Who are we?
The Arizona Bleeding Disorders (“AZBD”) is a volunteer-based non-profit that works to improve the quality of life of individuals and families affected by bleeding disorders by providing caring support, quality education, and targeted advocacy aimed at enhancing medical care and insurance coverage for our community in the entire state of Arizona.
Who do we serve?
The AZBD has served families and individuals affected by bleeding disorders in Arizona since 1967, by providing bilingual and bicultural services and programs to support them. We are the only such organization in the state of Arizona.
Why Do We Serve Them?
Bleeding disorders are life-threatening, debilitating, and expensive to treat with many physical, emotional, and social challenges. A child with severe Hemophilia will spend over $150,000 annually to prevent bleeding. Some children and adults even develop inhibitors to the treatment and the costs can exceed $1,000,000 per year. Failure to preventatively treat the disorder can result in prolonged painful bleeds that cause permanent and severe damage. Proper medical care and ability to manage through the ‘insurance maze’ becomes paramount.
The patient’s entire family is affected by the bleeding disorder physically, emotionally, and financially. With over 50 years of experience, we are the only agency in the state of Arizona that provides programs and services to people affected by bleeding disorders so that they can better cope with their disorder and can become self-advocates for themselves and/or their family. We partner with Hemophilia Treatment Centers, other agencies, and medical professionals to provide programs and services unique to the bleeding disorder community to best meet their needs.
Where are we going?
We are improving outcomes by reducing morbidity and improving quality of life for patients and their families. The next step is finding a total cure for bleeding disorders. Until that is possible, we are focused on treating the total person, with programs that provide emotional support, education about insurance and treatment, and youth programs that help young patients learn the importance of quality education that leads to careers with the best insurance options. We are advocating for healthcare access, product choice, and blood safety so that all our community members will receive the best care based on their needs. We are also focused on increasing awareness about bleeding disorders so that patients can be diagnosed sooner, treated sooner, and become a part of our community sooner, effectively enhancing their quality of life.
What will it take to get there?
With the programs and services we have provided over the past 50 years, we have seen improved preventative treatment, a better understanding and importance of insurance, and continued access to treatment. We have helped children transition into adulthood by staying in school, getting a good job with good insurance benefits, and becoming a self-advocate for their own care. However, there are many others to help and many challenges to overcome.
In order to continue effectively serve our entire bleeding disorder community, we need financial resources, board commitment and participation, volunteer recruitment and involvement, increased communication with health providers, increased public awareness, and a strong strategic direction and focus.
How you can help!
We have the expertise and experience to provide the needed programs and services, but we are continually in need of volunteers and financial support to make this happen. Without that support, children may not get the treatment and support they need which can lead to greater risk of complications, including permanent, debilitating injury. Your support can make a real difference in the lives of those affected by hemophilia. Together we can help patients live a long, productive, healthy, and happy life.