On October 27, 2021, South Carolina advocates from the Immune Deficiency Foundation (IDF) will virtually meet with state legislators to educate them on primary immunodeficiency (PI). Please see below to learn what information you will be sharing with your legislators, and why - especially at this point in time - educating South Carolina legislators is essential to ensuring the voices of the PI community are heard.
Information to Share with South Carolina Legislators
PIs are a group of more than 400 rare, chronic disorders in which part of the body's immune system functions improperly. PI is caused by genetic defects in immune response pathways and affects people across all ages, genders, races, ethnicities, and socioeconomic statuses. In the United States, there are approximately 250,000 people who are diagnosed with PI, while thousands more go undetected. In South Carolina alone, there are an estimated 3,800 individuals with a PI.
Those with PI experience a high susceptibility to and reoccurrence of infections and illnesses. Antibiotics often have little effect on the infections long-term, which can result in chronic and life-threatening conditions requiring hospitalization. PI is also linked to autoimmune disorders and an increased risk of certain forms of cancer.
Individuals affected by PI often find it difficult to receive proper diagnosis, treatment, and specialized healthcare. They also experience difficulties financing healthcare, finding educational materials, and locating others who share their experiences. Since its founding in 1980, IDF has helped individuals overcome these difficulties so they can live healthy and productive lives.
Information on Rare Disease Advisory Councils
While members of the community will not be discussing the issue of Rare Disease Advisory Councils (RDACs) with legislators on October 27, South Carolina’s recent action on this issue means having some background knowledge on RDACs will be helpful when educating legislators about PI.
A Rare Disease Advisory Council, or RDAC, is a body with the purpose of giving individuals with rare diseases, such as PI, a voice in state government and advising policymakers on critical issues related to access, coverage, and the diseases themselves. The existence of over 7,000 rare diseases – including the 400+ PIs – means it is difficult for state policymakers to have in-depth knowledge about the rare disease community as a whole and the issues relevant to it. To help bridge these gaps in knowledge, an RDAC serves as an advising body and liaison between the rare disease community and state governments. By including in their membership individuals who are experts on various rare diseases, RDACs are a valuable asset to improving the overall quality of life for rare patients across the country.
In recent months, significant actions have been taken by decision-makers in South Carolina to establish the long-advocated-for South Carolina RDAC. While this years-long effort is almost across the finish line, the final details of the council are still being determined. As decisions are made about the South Carolina RDAC, it is more important than ever that legislators in the state be educated about PI and the unique needs of those in the rare disease community.
Join others from the South Carolina PI community in advocating to state legislators, helping to ensure the voices of rare patients across the state – like those with PI – are heard.
IDF would like to thank our Virtual State Advocacy Workshop 2021 sponsor: