Health Care Is a Human Right: Save the Affordable Care Act (by Lori Hensler)
Savannah as an infant. She is strapped to a gurney for medical transport, with a hospital blanket under her head and a rainbow-striped blanket over her torso. A supplemental oxygen cannula has been inserted in both nostrils. She is gripping a bright red stuffed lobster with her left hand.
My daughter, Savannah, loves Disney princesses, dolls, dancing, and outer space. She has heterotaxy syndrome, which literally means “different arrangement.” Her body organs are misplaced, missing, and/or malformed. She has issues with her heart, lungs, airway, intestines, kidneys, and liver. She is missing her spleen entirely. Her most severely impacted organ is her heart. Today, she’s doing pretty well. But five years ago this month, Savannah rapidly declined and crashed at home. She was not yet two.
By the time we got her to the ER, her oxygen was dipping into the low 40s, when it should be in the 90s. Savannah’s grandfather, a paramedic, met us at the doors and grabbed her out of the car. Her skin was blue, and her eyes were rolling back in her head. He barreled past triage and into the not-yet-totally-clean room, snatched oxygen off the wall and clamped it to her face.
It took eight liters of flow to raise her oxygen saturation levels back into the 80s. Normally when she struggled, even after open heart surgery, she only needed a half liter or less. My husband and I stayed with her, and her grandfather went to the nurses’ station. He knew who was best for Savannah and the situation, and he sent those doctors and nurses in fast.
The room absolutely erupted in activity. I paged cardiology at Savannah’s primary hospital (150 miles away) and handed the doc my phone. They dispatched helicopter transport for Savannah immediately, and her team began dictating what to do over the phone.
In a flurry, we sent someone to our house to grab some extras that we needed, including Savannah’s pacemaker transmitter in case she had had an arrhythmia or heart attack. (Our go bags for admission are ALWAYS packed and with us). Savannah’s grandma joined us in the ER so we could make a plan.
Savannah was given x-rays, was administered IV diuretics and heart medications, and gave blood for labs. Thankfully, she maintained herself better on that eight liters of oxygen.
When transport arrived, we sent Savannah up to the helipad with her grandparents. We couldn’t ride with her, so we kissed her goodbye after the paramedics strapped her in.
We started driving as fast as we could. Once we got in the car, I called family, I updated friends, and I cried and prayed my baby would stay stable so we could see her again as the helicopter she was in flew over our car.
Do you know what I did not do?
I didn’t ask if the ER doc was in-network.
I didn’t ask if the labs were covered on our insurance plan.
I didn’t get a prior auth for the $40,000 critical care helicopter flight.
I didn’t worry about hitting any kind of limits or restrictions on our insurance.
My baby was dying. In that moment, it didn’t matter.
The problem is, later it does matter. That year, Savannah’s medical bills were roughly $1.7 million. Insurance was eager to deny anything they could. Our private insurer line-item denied critical care items from her two-month hospital stay and forced me to appeal them one by one.
I had to fight and appeal and be relentless, all while sitting beside my daughter’s hospital bed, far from home, in the days after she had had open-heart surgery.
During a medical emergency, no one should be expected to think about prior authorizations or which hospitals and specialists are in-network. Let me correct myself: They shouldn’t be expected to think of it at ALL.
If someone requires emergency or even routine medical care, their primary concern should be getting what they need to best attain and maintain their maximum level of health. That means more health insurance reforms:
No step therapy
No prior authorizations
No prescription formularies
No networks
No caps on care
Savannah today. She is wearing glasses and smiling. Savannah is dressed in a bright orange NASA space costume, including a space helmet. She is clutching an American Girl doll with her right arm, which is dressed identically.
The Trump Administration’s unprecedented attack on health care, and the Republican Party’s hostility to the Affordable Care Act (ACA) threaten my daughter and threaten us all. The U.S. Supreme Court has scheduled oral arguments on the ACA for November 10, just days after the presidential election.
What most people don’t understand is that the ACA is, literally, why my child is alive. She is well past the lifetime caps that used to be on health insurance policies pre-ACA. She couldn’t change insurance plans easily because insurance companies would decline her outright, charge her an unaffordable premium, or refuse to cover her extensive list of pre-existing conditions.
When you go into the voting booth or sit down with your mail-in or absentee ballot, vote like someone’s life depends on it. Because for so many like my daughter, it does.
Lori Hensler is a member of Little Lobbyists. She is also a jewelry designer, and she lives in Indiana.