Update on Sept. 5: The U.S. Citizenship and Immigration Services announced earlier this week that it would postpone immediate elimination of the “humanitarian medical deferred action” program and reopen patient cases that were shut when the policy change was made on Aug. 7. It is not clear how reopening the cases will impact Isabel Bueso’s case, nor does it address long-term implications for her and others. UCSF is continuing to monitor this issue closely, working with Isabel and her family.
UCSF is deeply alarmed by a change in federal immigration policy that jeopardizes the life of one of our patients. The issue is the United States Citizenship and Immigration Services’ decision to eliminate a “humanitarian deferred action” program that has allowed our patient Isabel Bueso to remain in California and receive weekly lifesaving treatment at UCSF Benioff Children’s Hospitals for more than 16 years.
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 letter the family received from USCIS says that she must leave the country within 33 days – 16 days from now.
We urge the Administration to take action to reverse the policy change before harm comes to any patients affected by this action.
“This unilateral and unannounced policy by the Administration to shut down access to life-saving care for patients like Isabel, who are legally residing in our country, is contrary to the most fundamental notions of basic human rights,” said UCSF Chancellor Sam Hawgood. “UCSF’s mission is to provide care for all patients, regardless of race, religion or immigration status, and we will continue to do so.”
The change in policy requires Isabel and other patients dependent on life-saving medical care to leave the country within a month of receiving notice, without any opportunity to appeal the decision. In Isabel’s case, she is being asked to relocate to a country that does not have approval to administer the life-saving treatment she needs.
Isabel has participated in research studies led by Paul Harmatz, MD, of UCSF Benioff Children’s Hospital Oakland, for her rare genetic condition MPS-6 – which causes growth failure, cardiac valve disease, respiratory failure, blindness, spinal cord injury, among other abnormalities – since she was 7 years old. She is now 24 years old and cannot survive without the weekly enzyme infusion therapy she receives. 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. 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.