Patient treated by BioMarin Pharmaceutical appeals to Congress to end medical visa deportations
WASHINGTON — One immigrant went to California as a child to participate in a drug study that has helped Americans survive with a rare genetic disease. Another, an adolescent girl from Spain, was told by a cardiologist that she must remain in Boston to receive critical care for which her family borrowed thousands of dollars. A teenage boy with cystic fibrosis arrived in the United States “literally dying,” he said, but now has a new lease on life.
On Wednesday, the immigrants told a House Oversight subcommittee why it was imperative that they remain in the country, despite the Trump administration’s abrupt elimination of a program that had enabled them to receive lifesaving medical care without the fear of deportation.
The fate of the immigrants, who all came to the United States legally, remains unclear more than a month after they were first informed by letter that they would have to leave — only to be told early this month that the government would reconsider.
“If I’m sent back, I will die,” Maria Isabel Bueso, 24, of Guatemala, told lawmakers on Wednesday. At 3 feet tall, sitting in a wheelchair, she was a sympathetic witness.
The unannounced termination on Aug. 7 of the so-called deferred action program, except for military personnel, generated public outrage and drew sharp rebuke from the medical establishment. The New York Times revealed that Bueso had been ordered to leave the country in 33 days or face deportation.
Bueso came to the United States when she was 7 to participate in a clinical trial for a drug to treat Mucopolysaccharidosis Type 6, known as MPS 6, an enzyme disease that causes dwarfism, cardiac arrest and blindness, among other ailments.
The drug, which according to the Marin Independent Journal is made by San Rafael-based BioMarin Pharmaceutical and is approved by the Food and Drug Administration, has helped extend by a decade the lives of people like her. She continues to receive weekly drug treatment and participate in medical studies.
Last month, U.S. Citizenship and Immigration Services, without public notice, began sending letters to immigrants like her telling them that it was no longer accepting requests for “deferred action,” renewable every two years. On Labor Day, the agency backtracked and announced that cases pending on Aug. 7 would be reconsidered. It also said that deportation proceedings had not been initiated against anyone who had received the letter.
However, it has not yet said whether the government will continue to grant immigrants the opportunity to stay in the country. It has also not clarified how applicants who need to file extensions must proceed.
In response, Democrats called an emergency hearing, seeking answers about the origin, rationale and revision of the program. They received little information.
“I have clients with sick children now who need access to the program but can’t apply,” said Anthony Marino, an immigration lawyer who represents children receiving treatment for cancer, cerebral palsy and muscular dystrophy.
“What is going to happen to people who fell on the wrong side of Aug. 7? We haven’t received a denial or anything about new procedures in place. We just don’t know,” said Marino, who is the director of the Irish International Immigrant Center in Boston, which has 19 clients who require deferred action to survive.
The American Civil Liberties Union of Massachusetts and Lawyers for Civil Rights on Sept. 5 filed a lawsuit challenging the termination of the policy on behalf of the center.