MS Patient Falls Into American Insurance Gap After he was diagnosed with multiple sclerosis, Jeff Rubin of Philadelphia went bankrupt paying for his medical bills. Would that happen in England? Both the U.S. and the U.K. ration health care. A look at patient experiences on either side of the Atlantic.
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MS Patient Falls Into American Insurance Gap

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MS Patient Falls Into American Insurance Gap

MS Patient Falls Into American Insurance Gap

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It's MORNING EDITION from NPR News. Good morning. I'm Steve Inskeep.


And I'm Deborah Amos. This morning in Your Health we begin with medical care in Britain. All legal residents are covered by that system. Long waits for health care have been dramatically reduced. There's no choice of doctors, but a change is in the works. And the government decides what treatments it'll pay for. You can appeal and the government will listen.

In all, the U.K. spends per person about half of what patients spend in the U.S. As part of our series on health care in Europe, NPR's Joanne Silberner compares two patients - one in Great Britain, one in America - both with serious chronic conditions.

JOANNE SILBERNER: In the storybook English village of Buckland, 55-year-old Linda Oatley spends her days renovating her new cottage. This morning she's at a health center 10 minutes from her house getting ready for something she considers torture - physical therapy.

Ms. LINDA OATLEY: Would you mind, Karen. Thank you very much. Yes. Yes. Put a mat down for me. I'll take my shoes off.

SILBERNER: Oatley's got smart black glasses and blond-streaked hair. She was a sales executive, but now she gets fatigued easily and can't work. Her therapy takes place in a mirror-lined room filled with cheerful blue workout mats, giant red and orange exercise balls, and stacks of weight racks. Lined up against the wall: wheelchairs and canes.

Oatley was diagnosed with multiple sclerosis in 1999. She has a pronounced limp. Exercises to regain and maintain control of her leg hurt.

Oatley's lying on her back. She's got an exercise ball under her knees.

Ms. OATLEY: Oh, it's hard for me to do. I mean, that stretches me because this is where my problem is, in the hip.

SILBERNER: Workouts usually last an hour. Outside, over a cup of tea, she tells us what happened nearly ten years ago.

Ms. OATLEY: I felt these odd sensations in my - both legs, actually. This is weird, but it felt warm on the inside, and when I would take a bath or the shower, the hot water felt cold and cold water felt hot.

SILBERNER: She wasn't at all sure the National Health Service, the NHS, could help her. It's always gotten bad press in England. And earlier this month a study by doctors and MS advocates found that about half of Brits with MS had to wait four and a half months for an initial visit with a specialist.

Oatley gave the NHS a try. She ended up seeing a specialist within weeks.

Ms. OATLEY: He recommended, that very day, an MRI scan, a pulmonary function test, an X-ray, and a blood test. And so all that was done that afternoon, and I went back the very next week for the results.

SILBERNER: Accepting the diagnosis was hard.

Ms. OATLEY: For six months I was beside myself. In fact, they'll tell you when I first came here I was like a little mouse. I couldn't talk to anybody. I saw all these very sick people. I though, oh my god, I'm going to be like that. I'm going to be in a chair. I'm not going to be able to walk or talk or swallow. What am I going to do? I'm going to die. And I didn't die and the moment passed.

SILBERNER: At the time there were several new MS drugs thought to slow or stop the disease. In the U.S. they were already available, but they cost thousands of dollars per month.

In the U.K., the National Health Service wouldn't pay for them for Oatley's type of MS. There wasn't enough proof that they worked. Oatley paid out of pocket until the NHS was satisfied the drug might help people like her.

Ms. OATLEY: And then I started to get it free and they would deliver it every month. And they gave me my money back. So they reimbursed me the 5,000 pounds I had spent. How cool is that? I thought I'd died and gone to heaven.

SILBERNER: Medically, she's happy with what she's getting now. She sees a neurologist twice a year and when she has flare-ups she can see that specialist without a wait. Oatley's one gripe is that she has to pay $30 a week out of pocket for her ongoing rehab sessions. But she's certain the physical therapy and friendships are helping her cope with her MS.

Ms. OATLEY: What I don't get on the NHS, of course, is the physio-therapy and the fun of coming here every week. (Laughing) It is fun.

SILBERNER: I ask Oatley how she would've felt if she had had to pay cash for all her own medical care.

Ms. OATLEY: I wouldn't know where to start. I mean, I think it would be just so mentally debilitating. I think I'd have topped myself. That's a euphemism for killing yourself.

(Soundbite of laughter)

SILBERNER: I tell her sometimes people in the U.S. have to pay their own way.

Ms. OATLEY: So what do they do? So what do they do? Come on, you've asked them. What do they do?

SILBERNER: In Philadelphia, MS patient Jeffrey Rubin sits all day in a rented house. He can't work now, but he takes care of his 4-year-old daughter, Taryn.

Mr. JEFFREY RUBIN: What is this?

Ms. TARYN RUBIN (Daughter): Sky.

Mr. RUBIN: Is that daylight or nighttime?

Ms. RUBIN: Nighttime.

SILBERNER: He's a big bear of a guy. Taryn is tiny. She nestles in his arms.

Mr. RUBIN: What are all of these?

Ms. RUBIN: (Unintelligible)?

Mr. RUBIN: Yes. (Unintelligible) it's going to come up soon.

SILBERNER: There are no trips to the park with Taryn. Even with a cane, Rubin can walk only about half a block. His disease is more aggressive than Oatley's. Rubin shows me his medications. It's an effort for him. They're on a high shelf in the kitchen out of reach of his four kids.

There's a twice-a-day pill for his back - 200 and some odd dollars a month - an antidepressant, a drug that prevents muscle spasms, several pain killers, a drug to stay awake during the day.

Mr. RUBIN: This one is 200 milligrams three times a day. This was over $1,000 for this thing.

SILBERNER: When he was in his late 30s, Rubin had a comfortable life. He supervised quality control at a medical packaging company. He had health insurance. His wife was a homemaker. They had bought a house a few blocks from where he went to high school.

Mr. RUBIN: Memorial Day weekend of 2006, I was working midnight shift, and all of a sudden without warning, without anything, I saw basically a black - black circle right in the middle of my eyes. I went numb, the entire left side of my body. Then I had excruciating pain shoot right up, like more towards the right side of my back.

SILBERNER: He was taken to the hospital. He had multiple sclerosis. He eventually lost his job, and he couldn't pay for his health insurance on his own.

Mr. RUBIN: I don't have the money. I mean, I'm already paying, of course, my mortgage, and everything else, all the utilities. What am I going to do? I don't know what to do now. I mean, everything just came closing down.

SILBERNER: He begged money from his parents, borrowed from friends. Strangers dropped off food. His got drug samples from his doctors, but not enough.

Mr. RUBIN: If I don't take all my medications, you know, who knows what's going to happen? Or I'm spreading out the medications as much as I can. Instead of taking one pill a day, I'm cutting it in half and taking half a pill a day.

SILBERNER: Rubin got state medical assistance, Medicaid. When he went to fill his prescriptions, the pharmacies said he wasn't covered. None of his doctors belonged to the program. To pay his medical bills he stopped paying his mortgage.

Mr. RUBIN: They took the house. So that was the end of that. The house was nice. I liked my house.

SILBERNER: Then he declared bankruptcy. Finally Rubin qualified for government disability payments.

Mr. RUBIN: And then I'm like, OK, well, I'm going to have health insurance now. No. Now we come to the two year waiting period, because you get Medicare, but you have to wait two years for Medicare. So since I got it in December of '06, I have to wait until December of '08 in order to qualify for health insurance through Medicare.

SILBERNER: Rubin is one of more than a quarter million disabled people with no insurance at all who are stuck waiting to qualify for Medicare, according to the Commonwealth Fund.

Recently, his wife got a job at his kid's charter school. Now they have health insurance but with some big co-payments for Jeff's care.

So the scorecard comes to this.

For Linda Oatley in England, who started out thinking the NHS wouldn't do much for her, a bit of a delay in getting coverage for a drug, a small fee for physical therapy.

Ms OATLEY: And in the end, if you do the right things, ask the right questions, go to the right places, or you know, get help and advice, you can get the care you need from the get-go.

SILBERNER: And the scorecard for Jeff Rubin? A year and a half of cutting his medications, a repossessed house and bankruptcy.

A few years ago, he would not have supported a government-run system.

Mr. RUBIN: I may have had a different opinion, because you know, because then you're talking about taking away your freedom of choice, I guess. Why should I have someone tell me to do this and tell me to do that? Unless you fall into this type of situation, I guess you just don't understand it.

SILBERNER: Rubin's two-year waiting period is up in December, and he'll get on Medicare then. If his condition doesn't get any worse, he hopes to start doing some motivational speaking.

Joanne Silberner, NPR News.

AMOS: Massachusetts is the only state in the U.S. trying to guarantee all of its citizens health coverage. You can see how that's working in an NPR video report. Go to

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