13/06/2014 08:31 BST | Updated 12/08/2014 06:59 BST

Joe Ellis and His Battle for Life Giving Drugs

I have recently become aware of a brave 13 year old, young man called Joe Ellis. He has a form of cancer called primary mediastinum large B cell lymphoma, which he was diagnosed with in 2013. Joe's family along with doctors have been looking at the best options for treatment and have found a new drug from the US called 'Brintuximab'. It has been used successfully in the States in cases like Joes and a licence has been agreed to allow the drug to be used in the UK, but, and there is always a BUT. A decision to fund the treatment will not be made until July 2014. This is too late as Joe needs the treatment NOW.

Joe Ellis and his mum


I have been puzzling over this since before Joe was even born. Billions have been given to Cancer charities over the years. 2013 alone saw Cancer UK alone raised £460 Million from fundraising with 82% of each pound donated was available to beat cancer. Of which they invested 18% to raise future funds. Figures taken from: research_uk_annual_report_and_accounts_2013.pdf

Now please do not think that I am blaming Cancer Research UK. They are one of many charities involved with trying to eradicate this terrible disease. However we have a situation here where this brave lad is willing in effect to act as a guinea pig and although many of his friends and family may have regularly given to a charity over the years, when it comes time for a charity to do some good at the coal face, it appears that policy and bureaucracy interferes.

What is the point in developing new drugs if it is then too expensive to be trialled? Why if the drug is experimental would the recipient need to pay for it anyway? Do drug companies not need to find out if the drug works? Surely the more triallists they have the more accurate their trial will be in terms of its results! Once the drug has been proven to do what it was intended, the drug company will reap unimaginable rewards from sales. Finally if the only nations rich enough to buy the drug are the USA, Germany and maybe Japan, then seriously isn't there something wrong morally with that? We only have to look at how big the drug business is when we see Pfizer attempting to buy Astra Zeneca for £63 BILLION!

Joe's family are fervently trying to raise £100,000 for this treatment as the NHS would only authorise £20,000 at this stage! A request for the remaining funds will have to go before a board, but unfortunately that won't happen until July, and of course there is no guarantee it will be authorised. Joes treatment cannot wait until then and so his parents and friends are desperately doing all they can in an attempt to raise the remainder!

The NHS funds thousands maybe millions of pounds for cosmetic surgery. Cosmetic surgery will NOT save someone's life. I feel for those that do need this type of surgery, but IF you put Joe in a room with someone who was having let's say cosmetic nose surgery. Sat them both down and said well because we (the NHS) are paying for your cosmetic surgery, we cannot afford to buy the drugs which may save Joes life. Do we honestly think that the person awaiting the nose operation could live with themselves knowing they could have helped save this young mans life?

The point I am trying to make throughout this article is, that with the billions wasted in various ways. With the billions raised, apparently to help cure Cancer, HOW is it NOT possible to fund one hundred thousand pounds to possibly save this young mans life and potentially the thousands of lives in the future if this drug is eventually the cure for this type of cancer!

If you can help in any way, please visit Joes Facebook fund raising page at the following address.