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.


I Am Jimmy Kimmel, #IamJimmyKimmel

I want to thank Jimmy Kimmel.  He’s taken his adversity and used his celebrity to fight for a good cause.  For those of you who don’t know, his son was born earlier this year with  a heart defect.  Here is a video of  his description of it on his late night show.  If you haven’t seen it, it’s totally worth your time:


Jimmy Kimmel experienced what all parents of chronically ill children experience, and in the same order.

First, he felt terrified and helpless.  He cried as he spoke about the discovery of his son’s problem, of the filling up of the room with people who looked concerned, and of the explanation that his son needed life saving surgery, at another hospital.  He alone bore the burden of this news because his wife was recovering from birth, he alone had to consent to the treatment.

Second, he felt intense gratitude.  Gratitude to the nurses and doctors who saved his child’s life.  Gratitude to the hospitals. Gratitude to people who sent cards and gifts.  It  is an exhausting, overwhelming gratitude knowing you can never repay them.

Third, he realized that other children suffer the same illness, or something similar, and he felt incredible empathy and protectiveness for those children.  He realized that children will lose their healthcare if the Affordable Care Act is repealed.  He went on national TV in support of keeping the protections in place for children.  Lots and lots of parents have used their voices to support the Affordable Care Act, including me, to protect their chronically ill children.  But Mr. Kimmel has a much larger platform.

This became known as the “Jimmy Kimmel Test”, whether or not a new health care bill would allow children to get the surgery they need even if they can’t afford it.

Last night, Mr. Kimmel slammed Senator Bill Cassidy, co-sponsor of the Graham-Cassidy Bill, which eliminates all of those protections.  Senator Cassidy came onto his show that said the new bill would pass the “Jimmy Kimmel Test”, and Mr. Kimmel called him a liar, on national TV.  Take a look:


Real children are in danger. Children like mine.  Children like Jimmy’s.

This Graham-Cassidy Bill is terrible. And we have to fight back. But I feel like I have been yelling into the void on behalf of my daughter.   Parents are exhausted and we are wondering if we are making a difference at all.   So here is what I propose:  Let’s use Jimmy Kimmel’s celebrity.  We feel the same way.

I am Jimmy Kimmel.  So, let’s light up the internet with a new hashtag.  Let’s change our facebook profile pictures.


Let’s change the conversation on Health Care for our kids.

Ps:  Mr.  Kimmel, if you get the chance to read this, thank you from the bottom of my heart for fighting for my kid.





Medical care for children is suffering because of politics and it is driving me crazy.

Kids, who through no fault of their own, are born with certain conditions or have contracted certain illnesses are not getting the care they need in the greatest and richest country in the world.

This should never happen.

As I’ve said many times before, I’m in a special club, a club that no one ever wants to  be in.  It’s a club for parents of kids who are chronically ill.  I’m tapped into advocacy groups, medical news sources, and the American Academy of Pediatrics, and I hear lots of stories.  Life for these families is always hard, juggling the needs of your child and the needs of your family, doctors appointments, medical bills, school accommodations like IEPs and 504s, prescription medicines and medical device procurement.  A lot of these kids qualify for special medicaid programs that help parents get the care they need for their child, but I can tell you, the process is long and infuriating.  I have my master’s degree, I do research for a living, and I can tell you that the powers that be make the forms and the process as difficult as possible to get benefits for your child.  I joke, though it’s not funny, that I have spent years of my life on the phone with ombudsmen, insurance companies, government offices, and pharmacies.

Parents have enough to worry about if their kid is sick.  They shouldn’t worry about if their health insurance is going to go away too.

Maybe you don’t know about your Medicaid programs, that’s ok.  The American Academy of Pediatrics has designed a program called #KeepKidsCovered.  You can click on it and see what your state is doing for Medicaid.

If you’re so inclined, you can also write to the secretary of Health and Human Services in support of the Affordable Care Act.  His name is Tom Price and you can write him something like this (or you can cut and paste this):

Dear Secretary Price,

We are one nation, and we take care of our children, especially the sick and vulnerable ones.  Please keep provisions in the Affordable Care Act to protect chronically and terminally ill children, including keeping them on their parents’ insurance until they are 26, eliminating the lifetime cap,  and not allowing insurance companies to drop their parents because the child has a life threatening illness.  Please also protect the chidren who need Medicaid, the program that keeps them healthy so they can become productive members of society.

You are responsible to keep this country healthy.  These provisions will help.

Thank you,

Your name

Your address

Here’s his address:

Secretary Tom Price,

U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201

Somewhere along the line, we lost sight of the fact that our country is just one big community and we need to help each other.  Who wouldn’t spend a few extra pennies on their taxes to make sure that kids are medically taken care of.  I don’t know a single person who says, “No, it doesn’t matter, let that kid suffer.”  So WHY ARE WE HAVING THIS BATTTLE?

Please write to Tom Price, and your senators, and your congressman.  Please print ten out and have a party and invite your friends.  Please share this post wildly.  We are the people who make a difference so that kids stay healthy.

Even the poor ones.  Even the sick ones.   Even the weak ones.





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.


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

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


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.


Darcy Daniels