An open letter to Matthew Hancock the Secretary of State for Health and Social Care – Orkambi access

This is my son Chester, he is 3 years old. He’s funny, cheeky, kind, affectionate and is literally always on the go, rarely stopping for anyone or anything. If you were to see him at pre-school surrounded by other children his age, you would see he looks and behaves no differently to his peers.

Whilst he is no different to look at, Chester is in fact very different to his class mates, because Chester has the genetically inherited condition Cystic Fibrosis. Right now, his future mental health, the quality of his life and his life expectancy, are hanging in the balance.

For years the Cystic Fibrosis community has waited with baited breath for a much-needed cure, or at the very least have held out for a treatment that treats the underlying cause of Cystic Fibrosis as opposed to just treating the symptoms. Imagine the excitement when Orkambi came along!

Yet we find ourselves in a predicament where despite a treatment being readily available in Countries across the world, we still do not have access in this Country!

In the three and a half years since my son was diagnosed I have witnessed too many parents having to bury their children and as a small and extremely close family like community the death of a child with Cystic Fibrosis affects our whole family. We mourn and our hearts break for those families, knowing all too well that as things stand that could one day be us!

Having watched the House of Commons Health and Social Care Committee inquiry on the availability of Orkambi on the NHS, I was left feeling incredibly deflated and let down. Somehow the welfare of my son and his future have become lost in a battle over finances. I think it’s time that the focus was shifted back to what this medicine can do for those up and down the country who are living and fighting this cruel condition on a daily basis.

Cystic Fibrosis has a huge impact on Chester, but also on our family. There isn’t one aspect of our life that Cystic Fibrosis doesn’t affect or impact on, from holidays, days out, activities or a normal daily routine Cystic Fibrosis always finds a way to interfere and wreak havoc. As much as I dislike the word, Cystic Fibrosis is a ‘burden’ on our family and the impact is felt by all of us involved in Chester’s life. From his brother having to take a backseat whilst he has treatments, to having to take time off work because Chester has appointments or is admitted to hospital because he is unwell.

Chester is still too young to understand the implications of his condition, and I dread the day I will have to tell him, because right now I find it incredibly difficult to find the words to explain the enormity of his condition in a way that he will understand. I worry about his health, I worry about how rapid any decline may be and on top of the physical implications I worry about his mental health, if I am struggling to deal with his diagnosis, how will he deal with something this big?

Having already spent approximately 25 weeks in hospital for bowel obstructions, exacerbations, pseudomonas growths, port surgery and bronchoscopies, much of his early life has been lost to sickness and admissions. That time doesn’t account for the additional courses of 14-day IV antibiotics we have been lucky enough to manage at home, or the monthly clinic appointments, the port flushes, the cough swabs or the additional check-ups when a cough is developing. It also doesn’t account for the hours of physiotherapy and nebulisers he has to do every day without fail as part of his daily routine just to keep him well. Given how unwell Chester was over his first years and the amount of treatment and admissions he required, I would anticipate his NHS bill to date to already be well above five figures.

Whilst Chester is front and centre in all this, I cannot dismiss the impact this condition has on the family, it is also huge, whilst I am extremely fortunate that my employer is incredibly supportive, and I have family around me to help and to enable me to continue with my chosen career, some haven’t been so lucky, having to give up everything they worked towards to become their child’s carer, always without a second thought. This can lead to a financial burden within the family and hardship when two wages are dropped to one.

Cystic Fibrosis is mentally and emotionally draining for all involved, there is always something to worry about, most of the worries are completely outside of my control, sometimes it doesn’t matter what I do, my child will be at risk and I have to live with the guilt of putting him in that situation every day.

Imagine having to sit up at night, tending to a breathless, restless child, or a child who can’t stop coughing and is exhausted just from sitting up and just breathing, imagine having to put your child through pain and suffering because in the long run it’s better for them. Imagine knowing as a mother I should be able to comfort and protect my child but can’t, it is painfully unbearable, this is my reality.

I wouldn’t wish this condition on my worst enemy, its cruel and it’s heart-breaking. I should be excited to watch my child grown up, to sit and wonder what he will be and what he will achieve , and I should be able to enjoy celebrating his birthdays’, but I live in fear that I could lose him before he reaches adulthood, the fear he may never get to experience life as it should be. No parent should live in fear of having to bury their own child!

The argument for Orkambi and other precision medicines has gone on so long, leaving the Cystic Fibrosis community emotionally drained, this shouldn’t even be a fight! Just when we think we are getting closer to a deal, our hopes are shattered and we end up back at the start. Time is passing far too quickly and for those that need Orkambi now, time is running out, and sadly for many it is already too late.

Whilst I am fully appreciative of the argument of clinical effectiveness versus cost effectiveness, especially when our NHS is on it’s knees financially, finding that we are being priced out of a drug is unacceptable and having no one to fight that battle is even worse. My child’s life is worth more than this!

A resolution is needed now!

No one in this negotiation can seem to come to an agreement, and no one seems to want to take charge. We need someone to get the parties involved around the table, take ownership and responsibility to ensure this deadlock is overcome.

My son didn’t ask for this condition, and I would give all I have to take it away, but we are where we are, nevertheless, he should be able to live with this condition with the same kind of normality as any other child, and where there is a drug that could help, that is widely available, there is no doubt in my mind that access to it should be a given.

I am appalled that in a time when mental health and emotional well-being is a hot topic and in some cases deemed to be a high priority, the mental health and well-being of Cystic Fibrosis sufferers and their families is being completely overlooked and ignored all in the name of money.

My son deserves more!