Why Potentially Ending Medical Deferred Action Impacts All of Us
We would all cross borders to save our children’s lives.
Every summer my family and I make a 600-mile journey to one of the only centers in the world with expertise in the rare disease my son and I share. The first time we went, the lead geneticist put his hand on mine and said, “Amy, you don’t have to be his doctor right now, we have got this, you can just be his mom.” I cuddled my beautiful, perfect 7-week-old and cried with relief—we had finally gotten our son where he needed to go. The specialists knew what to do and everything was going to be OK.
The expert rare disease care we have received has decreased our morbidity and greatly improved the quality of our lives. I am a physician, a tax payer, and an independent adult because my parents could make this journey for me to receive expert rare disease care when I was a child. My son, now a thriving preschooler, has already been spared pain and surgeries because we make the journey. As a mother, I know that any parent would do everything they could to make the journey that could save their children’s lives and to find answers and hope.
This past month the United States Citizenship and Immigration Services (USCIS) eliminated medical deferred action forcing thousands of medically fragile children and families to leave the country in 33 days. Until recently, these families who made the journey for medical care have been allowed to stay to receive lifesaving care. USCIS eliminated the policy without public comment or even fully informing the Immigration Customs Enforcement (ICE) of their new role in handling the deportation of thousands of medically fragile children with conditions including epilepsy, sickle cell anemia, birth defects, cancer and genetic conditions like my son and me.
Many of these removals will result in the death of the children involved because no care is available for them in their home lands.
A portion of these children were invited to the United States initially to participate in drug trials that saved not only their lives, but whose participation in research has helped saved the lives of countless American children now and in the future.
The only difference between my family and these kids, is the borders my family crosses are state lines.
As fellow parents, as fellow patients alongside my fellow physicians, we need to all mobilize and come along side these children and families in solidarity and for the sake of the moral integrity of our nation.
Organize with patient advocacy groups, with your local children’s hospital to support families in your area that might be impacted by this policy. Call your representatives and ask for Congressional oversight of this dangerous policy change.
We would all cross borders to save our children. I have, and so would you.