JDRF Stands Up for People with Pre-Existing Conditions

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When my now adult daughter turned six: BAM. There it was, type 1 diabetes, something that would demand a lifetime of constant medical intervention, medications, and oversight until the cure. Back then it was just called type 1 diabetes. We didn’t call it a pre-existing condition.

The topic of pre-existing conditions is at the heart of the current congressional health care debate. The latest change to the GOP’s bill, called the MacArthur amendment after its author, Republican House member Tom MacArthur, would allow states to opt out of several key Obamacare insurance regulations that protect people with pre-existing conditions.

Some elected officials, like Mo Brooks (R-Alabama), have suggested that pre-existing conditions are a result of negligent behavior. In my daughter’s case, at least, it’s true. The first five years her life were filled with boozing, smoking, street fights, back alley dice games, some cock fighting and gosh knows what else. No wonder she’s saddled — since her sixth birthday — with a pre-existing condition! Shame on her.

You know I’m joking, right? And it sounds ridiculous, right? But here’s the thing that’s no joke:

People with pre-existing conditions are terrified. In the hands of a very rocky Congress, access to the medical support we need to stay alive is at risk of being ripped away from us.

It’s terrifying.

What we need on our side, many have thought, is a hero.

In steps JDRF.

The largest non-government diabetes research organization in the world, JDRF is also something else: A courageous powerhouse of an advocacy group on Capitol Hill. Back in the early 2000’s when stem cell research was new to the public – and something that few understood – JDRF stepped up, becoming a leader in education and advocacy around that research. Within a few years, nearly 90 percent of Americans supported it. Today, the research is legal.

Now, here we sit in another difficult political time, and JDRF is again taking a stand. Derek Rapp, President and Chief Executive Officer of JDRF, has issued a statement opposing the MacArthur Amendment. He said, “JDRF is deeply concerned with the MacArthur Amendment to HR 1628, the American Health Care Act (AHCA). JDRF opposes its passage because the amendment could jeopardize the insurance coverage that people with T1D rely on to live healthy lives.”

I applaud Mr. Rapp’s statement, and it brings me to thinking about the man who really got the nation thinking about health care and the wildly unfair way we provide it: the late Senator Edward Kennedy. Kennedy, a friend of my daughter’s (and mine), often told the story of the moment he realized something had to be done about health care in America.

He was in Boston Hospital, sitting 24/7 at the bedside of his son and namesake, who’d been struck with cancer and lost a leg to it. There he was with is son, and his son’s pre-existing condition. But that’s not what moved him to choose his life mission. Rather, it was everyone else on the hospital floor. He walked the halls and nodded at other parents, some who clearly were needy, and he thought to himself: Why should my son get whatever he needs to beat this and live well, and others not? How is that right? How is that reflective of the nation we want to be? Kennedy fought until his dying day for the rest of the pre-existing conditions out there.

I’ve thought a lot about him recently. How if he were alive, he’d laugh at my joke about my daughter’s wild ways as a toddler that “led to her pre-existing condition.” Yes, he’d laugh, but then he’d speak out, loud, unabashed, and sure of what he saw as right.

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VHM1Christina WilderLaurie RogowskiMariaAngie Speight Recent comment authors
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Laurie Rogowski
Laurie Rogowski

When I graduated from college in 1980 BCBS allowed me to switch to my own insurance policy. They also told me not to let it lapse because they would not take me back. It was quite an eye opener to realize that being a diabetic for 7 years but otherwise a pretty healthy 22 yr old would mean that no insurance would take me by choice. I would need to work somewhere where insurance was provided as part of a group or be married to someone with group insurance. I later learned that it was important not to have a… Read more »

Maria
Maria

I am confused. I have worked since I was 16 and have always had insurance whether under my parents plan or on my own. I am now 48 with a daughter with Type 1 Diabetes and yes, we have insurance. I have always picked a job where they had health insurance (because it is so important to have) whether I was a receptionist, concierge or administrative assistant because that is life. You find a job and get benefits. Are people not working who are worried about pre-existing conditions? What did everyone do before Obamacare (which is on a downward spiral)?… Read more »

Christina Wilder
Christina Wilder

Maria, one reason is because not everyone is blessed with the option to work. Or some people lose their jobs and have difficulty finding one. I’m glad everything’s worked out for you and your employment, I really am. And you asked what everyone did before Obamacare? Well, some got treatment through expensive ER departments because they couldn’t be turned away. This drove up the cost for everyone. Others used savings until it ran out and then lost their homes and everything else they had. The biggest reason families went bankrupt is because of medical bills. I have an 18 year… Read more »

VHM1
VHM1

You were very fortunate to (a) have a job and (b) have a job with insurance where pre existing conditions did not disqualify you. Make no mistake, prior to ACA insurance, even group provided insurance through your job, could have disqualified employees with pre existing conditions, and in fact often did. My sister in law has MS and did not leave a horrible work situation with a bullying, abusive boss because she feared ending up in a different job in which she would be denied insurance due to her pre existing MS. ACA changed things and prohibited denial on a… Read more »

Angie Speight
Angie Speight

Like you my daughter did nothing to get Type 1 diabetes. She was 7 years old, a healthy 65 lb. kid, loving life and BAM a blood sugar reading in the middle of the night of over 600 I was able to catch it because I to was diagnosed at age 25 with a blood sugar of 463 weighing in at 108 lbs. You see like so many others we did nothing to get this disease our pancreases chose to stop working. In order to live a healthy life for many years to come we have to have affordable health… Read more »

Cheryl
Cheryl

If this bill passes I hope there is a lawyer that is ready to take a case of discrimination. I know my family and myself will be ready to fight.

rick phillips
rick phillips

I am so with you on this. I have had Type 1 for 42 years now. Trust me at 17 I was not involved in unhealthy living, well except for the possible overload of TAB.

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