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State Capitol Advocacy Days

Advocacy 2020

State Capitol Advocacy Days: March 10-11

March 9, 2021( Final Training Evening)

Location: Virtually being held this year due to COVID-19.

2021 Registration Invitation and Information Form

2021 Online Registration – Closes on February 26th

2021 Legislative Priorities

SC H3956 Rare Disease Advisory Council

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, National Organization for Rare Disease (NORD), and stakeholders, and other local and national advocacy partners.  Continued information about this years virtual State Advocacy Days will follow. Stay tuned! 

Virtual Training Session #1, January 26th @ 7:00pm

Virtual Meeting Registration Link!

Virtual Training Session #2, February 16th @ 7:00pm

Virtual Training Session #3, March 9th at 7:00pm

(Quick meeting to answer questions, review agenda points)

2021 Priorities

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 16 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 (RDAC)

  • 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 South Carolina has been working with the National Organization of Rare Disease and a number of rare disease patient advocacy groups in South Carolina to develop legislation to create a Rare Disease Advisory Council (RDAC) in South Carolina.
    • 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.
    • 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.
    • 16 states have established a Rare Disease Advisory Council
    • HSC supports establishing a Rare Disease Advisory Council for South Carolina, Bill # H3956

Support Anti-Accumulator Adjustment Program Legislation

The importance of anti-accumulator adjustment legislation is to help ensure that individuals and families with chronic health conditions, like hemophilia, can access medications necessary for keeping them healthy and (in some cases) alive, with the help of co-pay assistance cards.

  • Many pharmaceutical companies offer co-pay assistance cards to help cover the patient’s portion of medication costs. Until recently, pharmacy benefits managers have allowed these payments to count towards a patient’s out-of-pocket costs.
  • Accumulator adjustment programs prevent any co-payment assistance for high-cost specialty drugs from counting towards a patient’s deductible or annual out-of-pocket maximums.
  • The monthly cost of many patients’ medications, such as those for bleeding disorders, can easily exceed the deductible. This means that many patients are faced with the choice of either paying thousands of dollars (if they are able to) for their medications, or going without.
  • Ostensibly, these programs are intended to incentivize patients to select cheaper generic medications. However, with many serious chronic diseases, like hemophilia, no such generic alternatives are available.
  • Patients are often unaware that these new parameters are implemented in their plans. These programs often have deceptive names, like “Benefit Protection Program,” and marketed as having positive impacts on beneficiaries.
  • At least five states (Arizona, Georgia, Illinois, Virginia, and West Virginia) have passed bills that prohibit or limit the implementation of accumulator adjuster programs in health plans sold within the state.

 

 

With Appreciation to our Advocacy Sponsors!

Premier Year – Round Advocacy Sponsor:

Takeda

Advocacy Days Awareness Sponsors:

Genetech Logo    CSLBehring Logo     OctaPharma