Tuesday, March 25, 2014
Imagine having a disease since birth that makes your bones brittle and causes you to be in constant pain.
Now imagine finding love and getting married only to find out that you have been dropped from Medicaid because you are married.
That is what Michelle Tilton of Andrews is facing.
Not only that, but her husband, Harold, is disabled and their daughter, Brooke, has the same disorder as Michelle — osteogenesis imperfecta, also known as brittle bone disease.
“It seems like every time I turn around I need to go to the doctor and now I can't because I don't have insurance,” Michelle Tilton said. “It is just wrong.”
She said she knows other women who have kept their maiden names and did not report being married to stay on Medicaid.
“I want to be honest,” she said. “Why should I have to lie to keep my Medicaid?”
She said Medicaid officials told her that she could get back on Medicaid if she got a divorce, but she doesn't want to do that either.
“I found love and I am trying to live a normal life,” Tilton said.
“We shouldn't have to be separated just to get insurance.”
Harold Tilton, a veteran who worked at the steel mill in Georgetown for 24 years before hurting his back, receives $1,750 per month from Social Security.
But he spends about $500 per month for his and Michelle's pain medicine, in addition to house payment, utilities, food, gas and other expenses and debts.
To complicate matters, in addition to Brooke, they are supporting Harold's daughter, her husband and thierhdaughter, who is 2 years old. They also have a baby on the way.
He said that the Affordable Healthcare Act has not helped them because the rates are about $900 per month.
“There is no way we can afford that,” Harold Tilton said.
He said when Michelle has a problem, they have to go to the emergency room at the hospital.
Recently, they did just that after Michelle broke bones in both of her legs on a door jam, she said.
About the disease
According to www.healthline.com, brittle bone disease is a congenital disorder that results in fragile bones that break easily. When it occurs, it is present at birth, but only in babies who have a family history of the disease.
Osteogenesis imperfecta means “imperfectly formed bone.”
The disease can range from mild to severe.
Severe forms of the disease can cause hearing loss, respiratory or heart failure, spinal cord and brain stem problems, and permanent deformities.
In some forms, the disease is fatal to babies either before, or shortly after birth.
About three people in 50,000 are born with brittle bone disease, according to the National Human Genome Research Institute. It occurs equally among each sex and race.