Posted on Mon, Nov. 3, 2008
Falling Through
Casualties of the Health Insurance Crisis
Cuts force transplant patient to take chances.By Michael Vitez
Inquirer Staff Writer
TOWER CITY, Pa. - Thirty years ago, after divorcing an unfaithful husband, Jean Hawk moved to Tower City to start a new life.
She got a job to support three children. After a couple years, she met a man in church whose wife had died of cancer.
When he rode by on his motorcycle one time, Jean told her kids: "One day that man's going to be your daddy."
Then she left a message on Bill Hawk's answering machine. She told him if he was ever lonely, if he ever wanted to have a cup of coffee, or just have someone to talk with, she put the kids to bed every night by 9.
That night, he called and came by for coffee.
Bill Hawk liked to tell people he never had a chance. He was 49. Jean was 32.
They were married for 28 years. He adopted her three kids. They had a marvelous life together, she said.
In 2004, at age 58, Jean went into kidney failure and endured six months on dialysis. Tammy, her middle child, insisted on donating a kidney.
"If I die on the operating table," her daughter told her the morning of the transplant, "at least I know I died so you could live."
The transplant went perfectly. Jean was soon back to work.
But Tammy died a year later from liver cancer, making that kidney even more precious to Jean.
And Bill died months after that.
Medicare paid for the transplant, $75,000, and for three years covered 80 percent of Jean's anti-rejection drugs, $2,000 a month.
Her employer, MI Windows & Doors in Gratz, Pa., covered the other 20 percent.
In July 2007, three years after the transplant, Medicare, by law, stopped paying for Jean's drugs.
Her employer assumed the cost.
Last January, however, Jean abruptly retired.
And lost her insurance.
The home-building business had slumped, and Jean knew people were going to be laid off. She felt she had no choice but to retire. And sure enough, she said, weeks later, nine people lost their jobs.
Jean got a $1,200 Social Security benefit from her late husband, and intended to live on that.
Even though she had a transplant, and a well-functioning kidney, she still had end-stage renal disease, and thought that would make her eligible for Social Security disability. And with disability, she'd be entitled to receive Medicare coverage again.
But then she was told it would take four months for Social Security to decide whether she was disabled, and there was no guarantee, especially since she was in good health.
And if she applied for disability, she said, she was told she'd have to give up her widow's pension.
"One or the other," she said.
So she didn't apply.
If you are 65 or disabled, Medicare will pay for anti-rejection drugs for life. But for healthy transplant recipients younger than 65, Medicare covers only three years.
Jean is now in her fifth year.
The National Kidney Foundation is lobbying Congress to extend the drug coverage for life for all transplant recipients.
"We believe this is a cost-saving measure," said Leslie Spry, a kidney specialist and spokesman for the foundation. "To let people go back on dialysis just because they can't afford the drugs is silliness."
Medicare spent on average $71,000 a year per dialysis patient in 2006, and $17,000 on average per recipient for transplant drugs.
"Why would you not spend for anti-rejection drugs to avoid dialysis?" Spry asked.
Twelve percent of failed kidneys annually are due to an inability to obtain the medicines, according to the Congressional Budget Office.
With no help from Medicare, Jean then applied for medical assistance from the state - insurance for the poor. But her 2007 income was too high, and she was denied. (She tried again this summer. Still denied.)
When Jean realized she was on her own in February, she called insurance companies, one after another. When told of her kidney transplant, they wanted no part of her.
She could not buy affordable insurance.
She asked a Wal-Mart pharmacy how much her anti-rejection medicines cost for one month. Rapamune was $790. Myfortic, $1,200.
Her monthly income was $1,200. She had to pay for rent, food and heat. How could she afford medicines?
Jean didn't panic. After the deaths of her daughter and husband and other hardships, she was familiar with adversity. And she believes the Lord will either provide for her or call her home. She is content either way.
Before Jean left her job, her doctor wrote prescriptions for three months of anti-rejection drugs.
Instead of taking the recommended dosages, she cut them in half, even a third.
"Studies have looked at this," said Spry, the kidney specialist. "If people cut their doses, one in four will end up with a rejection episode, and half of those will lose kidneys. This is a serious problem."
Jean had her blood tested monthly, and monitored the level of creatinine - a waste product in the blood removed by kidneys. A rise in creatinine would reflect a decline in kidney function.
Jean's creatinine level was .9 - just fine - before cutting back.
In the spring, Jean was referred to the Schuylkill Alliance for Health Care Access, a nonprofit that helps the uninsured in Schuylkill County. The Alliance cobbled together a plan for her.
She went to see a primary-care physician for $13.50 a visit. He accepted the Medicaid rate; the alliance paid half and Jean paid half.
Same deal for bloodwork - it cost her only $12.
Alliance staffers applied on her behalf to pharmaceutical programs that provide free drugs to the poor.
Jean waited.
April. May. June. July.
Jean's creatinine level climbed from .9 to 1.6.
"She was very much gambling," said Spry, the kidney expert.
But what could she do?
Finally, in late July, "great, great news," she said. Novartis, a drug company, had sent a three-month supply of Myfortic.
"They will carry me for one year, free of charge," she said. "That is the best news I could have."
A few weeks later, another call. She got Rapamune through a program from CVS-Caremark.
Jean resumed her normal dosage. By September, her creatinine count fell back to .9.
"I feel great," she said this week, at home enjoying the grandchild of her late daughter, Tammy.
"At 1.6, rejection was starting to occur," Spry said. "But she caught it by getting back on her medicines.
"I've seen it when they up the dose back to normal and it doesn't respond," he added. "The person goes on to lose the kidney. Sounds like she might have been lucky."
What Went Wrong
The government paid for Jean Hawk's kidney transplant and most of her anti-rejection drugs. But her drug coverage lapsed after three years. Hawk quit her job just before her company laid off workers, thinking she would get Social Security disability. But she didn't. For months, she economized by cutting pills in half and risked destroying her kidney. Finally a local nonprofit got her free drugs through two programs. Her case shows some of the ways people can lose health insurance before they turn 65.
Contact staff writer Michael Vitez at 215-854-5639 or mvitez@phillynews.com.
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