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Vol. 17 No. 32 - May 24, 2017


A plea from the heart

I have a pre-existing condition, and Rep. Vern Buchanan's decision to vote yes for the American Health Care Act puts my health at risk. But I am most concerned about the risk he has imposed on my daughter.

She was born with a congenital heart defect – like Jimmy Kimmel's baby (and 1 in every 100 babies), long before the Affordable Care Act was passed.

She was critically ill, and her dad and I fought alongside her amazing and gutsy doctors to keep her alive.

What I should not have had to be doing at the same time: Fight to keep her in health insurance.

My health insurance company canceled my daughter when she was 6 months old, writing that "this policy is renewable at our option and we choose not to renew it." My first harsh lesson in health insurance: Private plans before the ACA could not only deny you coverage in the first place, they could also cancel you as soon as you received a significant diagnosis – that is, as soon as you really needed health care.

My husband's group plan canceled our daughter's insurance, ironically and cruelly, on Valentine's Day. Our daughter was 2 years old, and had a heart surgery scheduled in two months. Lesson 2: Group plans pre-ACA could insidiously find ways to segregate sick people from well people, and then cancel the plan because it was incurring high costs – that is, the plan with the people who really needed health care.

Florida had a high-risk pool in the 80s, but that was not an option for my daughter. There was a two-year wait to get on it, and she didn't have two years to wait for this surgery. Even if she had been able to be enrolled in the high-risk pool, it had low annual and lifetime caps that would not have covered the surgeries she needed to live. Lesson 3: High-risk pools do not work.

The night the ACA passed I crumpled to the floor in tears of joy. For 24 years, I had fought with everything I had to keep my daughter in health insurance. And that night, for the first time in her life, I knew she could no longer be turned away.


I can't believe we are fighting this fight again.

I'm tired of hearing from people in my representative's office that the bill he voted "yes" on will cover pre-existing conditions.

It will not.

Allowing insurance companies to charge those with pre-existing conditions higher rates will make it unaffordable for so many. There is no difference between an upfront denial and being offered a policy you can't pay for.

Allowing insurance companies to not cover essential benefits? That makes a mockery of health insurance coverage. Don't tell me that this bill will guarantee insurance coverage for my daughter if her plan doesn't cover hospitals, or doctors, or medications, or MRIs..


The Kaiser Family Foundation estimates that 27 percent of adults under the age of 65 – that's roughly a third, or 52 million – have pre-existing conditions. As for the other two-thirds? We will all, at some point, have a pre-existing condition.

And when we do, we will understand why those of us who fought so hard for so many years before the ACA to try to access insurance and health care, to keep our loved ones or ourselves alive – why we know that we need the following:

We need continued access to affordable and appropriate care – whether we are covered by Medicaid, or Medicare, or group insurance, or private insurance – or single payer.

We need no discrimination or segregation of those with pre-existing conditions

We need to not have limits imposed on our care through increased premiums, or denial of essential benefits, or annual or lifetime caps.

We need Medicaid and Medicare to remain robustly available to all who need it.

The day after this bill passed, I called Buchanan's offices, and asked what he knew that every medical professional association, every hospital association, every patient advocacy group didn't. Because they all came out firmly against this bill. Our own local Johns Hopkins All Children's Hospital took a strong stand against this bill. This is the hospital that treats every very sick child in Buchanan's district.

And he voted against them.

I'm guessing Vern Buchanan has not had to sit by his child's hospital bedside, hoping and praying with every fiber of his being that his child would just live through that night, and then the next, and then the next. All while having to fight with every fiber of his being to keep health insurance for his child.

I lived this. I don't wish it on anyone.

But I do wish that Buchanan and the other 216 member of Congress who so heartlessly voted to take health care away from so many, would sit with one of those parents by their child's hospital bed. And be with them when they receive those cancellation letters and denial letters, which will come if this bill becomes law. I would like to think this might open their hearts.

I fear, though, it would not – because the way they voted, it's clear that their tax cuts matter more to them than our children's lives.

Buchanan voted against my daughter, against our family, against every American with a pre-existing condition, against every American who will develop a pre-existing condition.

Which is all of us.

Let us know what you think, post a comment.

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