Monday, April 14, 2014

Compassionate use of drug

Joey needs your help. This is how bad Joey's tumors look. The solid black parts are brain, heart, bladder, etc and all other areas in tummy, plevis, chest, airway, neck are his tumors. All these tumors are eating out his energy, nutrition and his tiny body.
Now there is one drug, a promising new drug, can possibly save his life. It's called Nivolumab from Bristol-Myers Squibb Corporate. It's one of the anti-PD-1 or anti-PD-L1 immunotherapies. This drug has saved the lives of many late stage adults RCC patients. The pediatric trial of this drug was supposed to start in May, but now postponed to Oct. We cannot wait for the PD1 trials to start in children as they keep on being postponed and Joey needs treatment urgently. A lab in UF tested both Joey's primary tumor and lymph node tumors, they all tested positive to PDL1. His oncologists in Cincinnati Children's and Shands and an immunotherapy specialist in Harvard believe the anti-PD-1 or anti-PD-L1 immunotherapies, including Nivolumab, are the most promising option for Joey and they will request the compassionate use of the drug from FDA.

For the grant of it, there are two important things: The drug company must agree to allow the use of their drug outside of a clinical trial. The FDA oncology medical officer in charge of overseeing the new drug’s development must approve the use of the drug. My dear friend, who is a lobbyist, will contact Florida congressmen and senators and the general attorney of Florida and they will send my letter to the drug company. So please, if you happen to have some connection with government or this particular drug company, please contact me. Please spread the words. This is a very hard and long process, but we will try our best. I probably will run the social campaign, newspaper, TV station and online petition, anything we need to do. If you have experience or any suggestions, please let me know.

This is all very overwhelming to me and I hear the clock clicking. Joey is not doing well. He is very tired all the time. When he eats, he puts his hands on the stomach to make him comfortable. I can literally feel his tumors in tummy and neck. They are bigger. They are aggressive. Dr. worries about tumors by his airway and asks me to watch his breathing. I want to pull him out of school and rest. But he doesn't want to miss FCAT again this year. So I took him home after the test. Looking at his report card, I can't help crying. All "A", he never bring a "B" home despite of so many absent and tardiness. I can't watch him eaten away by tumors knowing there is a promising drug out there, but we can't get it because of the system.

Please help us, any suggestion is appreciated! Again the drug is Nivolumab from Bristol-Myers Squibb Corporate. I need contacts in the government and this drug company. Thank you all for your supports!

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