AJ de Montjoie talks about the reasons for working in clinical research.

Why do we work in research?

S-cubed supports many pharmaceutical organisations that are developing medicines and devices to treat acute and chronic diseases. When you talk to our staff and ask them why they are working in clinical research, it’s pretty much the same answer: ‘I wanted to help improve treatment for [insert your own thought here] or make a difference to [insert here].’ Our consultants come from a wide variety of backgrounds, scientific, medical, IT, programming, architecture (!), education and more but they are all focused on the goal of getting effective treatments out to patients faster. Of course, at the moment, many of our team are working on COVID-19 vaccines and trials, something that is hugely important but it’s good to remember there are other trials running too.

This time it’s personal

I have a strong memory of April 2016, my Dad thought he had sinusitis – his ears were blocked, his head ached, and he was feeling pretty rough. But he took some over-the-counter medicine and carried on. A few weeks later and his normal pleasurable activities, such as bowling and gardening were being ignored for long periods spent in bed. He felt like he had a really strange case of flu.

Suddenly the picture changed. I can remember the words he said when I visited one Sunday afternoon,

‘I think I am really in the soup this time kid.’

The GP said he needed a blood test and clearly knew that something was seriously wrong, he just wasn’t sure what. We asked if it was cancer, the doctor didn’t think so. Was it an acute sinus infection? No. He mentioned something about vasculitis, we had no idea what that was.

A day later, Dad was admitted to hospital with his kidneys not really working properly and the following day, he was transferred to the Royal Devon and Exeter Hospital by ambulance, with me following behind, carrying all his personal stuff. At this point, I still had no idea what was going on. It was only later that day that a consultant came and spoke to us about plasmapheresis and dialysis, along with giving EPO. Despite Dad being so ill, he joked, ‘Will I be able to do the Tour de France?’ We’d gone from sinusitis to something much more serious in 2 days.

Vasculitis

If you don’t know, vasculitis is an autoimmune disease and comes in a variety of forms, all of them involving inflammation of the blood vessels which as you can imagine is not good for your kidneys or any of your other organs. It’s pretty rare. ‘You’re one of 8 people in a million,’ said the consultant to my Dad, ‘Can the students come and chat to you, they probably won’t see this again?’ The particular flavour of vasculitis my Dad had was Granulomatosis with Polyangiitis. It attacks the blood vessels in the nose, sinuses, throat, lungs and kidneys and, if left untreated, it’s fatal.

As a family, we were lucky, one the UK’s leading consultants in vasculitis was in the RD&E. And we thought they could fix everything that was going wrong. However, the damage to Dad’s kidneys was devastating and the treatments brutal for a man in his 80s. Medicine can only take you so far.

Kidney Failure

Kidney DialysisMost people reading this will not have experienced kidney failure. In fact, before I spent any time listening to and learning while sitting with my Dad connected to a dialysis machine, I assumed that it was possible to live with kidney failure for a very long time. Dialysis machines are extraordinary medical devices but they are not a long-term solution.

Dialysis machines do the work of your kidneys by:

  • ensuring that waste, salt and water are removed
  • keeping safe levels of chemicals balanced in the blood like potassium, sodium and bicarbonate
  • helping to control blood pressure

Average life expectancy on dialysis is 5 – 10 years and it can be 2 – 4 hours, 3 times a week, sitting connected to machine. What you might not also be aware of is that the diet on dialysis is restrictive too. For instance, did you know that tomatoes and tomato sauce are to be kept to a minimum or avoided altogether, even bananas have to be avoided. Perhaps, if we all understood the impact on well-being and people’s lives, we’d have a greater understanding of why young people, in particular, are desperate for a transplant.

World Kidney Day and Month

So, it was World Kidney Day on 11th March and is National Kidney Month in many countries right now. I thought long and hard about writing this, but it’s always important to reflect on why we step into research. Without years of research into treatments, medical devices and fantastic clinical staff, my Dad wouldn’t have been able to share two precious years with his family until he finally passed away from renal failure. As you are working on your SAS program, regulatory documentation, data dashboard, don’t forget the amazing impact you have on lives around the world.

As a small note, it was Mother’s Day in the UK last weekend and I wanted to mention all those carers who look after those with kidney disease and vasculitis. My Mum is a powerhouse and she ensured Dad had the best quality of life and care right until the very end. Please support your local kidney or carers charities as they provide vital support.