The livelihoods of an estimated 24 million Americans — with real challenges and real families — are at stake with even the smallest of tweaks to the Affordable Care Act. Their stories deserve to be told.

Here are five of those powerful stories that show what's at stake, should the Affordable Care Act be repealed.


Was he seeing his son for the last time?

“Something’s wrong with Noah.” I’ll never forget those words. My wife had said them, holding our rigid son in her arms, as we prepared to head out to the farmer’s market on a Saturday. Our 7-month-old’s lips and hands — so tiny and fragile — had turned blue.

We rushed him to our pediatrician. In the waiting room, Noah had a seizure. They told us to go to the emergency room immediately, so we sped across town. There, he began seizing again. As they were finally taking him to his own room — we’d been waiting 20 minutes for a bed — Noah had the most violent episode yet. They administered emergency meds in the elevator. I remember seeing his eyes roll back in his head. It was horrifying.

Photo courtesy of Geoff Todd.

That was the day Noah was diagnosed with pediatric epilepsy. It came out of nowhere. Everything had been picture-perfect up until then. ICU stays and ambulance trips became increasingly normal, as we struggled to pinpoint which prescriptions would make the seizures stop. I've watched our son on a ventilator, wondering whether or not I was seeing him for the last time.

Things took a big turn for the worse when Noah was 5: I lost my job and the insurance that came with it. I found a new job, fortunately, but the insurance provider denied coverage for Noah. He had "pre-existing conditions," they argued and disqualified him from care.

We began drowning in debt from the medical expenses. We almost lost our home. It felt like every single penny went toward making sure Noah was going to be OK. Should we give him medicine or food? That question haunted us. People say, "Well, you can go out and get a second job," but really, you can't — not when your son requires that level of around-the-clock care. I'm not exaggerating when I say my wife and I haven't taken a vacation together in the past 10 years.

Photo courtesy of Geoff Todd.

In 2011, we found relief: Noah was covered under the Affordable Care Act's Medicaid expansion in Oregon. It felt like coming up for air for the first time in years.

It felt like a chance to exhale.

Now Noah, who turns 10 in August, has the care he needs. Paying for his medications and therapies (kids with autism can need a lot of extra attention) are much more manageable. He’s had two major surgeries too, and I have no idea how we possibly could have footed the bill, had it not been for Obamacare.

— Geoff Todd, as told to Robbie Couch

They lived in fear, wondering if they'd lose their daughter.

Two years ago, my daughter Caroline, 18 months at the time, had a visit to the pediatrician to clear up persistent ear infections. During the checkup, the doctor heard a heart murmur; her heart was enlarged and working too hard. Our pediatrician sent us to a cardiologist who gave Caroline an echo, kind of like a sonogram of the heart. That day, she was diagnosed with idiopathic pulmonary arterial hypertension. It’s incredibly rare.

Caroline is truly one in a million.

Photo by Collin Ritchie, via Kristi Hammatt.

When Caroline was first diagnosed, we lived in fear, wondering if we’d lose her. We’d celebrate each birthday and milestone like it might be our last.

There’s no cure for Caroline, but there is a life-saving drug that’s reversed many of her symptoms. It’s called Remodulin, and Caroline receives a 24/7 infusion of the drug thanks to a backpack with a small pump inside. And, yes, it’s truly 24/7. She wears the backpack to sleep, to dance class, in the bathtub, even to swim with her friends.

Drugs like Remodulin that treat such rare diseases have little chance to be profitable, which means pharmaceutical companies offer them at exorbitant prices. Caroline’s Remodulin protocol is $200,000 a year. There are no competitors and no generic version. This is our only option.

Luckily, we have health insurance through my husband’s employer. When we tell people we pay a $6,000 deductible, and we meet it on Jan. 1, they nearly pass out. But it beats the $200,000 alternative.

Now, we have hope. We’re confident Caroline will dance in her June recital. We’re confident she’ll start pre-K this fall. And we have a drug, a very expensive drug, to thank. While we don’t have insurance from the marketplace, we are wholly invested in preserving the Affordable Care Act.

Before the ACA was established, many insurance plans had yearly and lifetime caps. If these caps return, our family will likely hit the lifetime limits of a premium plan within four to five years. My husband would have to find a new position and a new insurance carrier, or we would lose everything to save our little girl.

My family stands with every man, woman, or child who has looked a disease in the face and told it, “I WILL WIN!”

I won’t go back to living in fear. It’s time to fight. I’m considering a House or Senate run as early as 2018. It's not always easy for me to be an advocate like this, but it’s my duty to speak out and support affordable, comprehensive care — not just for my daughter, but for everyone.

— Kristi Hammatt, as told to Erin Canty

She still wonders if she'll get to watch her kids grow up.

Even after two “clean” mammograms and an inconclusive ultrasound, I knew something wasn’t right. Thankfully, my radiologist was persistent. Three days after Christmas, she performed a biopsy. I asked her during the procedure, "Be honest with me. How concerned are you?"

She didn’t hesitate. "I'm very concerned. There is a type of breast cancer called invasive lobular carcinoma. It's sneaky because on mammograms, it just looks like dense breast tissue." She did the biopsy and the next day I got the call — breast cancer.

The active phase of my treatment felt like a lifetime. My tumor was nearly the size of my entire breast. I had 16 rounds of chemotherapy, then underwent a bilateral mastectomy, suffered multiple infections, followed by 33 rounds of radiation. Last fall, I started a six-month course of oral chemotherapy, which I’m about to complete. Soon, I’ll require daily tamoxifen or some type of hormone-blocking therapy for at least the next 10 years to minimize my chances of the cancer coming back.

Photo by Laurie Merges, used with permission.

As scary as cancer is, I was one quick decision away from a very different outcome.

Months before my diagnosis, I was laid off. As a single mom, all three of my children were on the health insurance plan I had through my employer. I was especially concerned how the interruption in care would affect my son. He’s on the autism spectrum, and while he’s considered “high functioning,” I wanted to continue things like his behavioral therapy.

I applied for Medicaid for my kids and learned I was eligible as well — thanks to the Medicaid expansion in Ohio made possible by the Affordable Care Act. While I’ve always been pretty healthy, I signed up as a safety net until I found another job.

That decision literally saved my life. Today, I'm classified as "no evidence of disease." It’s great, but I’m not out of the woods.

When the conversation about repealing the Affordable Care Act began, I was scared out of my mind. I worried about my current treatment; as a cancer survivor, I now have a pre-existing condition. Would I be able to get coverage again? Not to mention my son who has a pre-existing condition with his autism diagnosis. What about his future?

Sometimes I look at my children and wonder if I’ll get to watch them grow up. My fiancee and I are starting a life together. How much time will I have with her? There are so many question marks.

This experience has turned me into an accidental activist. It’s frustrating to hear politicians talk about Medicaid like it’s a bunch of people who are lazy or don’t want to work. In reality, they’re trying to get by and doing the best they can.

— Laurie Merges, as told to Erin Canty

Warning: The following story discusses suicidal thoughts and feelings.

She used to think about jumping on the subway tracks every day.

Photo courtesy of Lydia Makepeace.

It's tough to think about it now, but I had plans to jump onto the subway tracks and end it all. I used the train all the time back in 2009, while I was living in New York City, and the temptation was always there. My therapist would make me sign a contract agreeing not to die by suicide before our next meeting every time I went to see her (just to give you an idea of where I was at).

I live with bipolar disorder and depression. It’s affected basically every aspect of my life: relationships, my grades in school, my ability to find (and keep) a job. I would get everything together, finally feeling as though I’m on top of it, then it’d all come crashing down overnight. My momentum, so to speak, would keep stalling.

I couldn’t get the right health care I needed. My mental illness meant I had a "pre-exiting condition,” after all, and before the Affordable Care Act, it was perfectly legal for insurers to slam their doors in my face because of it. While a charity helped cover some costs for therapy, I was paying out-of-pocket for my meds. It wasn’t cheap.

March 2009 was like living through a perfect storm, in a sense. I’d been recently diagnosed, my meds were actually exacerbating my problems, and I was drained from working two jobs and struggling to survive. I blamed myself for failing to stay in control.

Lydia told her story about living with mental illness on YouTube in January 2017, showing viewers why the Affordable Care Act is important to her.

To save money, I’d skip some days or only buy my prescription when I could afford to. I was still figuring out which medications would work best for me, too, and a mood stabilizer I’d been taking had the opposite effect, making me even more manic. Everything felt so out of control.

I had people who refused to give up on me, though — myself included. I got married around that time to a great guy who cared about getting me help. I eventually gained health care through his employer’s insurance provider. Because of the ACA, they couldn’t deny me care for my pre-existing conditions. I cover co-pays for my medicine, of course, but it’s manageable. If the ACA is repealed, we'll go backward when it comes to mental health care for people like me.

Now, I run my own business. I have the stability to follow through on projects. And I can build on that momentum I mentioned before in a way that wasn't possible pre-ACA.

— Lydia Makepeace, as told to Robbie Couch

Getting a full-time job could potentially bankrupt him.

I have a vascular malformation in my brainstem that bled when I was young. Over time, it slowly affected my ability to walk. Six years ago, just before I was set to finish my graduate program at Yale, I underwent a treatment to try to stall or stop that progression, but ended up completely unable to walk. It wasn't a sudden disability, as I've always been afflicted with it, but until that moment, I'd lived a pretty “normal” life.

Now I have a permanent disability and rely on a wheelchair for mobility. I can't drive, so any time I have to go somewhere, I have to arrange for somebody to help me or I have to go through public transit, which can also be tricky. Each day requires more planning than it used to.

John T. Image used with permission.

I can only can work so many hours in a day, so I have two part-time jobs. I teach at a local university and tutor chemistry out of my home. Neither of my jobs provides benefits, but because of my income, I take part in Medi-Cal, California’s Medicaid program. California is one of the 32 states that expanded Medicaid coverage as part of the Affordable Care Act.

The uncertainty is really scary.

When it comes to the future, I find myself between a rock and a hard place. I would like to seek full-time employment — hopefully with good insurance through my employer. But if the position was temporary (as many teaching positions are) or if my health prevents me from making full-time work, I would be out of a job, off Medicaid, and without health insurance. Without the Affordable Care Act, I may not be able to afford high premiums out in the market. Making too much money or getting a full-time job could potentially bankrupt me.

I wonder if it’s even worth trying to go out and earn more or seek full-time employment. The risk of losing my current coverage is too great. I don’t think the creators of this bill intended to effectively trap someone in poverty with limited options, but that’s what’s happening.

From personal experience, I know health care is never cut-and-dried. But regardless of a person’s situation, no one’s ambition should be limited by the looming threat of an accident, illness, or medical condition. None of us voted for that.

— John T. as told to Erin Canty

Connections Academy

Wylee Mitchell is a senior at Nevada Connections Academy who started a t-shirt company to raise awareness for mental health.

True

Teens of today live in a totally different world than the one their parents grew up in. Not only do young people have access to technologies that previous generations barely dreamed of, but they're also constantly bombarded with information from the news and media.

Today’s youth are also living through a pandemic that has created an extra layer of difficulty to an already challenging age—and it has taken a toll on their mental health.

According to Mental Health America, nearly 14% of youths ages 12 to 17 experienced a major depressive episode in the past year. In a September 2020 survey of high schoolers by Active Minds, nearly 75% of respondents reported an increase in stress, anxiety, sadness and isolation during the first six months of the pandemic. And in a Pearson and Connections Academy survey of US parents, 66% said their child felt anxious or depressed during the pandemic.

However, the pandemic has only exacerbated youth mental health issues that were already happening before COVID-19.

“Many people associate our current mental health crisis with the pandemic,” says Morgan Champion, the head of counseling services for Connections Academy Schools. “In fact, the youth mental health crisis was alarming and on the rise before the pandemic. Today, the alarm continues.”

Mental Health America reports that most people who take the organization’s online mental health screening test are under 18. According to the American Psychiatric Association, about 50% of cases of mental illness begin by age 14, and the tendency to develop depression and bipolar disorder nearly doubles from age 13 to age 18.

Such statistics demand attention and action, which is why experts say destigmatizing mental health and talking about it is so important.

“Today we see more people talking about mental health openly—in a way that is more akin to physical health,” says Champion. She adds that mental health support for young people is being more widely promoted, and kids and teens have greater access to resources, from their school counselors to support organizations.

Parents are encouraging this support too. More than two-thirds of American parents believe children should be introduced to wellness and mental health awareness in primary or middle school, according to a new Global Learner Survey from Pearson. Since early intervention is key to helping young people manage their mental health, these changes are positive developments.

In addition, more and more people in the public eye are sharing their personal mental health experiences as well, which can help inspire young people to open up and seek out the help they need.

“Many celebrities and influencers have come forward with their mental health stories, which can normalize the conversation, and is helpful for younger generations to understand that they are not alone,” says Champion.

That’s one reason Connections Academy is hosting a series of virtual Emotional Fitness talks with Olympic athletes who are alums of the virtual school during Mental Health Awareness Month. These talks are free, open to the public and include relatable topics such as success and failure, leadership, empowerment and authenticity. For instance, on May 18, Olympic women’s ice hockey player Lyndsey Fry will speak on finding your own style of confidence, and on May 25, Olympic figure skater Karen Chen will share advice for keeping calm under pressure.

Family support plays a huge role as well. While the pandemic has been challenging in and of itself, it has actually helped families identify mental health struggles as they’ve spent more time together.

“Parents gained greater insight into their child’s behavior and moods, how they interact with peers and teachers,” says Champion. “For many parents this was eye-opening and revealed the need to focus on mental health.”

It’s not always easy to tell if a teen is dealing with normal emotional ups and downs or if they need extra help, but there are some warning signs caregivers can watch for.

“Being attuned to your child’s mood, affect, school performance, and relationships with friends or significant others can help you gauge whether you are dealing with teenage normalcy or something bigger,” Champion says. Depending on a child’s age, parents should be looking for the following signs, which may be co-occurring:

  • Perpetual depressed mood
  • Rocky friend relationships
  • Spending a lot of time alone and refusing to participate in daily activities
  • Too much or not enough sleep
  • Not eating a regular diet
  • Intense fear or anxiety
  • Drug or alcohol use
  • Suicidal ideation (talking about being a burden or giving away possessions) or plans

“You know your child best. If you are unsure if your child is having a rough time or if there is something more serious going on, it is best to reach out to a counselor or doctor to be sure,” says Champion. “Always err on the side of caution.”

If it appears a student does need help, what next? Talking to a school counselor can be a good first step, since they are easily accessible and free to visit.

“Just getting students to talk about their struggles with a trusted adult is huge,” says Champion. “When I meet with students and/or their families, I work with them to help identify the issues they are facing. I listen and recommend next steps, such as referring families to mental health resources in their local areas.”

Just as parents would take their child to a doctor for a sprained ankle, they shouldn’t be afraid to ask for help if a child is struggling mentally or emotionally. Parents also need to realize that they may not be able to help them on their own, no matter how much love and support they have to offer.

“That is a hard concept to accept when parents can feel solely responsible for their child’s welfare and well-being,” says Champion. “The adage still stands—it takes a village to raise a child. Be sure you are surrounding yourself and your child with a great support system to help tackle life’s many challenges.”

That village can include everyone from close family to local community members to public figures. Helping young people learn to manage their mental health is a gift we can all contribute to, one that will serve them for a lifetime.

Join athletes, Connections Academy and Upworthy for candid discussions on mental health during Mental Health Awareness Month. Learn more and find resources here.

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