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How Deporting Immigrants Seeking Medical Treatment Puts the Entire Rare Disease Community at Risk

Renee Fabian
 • 
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In August, the Trump administration quietly ended a deferred action program which allowed immigrants to stay in the U.S. and receive medical treatment. Thousands are now threatened with deportation and being cut off from life-saving treatments and the ability to participate in research that impacts the entire rare disease community. After facing backlash from health advocates, on Monday, U.S. Citizenship and Immigration Services said it will reconsider the policy on a case-by-case basis.

Maria Isabel Bueso, a 24-year-old rare disease advocate, is one of the people facing deportation under the new policy. Bueso lives with the rare condition mucopolysaccharidosis VI (MPS-6), which causes growth differences in the spine, arms and legs and, often, early death.

Bueso came to the United States from Guatemala with her parents in 2003 to participate in a clinical research trial for people with MPS-6. The trial didn’t have enough participants, so lead researcher Paul Harmatz, M.D., recruited Bueso. Thanks to her participation, the trial moved forward and eventually led to the approval of a drug treatment for MPS-6 that adds a decade to the life expectancy of people with the condition. Bueso has received the life-saving treatment for more than 16 years, paid for thanks to her parents’ private health insurance through their U.S. employers.

On Aug. 7, Beuso and her parents received a notice that their deferred action status was ended and they would need to leave the country within 33 days by Sept. 15. The treatment she receives in the U.S. is not available in Guatemala. Beuso, her parents and her doctors said her order to leave the country is a “death sentence.”

“I have been feeling super scared and overwhelmed,” Bueso told The New York Times. “The treatment that I receive keeps me alive.”

UCSF Benioff Children’s Hospital in Oakland, California, where Beuso participated in the clinical trial led by Harmatz and continues to receive treatment, issued a statement urging the Trump administration to reconsider the new policy change.

“Deporting the Bueso family will result in severe deterioration of Isabel’s health that her physicians believe puts her at high risk of death within a year,” the statement reads. “We urge the Administration to take action to reverse the policy change before harm comes to any patients affected by this action.”

Medical professionals, lawmakers, advocates and celebrities rallied around the hashtag #SaveIsabel on social media, calling on the Trump administration to reserve its policy for Bueso and others impacted by the new rule.

“Isabel is just one of who knows how many hundreds of either children or young adults that are affected by this who have different types of rare diseases,” Eric Topol, M.D., founder and director of the Scripps Research Translational Institute, told The Mighty. He added:

Most of them [participate] in medical research in the United States, and many were part of drug development plans for their rare disease and helped in that way to usher in a successful treatment for various rare diseases for which there was no treatment. Isabel is one example but there are many others. So, this whole thing is just contrary to all the values, not just of the United States, but also science and medicine and how to do medical research.

According to the organization Global Genes, approximately 400 million people worldwide live with one of an estimated 7,000 identified rare diseases. As of right now, only about 5% of these conditions have an approved and effective treatment. Bueso, like many others who are invited to come to the U.S. for medical research and treatment, are key to advancing the outlook for the global rare disease community.

Nikita Curry, MHA, supervisor for the Office of Patient Recruitment at the National Institutes of Health (NIH) Clinical Center, previously told The Mighty one of the biggest challenges for researchers is recruiting enough patients to study rare diseases. To develop new treatments, it is often necessary to recruit patients from other countries to have enough participants to even conduct a clinical trial.

Preventing people like Bueso from participating in medical care in the U.S. not only jeopardizes their lives, it halts medical advances that benefit many more people around the globe. According to The New York Times, approximately 1,000 people ask for deferred action to prevent deportation every year for life-saving medical treatments. UCSF underscored the importance of open immigration policies for medical research in its statement on Beuso’s situation.

“Isabel and the other patients in the study with this condition have helped to increase the lifespan of patients with severe MPS-6 disease from a maximum of about 20 years to more than 30 years of age,” UCSF wrote. “Her participation in the original clinical trials, led by Dr. Harmatz, helped provide the evidence of the therapy’s effectiveness that led to FDA approval of the drug she now depends upon to live.”

Advocates also pointed out that the change in the policy for medical-related humanitarian deferments was quietly enacted without an opportunity for experts to weigh in on its impact on the global medical community. The U.S. Citizenship and Immigration Services (USCIS) handed off the deferment judgments to Immigration and Customs Enforcement (ICE), allowing only military members to qualify for deferments. Bueso’s lawyer, Martin Lawler, told The New York Times “there is no appeal, and nobody has told us how to proceed.”

“What’s so troubling about this, beyond the cruelty of it, is the lack of transparency around the process,” Rep. Ayanna Pressley (D-Mass.) told The Times. “There was no public comment period, not even a public announcement of this, and so I’m working with my colleagues to get answers and to urge this administration to change course.”

Responding to criticism from the medical community, lawmakers and advocates, USCIS announced on Monday it would reopen all of the pending deferred action cases impacted by the Trump administration’s August policy change. Deferments are granted on a case-by-case basis, USCIS said in a statement. Whether or not applicants will be granted deferment is unclear.

For Bueso, deferral is the difference between life and death. And for others in the rare disease community who come to the U.S. for medical treatments or to advance medical science for future generations, the stakes are just as high.

“The sudden unannounced reversal of this policy is just immoral, unethical, egregious,” Dr. Topol said. “There’s enough suffering that people with rare diseases have. We don’t need to put them through this. If they were invited here … what more do we need to justify that they should be allowed to stay here?”

What’s your take?

Tell us what you think in the comments below.

Header image via Twitter

Renee Fabian
 • 

Renée Fabian was the features editor at The Mighty. She has also written for The Washington Post, VICE, Healthline, Talkspace, The Fix, The Establishment, The Culture Trip, and GRAMMY.com, among others. Renée was named a 2019 AHCJ Comparative Effectiveness Research fellow, a 2020 USC Center for Health Journalism California fellow, and holds a master's degree in journalism from the University of Southern California and a master's degree in psychology from Antioch University Los Angeles. You can follow her on Twitter @ryfabian.

reneeyfabian
Originally published: September 3, 2019
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