“Can the Trump administration sink any lower than threatening to deport sick kids?”
Last night, Rachel Maddow lifted up the story of Isabel Bueso and the Trump administration’s cruel plan to deport her to her death. This is part of a secretive new policy to end grants of medical deferred action to those who come to the United States for life-saving treatment and trials.
Because of Bueso’s rare genetic condition, University of California San Francisco scientists invited her to participate in a medical treatment trial and asked her family to relocate to the area to help them. As a result, the UCSF team developed an FDA-approved treatment that is saving lives. The treatment they developed is also saving Isabel’s life – a life she’s used to graduate summa cum laude from college and to start a scholarship fund for those with disabilities.
Last week, she received notice to self-deport within 33 days or be deported. If she leaves the United States, she will die within months. As Bueso’s doctor put it: “It’s as if we’re pulling the plug on a respirator or stopping feedings for a patient that needs that type of support. I think we have really devastated this family.”
According to Doug Rivlin, Communications Director of America’s Voice:
We have to come to this. The Trump administration is now handing out death sentences in the form of deportation orders to sick migrants. In this barbaric display of inhumanity and cruelty, the administration makes its position crystal clear: they will stop at nothing to attack, cage, kill and ultimately rid the U.S. of immigrants in the name of a xenophobic political agenda. This policy will not only devastate immigrant families and children, but will slow medical advancements on rare and dangerous diseases by stripping patients of their abilities to participate in trial treatments and in turn endanger the lives of those facing illnesses. It makes no sense. There is no logic. Only bloodthirsty cruelty drives the American President.
The Boston Globe, one of the first news organizations to detect the new policy, penned a powerful editorial entitled, Can the Trump administration sink any lower than threatening to deport sick kids?
Step by malicious step, the Trump administration is turning the American immigration system into an apparatus of appalling, intentional cruelty.
The latest case in point is a relatively small program known as “medical deferred action,” in which immigrants without legal status who are suffering from serious medical conditions are granted a reprieve from deportation so that they can have access to much-needed medical treatment in the United States.
Trump halted the program this month, threatening to deport these patients, including children with leukemia, muscular dystrophy, or cystic fibrosis. The program’s termination means suspending or interrupting medical care, which in some instances is virtually a death sentence.
As Monique Madan and Ben Conarck of the Miami Herald explained:
The policy change has brought the looming threat of deportation hanging over the heads of Portillo’s clients. Both of the families of the sick girls, she said, have a family member with protection under medical deferred action set to expire at the end of the year.
The Herald is not naming the clients due to fears of deportation related to their immigration status.
The Herald also reviewed the case of a Miami man from Venezuela whose wife has a brain blood-flow malformation, and whose child was diagnosed with metastatic Stage 4 neuroblastoma, a type of cancer that develops in nerve tissue. The man received a rejection letter for his application to the medical deferred action program on Aug. 13.
Every week for several years, Ms. Bueso has received intravenous infusions of the replacement enzyme that treats her disease, Mucopolysaccharidosis VI, or MPS-6, which causes dwarfism, clouded vision and spinal cord compression, among other abnormalities.
“Stopping this therapy will dramatically shorten her life span,” said Paul Harmatz, the pediatric gastroenterologist who was involved in the original trial and has been treating Ms. Bueso since 2003 at the U.C.S.F. Benioff Children’s Hospital in Oakland, Calif.
The clinical trial had struggled to find patients, and without Ms. Bueso’s participation, Dr. Harmatz said, it would not have taken place. The breakthrough that came from the trial has helped people with the disease live longer than 30 years, he said. Before the drug, they rarely survived past 20.
…It has been 16 years since Ms. Bueso began receiving weekly infusions of the approved drug, Naglazyme. She has built a productive life despite the crippling disease. Last year, she graduated summa cum laude from California State University, East Bay, where she worked with the school to start a scholarship for students with rare diseases.
Her family lives in a middle-class neighborhood in Concord, Calif., in a house her parents bought and renovated to accommodate their daughter’s wheelchair. They did not expect to leave the country, having won permission to stay every time they applied for an extension.
When Mr. Lawler, the family’s lawyer, told them about the government’s decision last week, Ms. Bueso began to shake uncontrollably.
“We were crying with the nurses, doctors, everyone,” her mother, Karla Bueso, said. “Without her treatment, it’s like a death sentence. It has been hard to process.”
Neither the drug nor the medical care that she requires is available in Guatemala. Without the drug, her health is expected to quickly deteriorate. Her breathing could become belabored; she could suffer cardiac arrest and become susceptible to infections.
“We have watched her grow up and mature, and become a responsible young adult, a leader advocating nationally,” Dr. Harmatz said. “If you take it away, it will be a rapid return to her previous state. Death would be the outcome.”