I had the second cycle yesterday and Fedhealth are coming to the party.

Goodday Thank you very much for your signatures on this petition, it and all the other actions taken were successful. Fedhealth have agreed to fund the treatment on what they term “compassionate grounds” which are outside the policy rules. I don't know all the details as yet but they required us to furnish a S21 approval from the Medicine Control Council for the radiopharmaceutical which we duly did and today I received a confirmation from the Principal Officer that everything is in order. I expect to receive the official authorisation shortly. This should also mean that I should eventually receive back the money received in crowd funding and already paid out - Money that was absolutely vital as it allowed me to receive the second cycle of the treatment yesterday as I had to use that cash as to buy the Lutetium-PMSA that was used yesterday. I need to work out what to do with it now. As far as the treatment is concerned I am optimistic, one of the of the advantages of this theranostic approach is that the Lutetium is both therapy and diagnostic as a radioactive marker that lights up the follow up full body scan with a gamma camera. The follow up consists of 3 scans after 4 hours, 24 hours and 48 hours of the treatment. I have seen the first two scans so far but the specialist and one of my heroes in this saga, Dr Moshe Modiselle will consult with me after the 3rd scan tomorrow. Dr Moshe attended my meeting with Fedhealth which caused him to drive all the way to Roodepoort in morning traffic for which I am very grateful. The attitude I have experienced in the Department of Nuclear Medicine at the Steve Biko Academic Hospital has been an eye opener, top staff with a dedication to medicine and health like I have never found in any private facility. There are a lot of lessons that I have learned from this experience and I will write about them and post on my Facebook and my Medium profiles. Here are some of my thoughts at the moment. • Firstly it’s not over ‘till its over. I got a categorical no from the medical aid but opening the door to the Principal Officer using a combination of social media pressure, mainstream media, and an official complaint to the council of medical schemes and this petition helped firstly to get the matter escalated and also taken seriously. • Secondly my argument was well constructed, although I used emotive words, the options were exactly that; an early death or a chance at long life. I backed that up with what I regarded as quality research and a discussion regarding the difference between unregistered and experimental medicine. Experimental is a continuum from messing around in a lab to like in this case, multiple studies in different locations, by many top researchers with absolutely consistent results, just not enough for the process of registration yet but with registration inevitable. • The bureaucracy in registration provides a problem that makes the medical scheme rules and process completely inappropriate. Cancer drug innovation is rapid and the registration period is long. It’s illogical and irrational to have to wait for final Medical Control Council (MCC) registration that could take 5 to 10 years and during that time force the member into a certain and unnecessary death when there is a cost effective procedure that could save that patient. The medical aids need urgently to address this process. Certainly this doesn’t involve funding some of lunatic fringe solutions punted by the internet “snake oil salesmen”, but the definition of genuine evidence based medicine needs to be expanded to allow funding of a credible procedure. • The medical aids use a team called ICON to judge whether a treatment is indicated. The panell that decides on these things consist only of oncologists. Nuclear medicine although dealing with cancer is not standard oncology, although it uses radio isotopes it is also not radiation oncology and so the medical aids need urgently to consider getting nuclear physicians on these panels, people who are fully aware of the progress made in this still relatively new discipline (we estimate that there are only very few nuclear physicians in the country - probably around 20) • The medical schemes need to look at their internal escalation process. I went big because I was told that all the the doors were closed, Fedhealth criticized me saying that I always had access to a decision at a higher level and didn’t need to attack their brand, the thing is I didn’t know that. If Fedhealth and other Medical Aids want to defend their brand promise they need to make it operational as well as philosophical. • My impression of the cancer business is that it’s very routine, step 2 follows step 1, which is then followed by step 3 and so on and once there is nothing left you die. If it wasn’t for a Facebook friend’s suggestion I would never even have known about this therapy (she is a nuclear physician) but that’s far too random and a chance intervention to be good enough (luckily I've also created awareness and already enquiries have started - so change is happening). • For some reason I have found that prostate cancer has not built up awareness to the same extent that for example testicular and breast cancer have. In fact I am often told that it’s not serious and easy to cure, yes that is often true, but for 10% of sufferers it will kill them. It’s actually the second biggest killer by cancer of men and black men in particular have a genetic predisposition to a very aggressive version of the cancer. • I’m thinking of how to help change that and force this treatment which is still very expensive down the learning curve and accessible to everyone, health cannot be a commodity. Thank you for the support, thank you for the crowd funding that allowed me to have this treatment only a little bit late, thank you for Fedhealth listening to my argument and finally agreeing to fund the treatment. Thank you to Lauren from Campaigning for Cancer for your support and advice and that of all my friends, real and virtual. Thank you Nerisha from the bottom of my heart, and thank you to the dynamic team of nuclear physicians led by the visionary Prof Mike Sathekge who has made South Africa, University of Pretoria and the Steve Biko Academic Hospital a nuclear medicine international center of excellence. Dr Moshe Modiselle, Thank you to all of you as well, thank you for your kind words, for your affection, your care and your generosity. I’ll keep you updated. Walter The pic is of Power Sour Tots used to stimulate the production of saliva and so flush out the treatment from the glands and stop permanent damage occurring, issued by the hospital for post treatment care .