The National MPS Society, California Action Link for Rare Diseases (CAL RARE) and EveryLife Foundation asked patient organizations to sign on to a letter that asked the current Administration to ensure migrant individuals who are in the US participating in a clinical trial or who are receiving life-saving medical treatment have a legal pathway to reside in the US while treatment is ongoing and necessary.

Specifically, the letter expressed concern over the United States Citizenship and Immigration Services (USCIS) policy change to eliminate medical and humanitarian criteria from the deferred action program. With a policy change, patients who are in the US legally may be forced, with little notice, to return to their home country where patients may not have access to, in many cases, life-saving treatments.

The letter went onto to request that the Administration establish and clarify the process which migrant patients participate in clinical trials or receive life-saving treatments in the US and that they can legally reside in the US through deferred action or another program.

Each year, about 1,000 deferred action applications related to medical issues are granted for patients who seek to be in the US for medical care. Patients such as these often participate in clinical trials which make valuable contributions to the understanding and treatment of rare diseases.

The letter received support from 105 patient support groups. Narcolepsy Network was the only narcolepsy-specific organization to sign. The House Committee on Oversight and Reform Hearing occured on September 11, 2019 regarding the joint effort.