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Brilliant work... this lays the groundwork to find the combinations of drug needed to prevent resistance
Looks like Optune should now be available to just about everyone.
Sounds like an exciting new approach
Although this article is about leukemia, it probably applies to brain tumors as well. It says that more than half of the patients with a huge copay do not fill their prescription for cancer drugs. This is the reason I started our copayment assistance program. My dad had a big copayment for his GBM drugs and he refused to fill it due to the cost. He had the money but knew he would never work again and didn't want to deplete his life savings and leave my mom broke. The only way I could get him to take the drugs was for me to pay for it and then tell him I got free samples.
As the article states, some Medicare plans have a $4,700 catastrophic limit, after which they are covered in full. So I set up the Musella Foundation Copayment Assistance program to award up to $5,000 per patient per year to help pay the copayments for Temodar, Avastin, Gliadel and Optune. Usually after they use this up, the rest of the year is free to them. Many times I get frantic calls from nurses saying their gbm patient is due to start radiation today and can't afford the copay for the Temodar. If they delay the start or forego Temodar completely, they will not live as long. Medicare's payment system is resulting in people dying prematurely. In many cases we were able to get the grant approved within 15 minutes of receiving the application, allowing these patients to get the drug in time. It is really a life saving program. We have awarded over $3.6 million to patients so far! Unfortunately, we are now out of funding so the program is closed to new patients while we try to raise more money. We do not divert money from our brain tumor research grants program to use for the copayments. The only funds we can use for the copayment program are those that are specifically dedicated to this program. When making a donation on our website at https://virtualtrials.com/donate8.cfm there is a checkbox at the bottom asking where we should use the funds. Copayment Assistance is one of the choices. When people name our organization for memorial donations, we allow the family to select how the donations are used.
This is an effort to push for the use of patients quality of life endpoints in clinical trials. Anyone designing a clinical trial now should read this. It is a team effort of the Jumpstarting Brain Tumor Drug Development Coalition ( Accelerate Brain Cancer Cure (ABC2), Musella Foundation for Brain Tumor Research and Information, National Brain Tumor Society and the Society for Neuro-Oncology), led by David Arons of the NBTS
David Arons is the perfect person for them to pick for this panel. One thing that makes him uniquely qualified to be the patient advocate for the Cancer Moonshot Initiative is his experience in bringing together all of the important groups of people needed to make the project a success. Finding the cure for cancer isn't going to happen by just getting a few of the best cancer researchers in the world together. We need input from ALL of the researchers, as well as the patient advocates, device manufacturers, pharmaceutical companies, FDA, nonprofits and of course the patients themselves.
We are lucky to have David representing us! Good luck to him!
This makes sense. When the AVAglio trial was reported, it showed that Avastin improved progression free survival but not overall survial. This did not make sense to me, as I interact with a LOT of brain tumor patients and we track them in our brain tumor virtual trial registry. I always felt that Avastin does increase overall survival.
Looking closer, it appears that the trial was designed to allow patients in the control group who had progression to take Avastin after the progression. So in effect, they were comparing patients who took Avastin to patients who took Avastin and there was no difference. Duh.
This analysis seperates out those who did not have Avastin or other treatments after reccurence and it showed that there is an overall survival advantage for Avastin.
This needs to get into trials quickly.. however, caution (and a clinical trial) is needed because we do not know what else would be affected. For example, when the MGMT gene is methylated, the tumor is more sensitive to temodar and you live longer. Unmethylating it might put you into the worse prognosis group.
Sounds like a nice event!
I mentioned this conference in the last news blast. Just found out it will be streamed live tonight. 3 of my favorite brain tumor doctors will be speaking: Dr Cobbs, Dr Liau and Dr Prados.
Impressive gain in progression free survival. These trials should NOT even try to report on overall survival. They say 83% of patients in the control group took Avastin at the time of recurrence. So they are comparing patients who took Avastin to patients who took Avastin and found no difference in overall survival. Duh.
It is impressive that so many of the brain tumor foundation (including the Musella Foundation:) have come together to support this promising research.
This is a fun fundraiser where you can win $1,000 by picking the winning teams in the NCAA basketball tournament! It benefits the American Brain Tumor Association, Accelerate Brain Cancer Cure and the Musella Foundation!
First time I heard of the use of Optune in a 5 year old. I wish him the best of luck! If it works for kids, it would be a miracle, as it doesn't have the side effects associated with many of the chemotherapies. My favorite part of the story is where his mom says he "wakes up every morning smiling and goes to bed at night smiling".
This is a huge shock. Celldex is stopping development of thier vaccine treatment for GBMs. Apparently, the patients in the control group did a lot better than they were expected to do. These patients all were EGFRvIII+, which would usually make them have a worse prognosis. In this trial, they compared the standard of care PLUS the vaccine, against the standard of care plus the drug KLH. KLH is an immunostimulant which is actually a part of the Celldex vaccine. The result was the control group has about a 21 month average survival for newly diagnosed. This compares to the results of the Novocure trial's control group which was the standard of care as well as a mix of other clinical trials and avastin - which yielded an average survival of 16.6 months. Perhaps more work needs to be done on KLH alone, and I still feel the Celldex vaccine is worthwhile. It still had a 20% improvement over historical controls and is a simple shot in the arm with minimal or no side effects, which may be a building block for a cocktail that actually works.
I would love to see human trials of this.
This was not in brain tumors but the same mechanism may cause resistance to Temodar in brain tumors - so perhaps this would help.
Humana insures 10 million people in the USA, and now all of these people have access to Optune if they need it!
