Cystic Fibrosis, Orkambi & Warrington Borough Transport

Originally published on Monday, 20 February 2017

On my way home from Pure gym, I was delighted to see Warrington Borough Transport (WBT) display a poster raising awareness about Cystic Fibrosis (CF) on the bus stop on Manchester Road opposite the Esso garage.

Had I not been driving, or the roads were busy at the time of travelling, I would have pulled over to take a photo of this as it really made my day to see such publicity in aid of a life illness that I and many others suffer from.

I thought it would be nice to give WBT an insight into what I’ve been through with the new exciting breakthroughs in regards to better treatments for CF, and also update the Warrington Guardian with how things have been since I did the QBW251 trial in October 2015, a drug that was to be the closest to a cure for CF.

Although the outcome of the QBW251 drug trial concluded with the drug not being as effective as predicted in lab tests, there have been other similar medicines that have made it onto the market and used by CF people who meet criteria due to high costs for the drug.

One drug, which was on the news in recent months, is called Orkambi. This is a pink tablet whereby 2 are taken twice a day with food.

Orkambi is on the market in America but is yet to come on the market in the UK due to high costs whereby for 1 CF person, costs mount up to £100k per year.

However, all is not lost.

There have been continual drug trials happening over the last couple of years to find a drug that either work in the same way as Orkambi or will work alongside to make Orkambi more effective.

I am currently doing a drug trial whereby I have to take Orkambi, which is being tested alongside a trial drug that’s inhaled to see the effects these combined drugs have on CF.

At present, I am on week 4 of the trial whereby I am taking Orkambi before I start the trial drug next Tuesday (28 February 2017).

The drug trial program is as followed:

  • Month 1 – take Orkambi only
  • Month 2 – take Orkambi and trial drug
  • Month 3 – take Orkambi only
  • Month 4 – take Orkambi, trial drug and Hypertonic Saline (a nebulised salt solution that helps clear the lungs)

At the end of the trial, as a reward for my volunteered help, I will be allowed to continue Orkambi.

The question you’ve probably been asking throughout this email is, “Have I noticed any effects of Orkambi?”

The simple answer is, yes.

“What effects have I experienced?”

I’ve been able to breath better and when I cough, the feeling I have in my lungs is as though nothing is there.

My coughing that occurs in the morning after a nights sleep has reduced dramatically to almost non-existent.

When I’m at the gym I am able to work that little bit harder on the exercise bike and my heart rate at its peak has dropped from 150 beats per minute to 120.

I am yet to know how Orkambi has affected my lung function. At the beginning of the trial, my lung function was 44%, so it will be interesting to see how this changes over the coming months.

Had it not been for the likes of Warrington Borough Transport and many others who raise awareness of CF, the donations raised for the CF Trust would be almost non-existent and vital drug trials, an example described above, will not happen.

It may have been one poster on the side of a bus stop that I have seen on my travels through Warrington, but if I have spotted the poster, there’s a chance other commuters and bus users will have seen this too.

I am pretty sure if every single person donated £1 after seeing the poster, this would help fund further investigations into vital treatments leading to a possible cure for CF.

So thanks again Warrington Borough Transport for your contribution in raising awareness of CF, a life-threatening illness.

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