The latest news:

• FDA Grants Rare Pediatric Disease Designation to ONC201 for the Treatment of H3 K27M-Mutant Glioma         This is a great sign.. This experimental drug, Onc-201 is the first treatment ever that targets diffuse midline glioma and DIPG.  Early results look very good.  Our organization has given them many grants to try to speed up this process, but getting Rare Pediatric Disease Designation, along with Orphan Drug and Fast Track designation will hopefully allow the FDA to approve it sooner rather than later!
  



• Trump administration unveils four executive orders aimed at lowering drug prices         I deal with this problem every day. Patients can not afford their medications.  We have been running a copay assistance program to help brain tumor patients get access to their medications. We have awarded grants to patients totaling over $7 million.  However we ran out of money and had to close the program to new patients.  We keep getting calls from desperate patients looking for help with these copayments and right now no programs are open to help them. Many are doing without treatments. Not acceptable.

   

    The president signed an executive order today that allows us to buy drugs from overseas.  The usual cost for the first prescription of Temodar is usually over $10,000.  In India, that same dosage could cost $100.  This drug went generic years ago but here in the USA it is still expensive.  I doubt if the prices will go down to the levels in India but even the UK charges about $3,000.  Would be great to level the playing field and have all countries that can afford it pay the same rate.  Of course I wouldn't want the poorer countries to have to do without it.

   
  

BrainTumor Co-Payment Assistance Program Status:

• CLOSED to new applicants