NYT: Woman Receiving Lifesaving Rare Disease Treatment is Facing Deportation 

The New York Times reported that under the Trump Administration’s new immigration policy, six migrants undergoing lifesaving treatments have received deportation letters; including a young woman battling a rare disease.

This story illustrates how important having a voice is — and how important it is to lend our voice to others.

Without any public announcement, the US Citizenship and Immigration Services eliminated a “deferred action” program that had allowed immigrants to avoid deportation while they or their relatives were undergoing lifesaving medical treatment. The agency said that it received 1,000 deferred-action applications related to medical issues each year.

One of those affected is Maria Isabel Bueso, who at the age of 7, came to the United States from Guatemala at the invitation of doctors who were conducting a clinical trial for the treatment of mucopolysaccharidosis VI, or MPS-6. 

The trial was short on participants, and thanks to her enrollment, it eventually led the FDA to approve an MPS-6 treatment, which  has increased survival by more than a decade.

But now, facing deportation, Maria’s treatment would abruptly stop, which could end her life.

What is MPS-6?

Also known as Maroteaux-Lamy syndrome, MPS-6 is an inherited disease caused by a partial or complete lack of an enzyme known as arylsulfatase B. With this enzyme deficiency, the body starts to accumulate complex carbohydrates known as glycosaminoglycans, which can severely impact organ functioning.

It may cause dwarfism, clouded vision and spinal cord compression, among other abnormalities.

To read more about MPS-6, click here.

A ‘Death Setence’

Today, at 24, Maria has participated in several other medical studies and has won awards for her advocacy on behalf of people with rare diseases; appearing before lawmakers in Washington and in Sacramento. And over the years of being in the US, her parents have paid for her lifesaving treatment with private medical insurance.

So you can imagine how earth-shattering that deportation letter she got was — which her doctor, lawyer, and mother have described as a “death sentence.”

“I have been feeling super scared and overwhelmed,” said Maria. “The treatment that I receive keeps me alive.”

According to Paul Harmatz, the pediatric gastroenterologist who was involved in Maria’s original trial and has been treating her since 2003:

“Stopping this therapy will dramatically shorten her life span.” 

Across the country, doctors and immigration lawyers scrambled to understand the new policy and its consequences. In Miami, it meant possibly keeping an 8-year-old girl with nerve cancer from participating in an experimental treatment. Her father, who is in the country illegally, is the only parent available who can travel with her.

Another case the NYT mentions is a child being treated for sickle-cell anemia.

Bottom line — many feel that no child or person who managed to find treatment should be forced to stop it because of immigration issues. It’s hard to see a threat they pose, and many have benefitted by Maria’s willingness to participate in clinical trials.

In a statement, Boston Medical Center, a research hospital in a city that is a hub for clinical trials and innovative treatments, said it was “deeply concerned” about the new policy and how it would affect its patients who are receiving treatment for “extremely serious medical conditions.”

“We oppose any actions that could prevent people from accessing the health care they need.”

 


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