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7 Parents Terrified They Won’t Be Able to Afford Their Kids’ Health Care

Photo: Jen Gann

On Monday, senators returned to Washington, D.C., and resumed working on the Republicans’ health-care bill, a new version of which is slated to be unveiled later this morning. From its inception, this bill has threatened key provisions — protections for preexisting conditions and essential benefits, the elimination of lifetime and annual caps — put in place by the Affordable Care Act.

If you or a loved one has a chronic condition, you’ve probably been following the news closely and getting updates like the one I got on Wednesday from the Cystic Fibrosis Foundation: “We’ve been txting you so much b/c calling 202-517-8215 repeatedly is the best way for your sens. to hear that you need them to vote NO on their health care bill.” My 1-year-old son has CF, a genetic disease without a cure. Like many chronic conditions, it can be extraordinarily expensive to treat, to the tune of $300,000 a year.

With an uncertain future for preexisting conditions, essential benefits, lifetime and annual caps, parents like me — whose children have urgent and high-cost health-care needs — are especially terrified. Below, six more parents explain why the possibility of the health-care bill passing keeps them awake at night.

Jessica, Texas

The fate of health care has been pretty consuming for me the past few months. I have CNN on all day long waiting for updates and spend way too much time Googling things like “health care bill, senate health care, preexisting conditions and health care, lifetime and annual limits …”. I’m especially nervous because of my 1-year-old son, who has a chronic disease that requires rigorous treatment.

Right now, our insurance comes through my husband’s employer. If this bill passes, I’m extremely concerned that his company could choose to follow a state who seeks waivers for all or some essential health benefits.   What if prescriptions don’t need to be covered? We are so thankful our son will be eligible for a very expensive drug that can treat his condition, but what if our insurance won’t cover it because he’s not showing symptoms at the time? Or just won’t ever cover it?

The thought of not being able to provide our son with medication that could potentially add decades onto his life makes me sick. Obviously, I would give up anything to get it for him, but what happens when the money runs out? At $200,000 per year, that won’t take long.

My family is so fortunate: We have good insurance and if times ever did get tough we have a lot of family who would do everything they can to help support us. If people like us, who are financially stable and have a support system, have serious conversations about the possibility of getting divorced to avoid bankruptcy — I can’t even begin to imagine how people who are much more vulnerable are feeling.

I just have such a hard time comprehending how anyone could support these bills coming out of the House and Senate. Do they think their families are invincible? Anyone can go to bed “healthy” one day and wake up sick the next. Isn’t that the point of insurance? To cover us for things that might happen? Are we really going to be at a place where driving a car without insurance is illegal but failing to contribute to the insurance pool for health care isn’t?

Rachel, Missouri

At 2.5, my daughter was a “typical” healthy, smart, active kid. She could count to 20, and loved sports and playing imaginary games. We’d just had a newborn when we noticed her eye was turning in. When she ended up in the the ER for uncontrollable vomiting we found out why: She had a tumor the size of a clementine in the base of her brain. The tumor was classified as a very aggressive brain cancer with a 20 percent five-year survival rate.

My daughter survived: She is now 6, and cancer-free, but has severe long-term physical and cognitive disabilities.

As for costs: The bills for all the cancer treatments were in the millions. We owed $7,000 out of pocket the first year, but friends fundraised for us, so that year didn’t have to pay much. Without the protections of the ACA, we would have been bankrupt. We would have reached our lifetime cap right away. I so vividly remember receiving this packet of information from the social worker in the pediatric ICU about lifetime caps. I felt so relieved when the social worker reassured us the brochure was old and that the ACA — this was 2013 — had gotten rid of lifetime caps.

I’m scared. It’s a cliché, but I lie awake frightened at night. Short term, I have insurance through my work. But many are reporting that the health-care bill can and will impact employer-provided insurance too. If the lifetime caps come back, I’m not sure how that will work. Will it be retroactive? Could we lose insurance right away? If I lose my job or want to change jobs, we can never be without insurance for any reason.

I also live in a medically fragile/special-needs kid world. I have friends whose kids have much more expensive medications and costly equipment or whose kids require hands-on medical nursing in their home. What will those friends do?

Right now, our daughter is a cute kid with a sweet disposition who beat cancer. But the truth is that cute kids who get cancer become adults who need Medicaid. I’d rather people support this very necessary program than tell me she’s an inspiration. She’s not an inspiration; she’s just a kid who is working her ass off to do the things everyone else takes for granted. We need to make sure all of that work isn’t in vain.

Please imagine every cancer cliché you can: the impossible pain, hair falling out in clumps, vomiting, exhaustion, bleeding sores from mouth to anus. Now imagine all of those things are happening to your 3-year-old. In fact, imagine that you have to do this to your child, torturing her with chemo and radiation, so that she has a chance to live. Do you want to know what the third or fourth question EVERYONE asked when they found out about our daughter? After, “How is she doing? How are you?” it was always, “How good is your insurance?”

Lisa Lightner, Pennsylvania

My son has numerous diagnoses — dup15q, Lennox Gastaut, a fancy term for lots of seizures that are difficult to control and don’t respond well to medications. As far as the medications that are out there, well: Nothing earth-shattering has come out in decades. If there is something new, it will likely be very expensive. One of the things his neurology team wants us to consider is a corpus callosotomy, a brain surgery that is very expensive.

We didn’t ask for this; his rare genetic mutation is just that, rare. There is nothing we could do to cause or prevent it. In addition to whatever this new bill does to Medicaid, he’ll forever be a “preexisting condition.

If I’m being honest, if this bill goes through, with my husband’s job and our primary insurance, for the next ten years or so we’d be fine. But all it would take is one job loss or for my son to be denied something due to lifetime caps or preexisting conditions … and our situation could quickly spiral out of control into homelessness. As it is, we have to plan on retiring for three, because Kevin will never be bringing in a solid income.

Every child in Kevin’s school is like him, so if that school loses their state education-based Medicaid funding, I fear it will have to close. It’s the only place where he has succeeded; he just cannot learn in the regular school.

Then, when Kevin is 21, we’ll be sunk without Medicaid. He’ll need it for health care, job training, transportation — PA Medicaid provides a lot in this state.

I truly do not understand, how, in good conscience, politicians can do this to us, families like mine. I understand that many feel Medicaid is not sustainable in its current format. However, why are the wealthy getting more tax breaks as a result of this bill? It just doesn’t make sense. They are already not paying their fair share on a percent basis. How do you explain giving incredibly wealthy people even more money and taking away health care from disabled people? Disabled people will die as a result of this bill. That’s not hyperbole.

In a way, if it does pass, I’ll be disappointed, but hopeful. It will make the 2018 and 2020 elections that much easier for the Democrats. They’ll just have to undo whatever is done.

Doug Elmer, Kansas

Last year was a pretty normal year for my son, who survived cancer but has a lot of related and lingering health issues. He had just one five-day admission to the hospital for asthma. The total cost billed to our insurance, Blue Cross Blue Shield, was $213,250. No emergencies, just the cost of taking care of a medically fragile kid with chronic conditions.

At that rate, if the ACA were repealed this summer and Blue Cross Blue Shield put the $1 million lifetime cap back on our policy, my son would lose coverage by the time he’s 11 or 12. He’d be facing down middle school and beyond with no more coverage through our employer-based plan.

I know our story isn’t perhaps as dramatic as a family who relies on a plan purchased from the exchanges or on Medicaid, but I also think that a lot of middle- and upper-class people think the health-insurance debate doesn’t impact them because they have insurance through their employer. But the preexisting conditions, the lifetime caps, the essential benefits — all of those protections afforded by the ACA protect employer-provided plans, and my understanding is that they are all completely repealed or seriously weakened in the GOP plan.

How many families do you know that have $200,000 in discretionary spending a year to pay for medical care when their middle-schooler gets denied insurance for the rest of his life? This isn’t a matter of figuring out how to pay an extra bill by driving for Uber or canceling cable. Without access to real health insurance that’s set up to handle the ongoing costs of helping someone disabled or with a chronic condition, there’s no scheme or amount of hard work that would generate the money to cover my son’s medical care.

I’m scared of becoming an insurance refugee. I know there are going to be states that do a better job taking care of folks — New York, Massachusetts, California. We don’t live there; we live right in the middle of Red America. When people talk about letting the states decide, we know that Kansas will be the first in line to opt out of any provision or program they can. Will we have to move somewhere just to get access to care for our son, and would that even work if he’s got preexisting conditions?

Underlying all of this is also anger, I guess. I know this is selfish and privileged, but I’m angry about what I thought of as the social contract being violated. We did all the “right” things — we studied hard and got degrees, started careers that focused on helping others, got insurance through our employers. There’s nothing to blame for our son’s cancer. It just happened. He was such a trouper through treatment and such a hard worker through rehab.

I never felt hopeless throughout the cancer treatment — I felt scared, but I always had hope and faith that God and the amazing medical teams would see him through it. But I think of trying to get my son the care he needs without access to quality insurance and health care, and I feel hopeless. I feel like I’m going to fail him because no matter how hard I work or how much we earn, I won’t be able to do what I’m supposed to as a parent to help him stay healthy and heal and thrive. It kills me to even write that.

We barely — barely — made it through pediatric cancer even with good insurance, the ACA protections, sympathetic employers, and an amazing support system. I remember meeting parents who couldn’t stay with their child in the middle of a round of chemo because they couldn’t afford to miss work. I remember meeting families who couldn’t access second opinions for their very sick kids. That’s awful, and it shouldn’t happen in this country.

Alicia, Washington State

My son is “worth” a conservative $600,000. This is the estimate of all of his surgical, hospital stay, appointments, specialists bills. He was born with transposition of the great arteries along with a few other complications. TGA is a congenital heart defect — 1 in 100 babies are born with some type of CHD.

Many if not all of these children need surgery (in some cases multiple surgeries), will need to be followed by a cardiologist for their entire life, and require medications to stay alive. My family is extremely lucky because we live close to a children’s hospital and they help us with the costs as much as possible.

The new GOP bill is terrifying to me, a mother who has a high-medical-needs child. We are a single-income family and we are lucky to have enough to live, but every time we need to take our son to a doctor it’s hard to ignore the nagging questions: the cost, will insurance cover this, what will we have to pay?

There are so many families already struggling and worried about going to the doctor. They are families that do not have a choice about getting medication to keep their baby or child alive. There are millions of us out there trying our best to take care of our children while the government is trying to take some of that ability away.

Sara, Pennsylvania

This summer my 11-year-old daughter, Freida, has an in-patient clean-out, which might lead to a diagnosis for her gastrointestinal issue? Hopefully. Whatever it is, it is added to her growing list of diagnoses — idiopathic anaphylaxis, adrenal insufficiency, Tourette Syndrome, OCD, ADHD, multiple learning disabilities including dysgraphia and dyslexia. A list that costs serious money.

This new bill takes away protections on employer-provided health-care plans. They might not have to cover the essential services, and they could bring back annual and lifetime caps. Freida’s pharmacy bill alone monthly is thousands when you look at what insurance is covering. Add onto that all the testing, doctor’s visits, ER visits, and hospital stays. Don’t forget the therapy! It all adds up.

Once she hit her cap, we would not be able to even come close to affording her treatments. That alone is thousands and thousands. Without the treatment her body would go back to constantly reacting to her environment. I’ve been stocking up on EpiPens. Once we run out, we’ll have to ask — food, roof over our heads, or keeping her alive? Would giving up everything else even be enough? And once we run out of EpiPens, what do we do? She’s a beautiful 11-year-old who has so much left to do. Through all of this, she collected thousands and thousands of Chanukah cards for U.S. troops. She plans to work with Philly UP this fall, registering people to vote and educating people on why it’s important.

How do you tell your child,I am sorry, some politicians just didn’t care and others fought but couldn’t win”? How do you tell them,I am out of the meds that keep you alive, I am sorry”?

*Interviews have been edited and condensed, and names have been changed throughout.

7 Parents Scared About the Republicans’ Health-Care Bill