I live in rural Wyoming and we do not have a hemophilia treatment center (HTC) in my state. How do I advocate for myself and better treatment at my local doctor’s office?
Whether you live in a rural or metro area without an HTC, or in a location with an HTC that has only pediatric staff, self-advocacy is important. If you don’t feel you are receiving the best treatment or want to be sure your current level of care continues, try these ideas to help you help your doctor provide you with the care you need when your doctor may have less experience treating hemophilia than a doctor at an HTC.
Communicate with your doctor
Open communication is important in any relationships, especially with physician-patient relationship. If you have any concerns or questions about treatment care and options, don’t hesitate to bring those questions to your doctor. Ask your doctor to reach out to an HTC in your region for guidance and information if they need it.
Contact other resources
Don’t hesitate to contact HTCs, your local, regional, or national bleeding disorder organization, and/or other community members for advice. There is no harm in connecting with these resources to gain a better understanding of your treatment options.
Check your care options
Some HTCs offer outreach clinics that travel to areas without an HTC. Check with the HTC closest to you to see if they hold an outreach clinic in your area. An annual visit at one of these clinics will help you gauge the level of care you receive from your local doctor.
Do the research
Seek out information on the latest therapy options so you are prepared to share and discuss these options with your doctor.
An important resource here at HFA is the Bleeders Bill of Rights. Use this guide to remind yourself of your rights, your choices, and your power.
Self-advocacy includes taking responsibility for your care. You already are doing just that.
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HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.