I’ve just read an article that discusses a dying Myeloma patient, who unfortunately passed away on the 1 January Alessandro Liberati, the Head of the Italian Cochrane Network.
Liberati concluded one of his last communications this way: “Patient advocacy groups in myeloma spend millions to support research, hoping to promote better care. With public support they should be in a strong position to call for a redefinition of the research agenda, in the interests of patients.”
The article goes on to talk about the pharmaceutical companies doing most of the research into Myeloma treatment and providing most of the funding. This leads me to believe that a cure for Myeloma is less likely to be be founds by any of the research that they do and much more likely by Scientist at Universities. The reason being is that if a cure was found then the pharmaceutical companies lose billions of pounds/dollars. They wouldn’t appreciate a cure at all!
Is that harsh to think like that, I don’t think so. Businesses are there to make a profit, they are not going to be looking into spending millions on researching and development that they wouldn’t get their investment back on.
My recent post about the DCA – Sodium Dichloroacetate shows that the funding is in the wrong place. DCA seems to be getting great results in various cancers and yet doesn’t have the funding, you have got to ask the question ‘Why?’ and the answer is greedy corporations. Yes the drugs they are using now are much better that they were years ago and the prognosis for Myeloma patients is they are surviving longer than they used to, but eventually the majority of them die. If the same amount of Money was spent on looking for a cure, rather than a treatment, would myself and others with Myeloma be in the situation we are today. My personal thoughts are no, they would have a cure by now.
As you have probably guessed I’m now looking at various other options for treatment myself, rather than just rely upon the formal processes that I have gone through and don’t see to be effective on me. I don’t want to start on the Lenalidomide, only to find out that in a few months that it doesn’t work and they have used up all the options that the hospital provides and for them to say to me – It’s time to think about palliative care and sort your final affairs out; then be left with nothing. I’d much rather be prepared – I have nothing to lose if they don’t work, but much to gain if they do.
I will let you know how my research goes and will post any new therapies that I discover. I’ve just started a discussion with a doctor in the US about a patient he has that has just started using DCA who has Myeloma. He has asked me to contact him in a couple of weeks to see how he is getting on, which will be very interesting to me.
My Life with Myeloma http://mylifewithmyeloma.blogspot.com Sean Tiernan