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HHT Insurance Coverage in Danger!

Health Bill Would Remove Protection for HHT Patients!

Update: The House cancelled the scheduled vote for Friday, March 24. There has been no announcement as to is rescheduling. 

If the American Health Care Act passes it would eliminate insurance coverage for essential health benefits mandated in the Affordable Care Act - including chronic disease management in HHT and other genetic diseases.

Contact Your Representative Now!

If phone lines are jammed, you can send an automatic email using Popvox to your representative.

Here is the link to the AHCA page:

You will need to sign up by entering your name, email address, and zip code. Then click the “Oppose” button under Add Your Voice on the upper right side of the page. You are then directed to a field to add your message and send electronically.

How This Would Affect You

  •  Individual states would be allowed to define “Essential Health Benefits,” meaning many of the basic services covered by the ACA -- such as prescription drugs, maternity care, mental health, emergency services, hospitalization – may no longer be covered.
  • Because annual and lifetime limits apply only to essential health benefits, insurers could put a cap on how much care one receives, but not on how much people owe. Treatment costs for major diseases are incredibly expensive and could easily bankrupt those in need.
  • Because treatments and medications for the HHT community can be very expensive, the elimination of essential health benefits essentially renders meaningless the ACA’s protections against insurance discrimination for those with “pre-existing medical conditions.”
  • Even if you get your health insurance through an employer, the new legislation could dramatically increase your costs while also reducing benefits.

Keep Cure HHT Growing


Top 5 Ways Your Donation Matters