Live Sicker, Die Younger

A year and a half ago, Sheila and Bob Wessenberg lived in a 2200-square-foot luxury townhouse outside Dallas, on an income of over $100,000. Today, they are facing bankruptcy and a terminal illness without healthcare. "I might die as a result of my poverty," says Sheila in disbelief. She has gone seven months without chemotherapy or follow-up exams because she has no insurance and no money to pay for healthcare. In a country that prides itself on medical excellence, we also have one of the most dysfunctional healthcare delivery systems in the world. While politicians tiptoe around the problem, thousands of Americans live sicker and die younger because they don't have access to even basic care.

The Wessenbergs and their two children are among an estimated six million people who lost their insurance last year as a result of the economic downturn. They are also living proof that the slide from middle class comfort to absolute desperation can happen at warp speed, especially when health issues are involved.

Just over a year ago, Bob, a Lotus programmer, had a relatively secure job and his family had excellent health benefits. When Sheila was diagnosed with Stage 2, Grade B breast cancer, she was able to get the lumpectomy and mastectomy she needed. Then Bob lost his job in December, 2001, and the dominoes began to fall. The Wessenbergs did the best they could to pay for COBRA insurance, but when the premiums jumped to $837 a month it became prohibitive. Like most people, the Wessenbergs chose to pay for food and their mortgage rather than health coverage.

When the Wessenbergs dropped their insurance, Sheila stopped seeking treatment for her breast cancer. She was eight months into chemotherapy, and since she suffers a particularly aggressive form of cancer, her doctor had recommended continuing treatments indefinitely. Since losing her insurance, she has not even had follow-up blood work to see if her cancer has spread. Considering that uninsured women with breast cancer are twice as likely to die from the disease as women with coverage, she is free falling without a parachute.

I met Sheila while writing a book that examines the personal toll of being uninsured. "Denied: The Crisis of America's Uninsured," which was released last month, recounts 41 individual stories to reflect the 41 million uninsured Americans. I wish I could say that Sheila's story is unique, but in researching this book I found there is an overabundance of tragedy -- every bit of it unjustifiable. The stories I came across are harrowing. They include Nancy Gorman who was refused radiation for her brain tumor for ten months until she lost her vision and could be reclassified as 'urgent.' And there's Wendy Bennett, who was sitting in her truck at a stop sign, got hit by another vehicle, injured her arm, and was forced to file for bankruptcy within two years as a result. Then there's Kevin Holyroyd, whose strep throat went untreated until it spread to his heart, causing a massive heart attack. These stories piece together the puzzle of how people become uninsured -- be it job loss, divorce, tight finances or chronic illness -- and how that translates into deferred care, financial ruin and unfathomable suffering.

According to the Institute of Medicine, some 18,000 people die prematurely every year as a result of being uninsured. If that isn't an epidemic, then what is? That's like having six September 11ths every year. It makes a mockery of our preoccupation with bio-terrorism and small pox vaccines. While we direct inordinate resources toward a potential threat, we are allowing real people to die real deaths every day on the home front. As if this weren't dire enough, now even the future of our existing subsidized programs is in jeopardy. Nearly every state has announced plans to trim Medicaid, potentially leaving millions more without any coverage in the coming year. In California, the cuts go painfully deep, with a projected 10 percent reduction likely next year. That means services will be reduced, while the eligibility bar will be raised.

Currently one in seven people is uninsured -- more than the populations of Texas, Florida, and Connecticut combined! The Wessenbergs happen to live in Texas, which has the highest percentage of uninsured people in the country. California ranks fourth, with over 21 percent of the population uninsured.

Every expert I interviewed for this book concurred that it's not a matter of whether the system will crack, but rather when it will crack. "No one who studies the healthcare system believes it will stay afloat too much longer," says Dr. Sandra Hernandez, CEO of the San Francisco Foundation. The future looks catastrophic.

As it stands now, the burden of healthcare falls on hospital emergency rooms. Although ERs used to be the option of last resort, they have become the line of first defense for uninsured people. Whether people use it as a primary care clinic or are brought in via ambulance with an acute condition, many of these patients could have been seen elsewhere, at far less expense. "Actually, we do have a nationalized health plan. It's called the emergency room," says Dr. Dave Ores of lower Manhattan. He isn't being facetious. The emergency room is the only place an American has a right to medical care. As a result, it has become the portal for healthcare in this country. Couple that with cutbacks in the number of staffed hospital beds, and we have a core meltdown in the making.

In San Francisco, on a recent night I visited San Francisco General Hospital, where there were 13 people waiting in the emergency room for in-patient beds. The wait can be as long as 24 hours. S.F. General, like hospitals all over the country, has seen a steady increase in uninsured patients. When General fills to capacity, which happens on a nightly basis, ambulances are diverted to other facilities. The number of hours that San Francisco hospitals divert ambulances has grown tenfold in the past five years, meaning it is more difficult for critical patients to receive timely care. Ultimately, the destinies of the insured and the uninsured converge in the emergency room, because when services are strained, patients who desperately need acute care suffer.

Despite common misconceptions, most people do not choose to be uninsured, unless you consider the choice between paying rent and paying for insurance a genuine choice. The uninsured cut a profile that is somewhat surprising. Eight out of ten live in families where one or more adults work. A third live in households that have an annual combined income over $50,000. The fastest growing group of uninsured people last year was middle and upper income adults, according to the Census Bureau. These individuals tended to work for small businesses and were either laid off from their jobs or their employers passed insurance costs off to them because the premiums jumped 13 percent in the last year alone. In fact, the rise in premiums has outpaced the rise in income for nearly 30 years.

When Bob Wessenberg was laid off, he had no idea how fast the down escalator traveled. "Our life used to be different," says Bob, whose voice betrays the inordinate stress he's under. "Our life was comfortable. We had a little left over for nicer things and enough to start saving for a rainy day. Then we got a rainy month and now we got a rainy year."

After going through all their savings and receiving an additional $10,000 in support from their family, the Wessenberg's have nowhere left to turn. Sheila works a few hours a week doing bookkeeping for Avery labels, earning $14 an hour, and Bob finally landed a menial job scanning documents for $11 an hour. Despite his qualifications, as a 51 year-old Lotus programmer Bob has become obsolete in today's job market. He has interviewed for over 300 positions without a hopeful prospect in sight.

As a last resort Sheila started panhandling. At a busy intersection near the Dallas airport, she recently held out a can that read: I am not a bum. I'm a mom. Please help. She was able to earn $150 in just two hours, which was used to buy groceries and other necessities, but it barely put a dent in the thousands of dollars of outstanding debt the couple owes. With each passing week they are falling farther and farther behind on being able to keep up with their house and car payments. They have been forced to consider splitting their family up among relatives if they lose their home.

Despite her lack of treatments, Sheila already has $2800 in outstanding medical bills she can't pay off. She applied for Medicaid and was denied because she was told she had too many assets. Her fate hung on a single piece of property: her car. She says without a car she will be a prisoner in her suburaban Texas home. But with her car, she may very well die sooner. "There is no reason why anybody should be shoved into homelessness and helplessness just to survive," she says. "It's morally wrong. We're out saving other countries and we can't save our own people.

Most people have no idea how the millions of uninsured Americans actually get healthcare, but they're confident that somehow everyone is taken care of. They don't realize that late detection and death rates are higher for uninsured cancer sufferers, and that healthcare costs are one of the two leading causes of personal bankruptcy in this country. They also don't realize that in the end, even though we don't have nationalized healthcare, we're already paying a heavy price for the uninsured. We pay every time an uninsured person can't pay their bills, so the hospital needs to make up the difference elsewhere. We pay every time we go to the emergency room and the beds are full and the waiting room is overflowing so we can't get adequate care. We pay every time we lose a loved one because they got too little, too late.

It has been said that our healthcare system is one of "perverse incentives, where everyone is incentivized to do the wrong thing." Doctors are incentivized to turn people away who have inadequate or no coverage. Patients are incentivized to forgo treatment until their conditions become urgent. Adults working fulltime jobs are advised to go part-time to qualify for benefits. Others are encouraged to spend down everything they've saved to get public assistance. Hospitals are forced to inflate their rates because insurance companies are driving down reimbursements. As a result hospitals then overcharge uninsured patients who aren't as adept at negotiation. Any one of these "perverse incentives" can cause severe damage. Cumulatively, they are a diagnosis for disaster.

While suggestions for reform range from a federally managed single-payer plan to a multi-tiered insurance scheme, ultimately, this has to be a battle of conscience over special interests. People's lives are on the line, while special interests continue to prevail.

We are a society at risk. When illness strikes, it afflicts the whole body. It doesn't choose one organ and spare the rest. In its current condition, America is a body with a raging infection. Forty-one million cells are already afflicted, and they are undermining everything they come in contact with. They have taken a toll on their immediate families and they are impeding the flow of care to others who think they're immune. We are all endangered by the crisis at hand.

Julie Winokur's latest book, "Denied: The Crisis of America's Uninsured," is published by Talking Eyes Media. This article originally appeared in the San Francisco Chronicle.

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