CAPE FIREFIGHTER WAGES BATTLE WITH CANCER, INSURER

Life is a battle these days for Mike Carlton a struggle against a deadly cancer of the bone marrow.

For the past several months, the Cape Girardeau firefighter and his family have also been locked in a struggle with his health insurance company, Blue Cross and Blue Shield of Missouri.

The insurance company has refused to pay for an expensive bone marrow transplant that Carlton's doctors say offers him the only chance for a cure.

Blue Cross officials argue that such a procedure is experimental and, as such, is not covered by the group health plan for the city of Cape Girardeau.

But Blue Cross officials have continued to review the matter in recent weeks, even to the point of holding discussions with Sheldon Weinhaus, a St. Louis attorney retained by Carlton.

"They have indicated they may decide at the last minute (to pay for the treatment)," Weinhaus said last week.

It appears now the treatment will proceed.

St. Louis University Medical Center and Dr. Gary Spitzer, a specialist in bone marrow transplants, have decided to proceed with the treatment with the understanding that either Blue Cross will finally elect to pay for it or Carlton will go to court in an effort to force the insurer to do so.

But the date and site of the treatment could change, assuming a last-minute agreement is reached between Carlton and Blue Cross, say those involved in the negotiations.

Carlton, 47, is scheduled to go to St. Louis Monday and enter the hospital Tuesday. He is scheduled to remain there for at least 30 days while undergoing the transplant procedure, which will involve transplanting healthy bone marrow into Carlton. The bone marrow will come from his twin brother, Cape Girardeau resident Ron (Ike) Carlton.

"It's been a nightmare," said Mike Carlton, who has been diagnosed as having multiple myeloma.

Multiple myeloma is a cancer of the white blood cells. The disease impairs the bone marrow's ability to manufacture blood cells.

"I don't want to fight. I don't want to argue," said Carlton. "I don't want to get mad and holler. I just want my coverage.

"The city thinks I am entitled to it. I think I am entitled to it. The hospital thinks I am entitled to it," he said. "I am real scared and real concerned and I want to get this over with."

The medical problem first surfaced in early April. At the time, he thought it was just a routine back pain.

"It was Friday, April 3. I was on duty at the fire station and we had a fire run," recalled Carlton. "I picked up a couple of pressurized fire extinguishers."

The extinguishers weighed 35 to 40 pounds apiece, he estimated.

"I picked them up and took off running with them. When I set them down, my back hurt a little bit, but I never thought much about it," he said.

Carlton was called out again on a fire run in the middle of the night. By the time his shift ended on Saturday morning, April 4, he was experiencing severe back pain.

By Sunday morning, however, when he returned to the fire station, his back seemed better. "But as I moved around a little bit, it got worse and worse and worse.

"Finally I got in a chair up there and I could not get out," he said. Carlton said his fellow firefighters had to help him out of his chair. He returned home.

The following day he went to see his family doctor, Dr. David Catron. "He sent me home and we were going to watch it for a few days," said Carlton.

Shortly after that, Carlton visited with his brother one evening. Their backyards adjoin one another.

Carlton said he was unable to even carry barbecued hamburgers from his brother's house to his home. "I started back across the yard and I got half way across the yard, and I froze up. I was going down."

Ike Carlton and his wife, Debbie, came to Mike Carlton's aid. "Ike and Debbie got their arms around me and helped me home.

"I knew something was badly wrong. I thought maybe I had a slipped disk," he said.

But subsequent tests revealed it was multiple myeloma. Carlton said he learned of the test results from Dr. Stanley Sides, a Cape Girardeau physician who specializes in the treatment of cancer.

Carlton subsequently met with Spitzer in early May.

Both Sides and Spitzer recommended a bone marrow transplant.

In mid-June, Blue Cross informed Carlton that such a procedure was not covered by his insurance.

Since then, Carlton and his brother have waged a relentless campaign to get Blue Cross to pay for the treatment. They have enlisted the aid of State Rep. Mary Kasten and U.S. Rep. Bill Emerson's office, as well as the Missouri Department of Insurance.

In late September, Carlton filed a complaint with the Missouri Department of Insurance, asking the department to intervene in his behalf with the insurance company.

Myrita Holtcamp, director of the department's consumer affairs division, said recently the department would look into the matter, but that there was no state law governing such situations.

"We don't have any statutory type of definition," she said, "of what is experimental or investigational" in medical treatment.

Since May, Carlton has been taking low doses of chemotherapy orally, four times a month.

Carlton said he was housebound for a period of time. "I couldn't get out of bed by myself. I slept in a chair for two months."

He went back to work in early July, handling inspections and light duty. "I can't lift anything," he explained. "I can't lift 50 pounds."

The conventional treatment helps keep the cancer in check, but it won't solve the problem, his doctors say.

"What he is taking can't cure his disease," said Sides. With conventional chemotherapy, the average survival time for multiple myeloma patients is four years, he said.

"Only a bone marrow transplant has the potential chance of a cure," the doctor pointed out.

The problem with chemotherapy is that each treatment kills off cells, including good cells. Gradually, the remaining cancer cells resistant to treatment proliferate, explained Sides. He said the time to do the procedure is early on before the build up of such chemotherapy-resistant cells.

As part of the transplant process, high doses of chemotherapy would be used to kill off Carlton's cancerous bone marrow cells.

Then, healthy bone marrow cells from his twin brother would be transplanted into his body, circulating through the blood stream and settling in the bones.

Blue Cross officials have maintained that the procedure is experimental, a risky one with no clear evidence that it would be any more effective than conventional chemotherapy treatment.

"There is no proof that it will improve the odds any better than something else," said Peter Clay, senior vice president of benefit and network management for Blue Cross in St. Louis.

Clay said that killing Carlton's bone marrow prior to the transplant is risky. "Basically you bring the patient right up next to death and then bring him back," he said. People have died from complications resulting from such a procedure, he pointed out.

Andrew Kelahan, senior consultant with the Blue Cross and Blue Shield Association in Chicago, said there are two main risks with bone marrow transplants: the possibility of the patient's body rejecting the donor bone marrow and problems associated with the high levels of chemotherapy used to kill the diseased bone marrow.

The Blue Cross and Blue Shield Association provides guidelines and other informational resources to the nation's 73 Blue Cross companies or plans as they are called.

Deborah Wiethop, a spokesperson for Blue Cross and Blue Shield of Missouri, said the Missouri insurer basically follows the association criteria in deciding if a medical procedure or treatment is investigational.

It's been estimated a bone marrow transplant for Carlton could cost between $150,000 and $300,000.

Wiethop said cost is not the deciding factor for Blue Cross. "It's not so much the expense of these cases. It is that we do not believe they are safe and effective."

But both Sides and Spitzer, a doctor who has been performing bone marrow transplants as treatment for various cancers for two decades, contend that there's a better chance for success in Carlton's case.

That's because the donor bone marrow from his twin brother is a perfect match.

"I think there is such a low risk of graft versus host diseases with identical twins that to do this when you have identical twins should be accepted therapy," insisted Sides.

Spitzer acknowledged there is a risk, particularly from the high doses of chemotherapy used to kill the diseased bone marrow.

"Nothing in medicine is a sure thing, particularly when dealing with a cancer," said Spitzer. "But there is a real chance and Mike understands that."

Spitzer said there have been transplant cases in Seattle involving identical twins, which have proved successful. One such patient has been free of the disease for 12 years and another for eight years, he said.

In non-twin cases involving brothers or sisters donating bone marrow, he said, some patients have been surviving now for five or six years without any recurrence of the disease.

Dr. Randall Treadwell, medical director for Blue Cross of Missouri, said that medical information he has reviewed indicates that the death rate for multiple myeloma patients having bone marrow transplants is around 40 percent.

Still, he said, odds are better for Carlton because of the matching bone marrow and his relatively young age.

Kelahan said, "The level used to treat cancers (in bone marrow transplant cases) is so very high it can cause organ problems, as well as make a patient susceptible to life-threatening infections.

"Toxicity is anywhere from 20 to 50 percent," he said.

But he also acknowledged that in Carlton's case, with a twin brother providing the donor bone marrow, there's a greater chance of success.

Still, Kelahan said, there are only a handful of multiple myeloma cases that have been reported involving twins. At this point, he said, there's just insufficient evidence to make any conclusion about such treatment.