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NECESSARY CONVERSATIONS: Cardiac Amyloidosis and Other Rare Diseases Impacting the Health of Our Communities

Arizona Osteopathic Medical Association and Arizona Medical Association Encourage Support of Rare Disease Patients and Need for Increased Awareness

Phoenix, Arizona, Feb. 28, 2020 (GLOBE NEWSWIRE) -- Today, the state’s leading physician support organizations, the Arizona Osteopathic Medical Association and Arizona Medical Association, recognizing the significant impact rare diseases have on Arizona families, are asking Arizonans to learn more about these rare diseases.  A focused part of this effort is their support in educating and engaging lawmakers and health care providers around the unique policy and health care access issues that impact Arizona’s rare disease patients.

Challenges for rare disease patients can include rising out-of-pocket costs, uncertainty in coverage of burdensome step therapy and prior authorization requirements, disparities in access in rural areas, and especially for rare-disease patients and state health care budgets, the social, emotional, and financial costs of misdiagnosis.

 The State of Black Arizona, a nonprofit dedicated to research and demographic data, is taking the lead alongside the Arizona Osteopathic Medical Association and Arizona Medical Association by hosting a free rare disease Community Conversation at the Arizona House of Representatives on Thursday March 12, 2020. The conversation is set to include discussion of rare disease data, patient and provider experiences, and the public policy issues that impact access to health care. The program will highlight rare diseases, specifically providing education on the disproportionate impact of rare diseases in African Americans, including sickle cell disease and cardiac amyloidosis.

Considering the number of Arizonans diagnosed with a rare disease, there are few who could not learn something of value by attending, “One in ten people are affected by rare disease. That translates to over 700,000 Arizonans living with one of the over 7,000 known rare diseases. We are glad to be able to shine a light on rare disease issues and help drive policy discussion,” said Janet Weigel, Interim Executive Director of the Arizona Osteopathic Medical Association.

 Arizona State Representative Amish Shah-LD 24, a physician, is set to open the event with a legislative address in support of The State of Black Arizona’s efforts to improve the quality of rare disease patients’ lives through awareness and advocacy.

 The State of Black Arizona worked with the Office of Arizona Governor Doug Ducey on a proclamation designating March 2, 2020 as Cardiac Amyloidosis Awareness Day in Arizona. Cardiac amyloidosis is a rare and underdiagnosed disease caused by a build-up of an abnormal protein, called amyloid, in the heart. The buildup can lead to heart failure with symptoms including shortness of breath, fatigue, and swelling of the legs. One subtype of cardiac amyloidosis, hereditary ATTR-CM, predominantly impacts African Americans and people of African descent.

 For more information about the event, visit www.stateofblackarizona.org and register by March 10, 2020.


About the Arizona Osteopathic Medical Association: Since 1921, the Arizona Osteopathic Medical Association has been the voice of osteopathic medicine in Arizona. With more than 2,500 members – active, retired, interns, residents, and students - AOMA’s mission is to promote the osteopathic medical profession, serve its members, provide osteopathic continuing medical education, and advocate for access to high quality, cost-effective healthcare. For more information about AOMA, visit the website at www.az-osteo.org.

About the State of Black Arizona: Since 2015, the State of Black Arizona has created a platform for the synthesis of data, demographics, and research to inform the community on the status of African Americans in Arizona. The data is intended to help elected officials, community leaders and organizations with action planning and decisions related to the issues and concerns of the state. We believe as a result of this work; the data will compel both the leadership and grassroots community to make a concerted effort to provide solutions that improve the lives of all Arizonans. For more information about SBAZ, visit the website at www.stateofblackarizona.org


Janet Weigel
Arizona Osteopathic Medical Association