Community Reports

February is Rare Disease Month

Rare Disease month is an opportunity to raise awareness of rare diseases and improve access to treatment and medical representation for families and individuals who are directly impacted.

This year, in support of National Rare Disease day, February 28th, The State of Black Arizona is releasing a white paper report highlighting the disproportionate impact of rare diseases and COVID-19 on the African American community.

In 2020, the State of Black Arizona raised awareness of rare diseases as part of its mission of gathering data and information on issues affecting African Americans in the state; fostering a collaboration on addressing those issues and empowering the community to advocate for more positive changes in the diagnosis and treatment of rare diseases. More specifically, those who are disproportionately affected. We see progress, but there is substantial room and an undeniable necessity for improvements.

Our white paper report explores and encourages better policies and practices targeted to increase awareness of rare diseases, reduce possibilities of misdiagnosis for lack of awareness of a particular disease, and address the unacceptable consequences of delayed or denied access to care.

As with any rare disease, it is imperative that patients, caregivers, and lawmakers understand policy issues that potentially impacts access to care. Treatments such as step therapy, prior authorizations, geographic disparities rural areas versus urban, the cost to the health care system for incorrect diagnoses and ensuring that protections are in place against discriminatory benefits design in health plans will be topics covered throughout the dialogue.

Download the white paper HERE

The State of Black Arizona would like to celebrate a few local champions of rare disease for their commitment to public policy, increase awareness, early diagnosis, and access to health care for Rare Diseases.

Thanks for supporting National Rare Disease Month in February.