Who We Are
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. Teens need to fully appreciate the importance of getting a quality education so that they can get a job with sufficient insurance.
The entire family is affected by the bleeding disorder physically, emotionally, and financially. With over 40 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 toward a cure is to provide treatment that requires fewer weekly infusions. 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 forty 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.
What We Do
The Arizona Hemophilia Association is dedicated to enhancing the quality of life for people with inherited bleeding disorders, while advocating for a cure. We “SPEAC” on behalf of those who are affected by bleeding disorders by providing:SUPPORT – families affected by bleeding disorders
- To determine what needs are unmet and develop programs to meet those needs
- To provide people with bleeding disorders and their families with a forum for learning, sharing, and supporting one another
- To establish a strong network of families and volunteers to help one another through life transitions
- To encourage a culture of reciprocity among the bleeding disorder community
PREVENT – complications such as joint limitations, chronic pain, and financial and emotional hardships
- To provide people with bleeding disorders and their families with a safe environment for discussion regarding treatment, access to care, quality of life, therapy satisfaction/concerns
- To work in tandem with the Hemophilia Treatment Centers to promote a healthy lifestyle and preventative care
EDUCATE – families, healthcare providers and the community on the unique needs of those with bleeding disorders
- To provide quality educational programs that meet the needs of the community for all stages of life
- To provide educational literature on bleeding disorders, insurance, products and current medical technology
- To educate families regarding available and new products on the market, and recall notices or problems with products
- To provide information to the general public about bleeding disorders and the association
- To educate the community about all of the programs/services offered
ADVOCATE – at local and national levels through improved communication with policy makers and among one another
- To empower our community members to be their own best advocate
- To develop a strong advocacy role for health-related issues regarding the bleeding disorder community
- To build relationships with and provide education to legislators, insurance directors and state health and Medicaid departments
- To monitor legislation that may have a direct impact on the community’s concerns
- To provide information for issues/concerns related to health care programs, services and access
- To improve/maintain access to low cost, adequate health care to our patients
CURE – by funding groundbreaking research
- To keep abreast of innovations and developments with industry manufacturers
- To work with national organizations in search of a cure