Posts tagged medically complex
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
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.

My Son is in Hospice and his Healthcare Matters (by Tonya Prifogle)

My 7-year-old son Colton is in hospice.

Our entire family has been gathered around his bedside for weeks. His health, which had been slowly declining for over a year, rapidly deteriorated the day after Christmas. I’m grateful that he made it to Christmas, my smiling boy’s favorite time of year, to give us the gift of one last holiday together as a family.

The time will soon come when his broken body will be at rest, and my constant fight to ensure his access to health care will become a distant memory.

But not yet. Even in these final moments, when I should be able to focus the whole of my broken heart on saying goodbye, our fight is not over. Once again, our health care system has failed us. Once again, I am consumed by the fire of outrage at the suffering our children are needlessly forced to endure.

Obtaining hospice care for a medically complex child like my son is no easy task. The flat rate allocated for home hospice by Medicaid is not enough for a child like Colton; who needs a trach, feeding tube, supplemental oxygen, ventilator, medical supplies, medications, and more (we don’t call him our “million dollar kid” for nothing). Negotiating difficult contracts with agencies to set up care was complicated and stressful, to say the least.

As Colton became more ill, he needed more pain medication to remain comfortable. The prescription was written, but when we tried to fill it the medication was denied. Over the next few days, the script was denied four times. No matter what our physicians and pharmacists tried, it would not go through. As we ran out of medication, my greatest fear as a mother was coming true - my child would die a painful death and there was nothing I could do to help him. The health care system in our country is so broken that it prevented my child from accessing the medicine he needed to ease his suffering in his final moments.

I refused to accept this. I turned to the Little Lobbyists community I have been advocating alongside and my fellow mommas went into action. Through Twitter and Facebook, we shared Colton’s story. Generous friends and strangers donated funds and clicks alike. We cried out to the world for help and our voices were amplified by collective compassion and matching outrage. No family should have to endure this. Not here, not now, not ever

Fortunately we were heard by the people who needed to hear us. We finally got the attention of the pharmacy responsible. They explained they had made a mistake due to confusion over a new law in our state and were correcting the situation. After more than a week of worry, pain, and distraction, Colton finally got the medication he needed.

I’m filled with relief and gratitude that my beautiful little boy will not have to endure unnecessary suffering at the end of his life. But I cannot stop thinking about all the other mothers who are facing the death of their child. We should not have to fear the loss of health care coverage while we are trying to say goodbye. This is excruciating enough -- without fighting for hospice, without needing a “GoFundMe,” without exposing ourselves in our most vulnerable moment to the public scrutiny of social media in the hope that sharing our story will facilitate access to desperately needed care. This is wrong.

In his all-too-brief 7 years, Colton has taught me so many things about strength, and love, and the gift of life. To all who hear his story, I pray you learn just one thing from him – that the right to health care extends throughout a person’s life. My child deserves to live with dignity and as free from suffering as possible from the time he was a newborn in the NICU all the way to this moment in hospice, as he lies beside me struggling to hang on for just one more day.

Image description: Tonya (the author) and her son Colton embracing nose to nose.

Image description: Tonya (the author) and her son Colton embracing nose to nose.