The AHCA’s Unimaginable Cruelty

 

It’s been two months since Paul Ryan rammed the AHCA through the House without a CBO score, without public hearings, and with less than an hour of floor debate. Since then, we’ve dealt with the new-normal of Trump embarrassments, scandals, incompetence, and Russia revelations seemingly hourly. In such an environment, it’s easy to lose focus on the stories that aren’t right in front of our faces.

Now, the Senate’s secret-squirrel bill is finally revealed, and it’s somehow even worse. So distractions aside, it’s time to return attention to the GOP crusade to attack Americans’ wallets and even lives. We’ve all heard the numbers by now, and they are so startling as to defy belief. According to the CBO’s score, the AHCA will cost twenty-three million Americans their healthcare coverage within the next ten years. That’s actually more people than gained coverage under the ACA, as the GOP plan is so damaging and corrosive that even people on employer group plans are not safe. A Harvard study from prior to the implementation of the ACA demonstrated as many as forty-five thousand people died as a direct result of a lack of adequate healthcare coverage annually. That’s the equivalent of filling a major league baseball stadium with people and bombing it to rubble. Every. Year.

These numbers are almost too big to comprehend. So, if you’ll indulge me, I’d like to shrink the conversation down and introduce you to someone very special.

Meet Caitlin Thomas. Caitlin is fourteen years old. She enjoys Buffy the Vampire Slayer and traveling the country with her parents, Michael Damian and Lynne. Caitlin also suffers from Aicardi Syndrome, a severe neurological condition of the brain that affects only around two-thousand girls worldwide. I say “girls,” because few people with this disease have lived to see adulthood. Among other symptoms, Caitlin struggles with brain cysts, epilepsy, degraded vision, problems communicating, is wheelchair bound, and has to be fed through a stomach tube.

Forty years ago, Caitlin’s life would have been short and bleak, whisked away from her family to an institution of incalculable inhumanity, where her life-expectancy would be measured in a few years at most. Little more than a cold, uncaring waiting room for death’s arrival. But that changed with the introduction of the Americans with Disabilities Act, a bipartisan bill widely supported by men and women on both sides of the isle and signed by President George HW Bush.

Thanks in part to these measures, and to Medicaid programs for severely disabled children available through their state of residence, Caitlin has been able to live her life at home with her family. She is thriving and happy. But it hasn’t been easy. In 2014, Caitlin underwent back surgery to correct a worsening spine curvature. Her medical costs for that year alone totaled a million dollars, the price of five decent homes in their neck of the woods. But even that pales in comparison to her ongoing costs. A single specialized anti-seizure medication for Caitlin costs seventeen thousand dollars per month. But without it, she would have no quality of life at all.

Aicardi syndrome is, it goes without saying, a preexisting condition. It wasn’t due to any decisions Caitlin made, or her lifestyle choices. It can’t be tracked back to anything her parents did or failed to do. Like so many conditions, it just happened. Without access to good health insurance and preexisting condition guarantees, her parents would not only be broke, but very likely unemployable by anything but a large corporation whose group plan could absorb the hit of Caitlin’s medications and care. The damage she would do to a small company group plan would be immense.

Fortunately, Lynne works for the Library System and has state employee benefits which can take the strain. Because of this, not only is Caitlin alive and happily at home with her family, but Michael Damian acts as a stay-at-home father and care-giver, while still carving out time for the family business.

The Thomas’s jointly own and edit Uncanny Magazine, a speculative fiction market for short stories, novelettes, and articles dealing with the sci-fi and fantasy community. And when did their business launch? 2014, the same year Caitlin’s medical bills topped one million dollars. In just a few short years, Uncanny Magazine has catapulted to prominence within the nerdy literary community with many significant, award-nominated pieces published. They pay their authors pro rates in an industry that has struggled in recent years. They’ve hired on editorial staff. Last year in Kansas City, they won the highest honor among their peers when they took home the Hugo Award from best semiprozine. A novelette they published, “Folding Beijing,” was covered by the New York Times, has been read by over a hundred thousand people, and has recently secured a film deal.

All instead of going bankrupt trying to save their daughter from death. That’s the power of healthcare coverage and the ACA’s market reforms, the ability to continue living, creating, and contributing to our larger society and culture instead of fighting for life.

This is what the AHCA, Trump’s budget, and even the Senate draft proposal wants to take away. Collectively, the proposals cut over a trillion dollars from Medicaid starting in 2020, gutting the grants children like Caitlin depend on for their very survival. Medicaid reimbursement rates are already so low, and their repayment times so long (18 months in IL!) that many providers simply can’t afford to accept patients from the program. Slashing its funding to the bone won’t save money in the long run, it will only exacerbate the problem and drive more families past the breaking point.

What families like the Thomas’s want is not dependence on the government, but freedom to make their own way and forge their own futures. Futures that benefit and enrich us all in the end. If we can only find the political will and basic human decency to let them, we all win.