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Amanda Jones' health care nightmare

August 31, 2007 | Page 16

ALISON McKENNA reports on a Chicago woman's health care horror story.

AMANDA JONES has had a traumatic struggle with a rare neurological disorder, cavernous angioma, caused by abnormal blood vessels in her brain. She was told by one doctor that she had only months to live.

But just as traumatic has been the 25-year-old's struggle to get medical care in the richest country in the world.

Amanda was turned down for health care coverage by major insurance companies--on the grounds that she had a "pre-existing condition." Now she is working her way through the bureaucracy of the public health care system. Almost every neurologist she was referred to would refuse to see Amanda after the first visit--because she didn't have any way to pay the bill.

"I worked two to three different jobs at a time, going nonstop," says Amanda, who lives in a suburb of Chicago. "I always wanted to do things on my own."

But now, talking about her battle with cavernous angioma, Amanda realizes that she can't navigate the U.S. health care system on her own.

What you can do

Contribute to the Amanda Fund by contacting Valerie Moxley at 847-687-6034 or at [email protected]. You can also donate by sending a check or money order (directed to the "Amanda Fund" account) to: Amanda Fund, c/o Harris Bank, 122 W. Main St., Cary, IL 60013.

Chicagoans who want to get involved in the struggle to change the health care system can contact the Chicago Single Payer Action Network--call 312-714-5154.

The California Nurses Association Web site is packed with information about the crisis of the U.S. health care system, and ideas of how to get involved in organizing for a change. The Physicians for a National Health Program Web site ( makes the case for a government-administered single-payer program.


Her story is far from unique. Amanda is one of the tens of millions of Americans without health insurance--about one in every six people in the country, according to the most recent available statistics from the federal government.

Most of the uninsured live in fear that an accident or illness will turn their lives upside down. For those like Amanda who do get sick, the resulting battle to get decent care is frightening, exhausting and infuriating--a never-ending cycle of filling out forms, arguing with corporations and searching for help.

Stories like Amanda's show why the U.S. health care system needs to be changed now--not tinkered with, as the mainstream politicians who say they will make insurance "affordable" want, but transformed into a system that would cover everybody. But as people like Amanda know well, it will take a determined struggle to make health care in this country a right for all, instead of a privilege for the few.

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AMANDA'S NIGHTMARE with the health care system began after she suffered a seizure in 2005, and her boyfriend took her to the hospital. "They did a CT scan and found out my brain was hemorrhaging," Amanda says.

"Before I knew my rights as a patient, I signed a waiver allowing them to send me to Cook County [the Chicago area's main public hospital]. If I would have known my rights as a patient, I wouldn't have signed that waiver, because then they would have had to take care of me at that hospital, right then. But because I signed it, they transferred me to Cook County, where I stayed for about three weeks.

"They discharged me with an unknown seizure disorder, and they gave me anti-convulsion medications. I kept on getting headaches to the point where I couldn't sit up without having to throw up or pass out. They did a spinal tap and...they took so much fluid out that I started to get post-spinal headaches, in addition to the headaches I was already having...

"It got pretty violent for me. I felt like I was unable to do anything. I'd wake up in the hospital or an ambulance, not knowing how I got there. It's really scary."

Eventually, the source of the condition was found--a cluster of abnormal blood vessels inside her brain, one inch above Amanda's right ear. "It's right between the areas for motor skills of vision and language," she says. "It's on the dominant side of my brain, which makes it more risky."

Amanda changed jobs so that she could get health care benefits. Her mother also had to leave her job so she could take Amanda to doctor's appointments and help take care of her.

Then Amanda ran into the insurance giants. Blue Cross Blue Shield wouldn't provide her with coverage because of her "pre-existing condition."

"Everyone has a pre-existing condition," Amanda says. "Health insurance is supposed to help you with your medical problems. But if it's a medical problem you had before your health insurance, basically, it's not a medical condition that insurance will pay for."

There is only one way to describe this kind of business calculation--that health care is rationed in the U.S., and access is restricted for those without the financial resources.

As Physicians for a National Health Program explains on its Web site, "Rationing in the U.S. health care is based on income: if you can afford care you get it, if you can't, you don't. A recent study by the prestigious Institute of Medicine found that 18,000 Americans die every year because they don't have health insurance. That's rationing. No other industrialized nation rations health care to the degree that the U.S. does."

After being denied insurance by Blue Cross, Amanda tried to get insurance at Humana, which also denied her. In the public health-care system, she was also met with frustration. "You have to apply for Social Security, and if you are declined for Social Security, then you apply for Medicaid, and if you are turned down from Medicaid, then you can apply for the Illinois Department of Human Services program," Amanda says. "And if you're approved for that program, well, they don't cover anything that's a pre-existing condition."

Illinois Gov. Rod Blagojevich has promised that his "top priority" would be to make sure "that everyone in Illinois has access to quality and affordable health care." But like other politicians, the rhetoric hasn't translated to actual access to medical services.

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THE OPTIONS open to Amanda were highly restricted. "I went through four different neurologists before a neurologist would see me more than one time," she says. "I got referrals from emergency rooms. and [the neurologists] would say, 'Here's your anti-convulsion medication, and I can't see you again'--because I didn't have the money to pay the bill.

"I had one doctor tell me flat out that I had three to six months to live because of the hemorrhaging, and that was four months ago."

Dr. H. Hunt Batjer, a neurosurgeon who teaches at Northwestern University, seems to be the exception. Batjer is waiving all of his fees and finding grants to pay for operating costs in Amanda's surgery, which is scheduled for September.

Amanda still needs to pay the hospital for her stay--and the estimated $300,000 in medical bills she has accumulated over the past couple years. "Without health insurance, I had to have a down payment for my surgery," she says. "Dr. Batjer said if I had insurance, it would have been booked already."

Neighbors and friends organized a fundraiser for Amanda at a pizza parlor in her hometown of Cary, Ill. So far, they have raised more than $6,000. "If I didn't have the fundraiser," says Amanda, "I wouldn't have a dime for the down payment, because I haven't worked since January."

If all goes well, the surgery should allow Amanda to resume a normal life. But in the best-case scenario, she will still live in the shadow of medical bills for many years to come. And the parade of health care horror stories is bound to continue as long as the status quo is allowed to continue.

There is no possible justification for the nightmare Amanda has endured. Mainstream politicians--most obviously, the major contenders for the Democratic presidential nomination--say their proposals for "universal health coverage" will solve the crisis, but health care activists say they leave intact the life-and-death powers of the insurance industry.

The real solution is a "single-payer" system--like the one proposed at the federal level by Rep. John Conyers, or in Illinois by state Rep. Mary Flowers--that gives all people access to health care.

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