Reports by the New York Times, Huffington Post and Yahoo News, among a myriad of additional media outlets regarding the treatment and conditions in detention centers all over the southern border are chilling and infuriating. We’re learning that U.S. Border Patrol agents are confiscating children’s medication. They are being kept in unsafe and unsanitary conditions, exposed to temperature extremes, without access to hygiene items we all take for granted and are even being kept from hand washing, despite cold and flu outbreaks. For those of us in the Little Lobbyists community, the reports are terrifying. Our children have complex medical conditions and disabilities, and while the U.S. health care system offers daily threats to our children’s lives, we have the ability to stay home and fight back.
None of us in the U.S. should remain complacent about the privilege citizenship offers us. Like the migrants seeking asylum at our southern border, any of us might have to flee our homes and seek shelter and good will elsewhere. Over the last several years, thousands of U.S. citizens, including the families of children with complex medical needs, have had to flee natural disasters, seeking safe harbor in other states. Little Lobbyists has been one of many organizations sending crucial medical supplies to charities distributing these essential items to U.S. citizens who have had to leave such first world luxuries behind. Children’s lives hung in the balance.
My own son is 22; on 9/11, Robert was only 4 years old, a Buzz Lightyear fan enrolled in preschool. Our family lives in Bethesda, Maryland, and we were face to face with fear that day: Should we stay put and hope for the best, or should we join the gridlock on major highways to flee the area? We chose to stay because packing Robert’s medical equipment (including machines that require electricity), his multiple medications (some of which require refrigeration), and his other personal supplies (most ordered from medical specialty vendors), seemed overwhelming.
Had Robert needed only one or two prescription drugs, however, I think we would have fled. That’s the reality for current migrant families facing political turmoil and immediate danger. Equally stark were decisions made by U.S. citizens fleeing recent hurricanes Harvey, Katrina, and Maria; many remain displaced to the current day.
On 9/11, my family put our faith in a belief the world would return to normal. But no one in the DC metro area really knew what might happen next. Were we lucky? Or were we trapped within a first-world fantasy of citizenship? Given current U.S. policy, if my family had to flee a disaster today, could we expect any better than to have Robert separated from us, stripped of his medications and medical devices? Would other nations treat us any better than we’re treating their citizens now? Robert would die within 72 hours, too late for any humanitarian agency to intervene.
The events of 9/11 left me terrified. After the F-16s stopped rattling the windows of our home, after the Jersey barriers went up in front of congressional office buildings, after Robert returned to school, I grabbed a cheap green backpack and methodically packed every essential item Rob would need to spend five days on the road to some place safe. Every September for almost a decade, I replaced the pills and solvents and tubes and syringes to ensure the backpack would be ready to go at a moment’s notice. That green backpack had a special place in Rob’s closet. We all knew where to find it.
How can our government confiscate the backpacks of children like my son? Backpacks hurriedly filled by anxious parents fleeing political violence? How can border patrol agents refuse medication to children with epilepsy, asthma, diabetes, and many other diseases? Why is the treatment of medically complex children at our border even controversial?
The situation at our border merely reflects the broader systemic cruelty of our domestic health care. If Robert and I had to flee Maryland today, even to Delaware or West Virginia, what Robert needs to survive and thrive might not be available to us, simply because Medicaid rules and covered items are not the same, state to state. Even Medicaid as a form of insurance is not transferable from one state to another. Our zipcodes have become borders and barriers to treatment for our most vulnerable citizens.
In fact, any U.S. citizen who takes a prescription medication is vulnerable in the event of an emergency that requires crossing state lines, let alone international borders. Some private insurers are local, some are national, and state and federal regulations for prescription drugs are complex.
It’s said we are a nation of immigrants. Each of us needs to keep that in mind, and push our elected representatives to ensure basic human decency at our borders, the basic human right for refugees to carry essential medication to continue treatment. We would want the same human courtesy extended to us should any of us have to flee the comfort of our homes.
As the mother of a medically complex young man, I dare to hope that the U.S. can do more for all medical immigrants, both within its own borders and at its international boundaries.