Deportation Threatens Life Of Immigrant Who Helped FDA Research | Rachel Maddow | MSNBC


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

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