© 2004 Saginaw News.
Copyright 2004 Michigan Live. All Rights Reserved.
Thursday, May 27, 2004SCOTT DAVIS
THE SAGINAW NEWS

Hope was a pinprick away, but Deneane Chiplock wasn't elated.

Within the hour Wednesday, a Saint Mary's hospital nurse was to place a flexible tube in Chiplock's left arm so she could intravenously receive an experimental drug she hopes will slow the progress of amyotrophic lateral sclerosis, or ALS.

The Saginaw Township mother says the drug, ceftriaxone, is her only shot at living beyond eight months. But joy gave way to fear.

"I'm scared. I'm out here without a net," Chiplock said. "I'm afraid I'm jumping into the lake, and I have no way to swim to shore. I have no idea how I'm going to pay for it."

She's hoping the community will throw her a life preserver.

Facing the $9,300 monthly cost for the drug, she and her husband, Jerry, are asking Saginaw-area residents and a network of friends nationwide to contribute toward her drug therapy.

The family's medical insurer has refused to cover the drug because it is experimental, and the family already has nearly wiped out its savings because of Deneane Chiplock's past medical expenses.

Because of her illness, she cannot work. Jerry Chiplock, vice president of human resources at Saint Mary's hospital, said he earns a middle-class salary but cannot disclose it under terms of his employment.

ALS, more commonly known as Lou Gehrig's disease, causes one's muscles to waste away, slowly robbing victims of their ability to move their limbs and eventually even to breathe and to swallow.

"I have never been in this position before," she said of asking for financial help. "All your dignity with this disease goes out the window. I am embarrassed to go to the public, but I am desperate enough to have to try this. Without the public's help, I can't do it."

She said the drug, which has shown promising results in earlier studies, could extend her life expectancy to 18 months.

"This is the one that appears on the surface to hold the most promise," Jerry Chiplock said of the drug.

But Deneane Chiplock said there's another compelling reason to begin the drug treatment. Dr. Jeffrey Rothstein of Johns Hopkins University in Baltimore hopes to win approval this fall from the U.S. Food and Drug Administration to begin human clinical trials on how ceftriaxone affects ALS.

The drug already has federal approval for treatment of meningitis, but researchers are uncertain how it could help those with ALS. With their doctors' approval, a few ALS sufferers already are using the drug pending FDA review.

Deneane Chiplock said she recently has corresponded with Rothstein, and he has expressed interest in including her in his formal study once it beings. She carries a genetic strain of the disease that is a focus of his research.

"I consider having this disease in my body -- that I'm a walking lab," Chiplock said. "If I do not try this, I am wasting this laboratory. I have to try it to be an answer for my kids, and for other ALS patients."

Because her form of the disease is passed genetically, her two sons, Sean, 13, and Evan, 10, each have a 50-50 chance of developing ALS.

Once the study begins, Chiplock would receive the drug free of charge. She said she simply can't wait because she likely would die before then. Researchers say the earlier a patient takes the drug, the more beneficial it is.

In the meantime, a Saginaw-area neurologist is prescribing the drug for her, and she is meeting monthly with Dr. David Simpson, director of the Muscular Dystrophy Clinic at Michigan State University in East Lansing, who will examine her and relay her progress to Rothstein.

Chiplock must take the drug daily through her intravenous line, likely through a home health nurse that may cost up to $200 a day. Her insurer also would not cover that expense.

Because Chiplock plans to spend her final months at home, the family also faces an additional cost of $220,000 the first year alone. That will cover other medical and nursing care needs, including home renovation. Her insurer will pay only $34,000 of that cost.

She continues to walk with a cane, but she has begun to fall more often, and she has noticed a worsening use of the right side of her body.

For now, her main hope is to contribute to ALS research while enjoying possibly a few more months with her children and husband.

"When you have a 10- and a 13-year-old, you'll take all the time you can get," she said. "I have two kids that I want to see grow up for as long as I can." t

Scott Davis is a staff writer for The Saginaw News. You may reach him at 776-9665.