State Capitol Advocacy Days
State Capitol Advocacy Days: March 10-11
March 9, 2021( Final Training Evening)
Location: Virtually being held this year due to COVID-19.
Program Agenda (Coming soon!)
This year, HSC is holding its 12th Annual Advocacy and State Legislative Days during March, the National Bleeding Disorder Awareness Month. We will be requesting proclamations throughout the state recognizing this special awareness and attending event ceremonies. HSC, along with our national partners, will be hosting advocacy training sessions leading up to the event. This important advocacy event fosters educational awareness with state legislators on the effects living with a bleeding disorder can have on families. We will have the opportunity to have important discussions and to ask for support on key areas of concern for access to affordable treatment care. Since its inception, our State Capitol Advocacy Days have provided for over 500 individual meetings with the SC House of Representatives and our State Senators from districts throughout the state. These meetings are of key importance in helping our elected officials understand our communities unique needs, and asking for support of our state programs that provide a safety net to those in need.
Advocacy training is provided in partnership with our national organizations; The National Hemophilia Foundation, Hemophilia Federation of America, Patients Services Inc., and other local and national advocacy consumer partners. Additional information will come soon about this years virtual State Advocacy Days. Stay tuned!
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
South Carolina Hemophilia Assistance Program (HAP)
- State-funded program in the Dept. of Health & Environmental Control (DHEC)
- Established to assist state residents with bleeding disorders by offering insurance case management and financial assistance for private health insurance premiums and co-pay assistance (for plans purchased through the South Carolina marketplace).
- 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.
- Must have income at or below 250% of the federal poverty level (FPL), ineligible for Medicaid or Medicare, non-insured, and not eligible for insurance under any other plan
- Is vital to the health and livelihood of people with bleeding disorders, ensuring they continue to have access to life-saving clotting factor medications. Currently, there are 14 enrollees in the program.
- 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.
Support an ACT establishing a South Carolina Rare Disease Advisory Council
- According to the National Organization of Rare Disease (NORD), there are 7,000 known rare diseases impacting the lives of 1 in 10 Americans, the majority of whom are children. Based on that ratio, more than 500,000 South Carolinian’s are living with a rare disease.
- For many of these diseases it can take years to receive an accurate diagnosis and effective treatment.
- While 95 percent of rare diseases do not have treatment options, for those that do, the cost of medications has risen 54% in the last four years.
- Hemophilia of SC (HSC) has been working with NORD, and a number of rare disease patient advocacy groups (including the Sickle Cell Foundation) to develop legislation to create a Rare Disease Advisory Council in SC.
- Would provide a unified voice for rare disease patients, and a forum to make recommendations to elected officials and other state leaders about pressing healthcare issues.
- An advisory council composed of qualified professions and persons living with rare disease could educate medical professionals, government agencies, legislators, and the public about rare disease as an important public health issue and encourage and secure funding for research for the development of new treatment for rare disease.
- Would serve as a forum for information on the provider-patient relationship and identify “best practices” throughout the nation.
- Would work with legislators and other government leaders to improve public policy throughout the entire state.
- Would also serve as an educational resource to all stakeholders about the ways in which rare disease patients interact with the healthcare system.
- Would be housed at DHEC–share staff with newborn screening program already in existence
- People with rare diseases face many challenges, including delays in obtaining a diagnosis, misdiagnosis, shortages of medical specialists who can provide treatment, and a lack of access to therapies and medication for treatment.
- 15 states have established a Rare Disease Advisory Council
- HSC supports establishing a Rare Disease Advisory Council for South Carolina.
Awareness to Support Legislation to Deny Accumulator Adjuster Programs in South Carolina Health Insurance Policies
- Additional information on this issue to come soon
Advocacy Day Sponsors