Advocacy / State Capitol Days
State Capitol Legislative Days: February 28, 2018 with evening training on February 27, 2018
This year, HSC is holding its Advocacy Days event on Rare Disease Day, February 28th. This years event will also be on the eve of the National Bleeding Disorders Awareness month of March. HSC and our national partners will host a dinner evening training on the 27th and our legislative day on the 28th, with the mission to raise awareness of bleeding disorders. This event also includes educational discussions with state officials on the effects living with the diagnosis can have on families. We have key advocacy needs we address as we ask for support. Since our State Capitol days have begun, HSC has had over 250 individual meetings with the Senators and House Representatives from districts throughout the state. These meetings are of key importance in helping our elected officials understand our community needs and asking for support of state programs that directly provide a safety net for those in need.
Advocacy training is provided in partnership with our national organizations; The National Hemophilia Foundation, Hemophilia Federation of America and Patients Services Inc., and other local and national advocacy consumer partners. Training begins on Tuesday night with meetings held on Wednesday morning. All training, lodging and meals are included for registered participants. The evening training is held each year at the Courtyard Marriott Downtown at USC, Columbia. We walk and drive to the Capitol in the morning for meetings as a group. Shuttle service is provided for those who are unable to walk to the Capitol.
2018 Advocacy Day Talking Points:
Maintain support for programs in South Carolina that provide access to care and treatment with the full range of products and services needed by people with bleeding disorders
Maintain funding for the Hemophilia Assistance Program (HAP) to assist uninsured individual with hemophilia and von Willebrand Disease
- The South Carolina Hemophilia Assistance Program (HAP) is a state-funded program provided by the Department of Health and Environmental Control (DHEC). It was established to assist state residents with hemophilia and von Willebrand disease (vWD) who lack access to health insurance by offering insurance case management and financial assistance for private health insurance costs, as well as co-payment assistance.
- Before HAP, DHEC purchased clotting factor medication and provided this essential treatment to uninsured hemophilia patients.
- In 2018, the state determined it would be more cost-effective to use state funds to purchase private insurance policies for these patients, rather than providing them with only their medication.
- DHEC uses state funds to help them become enrolled in a Marketplace insurance plan. The HAP program covers comprehensive as well as preventative healthcare services relevant to bleeding disorders.
- Eligible patients must be a U.S. citizen or lawful permanent resident of South Carolina, and have a hemophilia or vWD diagnosis. They must be eligible and enrolled with DHEC, and must have an income at or below 250 percent of the federal poverty level. Also, they must be ineligible for Medicaid or Medicare services, as well as ineligible for insurance under any other plan.
- HSC encourages continued funding and support for the HAP program, to help patients who have no other place to turn for assistance, in order that consistent, uninterrupted healthcare access is guaranteed. The HAP program saves money for the state and diminishes the threat of future costs by keeping people healthier, more likely to gain and maintain employment, and less reliant on other government safety nets.
Provide funding to support premium assistance for insured individuals with hemophilia
- The South Carolina Bleeding Disorders Premium Assistance program leveraged a small amount of state funding to assist hemophilia and von Willebrand Disease patients who have access to insurance but who cannot afford the premiums (including patients who might have temporarily lost their jobs and therefore needed to elect COBRA insurance at a very high cost). The Bleeding Disorders Premium Assistance program filled an important gap for this small number of high-cost patients.
- When the Bleeding Disorders Premium Assistance program ended December 31, 2017, that termination created a gap for people with bleeding disorders and who have access to insurance but who cannot afford that insurance.
- HSC supports the reinstatement of specific state appropriations for the South Carolina Bleeding Disorders Premium Assistance Program to continue ensuring that persons suffering from bleeding disorders maintain comprehensive medical care through affording their own private insurance plans.
Establishing a Standard of Care for patients with Bleeding Disorders
- Currently, there exist no specific standards of care in South Carolina for treatment of individuals with bleeding disorders receiving services.
- Some common standards implemented in other states for Medicaid specialty pharmacies who provided services and clotting factors include: a prohibition on substitution of blood products without prior approval of the patient’s physician; the requirement that pharmacies stock all brands of clotting factor products in low, medium and high-assay range levels to execute treatment regimens as prescribed by a covered patient’s attending physician, and to ensure dispensing within the variance in assay to prescription/target dose not to exceed +/- 5%.; to provide needed ancillary supplies; the requirement that pharmacies demonstrate knowledge and experience concerning bleeding disorders; the requirement that pharmacies be able to deliver prescribed blood products in a timely manner, even in emergency situations; and the requirement that pharmacies demonstrate the ability to keep meticulous records of dispensed medications.
- Access to a Hemophilia Treatment Center (HTC). Federally-funded HTC’s can provide multi-disciplinary care furnished by hematologists, pediatricians, nurses, social workers, physical therapists, orthopedists, and dentists among others, all with specialized training in bleeding disorders care. The Centers for Disease Control and Prevention (CDC) has done numerous studies showing that mortality and hospitalization rates are approximately 40 percent lower in people who use HTCs compared with those who do not. There is currently one pediatric federally-funded HTC in South Carolina; Palmetto Health Richland Children’s Hospital, in Columbia. HSC has evidence that patients may not use the HTC due to distance and adults are dissuaded from receiving treatment because it is not designated as an adult center, although adults may be seen for care. HSC supports access to care and treatment for all bleeding disorders patients to an HTC, to include Medicaid, Medicaid MCO, Medicare and the privately insured. A standard of care may also require insurers to pay for laboratory services at all hemophilia treatment centers, regardless of whether the lab is a participating provider with the insurer.
- To date, at least seven states have enacted “standards of care” legislation.
- HSC supports establishing a standard of care for individuals diagnosed with bleeding disorders.
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