HSC’s Bleeding Disorders Legislative Awareness Days
March 1-2, 2016
South Carolina State Capitol, Columbia, SC
By Suzanne Martin, Executive Director of HSC
The 7th annual hemophilia and bleeding disorders legislative awareness days will be held in Columbia by Hemophilia of South Carolina (HSC) (www.hemophiliasc.org) and its advocacy team members. The purpose: to raise awareness and educate elected officials in Columbia on bleeding disorders; the impact having one can have on families; and the struggles some still face with access to comprehensive treatment care and services in South Carolina.
March 1, 2016 marks the first day of the first National Bleeding Disorders Awareness Month which was announced by the US Department of Health and Human Services (HHS) for inclusion on its National Health Observances calendar beginning this year. This special month will foster a stronger sense of unity and shared purpose among individuals in this community with all inheritable bleeding disorders, and elevate awareness and engagement in their journey beyond the community. Hemophilia of South Carolina congratulates the National Hemophilia Foundation (NHF) (www.hemophilia.org) for their achievement as this formalizes and expands upon the designation 30 years ago of March 1986, as “Hemophilia Awareness Month” by President Ronald Reagan.
Backed on the heels of the National Hemophilia Foundation’s Washington Days which concluded this past Friday and was attended by 380 members representing 45 states across the nation, including HSC, the South Carolina state advocacy day will continue the message of advocacy for access to care. Nationally, participants requested to maintain funding for Hemophilia Treatment Centers (HTC) and the Centers for Disease Control (CDC) programs supporting HTC services, blood safety and surveillance, inhibitor prevention and research for better treatments and a cure as these were critical components of the Washington Days agenda.
Also, on the national agenda, was the seeking of Co-sponsors for HR 3742, The Access to Marketplace Insurance Act, which would require health insurance companies to accept third party premium assistance payments from qualified nonprofits. This is of great importance to HSC. This assistance is in jeopardy for individuals who are enrolled in qualified health plans (QHPs) offered on the health insurance Marketplaces, since CMS guidance gives plans discretion on whether to accept payments from other third-party assistance organizations. South Carolina is among 37 states which has been impacted and received notice that the states market place insurance company, Blue Cross/Blue Shield, no longer will accept insurance premium assistance for patients with chronic and rare disorders such as hemophilia and bleeding disorders.
Patient Services Incorporated, (PSI) (www.patientservicesinc.org) is a national not for profit organization that assists patients with rare, expensive conditions access to treatments and therapies. PSI raises primarily private donations to provide health insurance premium assistance; pharmacy and treatment copayment and coinsurance assistance, and Medicare out of pocket expenses. In 2015, PSI assisted 935 patients with chronic and rare diseases in South Carolina.
PSI receives funding through the South Carolina Department of Health and Environmental Control to provide health insurance premium assistance to patients in the South Carolina bleeding disorder community. The program assists uninsured and underinsured South Carolinians with bleeding disorders by providing health insurance case management and subsidizing insurance premiums. This allows patients to obtain and maintain comprehensive medical care while reducing the reliance on public assistance programs. The Chapter has advocated to our US Congressmen on three separate trips to Washington asking for their support in Co-sponsoring HR3742. Congressman Kevin Cramer (R-ND) introduced legislation last November that would require insurers participating in Affordable Care Act (ACA) Marketplaces to accept premium assistance provided by qualified non-profit charitable organizations.
On Tuesday evening, individuals of the South Carolina bleeding disorder community will come together for an informal dinner workshop where they will hear from several speakers throughout the nation versed in advocacy assistance for bleeding disorders. They will discuss the concerns of this community, nationally, and here in South Carolina with the hope to gain insight and learn what they can do to advocate for their personal needs and for the community at large. For some, this will be their first time in advocacy training.
Being affected by a very rare, lifelong chronic condition can be very difficult. Where most medical professionals received only a paragraph in medical school on hemophilia, it can be difficult accessing care for their needs, not to mention the high cost in treatment.
Starting the night off with presentations and discussions will be the Chapters longtime advocate and friend, SC House Representative, Mr. Tommy Stringer of Greer. Tommy has fought for the needs of this community as he understands the impact it has on families, he himself being affected with the birth of his son, now 10 years old.
Jessica Drennan, MSW, the Director of Children with Special Health Care Needs in the Department of Health and Environment Control (DHEC) will provide updates to the participants on the Hemophilia Assistance Program which is a state-funded program for the purchase of blood products for persons with hemophilia or other congenital blood clotting disorders.
Training for adults and teens for the following day meetings with their elected officials will be provided by the Chapters advocacy day non-profit teaming partners, PSI and Hemophilia Federation of America (HFA) (www.hemophiliafed.org). James Romano, MPA, MBA, Director of Government Relations and Advocacy and Kelly Fitzgerald, Assistant Director with PSI have been assisting the chapter for the past seven years helping assure the South Carolina Premium Assistance Program remains funded.
Members of HSC will head to the State Capitol early the following day and participate in close to 40 individuals meetings, enlightening House and Senate officials in bleeding disorder awareness and asking for their support in partnership of this year’s talking points. They also will be asking elected officials to take the Red Tie Challenge to support the new national awareness initiative. (www.redtiechallenge.org). The advocacy participants will be wearing Red Ties for the day and providing one for each meeting in support of Bleeding Disorders Awareness Month. Over the past seven years, the Chapter has participated in over 150 meetings with the South Carolina House and Senate.