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By Gina Barton
Nearly 800 Hoosiers are waiting for a lifesaving organ or bone marrow transplant, and two bills approved in Senate committees this week could eliminate some of the financial reasons that discourage people from helping.
One bill -- House Bill 1049 -- sets up a fund to help pay for bone marrow screening, while House Bill 1030 will allow state employees to take time off with pay to donate marrow or an organ.
"If I never pass another piece (of legislation), this is what I want people to remember me for," said Rep. F. Dale Grubb, D-Covington, sponsor of HB 1030. "I have 17 grandkids, and I couldn't imagine seeing one of them waste away while waiting for a transplant."
"It's not breakthrough therapy anymore. This is everyday medical technology," said Phil Schermerhorn, a state employee and kidney transplant recipient whose experience helped spur on HB 1030. "Anything we can do to get more donors needs to be done."
Both bills can be considered by the full Senate as early as next week.
Randy McCune, 40, of Fort Wayne spent three years slowly dying as leukemia destroyed his blood cells. The chemotherapy designed to fight the disease rendered him weak, nauseated and miserable.
Many people like McCune die before they find a bone marrow donor. Because of genetics, the best odds of an identical match -- 25 percent -- are with a sibling. The rest turn to the National Marrow Donor Program, a list of people who have agreed to help a stranger if their marrow is a match.
About 2 million people currently are on the national registry.
Of the 93,100 patients diagnosed with leukemia or some other blood cancer each year, only about 1,800 find a suitable donor. That's because bone marrow transplants require a "matched" donor, one whose DNA is nearly identical to the patient's. Scientific testing to decode a potential donor's DNA costs $96, an amount many transplant advocates say discourages people from registering.
McCune found his match on a similar registry in Germany.
"I am alive today through the generosity and financial burden of a very generous person," McCune said.
The more people who join the registry, the better the odds for people like McCune, said Trish Molnar, the manager of the bone marrow department of the Indiana Blood Center. But some who want to sign up can't afford the fee. Others can't afford to take unpaid time off work.
Molnar predicts that if the two bills become law, hundreds more people will join the registry. If employers don't have to pay a processing fee for each worker who wants to donate, more companies likely will sponsor bone marrow drives, she said.
Although HB 1030 would guarantee paid time off only for state employees, many private businesses would follow suit, said Dr. Martin Milgrom, a transplant surgeon for Clarian Health.
"If the government sets an example, then hopefully private industry will follow," he said.
Julie Goss, 42, who owns a small video store in Cloverdale, said she would allow her employees to take paid time off to donate an organ, regardless of the law. Goss, who donated a kidney to her sister in May, testified in favor of HB 1030 on Thursday.
"It's a wonderful blessing to be able to see her really living," she said.
HB 1049 passed the Senate Health and Provider Services Committee on Wednesday, and HB 1030 passed the Senate Pensions and Labor Committee on Thursday.
If approved by the full Senate, the bills would go to the governor's desk.
Call Gina Barton at 1-317-444-6068.
Thousands of people throughout the country need organs or bone marrow. Here are the estimated breakdowns:
In Indiana:
In the nation:
How to donate:
For more information:
Copyright © 2002 Indianapolis Star.
Copyright © 2001-2002 Associated Press.
This article posted February 24, 2002.