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Aug. 18—  Maybe it’s one of your neighbors or someone in your family. Maybe it’s you. One in six Americans is different from the rest of us. That difference can turn their life upside down. They are the 44 million Americans without health insurance, many of whom are forced to make terrifying choices: their health or their home, medicine for their child that day, or dinner that night. For months, John Hockenberry has been following in the footsteps of three of them: Three people, uninsured and unsure if they will make it.

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       ON A SUNNY Thursday in April, in Midland, Texas, Michelle McKinney roused her kids and bathed them. And all the while she searched for their sandals, got them dressed, gave them their breakfast and packed their little lunches, there was something on her mind — something beyond the pint-sized everyday crises. It’s not just that Michelle is caring for her kids alone now, or that two of her three children have severe asthma, or that she can’t always afford their medication. It’s that Michelle has medical problems of her own. She would not be taking her kids to daycare that morning and she had to explain why without making them as nervous as she was.
       Michelle explains to her sons, “You know what? Mommy’s got to go to the doctor because they found a bump inside of me. It’s called a cyst. Okay, so mommy’s got to go to the doctor while you’re at school. That’s why Kim’s taking you, okay? But you know mommy always takes you right?”
       Mommy heads to the hospital for tests.
Michelle McKinney
       “I don’t know. I hope it’s nothing bad, nothing cancerous or anything,” says Michelle while driving her van.
       But oddly cancer is not Michelle’s biggest concern. It’s something else, something that could affect not only her, but her family, her children’s well-being — everything she has worked so hard to keep together. Mommy has no medical insurance.
       Do dollar signs go through her brain?
       “Oh yeah. I mean even with: where are my kids gonna stay, you know? Can’t afford daycare or anything,” explains Michelle.
       You may have a friend like Michelle and not even know it. That’s because one of the most profound divisions in our society happens to be invisible: the division between those with medical insurance and those without it. Walled in by shame, their pain and anxiety is unseen.
       But that’s not all we do not see. Also hidden are the social costs and consequences of, consider this, 44 million people gambling with their lives. That’s one out of every six Americans — children, young people starting their careers, older Americans not yet 65. The uninsured are mostly working people and their families. They pay taxes and are trying to stay afloat. So it may make you angry to see how the system we have seems to encourage people like this to take unnecessary chances, to delay getting care, to suffer and to get even sicker — leaving all of us, in the end, to pay the bill.
       High up on a ladder in Rockville, Maryland, finishing the trim on a $700,000 house, Manuel Garcia worries about falling. He’s not scared of heights. He is scared of the horrible pains that come, without warning, whether he’s on the ground or thirty feet up. Manuel suffers from kidney stones and severe pain caused by a defect in his urinary tract.
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"It’s as if they had an iron rod or a knife that was, that was flaming, and you just stuck it in your stomach little by little… at this point in time, it’s pain is more important than, than I guess worrying about coming down,” says Manuel.
Manuel did what a lot of uninsured people do. He kept working and put up with the pain — until the day he could bear it no longer.

       Manuel is 26 years old. He came here from Honduras, hoping to make some money and then return home to his seven-year-old daughter and elderly parents. He has a temporary work permit, but no health insurance. He says he can’t afford $400 to $500-a-month in premiums, when he averages about $1,100-a-month and must send some of that home to his family. He’s gone to see doctors, but he says he can’t afford their state-of-the-art tests and treatments.
       He explains, “I can’t pay them because even for a simple procedure, they would charge me $6,000.”
       So Manuel did what a lot of uninsured people do. He kept working and put up with the pain — until the day he could bear it no longer.
       For Donna Huebner, there had been much pain already. Her fight would be for her life and to hold onto everything she had worked for during that life — her home, her dignity. Donna grew up in Brooklyn, New York. She worked for an airline and even did some modeling for a while.
       “I always say Donna was incredibly beautiful physically and her heart puts that beauty to shame,” says Donna’s friend Kathy Cohen, “She was just so giving, so friendly, so optimistic.”
       Kathy met Donna after she married a New York City firefighter and started raising three children in suburban Bayshore, New York. But after Donna and her husband divorced in 1988, she struggled to raise her kids and to make ends meet.
       Did Donna’s poverty make her worry a lot?
       Donna’s daughter Danielle says it did.
       Did she worry about losing the house?
       “All the time,” says Danielle.
       Danielle recalls how important their heavily mortgaged home was to Donna. It was her only real asset, her lone anchor to the middle class. Hanging onto the house would become Donna’s lifelong struggle. Sometimes things got so bad that the phone or the electricity would be cut off.
       “One Christmas, she bought us all one thing that we really wanted. Another Christmas, she put IOUs on the Christmas tree,” recalls Danielle.
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Though Danielle and her two brothers were covered by their father’s health insurance, Donna lost hers not long after the divorce.
       Danielle explains, “When we got sick she took us to the doctor. When she was sick, she would stay home and try to treat herself.”
       John Hockenberry: “So as a young child, the message in your house was, because you were insured, you go to the doctor. Mommy’s not insured…”
       Danielle: “Right.”
       Hockenberry: “She’s on her own?”
       Danielle: “Yeah.”
Like lots of employed people, Donna was caught in a netherworld: she made too much to qualify for Medicaid, the government’s insurance plan for the poor, but made far too little to buy health insurance on her own.

       Donna Huebner was on her own for 10 years with no health insurance — relying on luck and the gifts of friends to avoid expensive doctors. She aspired to be an artist, but made her living as a window dresser and collections agent — part-time jobs that didn’t offer health benefits. Like lots of employed people, Donna was caught in a netherworld: she made too much to qualify for Medicaid, the government’s insurance plan for the poor, but made far too little to buy health insurance on her own.
       Her friends Kathy Cohen and Fran Solero remember what Donna would do if she was feeling really bad.
       Says Fran, “She would ask us, ‘Do you have any antibiotics?’”
       Was Donna working without a net?
       “Uh-huh (affirmative),” says Fran.
       From the earliest time her friends knew her?
       “Right,” Fran agrees.
       But by January 1998 Donna Huebner knew she had something that borrowed antibiotics weren’t going to help. A heavy smoker for most of her life, she was having respiratory problems that would not go away. She went to her county’s health clinic for the poor. They sent her to the local hospital for an X-ray. Then the county clinic called and said they needed to speak to her about something they’d found.
       “She hung up, started crying, said she knew something was wrong,” explains Danielle.
Donna Huebner
       Hockenberry: “And all of you knew at this point that if there was something bad, the fact that she didn’t have insurance…”
       Danielle: “Yeah.”
       Hockenberry: “…was that it was worse than bad?”
       Danielle: “I think that that’s what scared her mostly. If it was fixable, she didn’t have health insurance to fix it.”
       Everyone without insurance dreads most what Donna Hubner was about to confront. How scared and concerned was she when she talked to a surgeon at a major university hospital?
       “The surgery itself… How long does the surgery itself take?” asks Donna.
       She took a tape recorder to her meeting — to make sure she didn’t miss anything. And what that tape recorder captured is a doctor who seems to be telling her — “no insurance card, no surgery.”
       “ doesn’t bother me, you understand. It’s the hospital that is concerned with that,” explains the doctor.
       “Oh I’m. I realize that. I realize that,” says Donna.
       Donna Huebner would soon be taking an enormous gamble in which the stakes were arguably, “her home or her life.”

       Throughout her life Donna Huebner always believed that if she did what she was told, paid her bills, held onto her home, help would eventually come. Arriving at University Hospital at Stony Brook, on New York’s Long Island, with a spot on her lung, Donna Huebner had no medical insurance, but she did have her lifelong faith in the system.
       On the audiotape Donna made, a doctor at the hospital’s outpatient clinic told her the spot had been caught early.
       “It is small?” Donna asks.
       “Small, less than a dime. It’s just small in comparison to most of the things we see,” says the doctor.
       The doctor at the clinic referred Donna to Dr. Thomas Bilfinger, the hospital’s chief of thoracic surgery.
       “The chances of this being cancer is fairly high,” says Dr. Bilfinger, “It’s over fifty percent that this is a cancer.”
       Donna responds, “Yeah.”
       He described an operation in which he’d remove the part of her lung containing the mass. Donna’s lungs were already weak from smoking and emphysema. But after running more tests, Dr. Bilfinger would describe her as a “high risk, but acceptable candidate” for surgery.
       Now for someone with insurance, the next step would be relatively easy. Schedule the surgery. And fast. But for Donna Huebner, who was proud and apparently bewildered by her situation, it would not be so simple. If Donna had a gunshot wound and required emergency surgery, the hospital would have been legally obligated to treat her right away. But this wasn’t that kind of emergency, and that’s what Dr. Bilfinger is attempting to tell her on the tape.
       Dr. Bilfinger: “The hospital’s.. ”
       Donna Huebner: “Right, so... ”
       Dr. Bilfinger: “...obligation is to treat you as an emergency patient, okay?”
       Donna: “Mm-hmm.”
       Dr. Bilfinger: “They were gracious enough to have you come over and to continue in that clinic, but I have to tell you that when you came in the hospital as an in-patient, that if you have to have surgery, they want to have proof that you have Medicaid.”
Donna’s part-time salary of $260 a week was above the Medicaid limit. But if she quit her job and had no salary, she wouldn’t be able to make payments on the house. She might end up losing the one thing she had struggled all her life to keep.

       To get Medicaid, the government’s insurance program, you can’t make too much and you can’t own too much. Donna’s part-time salary of $260 a week was above the limit. But if she quit her job and had no salary, she wouldn’t be able to make payments on the house. She might end up losing the one thing she had struggled all her life to keep. And this wasn’t just Donna’s home: Her daughter and granddaughter lived here too.
       Donna was told she could also get Medicaid if she could prove she was disabled. Surely cancer would qualify as a disability, and then she could get that Medicaid card the doctor told her she needed.
       Dr. Bilfinger: “And if you can’t prove to them…”
       Donna: “Right.”
       Dr. Bilfinger: “...that you have it, in other words have the card…”
       Donna: “Mm-hmm.”
       Dr. Bilfinger: “… they will make you fill the paperwork out first, and get it taken care of before they... ”
       Donna: “I filled all the paperwork out. ”
       Dr. Bilfinger: “...okay. So where is it?”
       Donna: “And, uh, that is with the ... ”
       Dr. Bilfinger: “Medicaid office?”
       Donna: “Yeah.”
       Dr. Bilfinger: “Okay. So that should come through sometime soon, we hope.”
       Donna: “Yes, definitely. Definitely…”
       Dr. Bilfinger: “All right.”
       Donna: “ I’m just waiting to hear from them any day.”
       But Donna’s any day became weeks, the weeks became months, and still no approval.
       Was there a reason why she wasn’t approved?
       “No. They didn’t tell her she wasn’t approved. Every time she called they told her, ‘We’re still working on it.,’” says Danielle.
       And all this time, ironically enough, Donna kept working part-time as a bill collector in her friend Kathy Cohen’s small collections agency. Kathy witnessed Donna’s frustration each time she got off the phone with the Medicaid office.
       “Sometimes she would cry. Sometimes she would just come in and just say, ‘I just can’t believe that this is hap — don’t know what to do next,’” says Kathy.
       Medicaid officials said they could take “no action” until they received proof from her doctor that she indeed had a debilitating kind of cancer. They wanted evidence — tissue samples, biopsies — things her doctor hadn’t done and didn’t think were necessary at this point. So at Donna’s request, Dr. Bilfinger wrote not one but two letters to the Medicaid office, confirming his professional opinion that “she most likely has a cancer” and warning the Medicaid people that “we decline any responsibility for delay in her treatment.”
       Still, she was not approved for Medicaid.
Lots of paperwork. No treatment. No surgery. Donna Huebner had waited patiently. Her cancer had not.

       Lots of paperwork. No treatment. No surgery. Donna Huebner had waited patiently. Her cancer had not.
       “Her feet were so swollen, she could barely walk. She couldn’t leave the house with shoes on. She had to wear slippers. I had said to her a number of times, ‘Just go into the Emergency Room.’ Her response was, ‘They keep telling me ‘Any day.’ If I could hold off a couple of more days, I’d rather do that, I don’t wanna lose my house,’” says Kathy.
       One of the worst tragedies in this story is that at anytime Donna Huebner could probably have thrown herself at the system, promised to pay the bills herself, and faced the dire financial consequences later. She didn’t do it. It may seem crazy, yet studies suggest that this kind of medical self-denial lies at the heart of the problem of the uninsured. They don’t get help when it would do the most good. And when things get so bad they can’t stand it any longer, then — and only then — do they take action.
       For Manuel Garcia — the painter with the chronic kidney stones — that moment came in April.
       “Because the pain just became progressively unbearable, I said to myself, ‘I, I can’t die. I need to find some help to, to get better this moment,’” explains Manuel.
       He went to the emergency room of Holy Cross Hospital in Silver Spring, Maryland.
       And so what was his bill?
       “$1,400,” says Manuel.
       Fourteen hundred dollars? If you were insured, this kind of visit would probably cost you $50 and your insurer would pay a lot less too. That’s because large insurers with clout are able to negotiate discounts with doctors, with labs, and (in most states) hospitals too. That clout comes in part from the fact that insurers tend to pay their bills to a much greater degree than the uninsured. The price for being uninsured: Getting charged the highest rate when you’re least able to pay.
       So what happened at the hospital?
       Manuel explains, “I think normal. (He laughs.) First, they asked about insurance. I didn’t have insurance. I guess I, I looked well enough to them so that all they had to do was give me some pain injection. For what little they did to me, I ended up paying a lot, as if it was an expensive hotel room.”
       But what are hospitals supposed to do with the legions of uninsured people like Manuel — who show up at their doors with long-ignored medical problems that are expensive to fix? Manuel represented a real cost to a non-profit hospital he described as an expensive hotel. The fact is that Holy Cross Hospital treated Manuel, gave him injections of painkiller and a very expensive test, a CAT scan, on only the dubious promise that he would ever pay.
Manuel Garcia
       The CAT scan revealed two things: that his blocked kidney might be permanently damaged if left untreated, and that Manuel was a likely candidate for more hospital visits racking up more medical bills he could never pay.
       The emergency room doctors gave Manuel the number of a specialist he could call for follow-up care.
       Hockenberry: “Why didn’t you go to the specialist as the emergency room doctor told you?”
       Manuel: “I didn’t go because I didn’t have insurance. I couldn’t afford it.”
       Manuel knew he needed help. He just wasn’t sure anyone would help him at a price he could afford.
       All Michelle McKinney really wants to know this morning at Midland Memorial Hospital is whether something’s seriously wrong with her ovary, but first comes the question she’s asked whenever she or the kids need medical care:
       “Okay, are you insured or have Medicare or Medicaid?” asks the admissions clerk.
       “No,” says Michelle.
       Michelle’s given the address of an office that will help her figure out whether she qualifies for Medicaid or other financial assistance. She’s also asked how much she could afford to pay if she is not eligible for those programs.
       “I’ll put $10. I don’t even know, to be honest,” explains Michelle.
       Ten dollars a month sure sounds reasonable. But for Michelle McKinney this is a little more than an embarrassing charade. Over the years she has promised so many hospital clerks and bill collectors that she would pay $10 or $25 a month that she’s lost count how much she owes.
       Michelle is not some kind of compulsive liar when it comes to medical bills. Most of the time she’s making promises she can’t keep, she’s doing it for her kids.
       Both four-year-old Landy and two-year-old Cameron have severe asthma. When we first met Michelle and her husband Shawn in January, they were living with Shawn’s parents in the Colony, a town in Texas, just north of Dallas.
       Shawn told us he was making $2,200 a month as a computer repairman, but couldn’t afford the optional health coverage offered by his company.
       They were celebrating two birthdays. But the month before had been a difficult one. The kids kept getting sick. Every time one of the kids had trouble breathing, Michelle and Shawn had to decide whether to take them to the emergency room.
       “I’ve, you know, told Shawn I think I need to take, you know whether it’s Landy or Cameron to the E.R., you know? And he’s like, ‘Michelle do we — you have to take them? You know are they that bad?’” says Michelle
       Just like Manuel Garcia, the McKinneys were charged the full rate at the local hospital. A typical emergency room visit costs $300 to $600, and there were months when the kids went three times.
       “It’s just an insurmountable amount of money that the people are wanting from me that I can’t afford to give them, ” says Shawn.
       Sean and Michelle didn’t know exactly how much they owed. As they tried to figure it out, they opened envelopes that had been sitting around for six months.
       Hockenberry: “Of course, some people might say well, you know you can say you’re getting a big bill but you’re not going to pay it. You just stuff it in the drawer, so you’re getting the biggest discount of all.”
       Michelle: “And maybe if it wasn’t that big I could pay it.”
       And though they didn’t pay the bills, they did pay a price.
       Hockenberry: “So, if your kids are in the emergency room…”
       Michelle: “Mmm-Hmm. (affirmative)”
       Hockenberry: “Where’s your credit?”
       Michelle: “Down the drain. I mean, I can’t get approved for anything because of that.”
       Hockenberry: “Credit card.”
       Michelle: “Nothing.”
       Hockenberry: “Mortgage?
       Michelle: “No, I cannot get a house, can’t get a car.”
       All the stress took a toll on their marriage as well.
       Shawn: “We’ve talked about divorce, (sighs) unfortunately. I’m not saying it’s only because of medical bills. It’s just money in general.”
       There was one place where Michelle was able to get some help. Pedi-place — a nonprofit clinic in Lewisville — provides primary care to lots of uninsured children.
       “They were wonderful. They gave me medications. They saw the kids when I couldn’t even — you know pay ‘em,” says Michelle.
       Still, Michelle says she was embarrassed when she couldn’t afford the clinic’s $30 fee. And so, once when Landy got sick, she didn’t bring her in.
       “I didn’t — I didn’t wanna ask anybody for $30. I thought she had the flu. I thought she’ll get over it. But she didn’t,” explains Michelle.
       In fact, Landy got worse.
       “She wasn’t eating, drinking. She was pale. She looked horrible,” says Michelle.
       Michelle waited three days for lack of $30.
       By the time Michelle finally got Landy to Pedi-Place, a problem had become an emergency. Landy’s skin was the color of wallpaper paste.
       “She had an asthma attack and it was making her lungs shut down,” says Michelle.
       Hockenberry: “You could have lost her.”
       Michelle: “No. They told me if I would have waited five more minutes she would have been gone.”
       The clinic saved Landy’s life. But the stress and financial pressure of being uninsured with two chronically sick kids helped bring down this marriage. She and Shawn separated. In March, Michelle and the kids moved into her parents’ home in Midland, Texas. She was now a single mom, with no health insurance, no credit, and no job.
       Michelle explains, “I guess my main thing is — I don’t have a career behind me, you know — I’m trying to go to school. I get lonely and depressed sometimes because of it and think how am I gonna do this? I don’t know. I really — I just go day by day.”
       It was just a few weeks after Michelle got herself and the kids settled in Midland, that she started feeling seriously ill. And she did what any uninsured person does.
       “I waited. I was in pain. I was throwing up. I waited for three days before I went,” says Michelle.
       Michelle had often worried that she’d been gambling with her children’s’ health. Now, she worried about her own.
Reporter's notebook
Having spent two weeks at both party conventions, here in Los Angeles and in Philly, I heard a lot about health care. There was a lot of talk about the uninsured in America. Bill Bradley even mentioned it on Tuesday night. He came right out and said that 44 million Americans are without health care. From both parties there has been the ritualized wringing of hands in the convention halls and the shouts and applause from delegates that they, not the other party, are best able to handle this problem.
Sadly neither party can take much credit for alleviating the plight of the uninsured. It has gotten worse over the past eight years. Though the Democrats won the White House brandishing the issue of health care in 1992, nothing much has changed. All during these conventions I have been thinking about the characters we at "Dateline" followed for much of a year as they attempt to cope with being uninsured. I watched as people gambled with their health, made reckless choices, delayed treatment, hoped that disturbing symptoms simply went away, knowing that nearly any deterioration of their health would wipe them out financially. I watched as the status of being uninsured humiliated them, destroyed their credit, and in at least one case killed a person. We ended up chronicling a life slipping away while the system offered only paperwork, delays, bad advice, the uncaring chill of being outside a social blanket insured Americans take for granted.
I don’t know if the politicians in Philly or Los Angeles will do anything to change the plight of 44 million terrified Americans and their families. You might think those numbers would move mountains. If any lawmakers are listening to our story they will hear the voices of three families and their overwhelming pain, loss and guilt. The consequences of being uninsured in America are clear. The experiences of these people cannot be denied. The choice for politicians is whether or not once again they will simply avert their eyes and wait eight more years. As we learn in chilling detail in our story, politicians can wait, but disease and health problems wait for nothing.
I hope you learn something from our work. Our team has spent uncountable hours putting this story together. It is perhaps the best snapshot of a complicated social problem I have ever been involved in producing in my television career. I hope you agree. In any case, thanks for taking the time to look at "Dateline" this week.
-- John Hockenberry
"Dateline NBC"

       “You can’t tell me if they see something wrong or anything?” Michelle asks a hospital tech.
       Even when an uninsured person lands in one of the system’s erratic safety nets, there is still no security. For instance, as she waited to learn what was wrong with her, Michelle worried, with the peculiar logic of the uninsured, that it might not be serious enough.
       “So you’re waiting for results on pain in your abdomen. And perhaps one of the better outcomes is that you’re really, really sick?” asks John Hockenberry.
       “I know it’s awful. But yeah,” she says.
       Hockenberry: “Because then boom, suddenly things are going to get paid for.”
       Michelle: “That’s what I think, yeah.”
       Then there’s the fact that when Michelle felt bad she went to her family doctor — the hospital emergency room. The E.R. is the most expensive place to get treatment, and the doctors there can’t possibly know Michelle and her kids the way a real family practitioner would.
       The emergency room doctor who gave Michelle her results had seen her just once before.
       “They found nothing abnormal. You may have had a small cyst on one of your ovaries that has ruptured and released a little bit of fluid. That may have been why it was hurting. But generally it will be reabsorbed by your body and go away,” explains the doctor.
       “Okay. That’s good news then,” says Michelle.
       Hockenberry: “You kind of dodged a bullet, don’t you think?”
       Michelle: “Yeah. Yeah, I do think. I think I got real, real close. And I think I got real lucky.”
Michelle called a pharmacy in Midland to find out how much one of her kids’ medications would cost. One hundred and fifty-six dollars, they told her. The equivalent of a ransom. Her children’s health — the hostage.

       But would her chronically ill children Landy and Cameron be so lucky? Now that Michelle was living in Midland, Texas, she was a long way from Pedi-Place, the clinic that had helped with asthma treatments in the past. The clinic’s cabinet, full of free medications lay well beyond her reach.
       Michelle called a pharmacy in Midland to find out how much one of her kids’ medications would cost. One hundred and fifty-six dollars, they told her. The equivalent of a ransom. Her children’s health — the hostage.
       “They have to have it and I can’t get it out. It’s depressing,” she explains.
       So she improvises, rations, she tries to borrow from friends.
       “When they cough, if I’m out of the breathing treatment, I give them cough syrup. You know, which that’s not gonna help asthma,” she offers.
       Hockenberry: “It’s not going to help asthma at all.”
       Michelle: “No.”
       Hockenberry: “It just says Mommy’s doing something.”
       Michelle: “Right.”
       Dr. Darla Kincaid, the medical director of Pedi-Place, told us that if asthmatic children like Landy and Cameron don’t get anti-inflammatory drugs on a daily basis they could suffer permanent lung damage when they’re older.
       Hockenberry: “Are they getting that?”
       Michelle: “No.”
       Hockenberry: “What do you think the consequence of that for their health is going to be, say 10 years from now, 20 years from now?”
       Michelle: “I guess I’m hoping that it’ll — they’ll grow out of it — be okay.”
       Hockenberry: “Gambling.”
       Michelle: “Yes. With their lives, that’s what I feel like sometimes. I don’t want them to look back at me for: Mom, why didn’t you help us more? Why didn’t you get that medicine for us?”
       Hockenberry: “Sounds like that’s going to be a tough moment.”
       Michelle: “Oh yeah. And I’m not ready for it. I’m not.”
       In May, Manuel Garcia heard about La Clinica Del Pueblo, a nonprofit clinic that serves a largely hispanic population in Washington, D.C.
       “I could literally almost see, you know, the capitol building from where I see patients. It’s that close, and yet that far away,” says Dr. Helen Burstin a volunteer at La Clinica.
       She says more than a third of all Hispanics are uninsured. Many of her patients have been waiting endlessly for important tests and procedures.
‘The research has really shown us that the uninsured are much more likely to delay seeking care, even for really serious symptoms... And over the long term, they’re 25 percent more likely to die, compared to insured patients.’
       She explains, “I have a patient who had a stroke, he’s been waiting three months to get a CAT scan. Three months I’ve been waiting to find out why he’s still having trouble speaking and still having trouble writing. It’s very heartbreaking to know that if this person had insurance, I could get them the care they need now.”
       When she’s not volunteering at La Clinica, Dr. Burstin directs national research for The Federal Agency for Healthcare Research and Quality. The data that crosses her desk is just as disturbing as what she sees at the local clinic.
       “The research has really shown us that the uninsured are much more likely to delay seeking care, even for really serious symptoms. They’re four times more likely than insured people would be. And over the long term, they’re twenty-five percent more likely to die, compared to insured patients,” says Burstin.
       Hockenberry: “Have we made a judgment in America, do you think, that people who don’t have health insurance ought to die at a twenty-five percent greater rate than the rest of us?”
       Dr. Burstin: “I don’t think so. I think most...”
       Hockenberry: “But that’s the consequence.”
       Dr. Burstin: “I, I, that is the consequence.”
       In Manuel’s case, Dr. Burstin was worried he could lose one of his kidneys. But there were only a handful of urologists in the entire D.C. area who agreed to take charity cases from La Clinica and fifty other clinics, and there was a five-month wait for those limited spots. It was not clear how long Manuel would have to keep working in pain.
       By September 1998, Donna Huebner still had a mass in her lung and still didn’t have Medicaid. She started to panic.
       Her handwritten notes tell a story of a quiet, tragic desperation as she reached out to anyone she could think of including Donna Shalala, the Secretary of Health and Human Services, and New York Governor George Pataki.
       To the governor she wrote, “I cannot believe that after eight months a determination has not been made on my case.” She spoke of her “mental anguish, not knowing if the damage or growth of the disease… will render death or leave you with no quality of life at all.”
       Danielle Huebner: “She started praying all the time. You know, please God...”
       Hockenberry: “How lonely? And yet she was doing what she’d always done?”
       Danielle: “Uh-huh. (affirmative)”
       Hockenberry: “Mom stayed home and treated herself?”
       Danielle: “Exactly.”
       In October 1998, Donna showed up at the emergency room of Southside Hospital with pneumonia and a fever that would not break. Her body was giving out. She was so sick she had to be admitted to the hospital. Shortly after that, Donna’s boss Kathy Cohen got a call from the Medicaid office. They had heard from the governor’s office, Kathy says, and they were looking for Donna.
       “I informed her that she’s no longer employed here, that she’s in the hospital,” says Kathy.
       Hockenberry: “You told this to Medicaid?”
       “Right. And her response was, ‘Oh, she’s unemployed? Okay. She’s approved. I’ll put it through today.’” Kathy explains.
Now that she lay in Southside Hospital, so sick she could not work, Donna Huebner was poor enough to get her long-awaited Medicaid.

       Approved? That’s right. Now that she lay in Southside Hospital, so sick she could not work, Donna Huebner was poor enough to get her long-awaited Medicaid. But she had another problem now.
       Danielle: “They told her that it had spread.”
       Hockenberry: “So this was no longer a spot.”
       Danielle: “No.”
       Donna Huebner spent the rest of her life in and out of hospitals. She had chemo, radiation, all sorts of tests. Now that she was in really bad shape, Medicaid, the government’s insurance program, would pay for all of it. Her friends knew that it was too late.
       “I call the nurse over to where I’m standing actually, and I say, ‘I can’t find Donna Heubner. Where is she?’ She turns me around, ‘You’re standing right in front of her. I didn’t even recognize her,’” says Kathy.
       In a matter of months, she seemed to have aged decades.
       “To watch somebody go through that is just (sighs) horrible,” says Danielle.
       And Danielle says it wasn’t just her mother’s health that had been taken from her.
       Danielle: “There wasn’t that — that fight in her anymore.”
       Hockenberry: “And was that something cancer took away?”
       Danielle: “No I think it was something — that the Medicaid and...”
       Hockenberry: “This nine month struggle…”
       Danielle: “Yes.”
       Hockenberry: “…took away the fight that you’d always seen.”
       Danielle: “Yes.”
       Hockenberry: “That’s a lot to take from somebody.”
       Danielle: “It’s what she had to keep her going.”
       Donna Heubner died on March 1, 1999. Her death certificate lists “cardiac arrest due to end-stage lung cancer” as the cause.
       “It just doesn’t seem possible that someone can be left to die because they don’t have some dollars in their hand, because they don’t have a credit card, because they didn’t sign over their house to you,” says Kathy.
       Was it that simple? Actually, it was far worse. As we looked into Donna’s case, we discovered that the health care system had allowed her to waste crucial months going down an utterly hopeless path. And thousands of miles away in Texas, misinformation also imperiled Michelle McKinney and her kids.
       “I feel real defeated. I feel sometimes like I wanna give up,” says Michelle.
       Though she tried not to show it, the pressure of being uninsured and having sick kids was starting to get to Michelle McKinney. Her fruitless attempts to get the kids on Medicaid over the past two years had frustrated her and led her to conclude that there was no help to be had.
       “I wish there was a program or something out there that could help families like us,” she says.
       There was such a program. The 1997 Children’s Health Insurance Program for kids of the working poor. Billions of federal dollars made available to the states to help people like Shawn and Michelle with their sick kids. But while other states put programs into place, the state of Texas delayed, and only started to sign up families in April of this year. Michelle and Shawn were split by then. A Texas official told us that now, as a single mom getting $500 a month in child support, Michelle probably could get her kids on Medicaid.
       You’d think Michelle would have been delighted by this news. Not quite.
       Michelle: “I trust y’all. I just — it’s hard for me to believe.”
       Hockenberry: “You’re very skeptical.”
       Michelle: “Yeah.”
       Hockenberry: “I can see it in your eyes.”
       Michelle: “Yeah. Cause I’ve been through it.”
Studies show that the uninsured are often unaware of programs, on the books for years, that might offer assistance and are frequently demoralized by red tape even when they qualify.

       Studies show that the uninsured are often unaware of programs, on the books for years, that might offer assistance and are frequently demoralized by red tape even when they qualify. It’s been estimated that seven of the eleven million uninsured kids in this country would be covered by government programs, if only their parents knew how to sign them up.
       Manuel Garcia’s problems had only gotten worse by mid-May. He was still working despite the pain, and he was getting more and more frustrated.
       Hockenberry: “What’s it like to be uninsured in America?”
       Manuel: “Well, I think you just become invisible.”
       A few days later, a lucky break. By making some calls, a nurse at La Clinica had managed to get Manuel a urology appointment sooner than expected.
       But the urologist told Manuel he needed an expensive test, a nuclear scan. Only four slots a month were available for all the charity cases like Manuel. So again, he would have to wait.
       “No one should have to live in pain, when he has a perfectly treatable condition,” says Dr. Burstin.
       Hockenberry: “There’s something immoral about that?”
       Dr. Burstin: “Yes.”
       The death of her mother was tragic enough but what plagued Danielle Hubner as she recalled the vibrant woman Donna had been was how her battle with the system, more even than with cancer, had taken that optimistic person away. How it had laid her low, robbed her of hope, made her angry and bitter in the end.
       “She would walk around — try to walk around — crying, angry, telling me that she wanted everybody to know what they did to her,” says Danielle.
       So who was at fault for what happened to Donna Huebner? The doctor? The hospital? Donna herself? The Medicaid office?
       Dennis Nowak is the spokesman for the Suffolk County Department of Social Services, which handled Donna Huebner’s Medicaid application.
       Hockenberry: “Is this the way the system’s supposed to work?”
       Nowak: “What our experience is with University Hospital at Stony Brook is that if your Medicaid application is pending and you need treatment, they will act, they will treat you.”
       Hockenberry: “Now, that’s clearly not the message that a terrified Donna Huebner got in this interview with her doctor. How do you explain that?”
       Nowak: “I cannot. I cannot explain the doctor’s actions here. He had no business waiting for Medicaid.”
       Dr. Thomas Bilfinger has received awards for performing charity surgery on people from the developing world. He declined to give us an interview. But after Donna’s death, he told Long Island Newsday that as long as Donna Huebner didn’t have health coverage, she wouldn’t “make it through the door” of the hospital.
       University Hospital, part of the State University of New York, says its policy is that “any patient who needs care will receive it.” Uninsured patients can work out “a payment schedule appropriate for their assets,” in some cases paying, “as little as five or ten dollars a month.” “There is no reason for any patient to go without needed care,” the hospital says, “unless he or she has elected to delay treatment until receiving Medicaid in order to avoid putting his or her assets at risk.”
       But Donna’s daughter believes that her mom was never aware that she could work out a payment program, however small, to have her surgery.
       “I don’t think that they told her this because she would have done it,” says Danielle.
       And it’s hard to believe Donna would have waited so long for Medicaid if she understood just how sick she’d have to be to qualify. Remember, she wasn’t quite poor enough, but she figured her lung cancer would make her sick enough to be considered “disabled.” But according to federal guidelines she’d have to be so sick she wouldn’t be able to work for at least “12 months,” or have a condition that is “expected to result in death.”
       Hockenberry: “So Donna Huebner, in effect, had to die to prove she was disabled?”
       Nowak: “She didn’t have to die. She could have given us, or the doctor could have given us the diagnosis.”
       By diagnosis, Nowak means test results showing specifically what kind of lung cancer Donna had, because only the most severe, inoperable or incurable kinds of lung cancer are considered “disabling” under the federal guidelines.
       Hockenberry: “Although if she’d come back with a diagnosis that said, ‘yes, you have lung cancer, but it’s a simple operation, you’ll be out for two weeks and then you’ll be cured,’ you wouldn’t have granted approval right?”
       Nowak: “That’s possible. That’s right. That’s what the guidelines say, the federal government guidelines.”
       All those bewildering hurdles Donna fought to get over — needing Medicaid to have surgery, needing proof that she had cancer to get Medicaid, needing a letter from the doctor if there wasn’t other proof — she didn’t know it, but all that time — for ten months — she had been running a race with the system she could not possibly have won. At least not on the course she had chosen. Sure she was sick, but not enough to be disabled. And Donna’s decision to keep working and try to hold onto the house seems, in retrospect, like a fatal one.
       Hockenberry: “So working people who choose to continue to work — are penalized by the system.”
       Nowak: “They may not be eligible for Medicaid, that’s true.”
       Hockenberry: “Is that fair?”
       Nowak: “Fair or not, that’s the way it’s set up right now.”
       By July Manuel Garcia was still suffering — and still waiting for that test the urologist said he needed. It had been three months since he first sought help at La Clinica. He couldn’t work as much now. The pain slowed him down. But once again, the way the system’s set up, he’d have to get a lot sicker before we all end up paying for his medical care.
       Hockenberry: “If the ultimate worst case scenario happens, he goes into needing dialysis, loses both kidneys, who pays for that?”
       Dr. Burstin: “Well, interestingly, we do because that’s a publicly financed program. And it’s actually estimated dialysis costs $45,000 per year.”
       So in a sense, without knowing it, we the taxpayers have been up on that ladder with Manuel all along, gambling that $10,0000 in care delayed now won’t cost us $45,000 a year later.
       By July, Michelle McKinney and her kids had health insurance — not from Medicaid. Her husband Shawn got a raise and put the extra money towards insuring the whole family. Shawn and Michelle also got back together. A happy ending — until you consider the costs.
       Shawn and Michelle’s tens of thousands of dollars in unpaid medical bills jacked up health care costs for everybody who pays insurance premiums or uses that hospital. But the real costs lie ahead, if Landy and Cameron develop permanent lung damage because they didn’t get their asthma medicine regularly.
       And remember Medicaid did not pay for the several-thousand-dollar lung surgery that might have given Donna Huebner a new lease on life. But once she was seemingly beyond cure, how much did taxpayers pay then?
       Nowak: “$86,000.”
       Hockenberry: “I’ve got $86,113.38.”
       Nowak: “Right.”
       So could several thousand dollars spent sooner have saved $86,000 spent later?
       Nowak: “We don’t know the answer to that. And we do not know whether or not this would have changed the outcome.”
       Hockenberry: “But certainly, no doctor would advise that if there’s a mass on your lungs, that you sit around for nine months and expect to live, would they?”
       Nowak: “Exactly.”
       In the end, Donna Huebner didn’t lose her home. She lost her life. By trying to keep one, she lost the other.
       And if you go to the official record of her passing, you’ll find nothing to suggest that a ten-month delay in cutting out cancer might have had anything to do with Donna Huebner’s death at age 55.
       Hockenberry: “You know, it’s almost an accident that we even know about Donna Huebner. She decided, for reasons that we don’t fully understand, to tape her conversations with her doctor. Unless we knew about this case, it wouldn’t show up anywhere, right?”
       Nowak: “That’s possible. There could be other Donna Huebners — who are facing a disease without insurance coverage.”
       Hockenberry: “Who die — quietly, terrified, and utterly alone.”
       Nowak: “That very well could be the case, yes.”
       Manuel Garcia finally had his nuclear scan last week. It showed that his kidney is still working, but he needs surgery, which his volunteer urologist has said he will do for free. As for Manuel’s $14,000 emergency room bill? Hospital officials told “Dateline” that much of it would probably be forgiven if Manuel applied for financial aid. Manuel says no one ever told him that.
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