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 origami master. 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 Nivolumab (BMS-936558) by Bristol-Myers Squibb, Lambrolizumab (MK-3475) from Merck, Pidilizumab (CT-011) by CureTech, MEDI4736 by MedImmune, and MPDL3280A from Genentech. Nivolumab is already in trials and saving the lives of adult cancer patients. We heard through the grapevine that pediatric trials of Nivolumab were due to start in March, but were delayed until May, then again to October. They can easily be delayed again for many reasons, 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, and could supply enough for Joey to use. The most likely option will be through Merck's Expanded Access Program. This program is already geared toward people 12 and older who have failed standard cures. (You can read about it here: http://clinicaltrials.gov/ct2/show/NCT02083484?term=MK-3475&age=0&rank=1 ). However, all these 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 one of these anti-PD-1/L1 immunotherapy drugs, 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, Merck, MedImmune, CureTech 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, Merck, CureTech, MedImmune or Bristol-Myers Squibb please leave a message at Joey's Facebook page http://www.facebook.com/xp11.2TFERCC
or email Joey's mom, Kathy, at firstname.lastname@example.org