Health insurance companies deem treatment of extracting cells from her own bone marrow to treat scleroderma “‘experimental’
Devona Coulson needs a back-up plan, in case her insurance company declines to pay for the procedure that could save her life.
When Coulson was diagnosed with diffused scleroderma with lung involvement in June 2004, the then 29-year-old’s universe turned upside down. Now, an autologous stem cell transplant, taken from her own bone marrow, might be her only chance to reduce the effects the disease has on her life.
“It changed my whole world,” said Coulson, now 31. “It’s not easy to swallow, to know you have to face this.”
According to the Scleroderma Foundation, the disease’s name comes from the Greek words “sclero” meaning hard and “derma” meaning skin. This hardening of the skin is one of the most visible symptoms of the disease. It is a chronic connective tissue disease, according to the foundation, and lung involvement often leads to decreased breathing capacities.
Stem cell transplants are increasingly being used to treat the disease.
“I try to keep her very positive about things,” said Coulson’s mother, Brenda Beck of Waxahachie. “I said, pray to God that if the stem cell transplant is meant to be, it will happen. And it did.”
“God has gotten me through this,” said Coulson. “Yes, my family and friends are great, but without God, I would not have made it this far. All miracles come from prayers and I am a firm believer in that.”
Currently, 150,000 to 300,000 Americans live with scleroderma, according to officials at Northwestern Memorial Hospital, where Coulson will receive her treatment. Of those cases, 80 percent are women between the ages 30 and 50. There is no cure for the scleroderma, and it can be fatal.
“Nothing’s really helped,” said Coulson, who currently injects her own medicine weekly.
Although there isn’t a cure for scleroderma, treatments do exist. Coulson has undergone extensive chemotherapy treatment, which has caused hair loss and other uncomfortable symptoms. To date, autologous stem cell transplants, which also use heavy doses of chemotherapy, have been effective at treating the condition, according to the Northwestern Medical Faculty Foundation.
“Although it’s not a cure, it could put me into remission,” Coulson said.
Coulson learned that out of 14 people who received the treatment in a previous study, two died. She said that one of those deaths occurred before the patient had received a stem cell transplant, and the other happened after the procedure due to complications from the disease.
Coulson said she may spend up to 40 days in the hospital after the procedure.
“Although stem cell transplantation poses some real risks, the patients show remarkable improvements, and we perform the transplant in a manner that is much safer and quite different from the stem cell transplants used for cancers or leukemias,” said Dr. Richard Burt, chief of the Division of Immunotherapy at Northwestern University’s Feinberg School of Medicine.
Now, Coulson must raise $90,000 in advance to get the cutting-edge surgery.
Her mother keeps hoping the insurance company will help with the cost. But because the insurance company deems the procedure “experimental,” Beck doesn’t expect much help.
“I hope one day they’ll realize how stem cell transplantation can work to save people’s lives,” Beck said.
Not only does the disease hinder Coulson’s breathing capacity, which Beck said is at 54-59 percent based on the most recent tests, but it is also causing an uncomfortable condition called Raynaud’s Phenomenon. Blood stops circulating to the feet, causing them to turn blue or black, according to the Scleroderma Foundation.
“Initially, it was a pretty big shock, because she was so young,” said Angelique Deyette, Coulson’s partner of almost three years.
Coulson met Deyette online before she was diagnosed with scleroderma. In October 2004, just four months after her diagnosis, she stopped working because her work place was dusty and put her at risk for tuberculosis, Coulson said.
Although legalities prevent Coulson from disclosing the exact factors that led to her condition, she did say that doctors identified “environmental causes.”
She moved to Waco to live with Deyette and her 13-year-old son, Dominic, in December 2004.
“After the first time we met, it just seemed like we were supposed to be together,” said Deyette. “I’ve done all that I could for her, emotionally and physically. It’s been stressful for both of us.”
Deyette said that after a long battle, Coulson is now receiving workers’ compensation benefits. Coulson does not want to get on disability, though, because she wants to go back to work again and have a normal life, Deyette said.
In the meantime, Coulson said that she spends most of her time taking care of the home.
“Fatigue is a big part of my disease,” she said. “I read and research a lot, and try to figure out how I can help other people.”
Although the couple has some financial support from Coulson’s family for her procedure, they are trying to raise as much money as possible on their own. Recently, Ciao Bella performed at a benefit arranged by a friend, Elena Guilbeau, for Coulson, raising $4,000 toward their cause.
The couple has also toyed with ideas such as raffles, garage sales and basket auctions.
“Every little bit helps,” said Coulson.
Beck said Coulson is determined to overcome the disease.
“It’s been a hard road,” said Beck. “I try to be strong for her, so she can continue on. She’s a fighter.”
If anyone wishes to contribute, donations can be sent to Citizens National Bank, P.O. Box 717, Waxahachie, TX 75168. Make checks payable to “Benefit Account for Devona Coulson.”
Donations can also be made online at www.transplantfund.org. On the left side of the page, type “Coulson” in the Patient’s Last Name box, and her profile will come up with a button for contributions.
For information about scleroderma visit www.scleroderma.org.
This article appeared in the Dallas Voice print edition, December 22, 2006.