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Little Lobbyists Statement: Protections under the Medical Deferred Action Program must be reinstated

Little Lobbyists strongly condemns the Administration's cruel and inhumane decision to terminate protections under the Medical Deferred Action program – a decision that, if left in place, will lead to the unnecessary deaths of vulnerable children and adults.

The United States has a proud history as the proverbial shining city on a hill, especially when it comes to expert medical care for complex and rare medical needs. Patients come here from around the world seeking our doctors’ expertise and medical technologies when they have nowhere else to turn. This program allows a very small number of patients with serious medical needs to remain legally in the U.S. in order to access life-saving treatment that is not available in their home country; these patients include children and adults with cancer, cystic fibrosis, epilepsy, rare genetic syndromes and other catastrophic illnesses. In short, deportation of these individuals to their home country is tantamount to a death sentence.

We reject the scarcity argument that providing care for one group amounts to less care for another. In fact, in many cases, these patients are providing doctors with more opportunities to learn about rare syndromes and conditions, allowing the development of treatments that will help everyone – American citizens and non-citizens alike – with similar conditions now and in the future. The Medical Deferred Action Program is a reflection of our American values of compassion and ingenuity, as we use and grow our talents and expertise to help others.

As families who advocate for and with children who have complex medical needs and disabilities, we fight for all children. There is no such thing as other people’s children. The protections under the Medical Deferred Action Program must be reinstated, and we call on everyone to raise their voices to ensure the Administration does the right thing.

For more information:

https://www.irishcentral.com/news/deferred-medical-action-boston-irish

https://abcnews.go.com/Politics/trump-administration-ends-relief-program-immigrants-medical-issues/story?id=65252446

Podium with Little Lobbyists logo in front of the U.S. Capitol
Texas v. U.S. – EVERY American's Health Care is On the Line (by Laura Leeman)

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.

Victor and his dad embrace during a recent hospital stay.

Any of Us Could Be a Refugee (by Jeneva Burroughs Stone)

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.


Photo provided by U.S. Customs and Border Protection of children at the Central Processing Center on June 17, 2018 in McAllen, Texas.

Photo provided by U.S. Customs and Border Protection of children at the Central Processing Center on June 17, 2018 in McAllen, Texas.