Dear Addy: Share Your Story

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’s concerns seriously, as evidenced by the recent decision to pull the vote on the American Health Care Act (AHCA).

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’s Health Insurance Program (CHIP) (e.g., Children’s 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’s list)