Hemophilia of South Carolina thanks all who participated in this years Legislative Hemophilia Awareness Days during March, the National Hemophilia Awareness month. Here is a glimpse of what we can accomplished when we work together to raise awareness! Thank you everyone! Sue Martin/President, HSC Bipartisan Advocacy helps in Awareness of Hemophilia and Rare Bleeding Disorders in South Carolina By: Connie Montgomery Graham On Wednesday March 05, 2014, my family attended Hemophilia of South Carolina’s Advocacy Awareness Days at the State Capitol. We visited the State House where our Senators and House of Representative members work to make laws that directly impact the citizens of South Carolina. We walked from building to building, encouraging members on both sides of the aisle to remember individuals affected by hemophilia and rare bleeding disorders when making budget and healthcare laws that impact families like mine. We know firsthand, it does not matter whether you are black, white, Republican, Democrat, rich or poor when life-threatening, health issues arise, everyone wants the best care they can receive immediately for themselves or their loved ones. Secondly, we know most people would want their care to be as cost effective as they can obtain it. With these factors in mind, I shared my families’ personal story and how we came to terms with the fact that we have such a devastating illness to live within our immediate family. I am Factor Seven (FVII) deficient along with my son whom is a 20 year old college student. Thus, we are all compassionate about educating the public about hemophilia and rare bleeding disorders. Our blood does not clot the way it should due to the lack of factor seven. We have been trained to care for ourselves in certain crisis, using self-infusion techniques which provide the factor that our bodies do not make enough of on their own. Annually, it can cost anywhere between $100,000 to $300,000 to care for just one individual affected by hemophilia and/or a rare bleeding disorder. At the State House, we shared information about the importance of continuing to support our only federally-funded Hemophilia Treatment Center (HTC) in South Carolina at the Palmetto Health Richland Hospital in Columbia. The HTC offers multi-disciplinary, family centered healthcare with staff that includes many experts and a wealth of resources. Also, we stressed to legislators the importance of maintaining funding for the Hemophilia Assistance Program at the South Carolina Department of Health and Environmental Control (DHEC) agency. This program is critical for people who have nowhere else to turn for care because it is available at no cost to hemophilia patients that meet the requirements. Lastly, we shared the importance of continued funding for the South Carolina Bleeding Disorders Premium Assistance program. Since its inception in 2007 the program has assisted 25 patients and has saved the state of SC over $8.9 million in clotting factor costs alone. This program is vital to assist the uninsured and underinsured patients with bleeding disorders by providing health insurance case management and subsidizing insurance premiums. By obtaining insurance coverage, the patient gains access to comprehensive care and SC receives significant cost avoidance because patients rely less on public programs like Medicaid. Senator Raymond Cleary and Senator Yancey McGill listened tentatively about our experiences and concerns. Also, they both encouraged us to continue sharing our story. Senator McGill suggested we meet with available hospital staff in his districts as well to share what we have encountered and learned with people statewide. Then I spent a few moments with Representative Bakari T. Sellers and he shared what he remembered about our group visiting the grounds from the previous years and said he remembered us. The Chapter purchased commemoratory t-shirts for everyone involved in this year’s event and also packaged them for each meeting visit to present as a thank-you gift with their leave behind folders. Chris Murphy joined us in a walk to the House floor balcony graciously. Representative Stephen Goldfinch introduced my husband and I on the House floor and told why we were visiting the State House. The chapter was also recognized by House Representative Tommy Stringer. Regardless of party association, they all listened and gave their input. Mr. Tommy Stringer could totally empathize with us because his family is affected by hemophilia. He conveyed the fact that he and his family understands what we advocate for. I could not have said it any better, “It is personal” he stated at the Chapter’s dinner training the night before our meetings. Infusions are a part of Representative Stringer’s daily living with his 8 years old son therefore he understands the need for expensive factor products and services for the bleeding disorders community. Life and your quality of life matters greatly regardless of your chronic illness or condition; therefore, as members of the bleeding disorders community in South Carolina we must rise up to keep our collective voices heard from the grass root level of our State House to the nation’s capital in Washington, DC. As our National Hemophilia Foundation motto states; “Nothing about us, without us”. Join us next year and come out to have your voice included. We will certainly continue to accomplish more as a team for such a worthy cause! Our 2014 T-shirt: The roots of our future, our joints, limbs, and lives depend on access to care today, achieving cures tomorrow! On the back; Nothing about us, without us!
Posted on: Fri, 14 Mar 2014 11:15:00 +0000
Trending Topics
Recently Viewed Topics
© 2015