November: A Time for Epilepsy & ACA Awareness (by Laura Leeman)
Laura Leeman and her son Vic. [image description: Two people pose in front of a black & white background printed with the words “Avant Chamber Ballet.” A woman with short dark hair & a yellow print shirt stands next to a young man with short dark hair and glasses who sits in a wheelchair. The woman places her hand lovingly on the back of the young man’s head.]
We were in the middle of my son’s homebound Webex class when a sound stimulus triggered a seizure. Vic’s teacher could only watch as I suctioned him, pumped up his supplemental oxygen to four liters, leaned him back, and let him fall asleep. That's how a number of our classes end. Just prior to this, he was smiling and ready to participate in class.
Vic is currently 15 years old, and in his first year of high school. He has always been a very happy guy. His infectious laugh brings smiles to anyone near him. He loves all types of music and being outdoors, especially at the beach where he used to feel the wind on his face. Vic’s uncontrolled seizures went largely undiagnosed until last year, when he was found to have a rare genetic syndrome linked to epilepsy called GRIN2A. Also, we discovered a year ago that Victor’s lymphatic system is breaking down. While we’ve learned more about Victor’s medical health, having a genetic diagnosis does not give us a complete picture of the reason for his many seizures.
What I do know is that Victor’s seizures are a pre-existing medical condition. As an infant and into early childhood, Vic had up to 50 or more seizures per day. Today he averages one to five. As he's aging, his daily seizures are more intense, but lower in number. Vic takes three costly seizure medications per day along with many other medical interventions for all of his medical conditions.
While Vic’s medical journey began before the Affordable Care Act (ACA) was passed, I know how important the ACA is and I know that I am not fighting with insurance companies the same way I did pre-ACA. To be direct--Vic is alive today because of the many benefits the ACA provides: Victor may remain on our health plan until the age of 26 with no lifetime limit on the high costs of his medical care.
It is not an overstatement that the ACA has been pivotal in Victor's care as it has extended his life, living with our family in our loving home. If it were not for the ACA, there is no question that our lives would be very different! At age three, prior to the ACA’s passage, Vic was nearing his lifetime insurance limit of $2 million. I remember opening and worrying about every bill and reading each insurance explanation of benefits (EOB) form. The words, "Lifetime limit total is now X," were printed at the bottom of each EOB until the ACA passed and those words disappeared along with my financial worries.
Vic's 105-day hospital admission one year ago included medical travel to have surgeries out-of-state, as well as a return admission back to Texas. These bills were well over $2 million and I have the EOBs to prove it!
I cannot fathom to think whether Vic would be alive today if we didn't have ACA protections. These prevent Vic from being denied coverage for his many expensive medications, medical treatments, specialist appointments, hospital admissions, therapies, home health equipment (feeding supplies, syringes, tubing, and IV pumps, etc.), and his durable medical equipment (wheelchair, suction machines, Hoyer lift, hospital bed, cough assist, etc.).
Laura Leeman stands next to Vic (who is in his bed) & speaks with former congressman Beto O’Rourke. [image description: A woman with a “Health Care Voter” t-shirt faces a a man in a suit and tie. They are talking. Next to them, a young disabled man lies in a bed, attached to several pieces of medical equipment. On the walls are mounted toy trains, certificates and railroad memorabilia.]
Through all of this, I know that we are not alone. Millions of families are just like us and have the same worries as we do while the Supreme Court considers the November 10, 2020, ACA oral arguments, a case that will not be decided until April or May of 2021.
As for now? November is Epilepsy Awareness Month! Please join me in spreading both epilepsy awareness and positive vibes as millions of Americans remain in limbo, hoping to keep the health care they have. As the new Congress considers what’s at stake for our kids, we hope they will improve the ACA by making it more affordable and providing more coverage to every American. Health coverage is essential to sustaining life without worrying about or facing the high costs of medical bills.
65 million people around the world have epilepsy.
3.4 million people in the U.S. have epilepsy.
470,000 U.S. children have epilepsy.
1 in 26 people in the U.S. will develop epilepsy at some point in their lifetime.
Between 4 and 10 of every 1,000 people on earth live with active seizures at any one time.
150,000 new cases of epilepsy are diagnosed in the U.S. each year.
One-third of people with epilepsy live with uncontrollable seizures because no available treatment works for them.
6 of 10 people have no known cause for their epilepsy.
No parent should have to worry about medical costs when their child is faced with multiple medical conditions---Life is stressful enough!
Please take time to learn more about Epilepsy Awareness Month, GRIN2A, and what may happen next with the ACA.
Laura Leeman is a stay-at-home mother of two boys. She and her family live in North Texas. Laura is guided by her older son's medical journey, which began when he was 12 days old. Laura has been a speaker at several events, including a livestream in her home with former congressman Beto O'Rourke in 2017, during which she shared her story and educated him and others on health care concerns and disability rights. She has earned Bachelor's and Master's degrees, and is a recent graduate of Texas Partners In Policymaking.