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July 25, 2012 at 2:35 am #20511MicheleNeilParticipant
To Whom it May Concern,
My brother Neil is 57 years old and battling Stage 4 Melanoma. He is an American citizen, with dual citizenship in Israel where he resides.
From the start of his diagnosis in 2007 he has been treated at Sheba Medical Center at Tel Hashomer in Israel. He has had 5 different treatments,
starting in 2010 when his disease metastasized. Three of the treatments were successful in giving him more time. His health insurance is in Israel,
and holds no policies in the USA!
He is single and has no immediate family to take care of him in Israel, when his illness progresses to it’s end.
We are at a cross roads, his disease is moving rapidly, and he has limited treatment options. A possible clinical trial may
be coming to Israel for Anti-PD1 in a month or two, but is not yet there. There are 2 clinical trials that he may be eligible for here in the States,
with the drug company Novartis. One is a BRAF Inhibitor and the other is a combination BRAF and MEK inhibitor. We are in the midst of finding
out whether he is eligible for either of these trials. And if not would Novartis be willing to administer any of these therapie to him compassionately.
The other question is if he is eligible or they gave it to him compassionately….would he be able to undergo the treatment in Israel where he has health insurance.
Our concerns are many; not knowing how quickly the disease will travel, and the need to get him whatever treatment gives us hope and time. Neil does
not have health insurance here…..so what will happen if he does come to the States for treatment with no Health Insurance. The financial burden of
that is unknown to us and frightening. Most importantly how will I be able to care for him through treatments here; if he needs hospitalization and medical
treatments. Also, if while he is here and we find ourselves out of options and he is unable to travel back to Israel. How will I provide him with the Hospice
care he will need; coming to his end with dignity, quality of life, pain management and the loving peace he so deserves?
I have offered a summary of where we are at and reaching out for anyone who can offer me advice and guidance through this very challenging time.
Thank you for your time and patience.
MicheleJuly 25, 2012 at 11:28 am #55682Catherine PooleKeymaster
I’m sorry to hear about your brother. They are quite advanced in Israel with melanoma treatments. I am finding that compassionate use is unavailable for new therapies here in the U.S. and he would have to pay out of pocket for any trials or treatment here. He is far better with the policies in Israel. You could appeal yourself and I will look into the Novartis policy, but I have been down this road with our European patients, many of whom have spent their life savings coming to our institutions. I’m sorry I don’t have better news. But it is worth researching and I will see if I can find out about Novartis policy.July 26, 2012 at 5:26 pm #55683NYKarenParticipant
Just wanted to say hello and ask you what treatments your brother received in Israel. I’ve been through a few treatments here and was always a partial responder–nothing stuck. (radiation, Ipi–reinduction gave me colitis…and IL-2.
Your brother is certainly in good hands at Sheba. I’m curious, which drug company is supposed to be starting a clinical trial in Israel? Curetech is an Israeli company, and their clinical trial was stopped here in the US. Many people say it’s because the drug wasn’t working, now there’s some word that that isn’t the reason…I don’t think anyone really knows.
By the way, the Anti PD-1 trials I’m aware of have a 3-prior-treatment limit, meaning if he’s had more than 3 prior treatments, he’s not eligible for Anti-PD1. That’s why my onc has been holding off starting me on chemo, because that will be my 4th treatment, in the hopes that something would open up in a PD-1 trial for me, which doesn’t look like it’s happening.
I reallly hope something positive turns up for your brother.
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