This is a horror story that I am hearing over and over every day. The charity mentioned should be working on bringing the treatment to the UK so that families do not have to go through the stress or embarrassment of raining money and the hassle of traveling across the ocean to be able to get treatments for their kids. It would cost way less for the trial to be started in Europe than for all of these kids paying so much for the expenses to come to the USA. The huge costs mentioned in the article are NOT for the drug.. The drug in the clinical trial is supplied for free. The money is for the associated costs of travel, lodging, doctors visits, MRIs, blood tests and possible hospital costs.
And now these kids can not even fly to the USA if they wanted to (and were healthy enough to and could raise the money), due to the pandemic. Absolute nightmare. This should have been addressed last year. At this point, with the Coronavirus, it is difficult to raise the donations needed to fix the problem, so it probably won't happen until after the pandemic is over. Meanwhile, these kids are dying and do not have the time to wait. Our organization tried to raise the money to do it but were unable to. If anyone has any leads on where we can raise significant amounts of money, let me know. It is urgent now.
Rindopepimut With Bevacizumab for Patients With Relapsed EGFRvIII-Expressing Glioblastoma (ReACT): Results of a Double-Blind Randomized Phase II Trial This is a difficult study to interpret. There have been many trials of this vaccine. The early trials looked fantastic and this one looks pretty good. However, the largest randomized phase 3 "ACT 4" trial showed no improvement in overall survival. My thoughts are that the vaccine helps some people, with minimal side effects. Not enough to be used by itself but might be part of the ultimate cocktail. Treatments like this would be perfect candidates for the conditional approval pathway we are working on.
Researchers Uncover Racial Disparities in Brain Cancer Outcomes
Kids with brain tumors have enough problems without having to worry about discrimination. There is no place for this and it should be investigated. I first thought it might be related to insurance or poverty but the article said even if the patient has the same insurance they get treated differently based on skin color. Totally unacceptable.
I thought the USA was slow - Medicare approved it last year - about 4 years after it was approved for newly diagnosed glioblastoma.
It is troubling that there is such a delay between FDA approval and insurance payment approval. The same thing happened with Temodar and Avastin. In the USA, the Medicare approval process should start at the same time as the application to the FDA so the FDA and Medicare approvals come out at the same time.
