Please grant 10-year old Juntao (Joey) Xu compassionate use of your anti-PD-1/L1 immunotherapy drug.
Joey Xu is a fourth grade student from Gainesville,
Florida. He is an artist, plays violin, and loves science, math and
reading. He is also a Boy Scout and an avid origamiist. My son also
insists that I tell you that Joey is really fun and kind.
In March, 2013, two weeks after his
9th birthday, Joey Xu was found to have an abdominal mass on his left
kidney. His diagnosis was a form of kidney cancer that is so rare that
there are no pediatric specialists for this type of cancer in the
country, and no standard treatment protocols. Even after a year of
treatment, including 2 major surgeries, several courses of chemo and
other drugs, his tumors have grown and spread. He now has tumors
throughout his chest, abdomen, pelvis and neck. They are affecting his
ability to eat, and will soon affect his ability to breathe.
However, a new line of immunotherapy
drugs that target the type of tumors that Joey has (tumors expressing
PD-LI) are being developed, including one called Nivolumab by
Bristol-Myers Squib, MPDL3280A from Genentech and MK-3475 from Merck.
Nivolumab is already in trials and saving the lives of adult cancer
patients. Pediatric trials of Nivolumab were due to start in March, but
were delayed until October, and the aggressive nature of Joey's tumors
mean that he can not wait that long for access to the drug. Genentech
has an adequate supply of MPDL3280A, but both companies need to be
pushed to let Joey use them.
Joey's doctors at Shands/UF and the
Cincinnati Children's Hospital and an immunotherapy specialist at
Harvard have determined that his tumors are likely to respond to
Nivolumab or MPDL3280A and his oncologists are willing to oversee
compassionate use of these drugs. His family fully understands the
risks with experimental medicine, but they have nothing to lose, and
much to gain.
Please sign the petition, forward to
your friends, and help publicize Joey's story. Hopefully Bristol-Myers
Squibb or Genentech will grant compassionate use of one of these new
drugs to Joey, so that he can continue to grow, and play, and learn, and
do all the other things a 10-year old should do.
Please share widely right now! If you
have any connections with media outlets that can help us get this link
out to more people, or to the decision makers at Genentech or
Bristol-Myers Squibb please leave a message at Joey's Facebook page https://www.facebook.com/xp11.2TFERCC or email Joey's mom, Kathy, at kathyoasis@yahoo.com
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