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Little help for Johnstown 6-month-old with rare, costly condition
Public health agencies balk at marrow transplant price
JOHNSTOWN — Jackson Baldwin of Johnstown can’t eat, sleep or even blink without feeling constant pain or having his skin blister up and bleed.
He takes 20 different medications a day, including five pain killers in addition to liquid morphine. He has to wear thick gauze bandages over most of his body, both to protect his fragile skin and to keep his fingers from fusing together.
He has never eaten solid food, because its texture could kill him. And his mother lives in fear of the day when he takes his first step or crawls.
Jackson is 6 months old and suffers from a rare skin disease called epidermolysis bullosa. His mother, Jessica Valik, 22, said unless he receives an experimental bone marrow transplant in Minnesota, he could die.
“The procedure will improve Jackson’s condition 80 percent,” she said. The problem is that New York’s Medicaid system, which must approve the surgery, does not want to pay for the procedure, Valik said.
Brett Koplan, executive director of the Dystrophic Epidermolysis Bullosa Research Association — or Debra of America — said he knows of only two cases in the United States where Medicaid paid for the bone marrow transplant. “I know New York Medicaid will not pay for it.”
Valik said the procedure costs approximately $1.5 million, and if Medicaid won’t pay for it she will have to raise the money herself. She has two websites, savejaxnow.com (click HERE) and helpjackson.org (click HERE), seeking help and so far has raised $20,000 to help her only child.
“It’s all about making a case for Medicaid,” she said. “He is my whole world. It is all about Jackson.”
Valik is a single mother who does not work because she has to care for Jackson constantly. “I get frustrated with the disease. I hate the disease. To see him in pain and not be able to comfort him is terrible. I would love nothing more than to pick him up and squeeze him,” she said.
But she can’t. Doing so would hurt him.
She and Jackson are on Medicaid, and Jackson receives SSI. Medicaid will not pay for home health aides, Valik said, because Jackson’s condition is beyond the scope of their training. Local hospitals refuse to treat Jackson, even in an emergency, saying the child should go to Albany Medical Center because of his condition.
“It breaks my heart they won’t treat him or even provide him with antibiotics,” she said.
Valik said she spent months trying to get help from the state Department of Health, but only got static. She finally got a call back from the DOH office that reviews Medicaid requests after U.S. Sen. Charles Schumer and U.S. Rep. Paul Tonko intervened. Both elected officials said they want to ensure Medicaid pays attention to Jackson’s case, although they admit they are powerless to require New York to pay for the procedure.
DOH spokesman Michael Moran said the “department is aware of the situation and has been in contact with the family and with the hospital in Minnesota, and the process of reviewing the claim has begun.”
It’s only a glimmer of hope, but it’s more than Valik has had.
Schumer spokesman Matt House said, “We will do everything we can to help the Baldwin family navigate health insurance hurdles to provide the best care available for Jackson.”
Valik said she is coping with the cost of treating Jackson’s illness through donations from Debra of America, which provides her medications and some bandages, as Medicaid does not cover all her prescription drug costs. Bandages, she said, cost approximately $3,000 a month and are mostly covered by Medicaid. The bandages have to be changed every day.
Valik suspected Jackson had a serious medical condition the day he was born.
At birth he had skin missing from around his mouth and from around most his fingers and heels. The next day, doctors confirmed he had epidermolysis bullosa and later genetic testing confirmed he has the recessive dystropic strain.
“Most children with the disease do not live beyond their childhood,” Valik said.
Koplan said the University of Minnesota Amplatz’s Children Hospital is the only hospital in the United States that performs the bone marrow procedure. The procedure is expensive because of the drugs the patient has to take and the level of care the patient receives.
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