Avastin

Early last summer whilst suffering a series of humiliating tennis defeats at the hands of my brother, I aggravated an old shoulder injury. As the summer rolled on I played through the pain in pig-headed fashion desperate for a victory before autumn arrived and stole any hope of an immediate change in fortune.

As the summer of 2017 concluded I would have been hard pressed to tell you what was more painful. The shoulder injury or the realisation that I would not produce a single victory against Ben that year. The ongoing ridicule that persists from him and my father about this series of unlucky (admittedly my word not theirs) losses is one reason for me to try to remain as healthy and strong as possible for as long as possible, to ensure I snatch back the crown at some point (although given how appalling my performance was when I played with friends a few weekends back it’s clear I have yet another mountain to climb if I’m to achieve this!).

Autumn inevitably arrived and on one cold, wet morning in October I received a pop up email at work reminding me that if I wanted to opt in to BUPA this year the deadline would be by the end of the week. The shoulder injury, although much less painful, remained a lingering dull ache that I carried with me daily and the griping pains from my diagnosed ibs were still coming and going. I knew if it worsened it would take some time before I could see a specialist on the NHS so thought I would utilise this opportunity to opt in to private medical insurance.

Little did I know that two months later this decision would change my life.

My treatment transferred from The Royal Free to The Royal Marsden in March this year and whilst I knew I had private insurance in place I stayed with the NHS on the belief that my chemotherapy regimen would be the same. This was the first naive assumption I made during the early days of my diagnosis.

My first consultation with my new oncologist took place a month after chemotherapy started and this time I felt better prepared. Two weeks prior I was notified that the genetic profiling of my tumour had come back and I was BRAF positive which meant I fell within the 15% subgroup of colon cancer patients whose cancer is more aggressive due in part to its unresponsive nature to most treatment options.

With this in mind I knew it was time to pull my socks up and start researching alternative options and clinical trials in the hope of a better prognosis. My current regimen of Folfox would only work for so long and I needed a plan b.

Initial research kept leading me to a drug called Avastin. When I asked my oncologist about it he underplayed the benefits of the drug explaining also that it wasn’t on the NHS and was expensive. ‘How much?’ Ben asked, ‘we’ll get the money’.

I understand from my oncologist’s perspective why he was discouraging this drug. Sat in front of him was a brother and sister desperate for better options but with no evidence that we had the money or means to raise the funds necessary. I transferred as an NHS patient so he was unaware I had private medical insurance. I am sure he is trained to never to overplay a treatment option a patient may not be able to afford, it’s unfair and risks a patient becoming more depressed at a time when they need to focus on the gruelling treatment available to them.

Once BUPA confirmed they would fund Avastin I emailed my oncologist and received a call back within minutes, this time he was much more enthusiastic about the treatment explaining that as a BRAF patient I should absolutely be on this drug. He explained that whilst the NHS wouldn’t fund it it is used as a standard of care treatment option throughout most other western countries.

I’d always read in newspapers people campaigning for drugs not funded on the NHS but never really appreciated the frustrations patients felt until now. I did some more research on this drug and discovered that the National Institute for Health and Clinical Excellence (NICE) refused it on two key grounds; the first that the data showed that on average it only improves survival by six weeks, the second that it would cost c.£21,000 per patient (although this is a headline figure, Roche, the drug manufacturers did offer additional add ons and deals which would have seen the net cost per patient some way below this level). On the face of it it doesn’t sound too unreasonable a decision from NICE. All that money for a six week extension on life doesn’t really sound like ‘money well spent’ which is something NICE regrettably have to consider.

The only thing I couldn’t understand was why it was used as a standard treatment of care option for bowel cancer patients throughout the rest of the western world if the benefits of it were so poor? As I continued my research I was shocked to discover that there was a lot of data out there that completely contradicted NICE’s rationale. More than that I was becoming friends with more and more bowel cancer patients who were on this drug and it was keeping them alive much longer than the six weeks suggested. I couldn’t understand it.

I now know that one of the key discoveries of cancer is understanding that no two peoples cancer is the same. Put in the most basic of terms when a tumour is genetically profiled it will differ from patient to patient depending on things such as; what mutations,if any,the tumour has, how much of the tumour is mutated, whether the tumour is stable or unstable, benign or malignant. I am of course talking on a very basic level here but this is something oncologists now consider.

For Avastin the data shows that whilst it does not benefit every colon cancer patient (and the reality is no treatment ever does), there is a sub group of patients where this treatment has proven advantageous. One of these sub groups is BRAF mutated patients.

Why then wasn’t Avastin at least offered to this sub group of patients? BRAF patients are not eligible for two new biological treatments given to most stage iv colon cancer patients alongside their chemotherapy because it’s known we won’t respond to it. It seems only right, therefore, that this is offered to as an alternative?!

For many of you you may be wondering why I care. After all I don’t have to pay for it. The problem is this, when you are hit with this bloody thing you end up making friends with some truly special people who are also dying of this disease. It’s one thing raising funds for experimental treatments (which is what Ben has been so fabulously doing for me) it’s another to have to watch people raise funds for a drug that is already widely used throughout the rest of the world and has a proven track record.

I absolutely believe in the NHS but the NHS can only exist as long as it provides a world class service with all treatment options available to every person in the country regardless of wealth or location. We are the sixth wealthiest nation in the world, our health care service must reflect this. In some areas of the health service I believe we are achieving this, however with a growing number of patients becoming ill with more chronic conditions the NHS does not have the capacity, funds or resource to cope.

In June this year a poll was carried out in which three quarters of the population all agreed that they would pay more tax if the money went directly into the health service. Surely therefore it’s time we no longer used the NHS as a political tool and instead ring fenced it outside of government agenda. Either that or we accept the alternative which is a dismantling of the NHS. Either way a change has to come if people are going to receive appropriate treatment. Avastin is a drop in the ocean. The next generation of cancer treatment options are becoming increasingly focused around immunotherapy. These treatments and tests to qualify for these treatments are tenfold more expensive than Avastin and with one in two people likely to get cancer, funding is going to become an increasing problem.

Meanwhile I’m left facing an awful dilemma. Whilst I am an advocate for the NHS, until it improves I’m actively encouraging all my friends to opt in to any private medical insurance packages at work and if they don’t have them to consider getting it anyway. The reality is if, god forbid, they found themselves in my situation I want the comfort of knowing they will get the best treatment available without the need to crowdfund. The problem is through encouraging this I am inadvertently assisting in dismantling the NHS and playing directly into the hands of pro privatisation groups. It’s an incredibly sad and frustrating dilemma to be in.