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What are Optune and Novocure?
Novocure is an international oncology technology company founded by Professor Yoram Palti and Optune is a cancer therapy made by Novocure that uses electric fields tuned to specific frequencies to disrupt cell division.
"Optune is a wearable, portable, FDA-approved treatment for glioblastoma (GBM) that works by creating Tumor Treating Fields (TTFields), which are electric fields that disrupt cancer cell division"
Its widely used in the US and other countries and following clinical trials it’s proven to improve overall survival at 2 years to 43% and 5 years to 13% rather than 5%. For anyone who is a patient or caregiver those %'s are life changing.
After researching and talking to other patients we saw Optune as an important step in keeping Stu as healthy as possible to give the peptide vaccination time to work.
We tried everything to access Optune for Stuart. He had private health insurance through his employers however they declined to allow cancer treatment to be included which meant that he couldn't access Optune and other treatments via his PMI.
We spoke to Novocure to ask them to allow Stu to use Optune via compassionate access because we had heard direct from other patients that they got it that way. We wrote to them several times asking but always got declined.
Stuarts PMI company also spoke to his employers to see if something could be done but that request was declined. His PMI company went above and beyond but ultimately were unable to assist.
We have heard from other patients that they have been able to pay privately but at a greatly reduced price rather than the £20k a month that patients are quoted. Stu was also not allowed to access Optune this way.
Stuarts oncologist Dr Matt Williams leads the only Optune clinic in the UK at Imperial Private Healthcare. Whilst they do not provide the device themselves, Imperial Private Healthcare is the largest referrer in the country. You can read more about it here.
There is a petition to allow UK patients to access Optune via the NHS however so far the government and NICE have declined despite it being FDA approved and widely used in other countries for GBM. It would be so great if you could click this link and sign the petition please.
Could we have fought harder? Could we have begged more? I think we did what we could at the time but still kept hitting brick walls. The more patients that try to access Optune the more the government and NICE will be moved to consider allowing access in the UK to a treatment with proven success rates in other countries and not at a cost of £20,000 a month.
Imperial Private Healthcare (email and contact details available in this link)