Dear Addy: New Treatment Research

Dear Addy,
How do I approach my doctor with questions on new research about a treatment for my bleeding disorder? There are so many novel treatments under development or newly available! I want to make sure that my doctor considers my input and will work with me to select the treatment that best serves my needs.
Want To Be Heard

Dear Want To Be Heard,
HFA hears you! It is an exciting and anxiety provoking time in the bleeding disorders community as many new treatment options are being developed, while access and standards of care are still an ongoing issue.
By staying informed on new and novel treatment research and current standards of care, you are taking an active step in establishing shared decision making with your doctor. You are very much in control of your bleeding disorder treatment in partnership with your doctor. Here are some tips to help you approach your doctor:

  • Do Your Homework: Before you contact your doctor to meet and discuss your research interest, consider making notes and write down questions about the new treatment research. Some common questions HFA has heard include (but are not limited to):

    • How is this treatment different from my current treatment?
    • How safe is this new treatment?
    • Is this treatment right for me?
    • Realistically, when will this treatment be available?
    • How much will it cost?
    • Will my health plan cover this treatment?

  • Prep Your Doctor: When you make your appointment with your doctor, consider sending him/her the research news and articles that you want to discuss so he/she can do their research homework and be ready to answer your questions.
  • Tell Your Story: Be open with your doctor and explain to him/her about what you learned about the new research and why this new treatment research got your attention.
  • Ask Your questions: This is your chance to ask your questions and advocate for your care. The questions you have may be questions that others may have as well.
  • Get Resources: Ask your doctors to provide you with additional resources to further understand the new treatment(s) of interest to you. If your doctor has limited resources or information, ask to get connected with other doctors/researchers who can provide you with answers to your questions.

These tips are not limited to new and novel treatment research. You can take this same approach to address your current treatment and plan of care to make sure your needs are being met. Everyone’s treatment needs are different and finding the confidence to speak with your doctor will help you advocate for the care that best fits your needs.
Have a question? Click HERE. Your name will be changed in the response.
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.