To all of you who have taken the time to participate in the CHOICE (Community Having Opportunity to Influence Care Equity) Project by taking the survey, thank you. For those who have yet to take the survey, please do (call 800-230-9797 or go to choice.hemophiliafed.org). CHOICE is about the bleeding disorders community and working with the community to raise the bar on care, services, and advocacy. The CHOICE survey asks questions about diagnosis, bleeding history, treatment, insurance coverage, quality of life, and quality of care. The more information we have about the community, the more we can work to improve the health of people with bleeding disorders.
Already we are learning so much from your responses to the CHOICE survey questions. There is power in this knowledge-power to change lives, improve medical care, and help ensure access to the services people with bleeding disorders need. We are taking what we are learning and applying it to improve and expand HFA programs and advocacy efforts now. Here are a few things we are doing:
1. HFA frequently receives questions from the bleeding disorders community related to advocacy issues. In response to the insurance and personal advocacy questions raised by participants in the CHOICE survey as well as from community members’ participation in other HFA programs, HFA launched its Dear Addy column this summer. The issues raised by survey-takers and program participants often impact the entire community. Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance. HFA posts a new Dear Addy question and response twice monthly in conjunction with a new advocacy-related vocabulary word. Look for Dear Addy announcements on HFA’s Facebook page, as well as part of HFA’s Community Voices section of our web site.
2. The mission of the HFA’s Rural Working Group is to identify solutions to lack of access to care and connection to community experienced by under-served members of the bleeding disorders community. The Group is working to accomplish its mission through (1) research of the impact living in rural areas has on members of the bleeding disorders community, (2) development of solutions to access to care, education, and other community- based mechanisms that increase empowerment, efficacy, and community, and (3) creating a national network of support for those that are living in rural communities. Knowledge gained through the CHOICE Project is a critical part of supporting the Group’s mission. If you are interested in participating in the group, please contact HFA for more information.
3. Women’s Issues – A special thanks to all of the women with bleeding disorders who have taken the CHOICE survey and made us aware of the issues you face. The information you shared, as well as your forthright and insightful feedback, is helping us identify issues women with bleeding disorders face locally and nationally. Hearing from women via the CHOICE survey is critical to advancing our legislative and personal advocacy efforts on behalf of women. HFA is sharing what it learns with local chapters to aid them in their support of women with bleeding disorders. CHOICE responses also are being applied to HFA’s Blood Sisterhood program. Blood Sisterhood is a peer network of women who support women with bleeding disorders on their life’s journey through diagnosis, treatment and day-to-day living. Ultimately, through furthering the conversation among women, we seek better health outcomes and a better quality of life for women with bleeding disorders.
CHOICE continues to be a community project. Over 150 community members helped develop the CHOICE survey and community member feedback continues to help us improve it. HFA will continue to put what we learn from the CHOICE survey to work for the community. If you know a friend or family member with a doctor-diagnosed bleeding disorder and/or carrier who has not taken the survey, please encourage them to do so.
* Through a cooperative agreement with the Centers for Disease Control and Prevention (CDC), HFA is running the CHOICE Project. The focus of the CHOICE Project is to collect information regarding health experiences of people in the bleeding disorders community. HFA is asking everyone in the bleeding disorders community to participate in this project by taking the CHOICE survey.
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