Note: The comments under each article title are the opinion of our president, Al Musella, DPM, and do not reflect official policy of the Musella Foundation!
03/09/19 Update on Medicare CAC meeting
Stay tuned - I will send out another news blast about this issue when the proposed rule is released!
Thanks to those who watched the video on Youtube. I think that helped. Nobody wants to be viewed as advocating for a 2 tiered health system in the USA where 95% of private insurances pay for Optune but our elderly and disabled won't be able to get it. Things like that can happen behind closed doors but not when everything is out in the open. Medicare did the right thing with this process. This was the first ever public CAC meeting for a device - they used to do these things behind closed doors.
03/09/19 Optune Open House
These are nice meetings if you are using Optune or are considering it!
03/05/19 Brain Tumor Advocacy Alert - we need you to watch this video Wednesday Morning 3/6/19 at 9am Eastern Time!
I need everyone to watch this video. Ask your friends to watch it as well - all on separate devices so each person gets counted.
You will probably see a lot of negative things being said about Optune. Take that with a grain of salt. The committee is trying to find an excuse not to pay for it and I doubt if any of the committee members have much experience with using Optune. We will point out the good things in our follow up letters!
03/02/19 The sneaky way estrogen drives brain metastasis in non-estrogen-dependent breast cancers
This may explain why using Tamoxifen for glioblastomas helped some patients. An old research paper (see https://virtualtrials.com/Tam1.cfm) from 1996 showed pretty good results using high dose tamoxifen for recurrent glioblastomas.
I had a relative who did well with high dose tamoxifen for over 5 years with her GBM, but it's use fell out of favor when Temodar arrived on the scene. Maybe it is time to go back and test this again in new combinations!
02/27/19 Medicare meeting about Optune! Tune in this Wednesday March 6, 2019
On a different issue, a few years ago, the medical director of Medicare told me that we will never get what we want from Medicare because the brain tumor community is not organized enough to apply pressure. We have to show them that is no longer true. We finally have a big step forward in the treatment of brain tumors and Medicare doesn't want to pay for it. This is the most important advocacy issue we face now. Trying to get additional funding for research is futile if we lose this battle because any new treatments will be expensive and if Medicare doesn't pay we won't have access anyway.
02/21/19 Major Advocacy Issue: Optune
We can not let Medicare deny access to FDA and NCCN approved brain tumor patients. It sets a dangerous precedent.
02/21/19 Malaria drug successfully treats 26-year-old brain cancer patient
We have been watching Chloroquine for a while. Some of our long term survivors have been taking it. My thoughts are it might help some other treatments, such as Optune, work better but there have been no trials to prove that. The next best thing is to watch patients in our registry.. If you are going to try this, please register with us before you start so we can see how it works out! Virtualtrials.com/brain
02/15/19 Statins, NSAIDS Have No Apparent Survival Benefit for Grade IV Glioma
There have been other trials that show statins and NSAIDS have helped brain tumors. This study says no (except Aspirin for grade 3 gliomas). It is hard to prove one way or another with such conflicting information. A randomized blinded trial would be the best way but that will never happen due to cost. The next best thing is for the registry to track these drugs - but record the dosage and length of time the drugs are used, then evaluate it over a large number of patients.