So, I have been tossing up whether to post this for a while now and it's not to be controversial or to lambaste the drug companies that provide so many people with life saving or life extending drugs, but I just feel the need to get this out there and it's something you probably already know or have surmised.
Kickbacks, incentives, overseas trips, "overseas conferences", nice bottles of wine and the list goes on and I'm sure becomes more extensive or expensive. Don't get me wrong, if what the drug companies and doctors are doing is above board and totally legit and declared, well I say suck those drug companies dry, they have no problem taking our hard earned money, knowing most of us who are in terminal cancer stages specifically (obviously this happens with other illnesses such as MS, Parkinsons, ulcerated colitis etc, the list goes on, people need these drugs to survive and the drug companies know it, they certainly have us by the short and curlies, (for those of you born post 2000, this is slang for pubic hair, again this is hair that grows on your nether regions to help protect you from bacterial infections, also known as the map of Tasmania, bush, landing strip, carpet and the list goes on)for those of us who have ran out of traditional treatment options, we will mortgage our houses, sell or children's kidney, secretly post your husbands prized signed Muhammad Ali fight gloves on gumtree to try and raise funds for treatment or set up go fund me's which for many is embarrassing and demeaning, sadly those that need it most, often their pride gets in the way and they'd rather live on baked beans than ask a friend, let alone a stranger for financial help.
Basically it's a treat or die sort of thing and if you're told there is a drug that has shown really good promise in your cancer or something similar to the genetic make up of your cancer, of course you'd sell your soul to the devil to try this new "miracle" drug. Sadly these drugs are quite often not the panacea we are promised they will be and we as cancer patients jump on them, because they offer us that word again "hope", the one thing that we clutch too with our fingernails whilst we sit in chemo chairs for hours on end having toxic sludge pumped into our veins , holding onto sick bags, our head aching and cold from losing our hair to this miracle drug, our bodies either bloated or emaciated and all because a doctor has advised us this could be the life saving drug we have been waiting for.
Don't get me wrong I am grateful for these new treatment options and I for one am one of those people who jumps on most treatment options offered, I am one of those people that would always think, "what if?", they are offered to me few and far between for my never before seen cancer, so as you can imagine, the drug companies don't spend munch money on trying to find a cure for just one person, it just doesn't make sense economically or time wise, when they could be putting their energies and most importantly money into something that could save thousands.
Immunotherapy seems to be the next big thing in cancer treatment and here is my concern, one drug in particular that I was offered and it cost around $7000.00 every 3 weeks, if you were eligible the drug company would pay every second treatment for a total of three and you pay for the remaining 3 treatments, they tend to treat you with 6 of these intravenous treatments over 18 sweeks and then scan you to see if there is improvement. Now this drug in particular, like all drugs has a myriad of side effects that can occur (just like any drug you take, even paracetamol has some pretty scary side effects of you read them), one was that it can make your tumours grow, before it shrinks them, only problem being, they may grow, but the may not grow back to what they were or smaller, it also caused myself permanent lung damage, as immunotherapy can start to attack the healthy tissue of your organs, as it can't yet differentiate between the "cancer" cells and your "normal" cells, so we stopped after 3 treatments as the risks outgrew the possible reward of the drug for me. Here in lies my problem, I was told to try this drug because I had a good reaction to radiation, which is very rare for a person at my point of disease, so we worked out the costs, I was in a health fund at the time and thankfully, they paid half of my fee for each treatment I had to pay for. The thing is now I'm seeing it EVERYWHERE, so many people who read this blog write to me about it and the cost involved and the funding they need to get it etc. but when I ask what is the reason they have suggested this drug would be beneficial for them, they don't know.
This drug in particular has thrown melanoma treatment on its head and has it in a choke hold for the first time ever, it actually puts people in remission that were given no hope, the disease had spread to theireu bones and vital organs and in previous times this basically meant you're fucked, but this drug has shown so much promise, but did you know that these drug companies that make these drugs, wine and dine specialists in order to get their new drug out there. This is all of course is "speculation" Did you know specialists are attending conferences in places like Vienna, Vancouver and the list goes on? According to the Sydney Morning Herald, one supposed company spent $285,732 sending 24 oncologists to a five-day conference in Chicago with more than $10,000 spent on dinner allowance and this is just pittance, here's a link to the article, if you're interested http://m.smh.com.au/national/health/pharmaceutical-companies-splash-43-million-on-health-professionals-in-six-months-20160329-gnsy45.html dew which has much more interesting and expensive reading.
My whole point of this blog is the almighty dollar over life, very few people can afford $7000.00 every 3 weeks for a drug that holds no guarantee and then what if it does work? Oh happy days, but how is the average Joe going to be able to afford to continue to pay these exorbitant fees for an unknown period of time? They may need this drug for many years, what if this drug keeps them going until they're 85? Not everyone is James Packer with an endless money supply.
Money should not determine life and the fact that the deciding factor for many drug companies to proceed with making certain drugs is whether they will make money, is disgusting to me, I'd like to see a big drug company CEO sitting by the bedside of their bald, violently ill, in 24 hour a day pain, dying 34 year old daughter and simply deny them the chance at life because their disease isn't common enough and the costs of making the drug outweigh the return of selling it and to those specialists that have been practising the you scratch my back and I'll scratch yours since the dawn of time, maybe next time when your sipping on your cocktail in Puerto Rico, while your patient is back home scrimping the money together to pay for this new miracle treatment, you might think twice about pushing the new drug on your patient, just "because", remember this is life or death for us, not should I go for the Pina Colada or the Espresso Martini.
I also want to let you know that this like many things, does not apply to every oncologist or drug company, this is just something that has been brought up kore and more by you fabulous readers and it breaks my heart knowing that some of you will die, because a drug is not on the PBS and you simply can't afford this new
"Wonder drug", although whose to say it will even work anyway!
Life over dollar, not dollar over life, it shouldn't be a case of rich or treat, it should be humanity over monetary, just think of how many people may have died, just while you were reading this, because they can't afford treatment, doesn't feel right does it? 💵💸💷💶💰💉
Stay fabulous Rockstars ❤️🤘🏼
My name is Lisa Magill and I have been navigating the minefield that is cancer since just months after turning 30, people have been saying to me for years that I should put my thoughts into writing and as time has progressed I thought I had left it too late, well here we are nearly 4 years in and for some unknown reason I've decided to start to write today.