Universal-Coverage Law: A 'Miracle' That Helped Save a Life

The author rests on a beach between rounds of chemotherapy treatment. She moved to Massachusetts before learning of her life-threatening illness.
The author rests on a beach between rounds of chemotherapy treatment. She moved to Massachusetts before learning of her life-threatening illness. (Family Photo)
By Ibby Caputo
Washington Post Staff Writer
Tuesday, October 13, 2009

When I tell the story of my illness, I often tell it in terms of miracles. In 2007, at age 26, I was given a diagnosis of acute myelogenous leukemia and told that without treatment I would live six more weeks. The disease proved resistant to chemotherapy, but a transplant of blood stem cells was successful. A miracle. Six weeks after the transplant, I came down with viral meningitis, and though it left me skeletal and barely able to walk for a while, it did not kill me. A miracle.

But perhaps the greatest miracle of all was that shortly before I found out I was sick, I had moved to Cape Cod, Mass., to intern at a radio station and work as a coffee shop barista. I had no medical insurance when I received my diagnosis, but miraculously the state's watershed universal health-care law had recently gone into effect. And since I was not making much money, I qualified for the state's public option.

I remember sitting alone in a room at Brigham & Women's Hospital in Boston, shell-shocked. In 36 hours I had absorbed a nightmare's worth of disturbing information about my bones, my blood and my future. And I was unnerved by the lack of privacy. Doctors, nurses and technicians would rotate through the door and either take something from me, like a blood sample, or throw something at me, like more information about myself.

Then, a woman walked in. She put a paper in front of me, had me sign in three places, asked for a few months' worth of paycheck stubs, and I was insured. A miracle.

Some $913,425.15 later, I am alive. That's how much two years of treatment for me cost. I struggle with many things because of my illness, but one thing I do not struggle with is medical debt.

Others are not as lucky. This summer I spoke with a 35-year-old American named Ruben Garza. Ruben lives in Austin and works part time at Planet Cancer, an advocacy group for young adults with cancer. In February 1999, at age 24, after what Ruben called a "relay" of doctor visits -- from a general practitioner to a general surgeon to a neurosurgeon -- a tumor was found on his spine. The tumor was malignant, and Ruben was diagnosed with Hodgkin's lymphoma.

Ruben, like me, was uninsured at the time. He said that up until then he had been good about paying off his college loans and other bills. He had studied biology at the University of Texas and had wanted to be a pharmacist. But he was derailed by his diagnosis and his medical bills.

Being sick turned out to be a battle on two fronts.

"One being the health and the other the paying for it," Ruben said.

With the help of a social worker, Ruben wrote letters to pharmaceutical companies seeking a reduced price for his chemotherapy treatment. He filed applications for other assistance. A year after his diagnosis and treatment, Ruben went back to work for a clinical research company, but the job did not offer him insurance.

And then he relapsed.

Ruben applied for Medicaid. He said he remembered sitting in the local Medicaid office, in an unremarkable government building, waiting for a caseworker. Though he was "ragingly sick inside," he said he did not look it and was worried he would not be able to convince his caseworker.

"It turned out to be a really humiliating experience," he said. "You have to reveal so much of your life." In the end, he was approved.

Ruben underwent a stem cell transplant, as I did. Eventually he was able to start working again, with a different clinical research company. This one offered insurance. But when he relapsed a second time in 2002, he had to stop working. Ruben purchased COBRA, a continuation insurance, for as long as he could afford it, and then was uninsured and forced to seek charity again. He fell deeper into debt and at times as many as 20 bill collectors would call in a day.

"Eventually you just turn the ringer off for days at a time and hit delete whenever you hear the message machine," Ruben said. "I had to concentrate on not puking and on trying to eat or getting rest or not feeling pain or whatever."

Eventually, Ruben found a job with the Catholic Diocese of Austin and again was insured. For six years, he worked there, including through chemotherapy treatments. In May, though, because of the recession, his job was terminated. Ruben now pays $440 per month for temporary coverage, but it will expire in two months.

Ruben's life has been shaped as much by his struggle to pay for his treatment as by his disease. "There is a darkness attached to all of this once you live through it," he said.

I have seen and talked about that darkness with many other people, including a man from Washington state who told me he had considered joining the army for medical coverage so that his young son could get a stem cell transplant immediately. A woman down the hall from me in that Boston hospital -- she was not that much older than I was and not a resident of Massachusetts -- died from the same disease I had. I remember my father talking about how he had seen posters trying to raise money for her medical bills and it saddened me to think of that burdening her in the last days of her life.

It is a miracle that I never had to expend energy worrying about whether my bills would be paid. I don't think I'm as strong as Ruben. If I had to worry about money, I don't know if I would have survived.

All of the miracles I experienced have taught me one thing for sure: A lot of things need to go right to fight for life. Being able to receive medical care is key. To me, the claim that having a public option would make it hard for private insurance companies to compete seems inhumane. Is price competition more important than my life? Or Ruben's life? Or the life of any congressman's child, spouse, neighbor or constituent?

I know some might look at the cost of my care -- the price tag of my life -- and say it should not have been the taxpayers' burden, but there is not one person among us who will not one day get sick. It is as inevitable as gravity and as certain as death. In this generous nation, shouldn't everyone who gets sick have the opportunity to get well again? How else can an American fulfill his or her inalienable right to life?

This issue is not important just for the sick or the poor or the unlucky. It is important for every American. I fear it may take a miracle to pass a government-sponsored program that ensures all Americans have access to quality health care.

I am praying for that miracle.


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