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.
