Trevor's letter to the editor, Age Newspaper 11 May 2016. 'PBS listing only fair' At 64, I'm dying of asbestos cancer, also known as mesothelioma. Corporate greed and government neglect are responsible for the spread of this disease, which affects thousands of Australians. Yet the government refuses to make amends to sufferers. To stay alive, over the past six months I have paid $7000 every three weeks for immunotherapy treatment called Keytruda. The price was recently cut to $5000. Sometimes at my day oncology ward, I sit next to melanoma patients receiving the same drug. Yet they pay no more than $60, because the treatment has been listed on the PBS for melanoma but not mesothelioma. This drug is working well for me, far better than chemotherapy did. My tumour has reduced significantly, I'm off all pain medication and am able to live a normal life. I know of many similar stories. When will the government do the right thing by the hundreds of mesothelioma sufferers who are dying prematurely and put Keytruda on the PBS? Signed Trevor Grant .......................................................................................... I have come to know Trevor through his diagnosis of pleural mesothelioma in March 2015. Recently he shared his story on ABC 7.30pm Report on Television and ABC website. Hi Lou, I have mesothelioma and I'm writing to let you know I've been following for some time your admirable fight to get Keytruda on the PBS, along with your own personal situation. I have been on Keytruda since last November and it has made a huge difference to me. I'm also happy for you to use the following information. Best wishes, Trevor Grant (We have spoken at length via phone and plan to meet up soon). Trevor's story: Three weeks after my diagnosis I began chemotherapy (cisplatin/pemeltrexed). I had six sessions -- one every three weeks -- over 18 weeks. Although my relative fitness helped me get through the first three sessions, I struggled with the final three. I was pretty debilitated towards the end and needed a blood transfusion to get through the final treatment. I had also had a lot of pain in my chest and right arm. I couldn't walk more than 100 metres without the pain kicking in. I was also on strong pain medication. The chemo did its job. My tumour shrank but the pain persisted. Then two months later the tumour had grown back and the pain was as bad as ever. This is when Keytruda came into my life. After one session the pain had subsided, and by two, I'd taken myself off all pain medication. Suddenly I was able to walk as far as I liked. After my sixth session, a scan showed that my tumour had shrunk quite significantly. I've now had seven sessions and I'm living a fit and healthy life. I have no no side-effects. I do the gardening, walk for up to two hours a day -- the dog is always more buggered than me -- and I swim when I'm not walking. When I was doing chemotherapy I lived in a dressing gown and was never far away from the toilet bowl, or a plastic bucket. I couldn't walk more than 100 metres without pain and struggled to go anywhere. In other words I was alive but I had no life. Keytruda has given me back my life. Whatever happens in the future, I've been able to spend the past five months living normally. That's already a huge bonus. The drawback is that, because Keytruda is not on the PBS for mesothelioma, I have to pay $7000 per treatment, although I was able to get three free ones under a cost-share program. But that's it for the freebies. To stay alive I will have to pay as much as $120,000 a year. I find this grossly unfair, given that the disease I have is due to corporate greed and government neglect. And what's worse is that hundreds of people with mesothelioma simply can't afford it. I'm lucky that I have a pay-out from my court case to allow me to access it. Thankfully melanoma sufferers are able to access Keytruda on the PBS, and so many are doing well. ( I know. I sit next to them at the day oncology ward. The difference is that they pay about $40 for the same treatment that costs me $7000. It seems pretty unfair to me). It's time mesothelioma and other cancer sufferers were afforded the same rights.