Who Are We?
The Arizona Hemophilia Association (“AHA”) 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 AHA has served families and individuals affected by bleeding disorders in Arizona since 1967, providing bilingual and bicultural services and programs. 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 build up 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 an ability to manage through the ‘insurance maze’ becomes paramount.
The entire family is affected by the bleeding disorder physically, emotionally, and financially. With over 50 years 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 on the road to a cure by reducing morbidity and improving the outcome and quality of life. The next step is finding a cure for bleeding disorders. Until that is possible, we are focused on treating the total person, with programs to provide emotional support, educational programs to provide more knowledge about insurance and treatment, youth programs to promote the importance of quality education that lead to careers that provide good insurance. We are advocating for healthcare access, product choice and blood safety so that all of our community members will receive the best care based on their needs. We are increasing awareness about bleeding disorders so that patients are diagnosed sooner, treated sooner, and become a part of our community sooner so that we can enhance 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 to adulthood by staying in school, getting a good job with good insurance 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 Can You 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 and permanent, debilitating injury. Please join us in helping make a difference in their lives so that they can lead a long, productive, and healthy life.