JEFFERSON CITY - Imagine someone grabbing your ankle and twisting it until it snaps.
That's how a doctor described to Therese Senger the hemophilia-induced pain her son was experiencing when he got an ankle bleed five years ago.
Hemophilia is a genetic disorder in which the body cannot produce blood-clotting proteins. Senger's son, Justin -- then 5- or 6-years-old -- has hemophilia and needs to have an injection of Factor VIII, a blood-clotting protein, at least every other day. But, a few times a month Justin bleeds internally and must have more shots.
About five years ago, Senger's insurance company forced her to switch from her existing home health care provider to another. Shortly after switching, Senger's son got a very bad ankle bleed. The nightmare continued after Justin fell and cut the inside of his mouth.
At the time of Justin's ankle bleed, Senger said she only had two doses of the blood clotting product at home.
"I had needed an order within the next couple of days," Senger said. "So (the insurance company) put me in contact with this particular home health care, and they assured me the medicine would go out. Well, it never came."
With no other option, Senger took her son to the hospital, where he spent a week and a half and received two blood transfusions.
Senger said she blames her home health care provider for the amount of pain Justin went through. She said she would like to see his medicine delivered in a more timely fashion.
"The pain that he went through for the amount of time that he went through could have definitely been shortened," Senger said. "If I was able to treat him consecutive days in a row, his pain would have totally been, subsided and the bleed would have probably healed sooner."
It is cases like Justin Senger's that have caused the Missouri Hemophilia Association to call on Rep. Rob Schaaf, R-St. Joseph and a practicing physician, to sponsor a bill laying out hemophilia care regulations for the state's Board of Pharmacy. Over 800 individuals have hemophilia in Missouri.
The bill received no opposition during a public hearing earlier this month. Brent Butler of the Missouri Insurance Coalition attended the hearing, but said the bill doesn't really pertain to insurance companies, but more towards the Board of Pharmacy.
Walgreens-Option Care, the pharmacy responsible for Senger's medicine at the time of her son's incident adheres to standards set forth by the National Hemophilia Foundation Medical and Scientific Advisory Council, said Robert Elfinger, media relations spokesperson for Walgreens-Option Care.