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Opinion | Jane Swift

Health reform must protect patients with preexisting conditions

Illinois gubernatorial candidate J. B. Pritzker (center) joined demonstrators protesting changes to the Affordable Care Act last week in Chicago. Scott Olson/Getty Images

The Clinton health care initiative of the 1990s was famously killed by a searing commercial known as “Harry & Louise,” which showed a middle-aged couple dealing with the alleged fallout of the reform’s passage. With Senate leaders rushing to ram through a health care reform bill this week, Republicans in Congress would do well to heed the cautionary tale I will dub “Lauren & Jane.”

Lauren is a sophomore in high school, an A student, a fierce athletic competitor, and an accomplished public singer. She leads a nearly normal teenage existence except that every month she receives five hours of intravenous immunotherapy treatments at the University of Vermont Medical Center. And, every four months, she travels to Boston to see a pediatric rheumatologist at Boston Children’s Hospital.

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For nearly a decade, Lauren has battled juvenile arthritis. Regular treatments, including nausea-inducing chemotherapy injections, keep her pain somewhat under control and prevent long-term joint damage.

I am Lauren’s mom. At one time, I was a state officeholder, but most recently, I was the CEO of a company whose ownership changed. In negotiating the terms of my departure, like many parents switching jobs, I lost sleep worrying about my daughter’s health care coverage. While we are fortunate to have decent coverage, Lauren’s doctors and I still had to fight hard for her treatments at Children’s. And of course, juvenile arthritis is a preexisting condition.

If the House or Senate version of the American Health Care Act becomes law, what will happen to Lauren and millions of other children and adults with preexisting conditions if they experience a gap in their health coverage? The suggestion that somehow those with illnesses have been irresponsible, or that they’ve invited bad health, is insulting and infuriating.

US Representative Mark Meadows, a leader of the conservative House Freedom Caucus, became emotional when learning from a reporter that the House bill wouldn’t guarantee protections for patients with preexisting conditions. Meadows lost family members to cancer and said he didn’t want to “make a political decision today that affects somebody’s sister or father, because I wouldn’t do it to myself.”

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While this is a nice sentiment, it shows a larger disconnect between average Americans and the other 216 House members who voted for this measure. It shouldn’t take a sick kid or a tragic loss for lawmakers to understand the effect this bill will have on millions of Americans, but it often does. To put a twist on Tip O’Neill’s famous quote: “All politics is personal.” If your lawmaker doesn’t have personal experience with the stress and anguish of health insecurity, you need to make sure he or she clearly understands your story.

Obamacare has flaws, but the AHCA’s weakening of patient protections, elimination of the personal insurance mandate, and massive reductions to Medicaid will leave millions without coverage and create a political backlash that will have an impact on the electoral map for years. Already, some on the left, anticipating Congress and the White House turning Democratic soon, are calling for a single payer health care system, which would be a huge mistake. As the parent of a chronically ill child, I see why so many doctors, policy makers, and patients support it. But single payer would hinder advances in care that benefit all our families. We can’t ever lose sight of the fact that innovation creates breakthroughs that lead to longer, healthier lives. For all my agonizing over cost, coverage, and service, I want what all parents and family members want: a cure.

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As New Englanders, we often take for granted the world-class care available in our backyards. That is, until your 8-year-old wakes up one day and can’t climb out of bed; until her hands hurt too much to hold a pencil; or she is forced to hang up her figure skates because she can no longer jump. That’s when we don’t take it for granted.

That’s why the stories of those who will be affected by the health reform bill are critical to this discussion. They are the cautionary tales our elected representatives need to hear.


Jane Swift, a former Republican governor of Massachusetts, was the CEO of Middlebury Interactive Languages.