It has been three years since I co-founded Little Lobbyists, a family-led group advocating for children with complex medical needs and disabilities.  We formed because the health care that helped kids like my daughter Xiomara survive and thrive was under urgent threat.  Along with an incalculable army of organizations and advocates, we fought back and won.  I will never forget being outside the U.S. Capitol in the middle of the night with Xiomara, surrounded by hundreds of people, when the “skinny repeal” of the Affordable Care Act was defeated by just three votes in the Senate, thus (momentarily) saving our access to health care.  I was relieved. While I celebrated that night by hugging my friends and joining in some of the crowd chants, I also knew the fight wasn’t over. 

Unfortunately, I was right.The threats to the Affordable Care Act (ACA) have been non-stop and have come from every angle with long-lasting damage through the courts, ongoing Congressional repeal efforts, harmful regulations, and a proposed budget that cuts funding to life-saving Medicaid programs.  Without the ACA, 20 million people would lose their coverage, 135 million Americans with pre-existing conditions would lose their protections, and 17 million would lose the coverage they got through Medicaid expansion.

I think about what all this means for Xiomara.  She just graduated from Kindergarten and turned six recently, two milestones that I prayed for but was never guaranteed.  With access to quality care (and a bit of luck), she has come a long way since spending the first five months of her life in the Neonatal Intensive Care Unit.  Xiomara was born with chronic, complex medical conditions affecting her airway, lungs, heart, and kidneys.  She uses a tracheostomy to breathe, a ventilator for additional respiratory support, a feeding tube for all of her nutrition, and a wheelchair to explore the world around her.  

While I am thrilled that Xiomara is thriving today, I am also worried because the access to medical care that has kept her alive is still under threat.  After failing to repeal the ACA in Congress, Trump and Senate Republicans have relied on the courts to do their dirty work for them.  President Trump made good on his promise to appoint judges who would overturn the ACA, and we watched Brett Kavanaugh, a nominee with a hostile record against those with pre-existing conditions and people with disabilities, get confirmed to the U.S. Supreme Court despite massive public opposition.  A federal lawsuit in Texas worked its way up to the U.S. Supreme Court, and we currently await the fate of the ACA. 

In the midst of a pandemic, the GOP-controlled Senate has likewise continued to confirm lifetime appointments for anti-ACA judges like Justin Walker and Cory Wilson.  These judges — some of them as young as 36 years old appointed to the federal bench for life— have the potential to make a lasting and devastating impact on Xiomara’s life.

As we celebrate the third anniversary of the defeat of the skinny repeal vote, we are also commemorating the 30th anniversary of the Americans with Disabilities Act and the 55th anniversary of Medicaid. These laws have made the difference in quality of life for so many, just as the Affordable Care Act has for my daughter.

And just like we did that night three years ago and every day since, we need to continue to fight back to protect our health care.  Please think about the courts, the ACA, Medicaid, health care, and my daughter Xiomara when you vote this November.

[IMAGE DESCRIPTION: photo of four Little Lobbyists families and two service dogs sitting on the ground in front of the U.S. Supreme Court steps]

Angela Eilers and her family

I’m a mother of three, living in sunny southern California. I shuttle kids to soccer practice and ice skating lessons. I also worry every day about my children’s access to health insurance. My daughter, Myka, all of ten years old, has accrued over $500k in medical costs, most of these in her first year of life. Myka was diagnosed with an undetected congenital heart defect (CHD) days after her birth. She underwent two open heart surgeries before her first birthday. She will forever be labeled as a patient with a pre-existing condition. Did I mention she’s only 10? 

Myka was diagnosed with her heart defect in September of 2009, just months after the Affordable Care Act (ACA) was introduced in Congress. I watched some of the coverage while in her cardiovascular ICU room after her first open heart surgery when she was just three-and-a-half months old. Even before we knew we had a child with a serious pre-existing condition, I had supported the bill vehemently. A CHD diagnosis was by far the most frightening news we had ever received. Her second surgery was at 11 months old. Surgery never cures a child with CHD. She will live with this condition for her entire life. 

Myka is an otherwise healthy girl. She loves school, her friends, ice skating, and American Ninja Warrior. But. Underneath her tough exterior, she will be monitored by cardiologists for the rest of her life. She will require yearly echocardiograms to monitor the blood flow coming in and out of her heart. 

The ACA created consumer protections for every American, young and old. Before the ACA, people faced lifetime caps and were often denied coverage for having a pre-existing condition, including conditions like Myka has. I was relieved when the ACA passed Congress and was signed into law by President Barack Obama in 2010.

The ACA cleared the way for us to become entrepreneurs in 2013. At the end of 2012, due to the economic downturn, my husband was laid off from his job as a research analyst, and his job provided our health insurance. Before the ACA, employer-sponsored health care had chained us to jobs working for other people. Because we knew the ACA insurance exchanges would begin opening in states by October 2013, we decided to take the leap to start our own business. The ACA meant that, despite having a child with a serious pre-existing condition, we knew would not be denied coverage. 

So we started our own company: Eilers & Krejcik Gaming LLC. It wasn’t all easy. First, we had to use COBRA to extend my husband’s employer-based health plan, and the ACA plan we needed was expensive. But we had no choice: Having access to healthcare was as vital to our family as a roof over our head or food on our table. The ACA doesn’t just provide peace of mind for our family. The ACA helps 135 million other individuals and their families living with pre-existing conditions or chronic illnesses that would bankrupt them. In my congressional district alone, 319,000 people live with a pre-existing condition.

It’s up to parents like myself to protect the health care of children like mine. But we cannot do it alone. We need everyone’s help. The health and well-being of millions of people hang in the balance. I’m a mother doing everything I can to protect my child. I’m no different than any other parent who would move mountains to protect their child. Trump’s effort to overturn the ACA is an egregious assault on the health of the most fragile. We must all hold the Trump Administration and elected officials accountable for this potential loss of health care. 

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Angela Eilers lives in Yorba Linda, California, with her family. She is a member of Little Lobbyists.

Currently, Texas Governor Greg Abbott and Attorney General Ken Paxton are fighting to overturn the ACA. Governor Abbott, a pro-life politician, has said, “Texas has become the national leader in defending life. As governor, I will fight for every child to have a chance at life." But as I sit with my son Raphael, who has complex medical needs, I wonder—how is Texas defending life when it attempts to pull the ACA and Medicaid protections away from my son and many others like him?

I remember my pregnancy with Raphael: At five months pregnant, my husband and I are staring at a whiteboard. A world-class doctor has just finished writing our baby’s health issues on the board. He tells us it’s time to make a tough choice, and that if I were his daughter, he wouldn’t let my baby be born. We disagree—this baby is loved more than anything. We had tried for years to get pregnant, and had dreamed of the love we would show our baby. I dreamed of baby snuggles and laughs, and watching our child grow.

Fast forward eight months. My son, Raphael, has survived three months in the NICU, two surgeries, and countless medical procedures. We adjusted to life in the NICU, and I learned how to take care of my son’s medical needs. Every month on his “monthday” we would throw little NICU parties, complete with party hats and banners. Each night, we’d read him books and cuddle him to sleep. I learned infant massage and used oil to massage his tiny body.

We’d been home for a week when I woke up to see him lying limp and cold. In the scariest moments of my life, I performed CPR. Now I was at a different children’s hospital, in a trauma room, watching swarms of medical professionals surround my Raphael’s tiny, lifeless body as they worked to bring him back. The doctor told the team to work faster, that “this baby isn’t responding.” My heart nearly stopped—all I wanted was my son, alive.

For weeks after that horrible day, we sat by our son’s bedside, watching him slowly improve and stabilize. At this point, our medical bills (despite my excellent private health care plan) were skyrocketing—we received our first bill, for thousands of dollars, and panicked—how would we pay this on top of the hundreds of dollars we had been paying for weeks to park at the hospital?  When you are inpatient, everything is more expensive: food, gas to get to the hospital each day, and all of the specialists. Because my pregnancy had been so complicated, we had already spent all of our flexible spending account funds.

At some point in those hazy hospital days, a social worker helped us walk through the paperwork so our son would qualify for a Medicaid waiver—state-federal secondary insurance coverage expanded in our state as a result of the ACA to protect more little Texans with complex medical needs. Without the ACA and Medicaid, my son’s life and our livelihood would be at risk. Raphael needs monthly shipments of medical supplies and multiple therapy visits per week, which are covered by Medicaid. He gets sick easily, and when he does, he tends to get REALLY sick. Those additional health costs are covered. Medicaid provides home nursing that keeps Raphael healthy and allows my husband and I to work at jobs that matter to us and provide for our family.  

Raphael is now three. He loves playing soccer, going to swim class, and convincing his dad and me to take him to Chuck E. Cheese. He is supremely inquisitive (he’s teaching himself Spanish!) and incredibly loving; he adores his little sister and loves to shop with his shopping cart. Without Medicaid, Raphael would not be the thriving toddler he is today.

Both the ACA and Medicaid protect Raphael’s right to health care. Due to his complex medical needs, Raphael would not qualify for health insurance without the ACA’s guaranteed coverage of pre-existing conditions. Without the ACA and Medicaid, Raphael would have maxed out his lifetime health care cap long before his third birthday.

So, I sit with Raphael and wonder – how will he, and so many children like him, continue to survive and thrive if Governor Abbott and Attorney General Paxton succeed in taking away his health care rights? 

[image description: Mom Gillian with Raphael and his baby sister and dad seated together in front of a window]

My 14-year-old son Victor is a really social guy. He loves baseball, arts & crafts, the pool, and listens to any music that helps him get his groove on, especially the Beastie Boys, and Johnny Cash. 

Yet worry has engulfed me, I’m on edge and uncertain for Victor’s future because he also has complex medical needs and disabilities. A lot of things interrupt my sleep at night … these days, anything to do with how things shape up or slim down in American health care. Health care really stresses me out! 

Managing Victor’s medical care has been an obstacle course since 2005, when my husband and I began our journey with Victor. In and out of the hospital, we had to learn about and cope with Vic's daily seizures – at one point 50 or more per day. 

If that weren’t stressful enough, there were his medical bills. During those early years, at the bottom of every insurance “Explanation of Benefits” form, the number showing how close we were to Vic’s lifetime limit kept increasing (by age 3 he reached over $600,000). I’d point this out to my husband, who’d try to keep me calm. At that time we had a decent employer insurance plan, but I still had to fight regularly with our insurance company over denials. Back then, we had no private duty nursing, we paid thousands of dollars out of pocket each year, and I had to itemize EVERYTHING so we could claim our medical costs on our taxes to recoup something (By the way, the Republican’s 2018 Tax Bill will no longer allow medical deductions after 2019!).

Vic's care became more complicated over time. We routinely visited specialists searching for answers, I took Vic to multiple therapists, and I enrolled him in a birth to three early intervention program, which required my attendance. Victor's multiple medical procedures added up, including the feeding tubes he still needs today. 

When Victor was 4 years old the Affordable Care Act (ACA) passed. I cried tears of joy, the relief I felt was so real! The ACA meant that my son's life mattered: that his medical care would not be denied by insurance companies because he had multiple pre-existing conditions. The ACA told every disabled person that they mattered, too. States have had the option to expand Medicaid since the ACA passed, but it took awhile for them to fully grasp the importance of making that leap.  Today. many states with a high uninsured rate have begun to reap the benefits (like keeping hospitals open) of Medicaid expansion .  

Vic is now on a Medicaid waiver in our state of Texas. This waiver covers much of his care, including private duty nursing that most employer-based insurance does not cover. However, when Vic turns 20 he will age out, and in Texas - which still chooses to turn away from Medicaid expansion – Medicaid waivers for adults do not cover private duty nursing, thereby creating another layer of worry and uncertainty for Vic’s future. 

Even worse, Texas is suing the U.S. Government over the Affordable Care Act. If the state prevails in Texas v. U.S., the ACA will be declared unconstitutional everywhere. No health organization agrees with an ACA repeal, and neither Texas nor congressional Republicans have a replacement plan. Our health care protections will simply be gone.

I know the ACA is not perfect. Despite subsidies, insurance policies are expensive – in large part because President Trump has refused to defend or uphold the ACA, resulting in fewer sign-ups and forcing many companies to leave the exchanges and driving up costs for everyone. 

But the ACA is more than a group of health insurance policies. The ACA represents the ideal that every American should have health care coverage, regardless of pre-existing conditions or disability. The ACA put an end to lifetime caps, provides emergency care without pre-authorization, and expanded Medicaid – all of which are essential for families like mine! 

The truth is that, regardless of who takes office after the 2020 Presidential campaign, even in a best-case scenario it would take years to transition to a universal health care system. The issue we should all care about most TODAY is the lawsuit in court now; EVERY American's health care future is on the line! 

I feel the heavy weight of the Texas v. U.S. lawsuit. I know my son's life and our family’s financial future are on the line. Today, I will do my best to keep it together, to focus on what we have now, and to hope and to pray that the Texas lawsuit is thrown out of court, or ruled in favor of preservation of the ACA. Afterall, the Affordable Care Act is all any of us has to #ProtectOurCare!

Victor and his dad embrace during a recent hospital stay.

The Author’s son, Robert.

The spring of 2010, when the Affordable Care Act was signed into law, was preceded by a hard winter for my family. In February, two major snowstorms hit the DC area where we lived within one week, dropping thirty to fifty inches of snow. They called it Snowpocalypse. During the height of the second storm, I slipped out a bedroom window onto our long porch roof, afraid it might collapse from the weight and knowing we couldn’t afford to repair it.

This was the accessible home we’d built for our son Robert, a medically complex child disabled due to an undiagnosed disease. We’d been chasing a diagnosis and treatments for him for 12 years. I bit the shovel in deep and pushed the heavy snow forward, watching it cascade into piles on the front lawn. Snow clung to my eyelashes, my vision spotted with haloes from the street lights. As fast as I shoveled if off, it accumulated.

Struggling with health insurance in the days before the ACA had been much like shoveling my way through an unending financial storm. My family had had 6 different health insurers in those dozen years, always one step ahead of bankruptcy by medical expense, whether due to annual caps, lifetime caps, or the tens of thousands of dollars we’d spent on co-pays, medications, uncovered items, and other out-of-pocket expenses. I’d taken a job I didn’t really want as an editor for a federal advisory committee, just so we could have the golden ticket: federal health insurance.

But I wanted more: The ability to live how I wanted to live. The freedom to do what was best for my family. That meant choosing where we wanted to live, pursuing work for the love of the job, not the health insurance tied to it, and knowing my son could be insured even if a good work opportunity didn’t offer health benefits.

During the 2008 campaign, Obama had promised to deal with our country’s health insurance crisis, yet during the summer of 2009, his opposition had gotten the upper hand: health insurance reform meant no one would be able to choose their doctor and the federal government would establish death panels. I’d watched a town hall meeting at which a senator from Oklahoma heard a sobbing woman describe her brain-injured husband’s eviction from a nursing home when his benefits expired. He had a feeding tube, and she was now expected to retrain him to drink and eat on her own. The senator replied, What’s really missing here is the failure of neighbors to help others who need our help. The audience burst into resounding applause.

Self-reliance, rather than government hand-outs, was the yardstick of freedom that audience understood. I’d learned self-reliance growing up in 1970s Vermont, when the state was still staunchly conservative. That mentality from my youth had me futilely shoveling snow off my roof in the middle of the night, without considering how easily I might fall off. We were always in danger of falling off and losing everything.

Our neighbors had helped us as they could, but I relying on them would be just another form of dependence. None of them had the money or expertise it took to pay for my son’s healthcare or assist with his home medical needs.

Robert’s illness taught me that self-reliance and freedom were not the same thing. If you’re free you can go anywhere and do anything, right? But you’d better not have anyone depending on you. Janis Joplin sang, “Freedom’s just another word for nothing left to lose,” yet in my life, I’d had everything to protect and keep. She and Bobby McGee were drifters, criss-crossing the U.S. That’s not the type of citizenship most of us experience, even if we admire its free-wheeling nature.

Freedom and self-reliance are a delicate balance. There are few opportunities without a solid base of support: some self-reliance, some neighborly, and, yes, some from the government. It is our government; it is we the people who form it. Our government can provide a platform for each of us to seek freedom. Let me put it this way: If I had certainty with healthcare, then I could take other chances. Then we could chase a better way of life—the American dream.

That spring of 2010, the ACA proceeded to a final vote, and Speaker Pelosi struggled to keep her caucus in line. Bart Stupak of Michigan was the final hold-out. In his floor speech, Stupak said that he wanted women to know that if they had a child and that child had medical problems, he or she would be entitled to medical care. I cried. Stupak understood what my family had gone through, all that long winter. Freeing my child meant freeing me and my family.

The ACA remains under attack today, snowflake after snowflake piling up and threatening to keep all of us in a permanent winter. Let’s not allow the critics to snow us in. Let’s move forward, once again, to a new spring of improved healthcare-for-all, so we can each manage our competing responsibilities and free-wheeling dreams.

I’ve been involved in healthcare advocacy work since I was 14 years old, eventually pursuing a Masters in Public Health. Most of my spare time is spent working with patients and families with chronic illness, but you can also find me binging home design and cooking shows on Netflix, and enjoying Brazilian food.

I was born with a rare genetic disorder called Marfan syndrome. I spent most of my first two years in the hospital having surgeries, but it would be several years later before my parents learned what the cause of my difficulties was. I have a list of specialists and medications. Without health insurance I could not afford the tests and pharmaceuticals needed to keep my heart as healthy as possible, let alone the periodic necessary surgeries (10, to date) and hospitalizations.

My husband and I are blessed to have 4 children, who are between the ages of 2 and 10. Between all the kids we’re involved in musical theater, cub scouts, and playing dress up. One of our children is autistic. One inherited my genetic disorder. One has a brain injury from in utero. I can’t work because of the time I spend in therapists’ and doctors’ offices with my children. Since the start of this year alone one of my children has had 2 ER visits and a multi-day hospitalization.

In 2013 my mother was about to start a new job when she started having dizziness. Less than week a later we learned she had stage 4 cancer as she was whisked to emergency brain surgery. I was with her when she woke up and the first thing she did was ask for a social worker to come and tell her whether she had healthcare coverage.

I don’t want to live in a country where someone’s first thought upon waking up from surgery is whether they’re going to go bankrupt from their care. I cried the day the ACA was passed because it meant a safety net for my family: no lifetime caps on medical coverage, and the guarantee of being able to get health insurance even if something were to happen to my husband’s job.

Unfortunately, not all members of Congress agree with me. Right now, I’m worried about the nomination of Chad Readler to the Sixth Circuit Court of Appeals. As a Justice Department official, Readler led the anti-ACA effort on behalf of the administration, and filed a legal brief arguing that the Affordable Care Act’s protections for people with preexisting conditions were unconstitutional. He wants to dismantle the ACA and a vote to confirm him is a vote against my family and millions of families like mine. I can’t let this happen. That is why I participated in a press call with Senator Brown yesterday and shared my story.

Right now, there are 11 million Ohioans. 4.8 million of us live with pre-existing conditions that range from diabetes and asthma to genetic disorders and cancer. Without the ACA, that’s 4.8 million of us here alone that may have to decide between going bankrupt from care, and going without care. If we reinstate the lifetime cap, what happens to people like my son and I, with complex medical conditions? I have friends whose children would have hit that cap by their first birthdays. What happens to the young adults trying to go to college or start a career that lose their health coverage under their parents?

If we lose these protections, people will die. It is as simple and horrific as that.

Whether or not my family loses these protections literally keeps me awake at night. I want our elected officials to remember that we cannot predict when we will need to access the healthcare system and so access to healthcare is an issue that is going to affect us all.  Congress needs to stop these attacks on people with pre-existing conditions and guarantee essential health benefits, lower the cost of care and prescription drugs, and strengthen Medicare and Medicaid.

Please join me in opposing Readler’s nomination by contacting your members of Congress and requesting them to do the same. Thank you.

The author, Maya, and her daughter.

“Hello, my name is Sandra,” I recorded onto the senator’s voicemail as my own voice cracked. “I am calling you from my son’s Make-a-Wish trip at Disney World.” The tears started down my face. “I beg you to not repeal the Affordable Care Act.”

This was January 2017, just a week week before the inauguration of the 45th President of the United States. The timing felt ominous. We had watched the 2012 election returns from our son’s hospital bed, back when his tracheostomy tube had just been removed and a pacemaker was still protecting his heart. We knew that if our son were fortunate enough to leave the hospital alive, the outcome of the election would determine the fate of his potential for health insurance with a pre-existing condition and without lifetime limits.

Our son’s disease—a horrific and unpredictable autoimmune encephalitis that, like many other diseases, can strike anyone at any age and at any time—came on fast and furious. He went from perfectly healthy to critically ill within a week’s time. His first hospitalization was fifteen months long. The disease caused multiple acquired disabilities, the need for near round-the-clock nursing care, several medications, a wheelchair and other durable medical equipment. While his prognosis was uncertain, his spirit and grit were strong. The mere fact of our trip to Disney World felt like a miracle.

Make-a-Wish was incredibly responsive to his unique needs. Just weeks before our trip, my son stunned us when he regained his ability to walk with a gait trainer. I mentioned this exciting new development to the Make-a Wish staff member who coordinated our trip and she quickly rented a gait trainer for him to use at Disney. When she informed me that “It will be in your villa when you arrive,” I nearly dropped the phone. My son, the bulk of whose childhood has been spent in hospitals and at medical appointments, would be walking around the Magic Kingdom and, just like magic, the durable medical equipment needed to make that possible would appear!

It’s usually much harder. Even with relatively decent insurance, tenacious parents, and extraordinary medical providers, getting my son what he needs is a constant battle and soon after that Disney trip, the administration’s repeated attempts to repeal the Affordable Care Act and severely cut Medicaid made me fear for my son’s life. Should he need to change insurance for any of the predictable reasons, the likelihood that his coverage could be legally denied or prohibitively expensive has increased with each profit-motivated tactic to derail his protection. Given the necessity for mandatory enrollment of healthy folk to compensate for the coverage of folk like my son, coupled with the role of a robust Medicaid program to cover what private insurance does not for people with disabilities, the Republicans have been intent on discontinuing his current level of coverage and care. My son's ability to live at home, frankly to live at all, depends on the social contract between all of us.

Now the 2018 midterms are upon us and I fear for what lies ahead in health policies if the senators and congresspeople who voted against protecting my son’s healthcare remain in office. Already the administration has shortened the ACA enrollment period, allowed junk insurance policies to compete with more robust coverage, allowed non-protection of pre-existing conditions, launched a lawsuit to further undermine healthcare protections, failed to enforce current policies on which people with complex illness and disabilities rely, and misrepresented their healthcare policies and platforms while campaigning. Parents of children with medicalized lives know how to read the fine print of such policies and we know what puts our children’s lives at risk.

My mind returns to that moment at Disney, when I was taking time from my son’s Make-a-Wish trip to call the elected officials I had hoped would break with their party and protect my son. Now it is time to vote them out.

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Today’s election matters for family caregivers of children with medical complexity in unprecedented ways. At Little Lobbyists we have leveraged our collective power to protect our children in both our political processes as we also perform their day-to-day care. As November is National Family Caregiver Month, Little Lobbyists is partnering with the Who Lives Like This podcast to feature caregivers, just as we have featured our beautiful children over the past 100 days.

To kickoff off National Family Caregiver Month, Who Lives Like This features writer and caregiving comedienne Sandra Joy Stein. You can hear her episode on Who Lives Like This at http://bit.ly/NaFaCaMoPodcast.

People have been asking us this since 2014 when our second daughter, Lorelei, was born with Down syndrome. Immediately after she was delivered, she was whisked away to our Children’s Hospital for surgery to repair a blocked intestine and she spent her first weeks of life in the NICU. In her first two years, Lorelei had more scary medical diagnoses, needed additional surgeries, hospital stays, and therapies. Though the bills were high ($120,000 for one stay!), we had good insurance and were covered. We were okay, so while I appreciated the many kind offers, I didn’t reach out for help.

In the spring of 2016 things were going pretty well for us, until I started to lose weight without trying and had several bouts of gastroenteritis. My doctor ordered an ultrasound, and in June of 2016 I was diagnosed with renal cancer.

My left kidney was removed, and though the recovery was rough, I was lucky that no chemo or radiation were necessary. Once again, kind offers of help poured in.

“If there is anything you need, please let us know.”

We had out of pocket expenses, but didn’t have to risk losing our home to pay for the surgery. I worried about leaving my children without a mother, but I got the life-saving medical care I needed. When I didn’t feel well, I could see the doctor and take necessary medication without worrying about the cost. We had good insurance and I could take care of myself; so while I appreciated the kind offers, I didn’t reach out for help.

In winter of 2017 we discovered that Lorelei had life-threatening third degree heart block and needed a pacemaker. As Lorelei faced heart surgery and our family again faced a “new normal,” more kind offers of help poured in.  

“If there is anything you need, please let us know.”

But Lorelei survived, and thanks to our insurance we didn’t worry about the cost of heart surgery or the hospital stay, we focused on her. She was going to be okay. So while I appreciated the kind offers, I didn’t reach out for help.

In winter of 2018, Lorelei developed a cough that would not subside. Her doctor sent us to the ER and she was admitted to the hospital and diagnosed with RSV. We celebrated her 4th birthday with nurses and doctors at her bedside. Fortunately, Lorelei recovered pretty quickly and we were able to go home in a few days. Until, two weeks later, she was back in the hospital with pneumonia. Again, our friends and family stood by us.

“If there is anything you need, please let us know.”

I no longer sleep well during cold and flu season (which in Ohio lasts from September to May), and this year I was diagnosed with a rare and incurable neurological disorder called Cervical Dystonia, which causes excruciating neck pain (and is exacerbated by stress). But, when Lorelei has a cough for more than a few days, she can go to the doctor. She can also see the other specialists, and get the therapy, hearing aids, and additional surgeries she needs. I can also get treatment for my pain and monitor my cancer, so I’m able to continue caring for my family and working full-time.

Woven in between all the frightening diagnoses and unexpected hospitalizations are moments of joy, fun, and laughter. We are blessed with an abundance of love and fortune. Lorelei and I have both been saved by medical science, wonderful doctors, and access to affordable and necessary health care coverage. We have bills, but for now, we can afford to pay them. We have been able to focus on our family and haven’t needed to ask for help.

Until now. The Affordable Care Act, which protects people with pre-existing conditions – like myself and Lorelei – from being denied or charged more for coverage, or even completely cut from care by a lifetime max, is under threat by the party in power. Programs like Medicaid and Medicare are targeted for drastic cuts. If we don’t do something, in the very near future, I could lose the ability to care for myself and my family.

I am letting you know I need your help.

I need you to vote for lawmakers who will ensure ALL people have affordable and appropriate health care coverage. Our story is not an exception; we’re all one accident or illness away from needing health care. While illness may not affect you today, it surely affects someone you love. It affects people I love.

I need you to vote because our lives depend on it.

Like most couples, when we dreamed of having a child we dreamed about our child laughing, playing, growing up strong and smart, going off to college, having tons of friends, being part of a community, falling in love, and one day maybe starting her/his own family.  When we decided to have our first child, we were young, healthy, working parents who assumed we’d find great childcare and be able to continue our lives (although maybe a bit more tired than before) as we always have.

Our first child, Ryler, was born in June 2011.  He was full-term, but to our surprise, only about 4lbs and had a significant cleft lip and palate which prevented him from sucking. We spent several weeks in the hospital with him undergoing numerous tests from specialists to determine what other medical challenges he had, and learning how to feed him. We eventually discovered he has a genetic disorder none of the doctors had heard of, swallowing issues which required a feeding tube for a couple years, has a few heart defects, a bleeding disorder that required transfusions and causes excessive bruising and bleeding, is immune deficient, hearing impaired, has microcephaly (small head with abnormal brain development), seizures, significant intellectual disabilities, and he would require extensive early intervention and continuous therapies to learn what most of us take for granted – how to eat, walk, talk, hold things with his hands, etc. Today, he is followed by almost 15 medical specialists to manage his care.

After learning all this about our son, the dreams we had for him before he was born didn’t dissipate, but our focus shifted to understanding his medical issues and how to navigate our new world together. Our dreams may have changed a bit, but during those early days, and still today, the most important thing we want for our son is that he be given a CHANCE. We believe that everyone deserves one. We want Ryler to have a chance to develop to his fullest, to love and care for others and be loved and cared for by many, to go to school and learn, to have friends, play and laugh, and just be a kid.     

We were fortunate Ryler was born 15 months after the ACA (Affordable Care Act a.k.a “Obamacare”) became law.  Because of the ACA, we don’t have to worry about lifetime maximums within our private insurance or pre-existing condition insurance discrimination, so Ryler can have access to the many wonderful specialists who work with and believe in him. Thanks to our Medicaid waiver which helps our family cover things, like therapy, that private insurance doesn’t, Ryler has been given the chance AT LIFE we dreamed of.  

It is frustrating to us that many don’t realize how crucial affordable, quality medical insurance and programs like Medicaid are. Many people don’t appear to understand what they cover, how they protect the most vulnerable Americans, how close they themselves may be to needing ACA protections one day (if they don’t already), or how devastating it can be to go without.  Raising a medically complex child can be financially devastating, no matter your income level. Many families like ours need one parent to work in the home to care for their sick child (Ryler’s amazing Daddy in our case) and are down to one income; making health care costs even more of a challenge. Our private insurance and Medicaid pay for extremely expensive antibodies that protect Ryler from illness, his seizure medications, home nursing, and therapies. Medicaid even gives children like Ryler the ability to go to school with medical care in place, rather than being forced to teach him at home where he’d have little social interaction.

Today, Ryler is an extremely happy, strong, playful, spunky, loving seven-year-old.  He adores his family including his little brother, Reece and medical alert dog, Oaty.  He loves going to school and gives the best kisses. Ryler has proven many doctors wrong over the years and we’ve learned so much from him, simply because he was given the chance to be a little boy – to learn in an environment appropriate for him, and to receive crucial, life-saving medical care. As a family, we’ve been with him during countless medical procedures, surgeries, hospital stays, ICU visits, ambulance rides. We have even seen him near death after complications from procedures.  But one thing that has saved our sanity and allowed us to focus on caring for our sweet little boy is knowing he will always have the health care coverage he needs. If we don’t vote to protect our care in November, GOP leadership has said they will once again try to strip families like mine of that lifeline. Please be a health care voter and help kids like Ryler have the chance they deserve.

I’m conservative on some things and less on others. A true swing voter, a moderate. A Republican was as likely to get my vote as a Democrat —dependent on their voting history on issues important to me. Historically, I leaned more Republican than Democrat until last year, when the Affordable Care Act (ACA) came under fire and I became terrified that my son might lose the health care vital to his survival.

My son Jack is 7 and has a fatal genetic disease called Cystic Fibrosis. This disease is scary, profoundly expensive (just one of the 14 medications he needs to survive is $1,200 per month), excluded from life insurance policies, and fatal.

When Jack was born the full protection for pre-existing conditions provided by the ACA wasn’t yet in place. When he contracted MRSA (a very scary infection), I used up all my vacation time and FMLA to care for him and faced losing a job I’d held for 10 years, knowing my son’s disease made him largely uninsurable. I was terrified that if I lost my job, I’d also lose my son.

Fortunately, I was lucky. The CEO of the huge company I worked for had a heart. He learned of my dilemma and allowed me to work from home. What a relief that was! For 3 months I worked from home, feeling more secure, but still terrified. I’d experienced exactly how quickly my son could go from having all he needs – to having nothing at all. It wasn’t until the full protection of the ACA took effect in January of 2014 that I felt safe. For the first time since Jack was born insurance companies couldn’t discriminate against him by withholding coverage.

Others weren’t as lucky as I was. Their CEO didn’t save their job, their child was born, and died, before the ACA. In the history of health insurance in this country those of us with pre-existing conditions have only experienced 4 years of guaranteed coverage, and we’re already standing on the edge of losing it.

I am a mom fighting for her son’s right to live his healthiest life.

I speak from experience. I’m not a person raging from behind the safety of a keyboard, I’m not a person whose feelings are hurt easily, and I don’t make assumptions. I do speak in person with my politicians at every opportunity, and I actively seek those opportunities out. I educate myself before making any political decision (or post).

No candidate who voted yes on the Tax Bill that weakened that ACA or in favor of short-term “junk” insurance will get my vote. I am a #HealthCareVoter, my son Jack is a #LittleLobbyists, and Jennifer Wexton will get my vote over Representative Barbara Comstock, because Comstock has proven to me that she won’t protect us and she failed my son with her votes.

Many Republicans I’ve spoken with have argued that the Tillis Bill is the GOP’s answer to protecting pre-existing conditions. This is a half truth, at best. While the bill does prevent insurance companies from excluding people with pre-existing conditions all together, it does NOT require insurers to provide coverage for their pre-existing condition – or prevent their premiums from being far more expensive.

I used to be a swing voter that leaned Republican. But, now that the Republican Party has reduced rare disease tax credits, is not protecting people with pre-existing conditions, and moved (in my opinion) far too quickly on a decision about a lifetime Supreme Court Justice who could determine the future of health care in this country... the GOP has single handedly forced me to move steadily and solidly to the left.

My family is a working, lower middle-class family, with a Federal health insurance plan. Between now and December we will work hard to pay all of our 2018 medical costs, because typically by February 1, 2019 we will owe $9,000 again.

We participate in grants and medication coupons to help us, but because of the new accumulators payors introduced this year (our insurance is one of them) which don’t count coupons and grants towards our deductible or out of pocket max, we’re likely going to owe even more next year. Meanwhile the insurance company will receive our deductible twice – once from our coupons and grants, then again from us directly.

This week I started selling our things on Facebook to help cover our medical bills, which is normal for many families dealing with expensive illnesses, but was somewhat shocking to many of my friends who reached out with offers of help and crowd-funding.

While the offers were sweet, we respectfully declined. Crowd-funding Jack’s medical needs is not sustainable. Unless health care in our country changes, these expenses will continue to build for the duration of Jack’s life. The single biggest thing you can do to truly help families like mine, is VOTE for candidates who will protect access to affordable health care for everyone who needs it.

Submitted to www.regulations.gov/docket?D=CMS-2018-0015 April 19, 2018

Centers for Medicare & Medicaid Services
Department of Health and Human Services
Attention: CMS-9924-P

Little Lobbyists is an organization of families with one thing in common: we all have medically complex children requiring significant medical care.  Our mission is to advocate on behalf of the millions of such children across the country to ensure that their stories are heard and their access to quality health care is protected.  

America badly needs changes to health care laws and regulations that expand access to care and decrease costs; however, these changes must not come at the expense of necessary care and financial protections for vulnerable children and their families.  Unfortunately, that is just what the proposed rule would do. By allowing “short term” insurance plans for up to a year in length that would not contain basic protections provided by the Affordable Care Act – including the prohibition on discrimination against individuals with preexisting conditions and the prohibition of annual caps on medical care – children with complex medical needs across the country, and their families, will be harmed in multiple ways.  

As is the case with many medical conditions, parents of children with complex medical needs are frequently not in the position to know about and anticipate the care their children will need, through no fault of their own.  For such families, the protections afforded by the Affordable Care Act are literally life-saving. Children born prematurely, or with other complex medical needs, often require extended hospital stays with medical care billed into the millions of dollars.  The need for comprehensive medical care frequently continues long after they are finally discharged home. The protections in the Affordable Care Act ensure that insurance providers cannot deny coverage for medical care because their medical bills reach a certain threshold.  It ensures that they have access to lifesaving prescription drugs. It ensures that the preexisting conditions these children are born with will not prevent their ability to access care into the future.

The “short-term” insurance plans proposed in this rule eviscerates those protections.  Families purchasing such plans for health coverage, whose children subsequently encounter medical difficulties, will soon find these insurance plans to be worthless – failing to cover the specific, life-saving care their child needs, and taking coverage away completely if care becomes too expensive.  On top of the trauma and stress that comes with a sick child, these families will face financial ruin as well. While our focus is on medically complex children, this outcome is no less true for any individual who encounters unforeseen medical complications, be it through sickness or an accident.

The damage would not be limited to those families buying short-term plans created by this proposed rule.  For those families that remain in ACA-compliant plans to ensure they receive the care their child needs, the cost of insurance premiums would increase, leading to financial hardship – realities that the proposed rule explicitly concedes.  Once again, children and families who are most in need of care and financial protection will be the most negatively affected.

As we stated at the outset, America’s health insurance system needs fixing.  Access to care must be expanded so that all Americans can receive the care they require, and the cost of this care must be controlled so that financial hardship and bankruptcy due to medical care is reduced to a terrible relic of bygone days.  There are ways of meeting this vital goal. Americans demand it. Unfortunately, this proposed rule, which provides a path to less comprehensive care and higher medical costs for our nation’s most vulnerable, is a harmful leap backwards.

On behalf of the millions of children with complex medical needs and their families, we ask that the proposed rule be rescinded and replaced by one that truly sets access to comprehensive and affordable health care for all Americans as its cornerstone.