Please Advocate With Me

There’s been a lot going on in the news, and here are some of the things that I’m worried about.  Let’s start with CHIP.

CHIP stands for Children’s Health Insurance Program.  It is a jointly funded program, so each state shares the cost with the Federal Government.  Founded in 1997, it was designed to help the working poor afford health care for their kids. This insurance is for children only and you can only get CHIP for your kids if you don’t qualify for Medicaid but you can’t afford private insurance.  In other words, you need to be slightly above the poverty line to qualify for CHIP.

Congress let that funding expire as of September 30 of this year, leaving states to either carry 100% of the funding or let the program die.  This is a program that gets kids physicals, gets them vaccines, or gets them to the dentist.  It keeps them healthy, and personally I’m a big advocate of healthy kids.   When kids are healthy and well fed, they learn better, they do better and they keep other kids around them healthier too.  To me, it is worth a few extra pennies of taxes.  It’s for children.  It’s the responsibility of all of us to keep our children safe, and when I say our children, I mean ALL children.

Then this last Wednesday, President Trump signed an executive order that  instructs federal agencies to look for ways to expand the use of association health plans and broaden the definition of short term insurance.  As a result, the Trump administration could make cheaper plans with less generous benefits more widely available. This undermines the system of the Affordable Care Act, where the stronger and healthier help to bolster the sicker and weaker, with the idea that someday they will also be sick and weak and they will need a robust health insurance in place to cover them in as well.  That’s the way health insurance works.  you pay now, when you’re well, betting that someday you will be sick.

And eventually, someday comes.

It’s come for my family.  I am the mother of a chronically ill kid who was born healthy but acquired a bacteria that wrecked her little three-year-old body, causing extensive organ damage and resulting in a kidney transplant among other things.  The executive order that the president signed will undermine my ability to keep her healthcare.  It will make premiums go way up.  It will make it increasingly difficult for my husband or me to change jobs.

Imagine what the combination of the expiration of CHIP and the Executive Order signed this week will do to the working poor, with a child who has asthma, or a peanut allergy, or was born premature.

Is it possible to convince people that it is in the interest of society to care for our sickest and weakest members, to care for the health of children?  I think it is.  I’m their advocate, I speak for them, that is literally what advocate means.  It means, “I give voice to.”  And so, I am speaking for the chronically ill kids, the working poor kids, the kids who are the sickest and the weakest among us.

I am asking you to call your Members of Congress to re-instate CHIP.

I am asking you to contact the White House to ask the president to revoke the Executive Order.

It is the job of the strong and stable to bolster the weak and the sick.

That’s what communities do, and this country is just one big community.

Please Advocate with me.

 

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Compassion is Sometimes Foreign

A while ago, I was at a dinner sponsored by The Schwartz Center for Compassionate Care.  It was a dinner for all of the Patient and Family Advisory Councils of Massachusetts General Hospital.  We have eight of them, and so the room was quite filled with not only patients and families, but with administrators at all levels.

Unknowingly, I was sat next to the moderator who stood at the beginning of dinner, and asked us all to think of a  moment of compassionate care.  Then a runner went around the room with a microphone where people could share their stories.  And all of the stories were good ones, small acts of kindness that at the time made the pain of the moment more bearable.  We all have had those moments.  The truth is, I have a hundred stories of compassionate care, but I had chosen one of my favorite stories, one that truly went above and beyond.  It was the first one I had thought of.

I had no intention of sharing it with the larger group.

But the  moderator, at some point in this discussion, asked the microphone runner to come up to her, and then she looked at me and said, “Darcy, I bet you have one that you can share with the group.”

Busted.

So I stood up, and here is the story I told:

“My daughter, Wendy, was born healthy, but had an infection that shut down the small blood vessels of her body.  She spent over 180 days in the hospital.  At the time we were living in a small Vermont town, but we had to move down to the Boston area to be closer to the hospital, especially once we knew that Wendy needed a kidney transplant.  So once we moved, Wendy’s nephrologist, after Wendy’s [outpatient] appointment was over, looked at me and asked me how Wendy was doing with all of this, how we as a family were doing with all of this.

“I answered that our apartment was fine, transportation to and from the apartment was good, but I was worried because Wendy had no friends.  She couldn’t go to preschool because she was so medically compromised, and she had been in and out of the hospital for so long that she really didn’t have any interaction with any kids at all.

“The doctor looked at me, was silent for a second, and said, ‘I have a daughter.  She’s only a few years older than Wendy.  Let’s have them meet.’

“And so, maybe once a week for a number of weeks, we would meet at the Playground by the Frog Pond in Boston Common, and Wendy would play with Ashley.”

You could hear gasps in the banquet room.  Maybe because this was so unusual, maybe because it was so special. It wasn’t medical, it was emotional.  I wanted Wendy to have a friend in this new place where we lived.  Wendy’s doctor, as a mother, understood exactly what I needed, what Wendy needed.  She needed to feel like a normal kid.

Would it surprise you to know that I was asked to retell that story many times over the next few months?

I’ve been thinking about this doctor a lot lately.  This doctor, who when she goes on vacation, often will come back with a present for Wendy. This doctor who brought a snow globe for Wendy to hold while she got wheeled into the operating room when she was getting her kidney transplant.  This doctor, who when Wendy got air lifted  to the hospital while in heart failure and I couldn’t go on the helicopter with her, this doctor called me on my cell phone and told me not to worry, she would be there to meet the helicopter while Michael and I drove down from Vermont.  This doctor, whom recently when Wendy had an MRI and they told us it would be a week until they let us know (if Wendy had a brain tumor or lesions) went down herself and badgered a radiologist to read it with her, and then called me to tell me it was clear.

This doctor.  This doctor is an immigrant.

She is an Indian woman, Dr. Sharma.  Her accent is incredibly thick and she talks a mile a minute.  Her grammar and syntax are sometimes laughable.  She uses idioms wrong, like instead of saying, “You are between a rock and a hard place,” She would say, “You are between two hard places” and your brain has to figure out what she meant while she plows on with her rapid speech.  This doctor, whom the first time I met on the other side of Wendy’s bed in the PICU spoke so quickly and with such a thick accent I despaired that we were doomed because I hadn’t understood a word she said.

And yet, today, I can’t imagine our lives without her.

Shock waves went out among the medical community this past week with the new travel ban and executive order to build a wall along our southern border.  The truth is, the United States Medical system relies on immigrants.  Hospitals have had to scramble to figure out exactly what they are going to do, because the new President has made it very clear that his “America First” makes all immigrants suspect.  And yet, more than 25% of all physicians in the United States are foreign born.

So is America First just a slogan?  Does it mean America First with fewer immigrants, or does it mean America First with the best medical system in the world?

It seems to me, in a country that was founded on immigration, you need the best minds working on the hardest problems in medicine, in science, in public health.

No matter their country of birth.

 

 

An Open Letter to President-Elect Trump

Dear President-Elect Trump,

Hi.  We’ve not been properly introduced.  I’m Darcy Daniels, from Massachusetts.  Full disclosure, I didn’t vote for you, but I still want you to succeed because you’re my President, and it will be your face that represents me around the world.  That’s the way American democracy works, and I’m a big believer in it.

You said in your victory speech on Election Night that you were going to be a President for all Americans, so I’m going to take you at your word and I thought I’d write to you about one of your first initiatives.

Obamacare.

Or as I like to call it, the Affordable Care Act.

But first, I’d like to introduce you to my daughter, Wendy.

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Cute, right?

She was born totally healthy, but she contracted a bacteria called e-coli that did   irreversible damage to her body.  It resulted in a lot of complications, including multiple organ failure and a kidney transplant.  She has spent a lot of time in the hospital, so much time, in fact that she wrote a story about it, that was turned into a cartoon, and is now being shown to sick and scared kids when they come into the Emergency Department.  She also competes in the American Transplant Games and the World Transplant Games.  This girl, she’s a fighter.  She’s tough.  She gives back to her community.  In short, she’s everything we want an American to be.

She is a real beneficiary of the Affordable Care Act.  Now I know that you ran on a “repeal and replace” Obamacare platform, so I wanted to turn your attention to some of the features that are really important to people like me, people who have worked long and hard, and who have insurance, and who pay all the premiums and out-of-pocket expenses.

The first one is the provision that allows kids to stay on their parents’ insurance until they are twenty six.  Now, I know you can understand this, you’ve got kids, and this allows everyone’s kids to go to college if they want to, find a career path, and still be able to be covered while they are figuring all of that out.  This one really is a no-brainer, and I could be wrong, but I feel like most parents like this provision of the Affordable Care Act.  We want our kids safe while they’re working to become responsible citizens, because responsible citizens pay taxes, and that’s what keeps the government working.

The second is an important one to parents like me, who have a kid with chronic illness.  This provision is that children under 19 years of age can no longer be classified as having “pre-existing conditions.”  This allows me to keep my insurance, or change jobs and get new insurance without having to worry whether or not anyone will cover me because my kid happens to go in the hospital a lot, which she does.  This is the one that causes me to lose sleep at night, because if this goes away it will be harder and harder for us to get health insurance, and it’s something we will really need.

The third provision is the removal of the cap on the lifetime insurance that companies are willing to pay for.  Because here’s the thing, Wendy started EARLY in her life with medical expenses, and through no fault of her own.  She will hit that lifetime cap WAY BEFORE any of her peers will. Then really where will she be?  Who will be able to pay for the constant medical care she will need throughout her life?

As a parent of a chronically ill kid, I’m constantly worried, worried that she will be sick, worried that I won’t be able to take care of all of her needs, worried that I will have to get creative with finances so that I can pay for her medications and medical supplies that aren’t covered by insurance.  I don’t want to worry about health insurance too.  I just want to know that I can keep it.  I’m totally fine with paying for it, I’m not asking for a hand out.  We work hard and we know that insurance isn’t cheap.

But please, don’t take these provisions away from the Affordable Care Act, or whatever it is that you’re going to repackage it as when you “repeal and replace.”

You’re in charge of a lot of citizens now, including the vulnerable ones, and there isn’t much more vulnerable  in this world than a chronically ill child.

Thanks for listening, Mr. President-Elect.

Sincerely,

Darcy Daniels

Massachusetts.