More than 100 patient organizations are speaking out and expressing concern with the Trump administration’s plan to end a medical deferred action program, which allows immigrants to delay deportation proceedings on medical grounds.

“This change essentially terminates the legal status of patients, who are currently residing in the U.S., in order to receive life-saving medical treatments or to participate in clinical trials,” the patient coalition, including Patients Rising NOW, wrote in a September 10 letter to Department of Homeland Security Acting Secretary Kevin McAleenan. “Requiring deportation, particularly in cases of rare disease patients whose countries of origin are not able to provide access to treatment, is tantamount to a death sentence.”

The Trump administration defends the change as a step to prevent the program from being subject to abuse.

“USCIS strongly believes that the exercise of deferred action is subject to abuse,” USCIS Policy and Strategy Chief Kathy Nuebel KovarikKovarik wrote in a memo, obtained by Politico, “and if we continue to accept such requests, even with narrow medical criteria, we will be creating a de facto ‘program’ of criteria … which are not enumerated in statute or regulations.”

1,000 Patients Seek Deferred Action for Medical Care

Every year, an estimated 1,000 patients defer immigration proceedings in order to maintain access to life-saving treatments in the United States. As NPR News notes, in many cases, the patients came to the United States legally by obtaining a visa and are requesting a longer stay based on their treatment plan.

One patient who could be impacted by the policy change is 16-year-old Jonathan Sanchez, who is living with cystic fibrosis. Jonathan, who has a pending request with U.S. Citizenship and Immigration Services, hopes to continue to receive innovative treatments that just don’t exist in Honduras.

“I’ll probably die because in my country, there’s no treatment for CF [cystic fibrosis],” Sanchez told WBUR’s Shannon Dooling. “Doctors don’t even know what’s the disease. The only ones who can help me are here in the United States.”

Medical Exemption Critical for Clinical Trials

Beyond its direct impact on individual patients, the Trump administration’s policy change could affect research into new treatments and cures for rare diseases. Clinical trials establish strict criteria for qualifying patients, and even a country as large as the United States, can lack enough patients to conduct a robust and thorough clinical trial.

Although rare diseases affect fewer than 200,000 patients, the rare disease community collectively includes more than 30 million patients in the United States.

“There are more patients living with a rare disease than patients with HIV, heart disease, or stroke – combined,” says Terry Wilcox, executive director at Patients Rising NOW. “We need to do everything we can to support clinical trials that bring hope to rare disease patients and their families.”

Even after completing a clinical trial, immigrant patients make valuable contributions to the understanding of medical science through their participation in the long-term study of the effectiveness of their treatment.

Patient Maria Isabel Bueso came to the United States to participate in a clinical trial that helped lead to the approval of the only treatment for other patients who share her rare, fatal disorder, MPS VI. Isabel’s doctors have said she will not survive without the weekly enzyme infusion therapy she still receives.

“Participation of migrant and U.S. born patients in clinical trials paves the way for U.S. patients to gain access to FDA approved therapies proven to be safe and effective,” warns the coalition of 100 patient organizations, including Cure GM1 Foundation, EveryLife Foundation for Rare Diseases, Hide & Seek Foundation, Hunter Syndrome Foundation, Max Cure Foundation, One Rare, Oxalosis & Hyperoxaluria Foundation, Sickle Cell 101, and Texas Rare Alliance.

“Action is imperative on this matter for the individuals currently receiving treatment by way of the deferred action program, vital for innovation and the development of new treatments, critical for U.S. rare disease patients, and quite simply, the humane thing to do.”