNALLY: Libby Connally. Very nice to meet you.

Unidentified Man: Hi, Libby, how are you doing?

Ms. CONNALLY: Great.

Ms. LAMBERT: It's nice to see you, too, sir.

Unidentified Man: How are you doing?

Ms. LAMBERT: I'm Teresa Lambert.

Unidentified Man: Hi Teresa.

SHAPIRO: They've come to Capitol Hill to talk to lawmakers about how hard it is for people with early onset Alzheimer's to get health insurance. Lambert has trouble following the conversation, but she is clear and direct when she tells her story.

Ms. LAMBERT: And I tell people this - I feel like an ice cube sometimes. I'm here, but I'm slowly melting away, but just because I melt away, I'm still here. I'm still Teresa.

SHAPIRO: Lambert's here to talk about how one-third of people with early onset Alzheimer's have no health insurance. When Lambert lost her job, she lost the health insurance that came with it, but she needed that coverage more than ever because doctors still hadn't figured out what was wrong. So she paid for the medical tests out of her own pocket.

Ms. LAMBERT: Let's see, the MRI was over - about $3,500. Just the reading of it was almost 1,000. Blood work ran about $600.

SHAPIRO: She's been paying off those bills 10 and $20 at a time. It helps that just recently she got on Medicaid, the state program for the poor and uninsured. That pays for some, but not all of what she needs. She explains that Texas Medicaid will only pay for three drugs a month.

Ms. LAMBERT: And I take 10 or 11 drugs, I can't remember. And that makes me decide which ones are the most important ones. Right now I'll pick my Alzheimer's medicine. But then you've got to have blood pressure medicine, too, you know, and I had trouble with that. My - I ended up in an ambulance because I allowed my blood pressure go to 154 over 112, you know, and I had a stroke. So, you know, you can't do that.

SHAPIRO: Lambert's asking members of Congress to let people like her get on Medicare right away. Medicare was created for the elderly. Then Congress opened it up for younger people who are disabled or sick — people with early onset Alzheimer's, but also ones with multiple sclerosis, Parkinson's, severe heart conditions, psychiatric illnesses and other health problems. But younger people have to wait two years or more to get Medicare coverage. Karen Davis with The Commonwealth Fund says that's too long.

Ms. KAREN DAVIS (The Commonwealth Fund): When somebody becomes disabled, they have cancer, they have a stroke, they have a serious health condition, when they need medical care is right then, not two years from now.

SHAPIRO: Congress created the two-year waiting period to make sure only people who are really sick and really can't work get coverage. Right now only those with Lou Gehrig's disease and end-stage renal disease, both of which kill quickly, are allowed onto Medicare right away. Davis notes there was another reason Congress made people wait for coverage.

Ms. DAVIS: The thought was that many people had private insurance and if government were to cover them, they would drop their private insurance and it would shift cost onto government.

SHAPIRO: But Davis says that turns out to be largely wrong. Often the costs already get shifted to government. Her foundation funds research on health policy and its studies have shown that about half of people on the waiting list either have no insurance or they end up on Medicaid.

With Washington focused on changing the health care system, this might seem like a moment to address the waiting list. There are almost two million people on it, but with Medicare's costs already soaring, most current proposals to fix health care only partially address people on the waiting list. Davis says it's expensive to get them off, about $8 billion.

Ms. DAVIS: When you're talking about people who are disabled, it is going to be costly. But failure to cover it means that the families themselves are faced with extraordinary financial burdens, wiping out any savings they might have accumulated for retirement.

SHAPIRO: In Memphis, Tennessee, Diane Thornton runs support groups for family members who care for someone with Alzheimer's. Recently, she counseled one husband grieving for his wife with Alzheimer's.

Ms. DIANE THORNTON: I said, can your wife still enjoy music? Does she still like to go sit out in the garden and feel the sun on her face? Find the tiny things, you know.

SHAPIRO: Thornton understands this because at the age of 47, she's got Alzheimer's too.

Ms. THORNTON: My oldest son said to me, I just want to know, are you going to be there when I graduate from college? And I said, honestly, honey, I don't know. You know, I don't - I don't know what shape I'll be in when you graduate from college, but by god, you better graduate.

(Soundbite of laughter)

SHAPIRO: Thornton lives with her two teenage sons and her partner, who works for the city. Because Tennessee doesn't recognize gay couples, Thornton can't get on her partner's insurance. She lost her own insurance when she had to shut down her mental health counseling practice. She could've kept for a limited time the insurance she already had, but with no income, she couldn't afford it.

Ms. THORNTON: The cost was outrageous. I mean, I had no money coming in. And to spend $1,200 a month was ludicrous.

SHAPIRO: So now she too is trying to get on the two-year waiting list for Medicare. She started by applying for Social Security disability benefits. But like most people, her first request was denied. Thornton did find one doctor who helps her get her Alzheimer's medications for free from the drug companies. But recently, she's been feeling weakness in her hands. She needs to go to another doctor — a neurologist. But she can't afford to pay out of pocket.

Ms. THORNTON: You know, really, we've got a kid going to college in a year and I just - I've already, you know, broke the bank. I don't - I just don't feel like I could ask my family to take another dime to pay to see another doctor that is then going to give me a couple thousand dollar bill.

SHAPIRO: So Thornton ignores the tingling in her hands, and she hopes her request for Medicare will come through before she gets too sick.

Joseph Shapiro, NPR News.

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