Don’t Repeal the Affordable Care Act! Lifesaving Medicine Should Not Depend on Wealth. (a plea to Republicans to choose lives over politics…)

Yesterday I picked up Mitzi at the end of an afternoon with friends. In the car, while she snapchatted, I was listening to NPR as they reported on the efforts by the President-elect and the Republican party to repeal the ACA. I didn’t know she was listening until we got home and she made me keep the car running so she could listen until to the end of the report.

Yesterday, nine days after she turned 15, she realized that if the ACA is repealed, she could die, because of this little pre-existing condition that insurance companies might not approve.

She is terrified that, because she has type 1 diabetes, some day, health insurance won’t be available to her. Because, pre-existing. And without that coverage, she will die. 

Mitzi was diagnosed at age 8, and yesterday was the first time she ever said out loud that diabetes might kill her.

But not the disease in an of itself, but because her life-saving medicine would no longer be covered.

Before you scoff, realize this — until the Affordable Care Act (aka Obamacare), many insurers denied coverage to those who needed it the most, even (or especially) for pre-existing, life-threatening illnesses. (Because, high cost to them, you know, to cover medicine that saves lives, as opposed to the low cost for people with no existing conditions who don’t need life-saving measures or medicines.)

I know ACA is not perfect. I know that. But until there is a program in place that ensures coverage for those who need it the most, please please please speak up to your senators and representatives and  to insist that ACA not be repealed — or even modified —  until another plan is proposed, vetted, approved, and in place.

I have a 15 year old daughter who should be focused on school, friends, sports, music, books, and figuring out how to grow up. How to continue to be a leader. How to continue to care for toddlers as a camp counselor and babysitter. How to be a better field hockey player. How to record her music. How to live her dream of being in the FBI or being a high school teacher.

Instead, she is now worried that she is going to die before realizing those dreams, because her government just pulled her medicine from her — without insurance, staying alive will cost her thousands of dollars each month which is likely out of her reach.

So, GOP, Paul Ryan, Donald Trump, all of you — mine is one kid out of thousands, one story out of millions. Edit, adjust, change the plan if you must, but it is immoral and unconscionable to repeal the ACA without an alternative in place.

Lives depend on it.

I mean, they actually, not theoretically on paper or on a chart or in a tweet somewhere, real lives actually depend on this.

Stop. Put lives ahead of politics and the whims of a novice politician. Consider. Be thoughtful. Be thorough.

Or people will die.

 

People

will

 

die.

 

 

On Special Needs Advocacy, Diabetes, and Ignorance

Wow, I haven’t blogged in quite a while. So much has been going on that I haven’t kept up with it all.

I’ve spent much of my time in the last couple of months helping my husband with his campaign for re-election our town’s School Committee, on which he served for the past six years. Elections can bring out strong passions, and usually candidates are supported (or opposed) on just a few issues.

This election was no different, and over the course of a few weeks it became clear that one issue on the table was advocacy for children with special needs — and that people didn’t believe my husband wasn’t a good candidate on this issue. When, on a local forum, it was pointed out that as a father of a daughter with special needs, Ray felt personally invested in the cause and has advocated for years, this assertion was dismissed by the original poster, with a “pfff, his daughter has diabetes, and so what that he makes sure a nurse accompanies her on a field trip, that’s whatever.”

I held my tongue then, but now that the election is over and my husband lost his bid for re-election, which I believe was in no small part because of this issue, I am going to speak up now. Loudly. Clearly.

Diabetes is not “whatever.”

Diabetes is more than a nurse on a field trip (though that’s nice, because, you know, life threatening stuff).

Diabetes is a medical condition that can, and does, affect a child’s ability to think and learn.

Signs of high or low blood sugar (hyperglycemia or hypoglycemia, respectively) vary in different children. Symptoms of low blood sugar can include feeling shaky, blurred speech, headache, sweating, tiredness, dizziness, hunger, and changes in behavior, and these symptoms may progress to severe hypoglycemia, which causes loss of consciousness and seizures. Symptoms of high blood sugar may include increased thirst, increased appetite, increased urine, tiredness, blurred vision, and, if ketoacidosis—a life-threatening condition caused by a lack of insulin that forces the body to use fat as an energy source rather than carbohydrates, which in turn releases acidic chemicals known as ketones into the blood—develops, symptoms may include extreme thirst, rapid shallow breathing, nausea, vomiting, abdominal pain, and even a fruity odor. — Desmond Schatz, M.D., quoted from the Juvenile Diabetes Research Foundation

Now, imagine trying to think and learn at school while suffering these symptoms.

Diabetes CAN and DOES have an impact on a child’s ability to function and learn at school.

This is why, for years, parents of children with diabetes have had to fight to make the science understood, and to insist schools accommodate these children and support them equitably. We’ve had to do this because diabetes is dismissed as a “whatever” medical condition.

This is why every year my husband and I sit down with nurses and counselors and other school staff, to craft carefully the words to ensure these accommodations are met, and that my daughter is not dismissed by next year’s teachers as “whatever.”

This is the same fight parents of children with other special needs have also been fighting for years and years.

The needs are different, but the fight for parents is the same, to advocate with science on their side:

That the child with ADHD isn’t just being a troublemaker.

That the child with executive function disorder is not simply sloppy and disorganized.

That the child with dyslexia is not stupid.

That special needs children just need to be understood and helped be the best students they can.

We have been fighting this fight since our daughter’s diagnosis. Because even after all the science and exposure and explanations and advocacy, some people, like that person (or persons) in my town don’t understand what life with diabetes is like.

My husband lives with his daughter’s diabetes every day, and because of that, has always worked hard to make sure that other children with other special needs get the support and advocacy they deserve. He wants for them what he wants for his daughter. He’s fought for them as he has for her.

And to that person on that one local town political forum, I just want to say, your ignorance was sad and painfully clear, and you did exactly what you accuse others of doing to you and your children — not understanding or supporting families with special needs children.

Discriminating. Judging. Dismissing.

Shame on you.

 

 

Politics not as usual

It’s one of those nights you wish you had something pithy to say.  You could wax poetic about Michelle Obama’s wardrobe, about the little girls’ poise, about their Grandma’s presence.

Honestly.  I don’t know what I could add.

I kept reminding my kids (5, 3, 2) that history was unraveling before their eyes, but they were focused on the snacks at hand (Goldfish crackers, string cheese.)  My  one hope, Cooper, fell asleep at minute 6 of President Obama’s speech.  Well, it was a long weekend for them, with their Grandpa up for a visit, a school holiday in honor of MLK, more snow than anyone predicted.

I am cynical about politics and politicians (as a Herald editorial page staffer I greeted such luminaries as Ted Kennedy and John Kerry, and was by nature unimpressed by either.  Down-to-earth, and less-showy, Marty Meehan won my approval by far).  As far as I’m concerned, politicians work for me.  They don’t float on air; they don’t rise above.

That’s what struck me about Tuesday’s inauguration.  I could talk to my children about the office, the moment, the history.  But when I choked up at 12:01, all I could say is “Yes.  Remember now.”

They won’t, of course.

I am cynical about politicians, flacks, those who make their living at this sort of thing.

But last Tuesday, I sort of hoped, it was different.  This could be new.

I could be wrong.

Time will tell.

Yay, Democracy!

That’s what I shouted when I came home from voting this morning.  I know, kinda queer, but I was feeling the love.

I went alone to the polls, early, following the pair of parent conferences I had before school started.  In the past, I’ve wheeled strollers along, but found it to be a little annoying.  I want all of my brain to be focused on the task at hand, and wrangling a herd of children is a little distracting.

When I got to the high school gym, though, I sort of wished I had some of the kids with me.  Maybe Mitzi and Cooper, who are now old enough to really appreciate the concept of elections.  For the past few weeks they’ve been mentioning the candidates’ names or repeating sound bites and slogans for both campaigns.

I find this funny because, while Ray and I are both interested in politics and government, we don’t spend a whole lot of time discussing issues or watching television.  It’s interesting to find out that even the brief exposure has stayed with the kids so strongly.

I don’t remember hearing a lot from my own parents.  I knew they voted but for whom remained a mystery.  I did get a healthy dollop of cynicism from my mom whose naivete about politicians died a little with John Kennedy, and later, more strongly with Richard Nixon’s resignation.  I learned to be supportive of the process but skeptical of the partipants.

Ray, on the other hand, is a believer.  That is, he believes that it’s possible to someday have a politician worth believing in, and continues to search.  He knows much more than I about history, government, and politics, and is eager to share his enthusiasm with the kids.

So maybe we are giving them a balanced perspective.  Hope and questioning; doubt with faith.  Whatever they learn from us, I know we are showing them that they have a responsibility to participate.  As citizens, they matter.  As Americans, they’re lucky to have the chance to be cautious optimists, and lucky they can vote.