ACHA Board Member Michael Pernick Discusses the Threat of the American Health Care Act to People With Preexisting Conditions at Washington, D.C. Press Conference

Posted Wednesday, May 24, 2017

Adult Congenital Heart Association Board Member Michael Pernick today joined Senator Dick Durbin (D-IL), Senator Angus King (I-ME) and Senator Brian Schatz (D-HI) to discuss the risks that the American Health Care Act poses to people with pre-existing conditions. You can view the video here, and Michael’s full comments are below.

  • My name is Michael Pernick. I’m from Long Island. I was born with a congenital heart defect called Tetralogy of Fallot—you may have heard of it because it is the same heart defect as Jimmy Kimmel’s son, Billy.
  • I’ve had three open heart surgeries so far: the first two when I was a baby, and the third when I was 22 years old.
  • Despite successful surgeries, folks like me are never fixed. We face a lifetime of complications and risks that require highly specialized, expert care. As one example, a few years ago, I had a near-fatal infection in my heart. I also anticipate needing additional surgeries as I continue to grow older.
  • But in spite of these challenges, I consider myself one of the lucky ones. I have a rewarding career as an attorney in New York and I have access to top-notch health insurance & health care. I also serve on the Board of Directors of the Adult Congenital Heart Association, the leading nonprofit in the country fighting for the millions of Americans who were born with congenital heart defects or CHDs.
  • My survival—and the survival of the millions like me—depends on access to affordable, quality care.
  • That’s why the House repeal bill terrifies me and my family, and quite frankly, it should terrify all Americans. There are a lot of issues with this bill, but there is one issue I want to focus on that has gone largely unreported: the redefinition of essential health benefits (or EHBs).
  • The House repeal bill will let states apply for waivers to redefine what qualifies as “essential health benefits.” This is intended to give plans more flexibility, but it will just lead to skimpier coverage and it will deny me—and all other Americans with pre-existing conditions—the comprehensive set of benefits that we need in order to survive.
  • Even more dangerous, because the ban on lifetime and annual limits only applies to EHBs, if a state gets a waiver and narrows its definition of EHBs, lifetime and annual limits will come back. What’s even worse, under current regulations, large employers have the flexibility to set their plan rules based on any state’s definition of EHBs—this means that the 110 million Americans who receive coverage from a large employer could be affected even if their state doesn’t apply for the waiver.
  • What does this mean for me and the 2.4 million Americans with congenital heart defects? Any narrowing of EHBs related to hospitalization, access to specialists, rehab services, chronic disease management, or many other services, would jeopardize our access to care. And since these services are extremely expensive, we would likely hit any lifetime or annual caps if they were reinstituted.
  • I was born with a heart defect. That wasn’t my fault. I play by the rules. I do the right thing. But for me—and the millions of Americans like me—this bill could leave us high and dry, the moment our medical care gets too expensive.
  • Senators, I am under attack. People who have CHDs or other pre-existing conditions are under attack. All Americans are under attack. I know that you are standing up for us. For that, thank you.
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