Patient with rare cancer fights his health plan for treatment in Arkansas


Bernard Huddlestun is fighting for his life.

The 49-year-old Glenelg man suffers from multiple myeloma, a rare form of cancer that strikes the bone marrow. Mr. Huddlestun says a bone marrow transplant at the University of Arkansas' Cancer Research Center is his only hope for survival.

But his health care provider, Columbia Medical Plan, will agree to finance the $150,000 operation only if he goes to Johns Hopkins Hospital, its preferred provider.

Mr. Huddlestun says the world renowned hospital isn't good enough because it does not specialize in multiple myeloma.

"They don't offer the best in everything," Mr. Huddlestun said of vTC the Baltimore hospital. "There's got to be something Johns Hopkins Hospital doesn't specialize in."

In April, Mr. Huddlestun filed an appeal with Columbia Medical Plan to have the bone marrow transplant performed at the Arkansas Cancer Research Center, an internationally recognized facility for treating multiple myeloma. A single father of a 9-year-old boy, Mr. Huddlestun says that if he is turned down, he will consider selling his home and cashing in his savings to go to Arkansas for the procedure.

Mr. Huddlestun, who said he meets the initial criterion for a bone marrow transplant at the center, said he is spending $3,000 of his own money for tests to determine whether he qualifies as a full candidate for the transplant.

He plans to fly to Little Rock later this month.

The center's leading specialist, Dr. Bart Barlogie, has performed 200 transplants for multiple myeloma -- the most in the nation, according to the International Myeloma Foundation in Los Angeles.

Of the center's 79 myeloma patients who received bone marrow transplants, only one has died, Mr. Huddlestun said.

Of the 78 survivors, 100 percent experienced partial remission and 60 percent enjoyed complete remission, he said.

Johns Hopkins is just getting started, he said.

"Nobody's referring patients to them, certainly not multiple myeloma patients," said Mr. Huddlestun, whose oncologist recommended the University of Arkansas.

Johns Hopkins has treated about 10 to 12 myeloma patients during the past 10 to 15 years, said Dr. Eric Seifter, co-director of the hospital's Lymphoma Clinic.

Dr. Seifter said multiple myeloma has taken a back seat at Johns Hopkins to other, more common cancers, such as lymphoma.

"It hasn't been a big priority for Johns Hopkins," he said. "At the University of Arkansas, they have made multiple myeloma a priority."

Mr. Huddlestun also criticized the transplant method at Johns Hopkins. He said the one-step procedure, in which the marrow is removed and the patient undergoes intensive chemotherapy, is outdated and dangerous.

"Hopkins' bone marrow transplant is not suitable for me," Mr. Huddlestun said.

Mr. Huddlestun said he prefers the Arkansas center's method, in which doctors perform two transplants on the same patient over three to four months.

Preliminary results show that the process enables doctors to use lower doses of drugs to eliminate cancerous cells, causing less trauma to patients and resulting in better survival rates.

Hospital stays are briefer too, with patients staying an average of three weeks, compared to six to eight weeks at Johns Hopkins.

Dr. Seifter defended Johns Hopkins' program, saying not enough time has passed to determine which method is best.

"This is still evolving," he said. "No one knows the final answer."

Experts say the answer may be known within two or three years.

But Mr. Huddlestun said he can't wait that long.

Life expectancy for multiple myeloma patients is about five years once the cancer develops.

Mr. Huddlestun said he was diagnosed with multiple myeloma in October 1991, six months after visiting the doctor for what he thought was a pulled muscle.

"There's no way to know how long I have to live," he said.

In his appeal, the cabinetmaker argues that he is not receiving satisfactory medical care from the Columbia Medical Plan because he has no access to the best care possible.

"You have a right to expect that what you're getting is on a par with what is generally available, and that the services will fulfill the patient's needs," Mr. Huddlestun said. "I have a rare form of cancer, multiple myeloma, and Hopkins, Columbia Medical Plan's provider, simply does not meet these minimal expectations."

But Columbia Medical officials said they cannot approve the procedure at the Arkansas center because it does not belong to the HMO's network of referral providers.

In a letter dated April 23, the HMO writes: "The Cancer Research Center in Little Rock, Arkansas is not an approved facility within our network for bone marrow transplants. Therefore, we cannot approve the procedure to be performed there. If you meet the necessary criterion to become an accepted candidate for the bone marrow transplant, the Plan approved facility for this procedure is the Johns Hopkins Hospital."

Fran Soistman, director of marketing for Columbia Medical Plan, said appeals such as Mr. Huddlestun's, are rare.

"It's a very low number because most people understand that when they join Columbia Medical Plan, they must select those physicians that participate," Mr. Soistman said.

He said the most common appeals involve patients who use emergency room services at nonapproved facilities rather than the urgent care centers provided by Columbia Medical Plan.

The HMO uses Johns Hopkins for its specialty care.

"Columbia Medical Plan has an excellent relationship with Johns Hopkins," Mr. Soistman said. "Johns Hopkins' reputation speaks for itself with expertise in many areas."

Although the HMO has rejected Mr. Huddlestun's appeal, Mr. Soistman said things could change.

"If conditions change, or merit change, the appeal could be reversed," he said.

Meanwhile, Mr. Huddlestun said he plans to take his case to the state insurance commissioner, in the hope of forcing the HMO to send him to the Arkansas center.

He said he is also thinking of hiring an attorney who specializes in health insurance.

"I'm trying to take it day by day," Mr. Huddlestun said.

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