UMass student fights for treatment for autoimmune disease
University of Massachusetts student Hannah Coler is currently fighting diffuse scleroderma, an autoimmune disease, as well as her insurance company, which is refusing to pay for her potentially life-saving treatment.
In November, 2007, Coler went to the doctor because her hands and feet would lose color in the cold weather. She was told she could have Raynaud’s disease, a disorder that restricts blood flow to the extremities such as fingers, toes, nose, and ears. Later that year she returned to the doctor with hardening skin on her fingers and arms. After switching doctors in January, 2009, her doctor ordered a blood test.
The results of Coler’s blood test were positive for autoantibodies, which, combined with the thickening of her skin caused Coler’s doctor to recommend she visit a specialist. The Coler’s drove out to see Dr. Lee Shapiro, a rheumatologist in Albany, NY, who confirmed the diagnosis.
Hannah said the diagnosis was not initially alarming, as she really did not understand the ramifications of the disease. “When my doctor told me that I had scleroderma it didn’t really affect me because I didn’t really understand what that meant,” she said. “When I went to see Dr. Shapiro in Albany and he explained what having this disease meant it really hit me,” she explained.
Due to her disease, Coler experiences chronic fatigue and joint pain, especially in her knees, and has difficulty standing up from seated positions, in addition to experiencing pain walking up stairs. Due to the hardening of her hands and arms, Coler can have difficulty writing at times. Because the disease has started to affect her lungs, Hannah is trying to avoid catching any viral diseases, such as the H1N1 this flu season, as the virus would affect her worse than most.
There are two treatments for diffuse scleroderma; patients can either take highly concentrated doses of the chemotherapy drug Cytoxan or participate in the Scleroderma: Cyclophosphamide or Transplantation, otherwise known as SCOT, trial. Hannah’s father, Andrew Coler said that the extent of Hannah’s condition mandates that she join the SCOT trial.
“Because the progression of her scleroderma has been so rapid, there is only one option, the SCOT trial,” he said. “That is the only treatment that has been proven and known to be effective,” he emphasized.
Though there are side effects to the treatment, the family firmly believes that this is the best option despite the risk.
The Coler’s insurance, UniCare, however, does not see the SCOT trial as the best option. Despite recommendations from Dr. Shapiro, Dr. Karen Ballen of Massachusetts General Hospital and Dr. Robert Simms of the Boston University School of Medicine, appeals for coverage have been denied three times. In the three letters Hannah has received from UniCare, the SCOT trial is called an “Experimental or Investigational Procedure,” and deemed “inadequate or lacking in evidence as to its effectiveness.”
Rather, UniCare is offering to pay for the chemotherapy drug, a medical option that the family isn’t sure will be effective against Hannah’s rapidly progressing fibrosis. If she partook in chemotherapy, it would not be easy to transition into the SCOT trial, the Colers said.
The insurance company’s reasoning angers Hannah’s family, who have been in contact with others suffering from diffuse scleroderma and found the treatment to be the best option. The Colers have been in close contact with David Becker, an attorney from Bradenton, Fla., who underwent the SCOT treatment three years ago. Andrew Coler said that Becker has become a prominent figure in the fight for insurance coverage, writing letters to different peoples’ insurance companies. Often times, Becker’s petitions bring results, even full coverage, yet for Hannah it brought only another rejection letter.
Less than a year ago Hannah would have been covered by her insurance, but her family switched their coverage so that they could see doctors outside their primary care physician more easily. Switching from Heath New England, an HMO insurance company that would have covered the SCOT trial, is one of Andrew Coler’s biggest regrets.
“After we had to pay a large fee to see the specialist in Albany, I thought it was a smart decision to switch to a plan that allows Hannah to see doctors outside of the network,” he said, “I was wrong.”
Though she was set to graduate this spring as Biology major on the pre-med track, Hannah has only been able to take six credits this fall due to her fatigue and constant scheduled doctors appointments. She hopes to graduate in the spring of 2011 and go on to become a doctor.
Hannah said the hardest part of her ordeal has been changes in her social life.
“I would say partly friends, and also dealing with my parents,” she said. “I can deal with it okay, I don’t feel that sick, I just feel uncomfortable at times, but my parents are having a hard time coping with this,” she explained.
Andrew Coler voiced his fears. “I’m terrified, I fear for my daughter’s life,” he said. “It has really put a toll on us,” he related.
Because of her experiences with this disease, Hannah has lost friends, and, partly, the social experience of college. She said that the experience has in effect separated out those who care about her from those who do not.
“When you go through a situation like this, you realize who your real friends are, and that was one of the really tough parts of dealing with the disease, a lot of my friends, well I guess I wouldn’t really consider them friends anymore, weren’t there for me,” she said. “There were a couple of people that were really nice, and I learned that those are my true friends,” she elaborated.
Despite the cost, Andrew Coler explained that the family needs to go through with the trial before her condition deteriorates further, and she may no longer be eligible by the time she could participate. The family plans to begin the trial either this month or in January at the latest.
To pay for the $280,000 trial, he explained the family may have to make some major sacrifices.
“We may need to sell the house, take out loans,” he said. “We’ll pretty much do whatever it takes to allow Hannah to get the treatment she needs,” Coler stated.
Andrew has founded the “Help Hannah Coler Medical Fund” at Bank of America. People have contributed monetary donations ranging from $14 to over a $1000. Currently, the fund has raised over $5,000, which the family plans to use towards Hannah’s treatment, or if ultimately unneeded, to donate to other patients or research for diffuse scleroderma, the cause of which is unknown.
After hearing of Hannah’s condition through local news outlets, community members have reached out to help in more ways than just financially. An attorney in Northampton offered free legal services to the family, as they pursue litigation against their insurance company UniCare.
Hannah said friends from high school who she probably wouldn’t have talked to otherwise have contacted her to see how she is.
“We are really grateful to everyone that has reached out to us, because every little bit adds up and with their help we’re going to beat this.”
Michelle Williams can be reached at firstname.lastname@example.org.