LOS ANGELES — Maria Isabel Bueso was 7 years old when she came to the United States from Guatemala at the invitation of doctors who were conducting a clinical trial for the treatment of her rare, disfiguring genetic disease. The trial was short on participants, and thanks to her enrollment, the Food and Drug Administration eventually approved a medication for the condition that has increased survival by more than a decade.
Now 24, Bueso has participated in several medical studies. She has won awards for her advocacy on behalf of people with rare diseases, appearing before lawmakers in Washington and in Sacramento. Through the years, her parents have paid for the treatment that keeps her alive with private medical insurance.
But last week, Bueso received a letter from the U.S. government notifying her that she must leave the country within 33 days or face deportation. Her doctor, lawyer and mother described the order as tantamount to a “death sentence.”
Without notice, the U.S. Citizenship and Immigration Services eliminated a program this month that had allowed immigrants to avoid deportation while they or their relatives were undergoing lifesaving medical treatment. Called “deferred action,” the program had provided a form of humanitarian relief from deportation for at least 1,000 applicants every year, and was renewable every two years.
The Trump administration also recently eliminated a program that allowed immigration judges to end the deportation cases of others with sympathetic circumstances. Taken together, these changes have made it all but impossible for people who were previously considered safe from deportation to defend themselves if they are picked up by federal immigration authorities, some experts said.
“I have been feeling super scared and overwhelmed,” said Bueso, whose lower body is paralyzed from the disease, an enzyme disorder that inhibits cells from processing sugars. “The treatment that I receive keeps me alive.”
The policy change, which caught immigration officials unawares, is the latest in a series of moves by the Trump administration to revoke or modify procedures that have allowed certain immigrants to remain in the United States. Now thousands — including those with serious medical conditions, crime victims who have helped law enforcement with investigations and caretakers of sick children or relatives — no longer have access to a safety net that has shielded them from deportation.
Over the last two years, major changes to immigration policy have been implemented with little notification given to the federal workers charged with carrying them out, beginning with a travel ban imposed by President Donald Trump in his first weeks in office, and the “zero tolerance” approach that led to family separations last summer.
In explaining the new policy, a spokesman for USCIS said requests for deferred action must now be made to Immigration and Customs Enforcement, the agency responsible for removing people from the country. An ICE official, though, said this week that the department had not been notified of the new position and questioned ICE’s ability to assume the role.
“The decision by USCIS to alter this policy is not something that ICE is prepared to take on,” said the official, speaking on condition of anonymity because of the sensitivity of the information. “This wasn’t discussed with ICE. It’s not a procedure. We had no idea what they were talking about.”
In letters reviewed by The New York Times, Bueso, her family and other “deferred action” applicants have been told that the agency will only consider requests from people who are in the military and that the authorities may “commence removal proceedings” against those who do not leave the country.
“I have been told by USCIS there is no appeal, and nobody has told us how to proceed,” said Martin Lawler, Bueso’s attorney in San Francisco. “She cannot leave the United States. She will die.”
Every week for several years, 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 Bueso since 2003 at the UCSF Benioff Children’s Hospital in Oakland, California.
The new policy may prevent an 8-year-old girl with nerve cancer from participating in an experimental treatment at Memorial Sloan Kettering Cancer Center in New York. Her father, who is in the country illegally, is the only parent who can travel with her because her mother, an American, recently had a stroke that impaired her vision and ability to drive, said Tammy Fox-Isicoff, a Miami immigration lawyer who is representing the family.
Without deferred action, the man cannot legally drive or board an airplane from Miami to New York, where the girl must go each month for the treatment.
Brent Renison, a lawyer, is representing an Indian woman who has not been permitted to stay in the country, even though she is waiting for a green card, because her husband, the sponsor, died. He said deferred action is “meant to allow for some discretion, to recognize cracks in the law that people fall into, and alleviate humanitarian situations and needless suffering.
“For the administration to take this away means the end of humanitarian relief as we know it,” he said.
In another move unveiled this month by the Trump administration, crime victims who have helped law enforcement authorities with investigations will find it much more difficult to remain in the United States. The special protective visa, known as the U-visa, has a yearslong backlog.
ICE said this week that, unlike under prior administrations, it would no longer heed the advice of visa adjudicators — whose early, preliminary approvals used to qualify immigrants for a temporary “stay,” or pause on their deportation cases, until a final determination could be made. The new policy could affect about 140,000 people currently waiting for U-visas, plus their dependents.
Victims of violence, trafficking must also leave
Kenia Martinez of El Salvador, who has been living in the United States since 2004, is among those waiting. She was sent to a detention center in Louisiana this week in preparation for removal from the country, after her application to pause her deportation proceedings was denied. Previously, Martinez, who has two sons, would have been eligible to halt her removal because of her pending application.
In 2014, when Martinez first qualified for the visa, she had fresh bruises and cuts that were noted by police officers who had responded to a call about domestic violence, according to paperwork signed by her local police department supporting her application. She “cooperated fully” with the investigation, said the documents.
Cecelia Friedman Levin, senior policy counsel for ASISTA Immigration Assistance, a group that advocates for victims of physical and sexual abuse and human trafficking, said that the change is counter to the intentions of the bipartisan congressional group that created the U-visa nearly 20 years ago.
“It compromises victims’ safety and it creates a chilling effect on survivors to come forward,” said Friedman Levin.
Instead of a productive life, now a ‘death sentence’
In Guatemala, doctors told Bueso’s parents that their daughter’s life would be short. When Harmatz learned Bueso had the rare enzyme disorder, he wanted to include her in the medical trial.
“We could not have done the clinical trials” without her, he said. “We were struggling to find patients.”
The “dramatic 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 Bueso began receiving weekly four- to six-hour infusions of the drug, Naglazyme, at the hospital. 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. She has traveled and made presentations to lawmakers on behalf of people with rare diseases.
Her family lives in a tidy house in a middle-class neighborhood in Concord, California, which 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 Lawler, the family’s lawyer, told them about the government’s decision last week, Bueso began to shake uncontrollably.
“We were crying with the nurses, doctors, everyone,” said her mother, Karla Bueso. “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,” said Harmatz. “If you take it away, it will be a rapid return to her previous state. Death would be the outcome.”