SACRAMENTO, Calif., Aug. 26, 2019 /PRNewswire/ -- Healthy African American Families (HAAF), a non-profit organization dedicated to improving health outcomes among California's minority communities, today urged California policymakers to continue to raise awareness and take action to help combat rare diseases. On August 27th, HAAF will join the Rare Disease California Caucus (RDCC), California Action Link for Rare Diseases (CAL RARE), and other patient, provider and policy stakeholders at a Rare Disease California Caucus hearing in the California State Capitol in Sacramento. Rare diseases such sickle cell anemia, thalassemia, amyloidosis, lupus and others disproportionately impact African Americans in California and across the country.
"Californians living with rare diseases face significant health and financial challenges – including misdiagnosis, rising out-of-pocket costs, and a lack of access to care in rural areas – the burden of which is often disproportionately borne by African Americans," said Felica Jones, executive director of Healthy African American Families. "Healthy African American Families is pleased to join with Rare Disease California Caucus, CAL RARE, and other leading patient and provider advocates to help raise awareness of these conditions and drive concrete policy action that helps Californians living with rare diseases."
As part of the Rare Disease California Caucus hearing, policymakers, patients and other stakeholders will explore issues affecting the life of Californians living with rare diseases, such as sickle cell disease, amyloidosis, and other conditions. Participants will consider the impact of various policy issues, including the costs associated with misdiagnosis of rare disease, out-of-pocket costs that rare disease patients pay for their treatment, and the lack of access to care faced by many living in California's rural areas.
HAAF has sponsored a legislative resolution that would declare September 29, 2019 as "Cardiac Amyloidosis Day." Amyloidosis is a rare disease characterized by the buildup of abnormal deposits of a protein in the body's organs and tissues. The global advocacy community observes World Heart Day on September 29th, during which advocates education and awareness of cardiovascular diseases. According to the National Institutes of Health (NIH) Office of Rare Diseases, a rare disease is one affecting fewer than 200,000 people in the United States. Some rare conditions, such as amyloidosis, sickle cell anemia, thalassemia, sarcoidosis, and lupus, occur at a higher frequency in African Americans than they do in other populations.
"We applaud the Rare Disease California Caucus for its attention to critical issues facing Californians living with rare diseases and we applaud California policymakers for efforts to improve access to care, including capping out-of-pocket costs for patients. But there is more to do," added Jones. "We encourage policymakers to continue to raise awareness about the impact of rare diseases, particularly in underserved communities, and we urge California's members of congress in Washington to take action to cap out-of-pocket cost for Californians in Medicare Part D."
About Healthy African American Families
Healthy African American Families was founded in 1992 by the late Dr. Loretta Jones to improve the health outcomes of the African American, Latino, Korean, and other minority communities in Los Angeles County by enhancing the quality of care and advancing social progress through education, training, and collaborative partnering with community stakeholders, academia, researchers, and government.
SOURCE Healthy African American Families