Rep. Sweeney's bipartisan legislation to raise awareness for bleeding disorders heard before Senate Health Committee

State Rep. Bride Rose Sweeney (D-Cleveland) today testified on House Bill 185, her bipartisan legislation to designate the month of March as Bleeding Disorders Awareness Month. The bill was originally brought forward by former Rep. Randi Clites in the 133rd General Assembly, when it passed the House unanimously 95-0 as an amendment. It recently passed again as its own bill by an even stronger vote, 97-0.

“It’s an honor to help amplify the voice of the bleeding disorder community as they continue to fight for increased awareness, lower healthcare costs, and improved quality of care,” said Rep. Sweeney. “Bleeding disorders have painful and costly effects on those who live with them every day of their lives. They can occur in anyone and can take years to accurately diagnose. Raising awareness is an important step toward better and more affordable treatments.”

Bleeding disorders are a group of conditions that result when the blood cannot clot properly. The two main types of bleeding disorders are Hemophilia and von Willebrand Disease (vWd). Hemophilia affects about 1,200 patients in Ohio, which is in the top three largest state populations in the country. There are approximately 1,500 vWd patients treated in Ohio, although it is estimated to affect 1% of the population. It can take up to 16 years to get an accurate diagnosis. 

“The bleeding disorders community is a small but mighty advocacy force. When my son was born with hemophilia with no family history, I learned very quickly how the community rallies around its own,” said Randi Clites, the Program Manager at the Northern Ohio Hemophilia Foundation, which is located in Rep. Sweeney’s district. “It has been an honor to serve in both roles as an advocate and a former State Representative to raise awareness for bleeding disorders. Thank you to Rep. Sweeney for carrying on this important legislation.”

There are dramatically higher rates of bleeding disorders in Ohio than in most other states due to their prevalence in the Amish community. Outside of the physical and emotional toll taken by bleeding disorders, there are also major financial burdens. Express Scripts estimates the average annual cost per patient with hemophilia at over $270,000.

HB 185 awaits further consideration before the Ohio Senate.