Dear Addy,

I’ve been following the news about the Affordable Care Act. What else can the bleeding disorders community do to ensure access to quality health care?

Energized Advocate

Dear Energized,

Advocacy is most successful when people share their personal story about how legislation affects them. Across political parties, Americans are reaching out to their state and federal legislators in record numbers. This level of citizen advocacy is powerful. Congress is taking their constituent鈥檚 concerns seriously, as evidenced by the recent decision to pull the vote on the American Health Care Act (AHCA). Visit HFA鈥檚 Health Care Legislation Outlook for more information on where health care policy stands.

Your efforts are vital to ensure access to quality health care for the bleeding disorders community. Check out this video by HFA staff about what you can do:

Given all of the uncertainty in Washington, D.C., advocates at HFA are hard at work to make sure any health reform protects patients. Help HFA by sharing what access to quality health care means to you. Your stories will inform legislators about the challenges and barriers people with bleeding disorders face every day. Record a short video and send it to HFA:

Here are some themes you can weave into your story:

  • Lifetime or annual cap
  • High-risk pool
  • Medicaid
  • Public Children鈥檚 Health Insurance Program (CHIP) (e.g., Children鈥檚 special health, Children with special health care needs, Children with special needs)
  • Out-of-pocket costs (e.g., co-pays, deductibles, coinsurance)
  • Industry patient assistance programs
  • Access to HTCs
  • Product choice
  • Insurance denial
  • Prior authorization
  • Co-pay assistance
  • Step therapy (e.g., forced to try a product your doctor did not prescribe, fail first)
  • Formularies (e.g., preferred drug list, specialty tiers, drug was no longer covered, drug was no longer on your insurance company鈥檚 list)

If you are attending HFA鈥檚 Symposium in Providence April 7鈥9, 2017, join us in the Story Lounge to share your story in person. HFA staff will be in the Rotunda Friday morning from 9:00 a.m. to 11:30 a.m. and all day Saturday.


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 鈥淒ear Addy.鈥 Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.