>>> UNIVERSITY OF CALIFORNIA HAS A GOOD CHILDREN’S HOSPITAL.
WHEN ISABEL WAS 7 YEARS OLD SHE
WAS INVITED TO COME TO THAT
FACILITY FOR TREATMENT.
ISABEL HAD BEEN BORN WITH A RARE
GENETIC DISEASE CALLED MPS 6.
IT MEANS THAT HER BODY IS
LACKING AN ENZYME THAT SHE NEEDS
FOR ALL SORTS OF THINGS.
IT CAUSES SEVERE DAMAGE FOR HER
BODY AND HER CELLS THAT WON’T
GET BETTER.
GET BETTER. UCSF WANTED TO LAUNCH AN
IMPORTANT CLINICAL TRIAL TO
LAUNCH A TREATMENT.
THEY NEEDED HER TO BE IN THE
TRIAL TO DO IT.
RARE IS AN IMPORTANT WORD IN
THIS STORY, RIGHT?
HER RARE DISEASE.
BY DEFINITION, FOR ANY RARE
DISEASE THERE JUST AREN’T THAT
MANY PEOPLE WHO HAVE IT.
THERE AREN’T THAT MANY PATIENTS.
THE WAY YOU GET NEW CURES FOR
RARE DISEASES IS TO FIND
PATIENTS WHO HAVE THE DISEASES
AND GET THEM INVOLVED IN TESTING
POTENTIAL CURES.
POTENTIAL CURES. YOU NEED TO BE ABLE TO FIND
PATIENTS TO DEVELOP THE CURES
AND BEAT THOSE DISEASES.
THAT’S HOW IT WORKS.
SO ISABEL, SHE AND HER FAMILY
WERE INVITED TO COME TO SAN
FRANCISCO FOR THIS EXPERIMENTAL
TREATMENT.
TREATMENT. BECAUSE THEY WERE ABLE TO DO
THAT, ULTIMATELY THE TREATMENT
THAT ISABEL RECEIVED IN THAT
TRIAL GOT FDA APPROVAL.
THAT FDA APPROVAL BASICALLY
WOULD NOT HAVE HAPPENED HAD
ISABEL NOT BEEN ABLE TO COME TO
UCSF TO TAKE PART IN THAT
CRUCIAL TRIAL.
CRUCIAL TRIAL. WELL, TODAY SHE CONTINUES TO BE
TREATED AT UCSF.
SHE GETS WEEKLY INTRAVENOUS
INFUSIONS.
INFUSIONS. REMEMBER, AGAIN, SHE CAME IN FOR
THE FIRST TIME WHEN SHE WAS 7
YEARS OLD.
YEARS OLD. BECAUSE OF HER ILLNESS, HER
FAMILY WAS TOLD THAT SHE MIGHT
NEVER MAKE IT TO SEE AGE 8.
ISABEL IS NOW 24 YEARS OLD.
SHE’S A SUMA CUM LAUDE COLLEGE
GRADUATE.
GRADUATE. SHE STARTED A SCHOLARSHIP FUND
FOR STUDENTS WITH DISABILITIES.
SHE SAYS SHE MAY WANT TO GO TO
GRAD SCHOOL.
GRAD SCHOOL. SHE TEACHES DANCE TO OTHER KIDS
WHO ARE ALSO PATIENTS AT THE
CHILDREN’S HOSPITAL THAT SAVED
HER LIFE.
HER LIFE. SHE STILL NEEDS TREATMENT.
AGAIN, SHE NEEDS WEEKLY
INTRAVENOUS INFUSIONS OF THIS
TREATMENT.
TREATMENT. SHE NEEDS SURGERY.
SHE HAS A TRACHEOTOMY WHICH IS A
DELICATE THING AND NEEDS
CONSISTENT AND DELICATE CARE.
SHE IS ALIVE WELL PAST WHAT
WOULD HAVE BEEN HER LIFE
EXPECTANCY.
EXPECTANCY. SHE IS ALIVE.
THAT IS A CONTINGENT THING.
HER DOCTORS SAY IF SHE STOPS
TREATMENT SHE WILL DIE AND NOT
ON SOME DAZE DISTANT HORIZON BUT
IN A MATTER OF MONTHS.
THE TRUMP ADMINISTRATION HAS
JUST SENT ISABEL AND HER FAMILY
A LETTER ORDERING THEM TO GET
OUT OF THE UNITED STATES IN 33
DAYS OR SHE AND HER FAMILY WILL
BE FORCED OUT FOR DEPORTATION.
FOR ISABEL, THIS IS SIMPLY A
DEATH SENTENCE.
DEATH SENTENCE. THE TREATMENT THAT IS KEEPING
HER ALIVE IS LITERALLY NOT
APPROVED FOR DISTRIBUTION IN THE
COUNTRY HER FAMILY IS FROM.
THAT’S THE TREATMENT THAT IS
KEEPING HER ALIVE.
WEEKLY IV INFUSIONS.
SHE DOESN’T GET THAT TREATMENT,
SHE’LL DIE.
SHE’LL DIE. SHE’S BEEN TOLD TO GET OUT OF
THE COUNTRY.
THE COUNTRY. TRUMP ADMINISTRATION’S OFFERING
NO APPEALS PROCESS.
HER MEMBER OF CONGRESS, MARK
DESONYEA, KAMALA HARRIS HAVE
WRITTEN TO THE TRUMP
ADMINISTRATION TRYING TO
ADVOCATE WITH THE FEDERAL
GOVERNMENT ON HER BEHALF, BUT
THERE’S NO PROCESS FOR THEM TO
DO THAT.
DO THAT. THERE’S NO APPEAL.
THERE’S BEEN A PRONOUNCEMENT TO
ISABEL AND HER FAMILY, GET OUT
AND GET OUT NOW.
THE PLAN, IN OTHER WORDS, IS TO
KILL THIS YOUNG WOMAN.
SHE WAS, AGAIN, INVITED TO THE
HOSPITAL FOR THIS CLINICAL TRIAL
WHICH COULD NOT HAVE HAPPENED
WITHOUT HER.
WITHOUT HER. THAT CLINICAL TRIAL, BECAUSE SHE
WAS IN IT AND BECAUSE IT WORKED,
PRODUCED AN FDA TREATMENT THAT
SAVED HER LIFE AND OTHERS WHO
HAVE THIS GENETIC DISEASE.
HER FAMILY WITH PRIVATE MEDICAL
INSURANCE.
INSURANCE. HER FAMILY CAME TO THIS COUNTRY
LEGALLY.
LEGALLY. SHE HAS NEVER DONE AN ILLEGAL
THING IN HER LIFE.
BUT THE TRUMP ADMINISTRATION
PLAN IS APPARENTLY TO KILL HER.