Dying for affordable healthcare — the uninsured speak

In a week of claim and counter-claim about the merits of healthcare provision in the US and UK, Ed Pilkington travelled to Quindaro, Kansas, to see how the poorest survive

Audio slideshow: Free health care in Kansas City

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• • Ed Pilkington, Kansas City
  • guardian.co.uk, Friday 21 August 2009 20.44 BST
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US protesters demonstrate against healthcare reform. Photograph: John Moore/Getty Images

In the furious debate gripping America over the future of its health system, one voice has been lost amid the shouting. It is that of a distinguished gynaecologist, aged 67, called Dr Joseph Manley.

For 35 years Manley had a thriving health clinic in Kansas. He lived in the most affluent neighbourhood of Kansas City and treated himself to a new Porsche every year. But this is not a story about doctors' remuneration and their lavish lifestyles.

In the late 1980s he began to have trouble with his own health. He had involuntary muscle movements and difficulty swallowing. Fellow doctors failed to diagnose him, some guessing wrongly that he had post-traumatic stress from having served in the airforce in Vietnam.

Eventually his lack of motor control interfered with his work to the degree that he was forced to give up his practice. He fell instantly into a catch 22 that he had earlier seen entrap many of his own patients: no work, nohealth insurance, no treatment.

He remained uninsured and largely untreated for his progressively severe condition for the following 11 years. Blood tests that could have diagnosed him correctly were not done because he couldn't afford the $200. Having lost his practice, he lost his mansion on the hill and now lives in a one-bedroom apartment in the suburbs. His Porsches have made way for bangers. Many times this erstwhile pillar of the medical establishment had to go without food in order to pay for basic medicines. In 2000 Manley finally found the help he needed, at a clinic in Kansas City that acts as a rare safety net for uninsured people. He was swiftly diagnosed with Huntington's disease, a degenerative genetic illness, and now receives regular medical attention through the clinic.

So how does he feel about the way the debate in the US has come to be dominated by Republican-inspired attacks on Britain's NHS and other "socialised" health services which give people the treatment they need even if they cannot afford to pay for it?

"I find that repulsive and an absolutely bone-headed way to go," he says. "When I started out practising I certainly didn't expect this would happen. I thought the system would take care of everybody."

Over the last month President Obama's attempts to live up to his election promise to extend healthcare to all Americans has stalled in the face of a sustained rightwing guerrilla attack. Opponents of Obama's reforms have succeeded in distracting attention from Manley and the 46 million other medically uninsured, swinging the focus instead on to the "evils" of publicly funded healthcare. The fear tactics were epitomised by Sarah Palin's wholly inaccurate claim that the reforms would set up "death panels" that would force euthanasia on to older people.

Such scaremongering has dismayed and infuriated Sharon Lee, the doctor who now treats Manley in Kansas City. "I'm very angry, very angry," she says. "Many of the people I treat have already been in front of a death panel and have lost – a death panel controlled by insurance companies. I see people dying at least monthly because we have been unable to get them what they needed."

Lee's clinic, Family Health Care, is a refuge of last resort. It picks up the pieces of lives left shattered by a health system that has failed them, and tries to glue them back together. It exists largely outside the parameters of formal health provision, raising funds through donations and paying all its 50 staff – Lee included – a flat rate of just $12 an hour.

Poverty line

Lee has just opened an outpost of her clinic in the outlying neighbourhood of Quindaro, an area of boarded-up houses and deserted factories where work is hard to find and crack plentiful and a per capita income is $11,025. A third of the population is below the federally defined poverty line.

And yet the local health department has decided the only health centre in the area will be closed by the end of this year and moved 30 blocks west to a much more prosperous part of the city where income levels are five times higher. Before long, one of the poorest areas of Kansas – of America – will be left without a single doctor, with only Lee's voluntary services to fall back on.

Even that is academic. Many of the residents of Quindaro were unable to see a doctor in any case – because they were uninsured. In Kansas, anyone who is able-bodied but unemployed is not eligible for government-backed health insurance as is anyone earning more than 39% of federal poverty levels. That leaves a huge army of jobless and low-income working families who are left in limbo. "It's the working poor who are most at disadvantage," Lee says.

As a result, she sees the same pattern repeating itself over and over. People with no insurance avoid seeking medical help for fear of the bills that follow, until it is too late. "When people come in they are already very, very sick. They have avoided seeing the doctor thinking that something may clear up, hoping they may be getting better."

Beth Gabaree, who came in to see Lee for the first time this morning, has experiences that sound extreme but are in fact quite typical. She has diabetes and a heart condition. Until two years ago they were controlled through ongoing treatment paid for by her husband's work-based health insurance. But he was in a motorbike crash that pulverised his right leg and put him out of work.

That Catch 22 again: no work, no insurance, no treatment. Except in this case it was Beth who went without treatment, in order to put her husband's dire needs first. He receives ongoing specialist care that costs them $500 a go, leaving nothing for her. So she stopped seeing a doctor, and effectively began self-medicating. She cut down from two different insulin drugs to regulate her diabetes to one, and restricted her heart drugs. "I do what I think I need to do to keep four steps out of hospital. I know that's not the right thing, but I can't justify seeing the doctor when my family's already in money trouble."

The problem is that she hasn't kept herself four steps out of hospital. Her health deteriorated and earlier this year she became bedridden. Even then, it took her family several days to persuade her to go to the emergency room because she didn't want to incur the hospital costs. "It was hard enough without that," she says.

After an initial consultation, Lee has now booked Gabaree for a new round of tests for her diabetes and is arranging for free medication. "It's wonderful," Gabaree says. "I'm so blessed. I didn't know you could get this sort of help."

That she sees basic healthcare as a blessing, not as a right, speaks volumes about attitudes among the mass of the working poor. Also revealing is the fact that Gabaree has absolutely no idea about the debate raging across America. She hasn't even heard of Obama's push for health reform, nor the Republican efforts to prevent it. "I don't watch much television," she says.

That provides Palin et al with a massive advantage: the 46 million people who would most benefit from Obama's plans are also among the least educated and informed, and thus the least able to make political waves. All of which leaves Lee fearful about the prospects for change. She has, after all, been here before – in 1993 when Hillary Clinton's pitch to overhaul the health system foundered. That attempt ended up doing more harm than good from Lee's perspective. Many of her most important donors stopped funding the centre because they assumed that the White House was fixing the problems. After the Clinton reforms crashed, brought down by the same rightwing assault that Obama is now enduring, it took many months for the centre's funds to regain their pre-1993 levels.

Recession

Lee fears history could be repeating itself. This time round there is the recession more unemployed equals more uninsured people who come knocking on the door of Family Health Care. Last year Lee and one other doctor between them dealt with 14,000 visits, and the numbers are rising daily. All of which leaves Lee part despairing, part determined to fight even harder for the bare minimum of human dignity. The frustration is that every day she must beg and plead with other health providers for simple treatments for her patients. "It drives me crazy with frustration," she says.

She rattles off a litany of horror stories. There was the man who walked into the clinic with a brain tumour. It took Lee three months to get him an MRI scan and another two to get an appointment with a neurosurgeon. Or the patient whose nerves in his neck were pushed against his spinal cord so that he lost use of both arms; by the time Lee found a way of getting him an MRI he was so sick he had to be operated on immediately. Or the woman who had such heavy periods she would wind up in ER every three months requiring a blood transfusion. What she really needed was a hysterectomy. "It took us almost a year to beg hospitals until she finally did get a hysterectomy," Lee says.

These are the stories, the broken lives, that have been obscured by the fury generated by the Republican rump. Unless Obama finds a way to regain the political initiative, to remind Americans that only nine months ago they voted overwhelmingly for change, then the future of millions appears bleak.

"Here's what I'd like to ask Palin," Lee says. "People without health insurance are dying, here in America, right now. So I'd like to ask her: how does that fit into your vision of good and evil, Sarah Palin?"

Obama's plan: health of the nation

What is Obama trying to do?

The goal is to increase access to healthcare by regulating costs. His plan would guarantee all citizens eligibility for care, but the government is not proposing a "single-payer system", like the NHS. Instead, private health insurers would continue to operate under new rules that would lower premiums and remove loopholes that allow them to avoid paying for treatment when it is most needed. Per person, healthcare costs are higher in the US than in any other country, and have been rising faster than the level of inflation. The quality of care is less of an issue — although citizens with solid insurance may be frustrated by the paperwork and costs associated with the current system, they have fewer complaints about their doctors and hospitals.

Who's opposing Obama's plan?

Those who fear the government would introduce congressional "death panels" to make end-of-life decisions for the elderly. The insurance industry is worried about their bottom lines. Members of Congress and voters on the left and right are concerned about the future tax burden. Many Americans also object to any increase in government involvement in their personal lives.

How can healthcare costs get so out of hand?

Many insurance plans do not cover "pre-existing conditions", so it can be difficult for people who have a chronic ailment to secure cover. Loopholes allow insurers to refuse reimbursement even if the policyholder did not know they had a particular condition when they took out insurance. "Lifetime caps" allow insurers to set a maximum amount of cover.

Who are the uninsured?

Up to 46 million Americans are uninsured, because they are unemployed, or their employer does not provide cover, or because they do not qualify for existing government-funded healthcare. People 65 and older can qualify for Medicare, the poor can qualify for Medicaid, veterans and members of the military can qualify for Veterans Health Administration and Tricare and children can be covered under a programme called SCHIP. Those overlooked by the system include the young just entering the workforce, the self-employed, the unemployed and people who work for small businesses.

Megan Mulligan in Washington