In 30-some years as an immigration lawyer, I have not seen a more compelling justification for a private bill than the way the administration has treated Maria "Isabel" Bueso.

When Isabel was 7 years old, she came to the United States from Guatemala at the invitation of American doctors who needed her for clinical trials of a new treatment for a rare genetic disease, Mucopolysaccharidosis VI, which occurs in only one out of 1,505,160 births. It causes dwarfism, clouded vision and spinal cord compression, among other abnormalities.

It also shortens a person's life span. Without treatment, people who are as severely affected as Isabel usually survive until only late childhood or adolescence.

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Isabel was admitted to the United States on the basis of a deferred action program for aliens who need medical treatment in the United States.

The trial did not produce a cure, but it led to the development of a medication that can increase survival by more than a decade.

Isabel and her family remained in the United States to continue the treatment, which her parents paid for with private medical insurance. The treatment is not available in Guatemala.

Isabel and her family have lived here legally for 16 years.

Isabel is smart, lively, lovely and full of plans. She has graduated from college with honors and is an active member of her community. Her parents own a home, pay taxes and are active in their community.

Last month, U.S. Citizenship and Immigration Service (USCIS) announced that it had changed its policies and would no longer accept deferred action requests for the medical treatment program, except those made by certain military members and their families.

On Aug. 13, USCIS denied a request Isabel had made to extend her deferred action status and informed her that if she and her family did not leave the United States within 33 days, deportation proceedings would be initiated.

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This was described by her doctor, her lawyer and her mother as tantamount to a “death sentence.” The treatment she receives — and her participation helped to develop — is not available in Guatemala.

Congressional reaction to terminating the program

A contingent of more than 100 Democrats from the House and Senate sent an angry letter to top officials at the Department of Homeland Security (DHS). They claim in their letter that terminating the medical deferment program will needlessly endanger vulnerable children and families who need life-saving medical treatment in the United States for serious illnesses.

They view the termination as "another cruel action by the Trump administration to attack our most vulnerable immigrant neighbors."

They acknowledge that the deferments can be provided by Immigration and Customs Enforcement (ICE), but they object to using an enforcement agency to handle this program.

The letter ends with a list of 14 questions.

Among other things, they want to know the rationale for this policy change, why USCIS did not provide advance notice to the public or to Congress before the change was made, and whether USCIS took into account the fact that some of the individuals in this program — including children — risk deteriorating health conditions and even death if they are not able to continue their treatments.

I would like to know the answer to those questions too.

ICE will not continue the program

According to an ICE spokesperson, "ICE does not exercise discretion on a categorical basis to exempt entire groups of aliens from the immigration laws enacted by Congress." ICE does have a process for granting a temporary reprieve from removal on a case-by-case basis, but it applies only to people who are subject to a deportation order.

I can understand why DHS would want ICE to handle all of the temporary deferments.

The United States has been granting temporary reprieves from removal since at least the 1970s. Some types of reprieves are based on statutory provisions in the Immigration and Nationality Act (INA), such as temporary protected status.

Temporary reprieves which are not authorized by the INA are based on enforcement discretion, and enforcement measures are handled by ICE, not USCIS.

But transferring medical deferments to ICE has terminated a critically needed program.

The program should be restored, but that is not enough

Aliens who receive discretionary deferments are subject to removal when the deferment ends. This isn't a problem when the need for medical treatment is temporary too. But Isabel will continue to need treatment for the rest of her life. She needs lawful permanent resident status (a green card) so she can remain permanently in the United States, not just a continuation of temporary relief from deportation.

In fact, USCIS has reopened deferral requests that were pending on Aug. 7, so Isabel may get another extension after all. But she won't get another one.

On Aug. 30, 2019, Rep. Mark DeSaulnier (D-Calif.) introduced a private bill that would grant permanent resident status to Isabel and her family, H.R. 4225. A private bill provides benefits only to specified individuals.

From 1817 through 1971, most Congresses enacted hundreds of private bills, but things have changed since then. The numbers declined rapidly in the 70s when Congress expanded administrative discretion to permit the executive branch to deal with many of the situations that gave rise to private bills.

Only four private bills have been enacted since 2007.

Nevertheless, as I said earlier, Isabel has an extremely compelling case.

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Isabel, however, is not the only person in the medical deferment program who needs to continue treatment indefinitely. Private bills should be considered for the others too.

And there is a critical need to continue the program for people who need just temporary treatment.

Lives depend on continuing the program and making it possible for people who need more than temporary treatment to remain here permanently. In some cases, such as Isabel, they are participating in medical trials that have the potential to benefit the rest of us as well.

Nolan Rappaport was detailed to the House Judiciary Committee as an executive branch immigration law expert for three years. He subsequently served as an immigration counsel for the Subcommittee on Immigration, Border Security and Claims for four years. Prior to working on the Judiciary Committee, he wrote decisions for the Board of Immigration Appeals for 20 years. Follow him on Twitter @NolanR1