[Congressional Record Volume 168, Number 198 (Tuesday, December 20, 2022)]
[Senate]
[Pages S7804-S7805]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




 FOR THE RELIEF OF MARIA ISABEL BUESO BARRERA, ALBERTO BUESO MENDOZA, 
                    AND KARLA MARIA BARRERA DE BUESO

  Mrs. FEINSTEIN. Mr. President, as in legislative session, I ask 
unanimous consent that the Committee on the Judiciary be discharged 
from further consideration of H.R. 785 and the Senate proceed to its 
immediate consideration.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The clerk will report the bill by title.
  The senior assistant legislative clerk read as follows:

       A bill (H.R. 785) for the relief of Maria Isabel Bueso 
     Barrera, Alberto Bueso Mendoza, and Karla Maria Barrera De 
     Bueso.

  There being no objection, the committee was discharged, and the 
Senate proceeded to consider the bill.
  Mrs. FEINSTEIN. I ask unanimous consent that the bill be considered 
read a third time and passed and the motion to reconsider be considered 
made and laid upon the table.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The bill (H.R. 785) was ordered to a third reading, was read the 
third time, and passed.
  Mrs. FEINSTEIN. Mr. President, this is truly a tragic case. The young 
woman on my right was born in Guatemala. She suffers from a rare life-
threatening disorder called MSP type VI. This is a genetic condition 
caused by the absence of an enzyme that is needed for the growth of 
healthy bones and connective tissue.
  She uses a wheelchair, has a shunt in her brain, and requires a 
tracheotomy to help her breathe. Because this was a clinical trial in 
2003 when Ms. Bueso was 7 years old, doctors invited her and her family 
to come to California so that she could participate in a clinical trial 
to treat her condition. That trial led to the development of a 
treatment that is now approved by the FDA. It is a 6-hour infusion of a 
prescription drug that replaces the enzyme lacking in people with MSP 
type VI.
  Ms. Bueso now receives this lifesaving treatment every week at the 
University of California San Francisco Children's Hospital. This 
treatment is not available in Guatemala. If she were removed from the 
United States, she would no longer have access to the lifesaving 
medical care she needs. She would die.
  For the past 10 years, Ms. Bueso and her family have received 
deferred action from U.S. Citizenship and Immigration Services so that 
she could continue receiving the treatments that keep her alive.
  In 2019, she and her family were notified that their extensions of 
deferred action were denied and that they would be deported if they did 
not leave the United States within 33 days. This decision was, 
effectively, a death sentence for this young person. USCIS ultimately 
reconsidered its decision and granted Ms. Bueso and her parents an 
additional extension of deferred action.
  But since then, she and her family have lived in fear that they might 
be forced to leave the United States with no way to provide for the 
care she needs. She has beaten the odds because of one thing--the 
lifesaving treatment that she is receiving in the United States.
  She is now 26 years old. She lives in Concord, CA. She is a 2018 
graduate of Cal State University in the East Bay, and I am very proud 
of her. She has become an outspoken advocate on behalf of people with 
rare diseases. Her family pays taxes, owns a home, and is active in 
their community. The Bueso family will now be allowed to remain in 
California, where they will continue to enrich their community and 
where Ms. Bueso will be able to receive the care that allows her to 
live a life and to thrive.
  So I thank you, and I know my colleague Senator Padilla is here on 
the floor. I would yield to him.
  The PRESIDING OFFICER. The Senator from California.
  Mr. PADILLA. Mr. President, I, too, want to thank Senator Feinstein 
for her years of effort to get to this point. I am proud to stand today 
and now celebrate the passage of H.R. 785, which will provide relief to 
the Bueso family.
  As you heard, the Buesos came to California 20 years ago from 
Guatemala because their daughter Isabel had been diagnosed with a rare, 
dangerous genetic disorder that can cause enlarged organs and skeletal 
abnormalities.

  Let me be clear. She was invited--that is right--invited to the 
United States to participate in a clinical trial at that time by 
doctors in the San Francisco Bay area to help find a treatment for this 
condition. Thanks to her participation in this clinical trial, doctors 
eventually identified and created an effective lifesaving treatment for 
this disease, not just to help save her life, but others. So, yes, her 
participation, the treatment that was developed, will save lives of 
Americans.
  To this day, Isabel Bueso depends on this drug, which is administered 
to her at a hospital in Oakland, CA. But more than that, without this 
treatment, which is not even available in Guatemala, doctors have said 
that she cannot survive without it. Here at home in America, Isabel is 
an inspiration to countless others. As you heard, she graduated summa 
cum laude from California State University East Bay, where she didn't 
just graduate with these honors, but she helped create a scholarship 
for students with disabilities and is now active as an advocate for 
immigrants and others with disabilities.
  I was proud to cosponsor this bill because there are few options left 
for this family to adjust their status. Isabel has renewed her medical-
deferred action status every 2 years for the past 20. Her father 
obtained H-1B status, but Isabel is now too old to be considered a 
dependent who could then adjust to get a green card. That is a story 
for another day.
  We know the urgency with which we need to modernize our immigration 
system, but this is a classic example of folks that are harmed by the 
overdue modernization of our immigration system. Isabel and her family 
have deserved better than to be stuck in this limbo for so long.
  Colleagues, I am grateful for your support for this measure, which 
was approved unanimously by the House of Representatives already. As we 
are in the holiday season, all I can say is that I am grateful that the 
U.S. Senate was able to pass this bill today.
  Thank you, Senator Feinstein.
  I yield the floor.
  The PRESIDING OFFICER. The Senator from California.
  Mrs. FEINSTEIN. May I just make one remark? I want to thank the 
Senator for his excellent remarks.

[[Page S7805]]

  Once in a while, we have a case that is really so difficult and sad 
to solve, and this is one of them. It happens to be a constituent of 
both of ours in California, and they have asked for help. I hope this 
Senate will respond and give that help.
  Thank you very much.

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