Al's Comment:

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.

 

Young girl with incurable tumour may not receive lifeline treatment in New York