Amherst woman battles insurance company for $300,000 treatment that may keep her alive and well

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KATHLEEN DUNCAN

Hannah Coler and her father Andrew Coler speak about the refusal of their insurance company to cover a treatment that could potentially save Hannah's life.

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KATHLEEN DUNCAN

Hannah Coler, of Amherst, at left, sits at her Amherst home Friday with the rejection letters she has received from UniCare and the state's Group Insurance Commission. Coler has diffuse scleroderma, a rare autoimmune disease. She is pictured above with her father, Andrew Coler.

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KATHLEEN DUNCAN

Hannah Coler sits at her Amherst home Friday with the rejection letters she has received from UniCare and the state's Group Insurance Commission. Coler has diffuse scleroderma, a rare autoimmune disease that can be fatal within five years of the diagnosis. Coler wants to participate in the SCOT study, a treatment that has saved others with her disease but her insurance company is refusing to cover it. If she has to pay it out of pocket, it could cost more than $300,000.

AMHERST - As 21-year-old Hannah Coler battles a potentially deadly autoimmune disease, her parents are fighting their insurance company for coverage of the more than $300,000 procedure that doctors say will most likely save her.

Coler, of Amherst, has diffuse scleroderma, an illness that first hardens the skin and then the internal organs. Her insurer, UniCare, won't cover the costs of the treatment she's seeking, because the company considers it to be an experimental and investigative procedure.

This decision, which the family appealed to, and was denied by, the state's Group Insurance Commission, has caused frustration for the Colers.

"It's been an emotional rollercoaster," said Andrew Coler, Hannah's father. "How can you put a price tag on a 21-year-old?"

The denial of coverage has come despite recommendations from Dr. Robert Simms at the Boston University School of Medicine and Dr. Karen Ballen at Massachusetts General Hospital that Hannah Coler participate in the Scleroderma: Cyclophosphamide or Transplantation, or SCOT, trial.

"They agreed that the disease was serious in my case, and was progressing rapidly, and that would be the best course of treatment," Hannah Coler said.

With diffuse scleroderma, there is a 50 percent chance the disease could prove fatal to her over the next five years, she said.

The SCOT trial patients take one of two treatment routes: either high doses of the chemotherapy drug Cytoxan or a stem cell transplant. The trial compares the results of the two for mortality and organ damage.

UniCare officials, in three separate letters, wrote that the SCOT trial is not a covered benefit under the insurance plan Andrew Coler has through his position as a child care professional at the University of Massachusetts. Ming Coler, Hannah's mother, works for Publishers Circulation Fulfillment Inc., which distributes Gazette newspapers.

The insurance company considers the SCOT trial experimental, says it's not medically necessary, and maintains that it lacks evidence of effectiveness. The Colers received a denial letter from UniCare stating, in part, "The fact that a physician ordered it or that this treatment has been tried after others have failed does not make it medically necessary."

Tony Felts, a spokesman for UniCare, said health plans often contain exclusions for coverage pertaining to medical trials.

"A lot of this is UniCare basically administering the rules based on our customer, in this case the Group Insurance Commission," Felts said.

The GIC's appeals committee supported UniCare's denial.

GIC Executive Director Dolores Mitchell wrote, in a Nov. 12 letter, "I regret that the appeals committee decision could not be more favorable to you and Ms. Coler, but the language provided on the SCOT trials Web site establishes that this trial is investigational and that the treatments provided are not standard medical treatment for systemic scleroderma."

Andrew Coler disagrees. "The SCOT study is the only proven, and most effective, treatment," Coler said. "It's got a very good track record, and it's documented that people have made a full recovery."

One man who has made such a recovery is David Becker, an attorney in Bradenton, Fla., who has been consulting with the Colers. He strongly opposes the assessment the insurance provider has made.

"I think it's horrible," Becker said. "I think they should be providing coverage because this is medically necessary and potentially life changing."

Becker received a stem cell transplant three years ago.

"When they say it's experimental and investigational, I'm exhibit A that that's not the case," Becker said.

Mitchell, of the Group Insurance Commission, reached Tuesday in Boston, said she could not elaborate on the appeals committee's action because of federal regulations protecting the privacy of individual health information.

Diagnosis

The youngest of four children, Hannah Coler is a 2006 graduate of Amherst Regional High School who is now pursuing a degree in biology at UMass.

She first noticed symptoms of scleroderma two years ago, when her hands and feet would turn white in the cold. When she consulted her physician, it was thought that it might be Raynaud's disease, a vascular disorder that restricts blood to the extremities.

It wasn't until October 2008, when Coler's skin began to harden, especially on her hands and forearms, that her physician thought her illness might be more serious.

She went to rheumatologist Dr. Lee Shapiro in Albany, N.Y., who confirmed in April that she was suffering from scleroderma. In the summer the disease was determined to be diffuse scleroderma, which progresses rapidly, begins to affect organs at some point, and is more serious than limited scleroderma.

So far, the most noticeable change for Hannah has been the discomfort the disease causes. She has some joint pain and difficulty getting up, especially when sitting in low places, because of the tightening of her skin.

A violinist, she said she was surprised recently when she picked up the instrument and found it challenging to play because of her illness.

The scleroderma has also begun to spread to her lungs, which might be one reason she feels more fatigued.

"I'm much more tired than I used to be," Coler said.

Andrew Coler switched from Blue Cross Blue Shield to UniCare to allow the family to see doctors outside of network. Unfortunately, many providers, including Blue Cross Blue Shield, Cignet and Uniform Medical, have provided coverage for the SCOT trial.

"It's been really frustrating," Andrew Coler said. "Every night I'm trying to type and get publicity."

Becker had his procedure done at Duke University, and it was covered entirely.

Felts, though, said the issues for a health benefits company are more complicated, noting in an email that many new technologies are introduced that have not yet proven effective.

"The responsibility for who pays for clinical trials is a topic of much discussion," Felts said. "With increasing pressure on employers to manage health care costs, a fair approach would be for providers and research organizations to share in the cost of clinical trials."

Moving forward

Though insurance will cover conventional chemotherapy, which uses low doses of Cytoxan, this is a problematic route for the family to take, for several reasons.

"It's just not that clear if it's that beneficial," Hannah Coler said.

And should she start on this treatment, she would not be able to easily transition to the SCOT test.

Further, if her condition deteriorates, she wouldn't qualify for the SCOT study.

She is not undergoing any treatment for her illness just now, but in August she took an immunosuppressant for six weeks. Each time she goes to Massachusetts General Hospital, she has lung and heart tests.

The family would like to get treatments started in December or January at the latest.

"She's at a stage where we hoped she could begin treatment," Andrew Coler said.

Andrew Coler said the family may try to pay on its own, but the treatment is so expensive that it would appear to be unaffordable for them. They could pursue litigation against UniCare, if a suit can move quickly.

"We want to get Hannah the best health care," he said. "Our feeling is if nothing else is done, we have to begin treatment."

The family has established the "Help Hannah Coler Medical Fund" at Bank of America. If the money is not needed for her treatments, it will be donated to other patients in need, they said.