How a New Longton student's life could now be enhanced thanks to the new drug Orkambi, which is to be available on the NHS following years of campaigning

Lucy Baxter
Lucy Baxter
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A Lancashire woman with cystic fibrosis who has spent three years campaigning for a new drug to be available on the NHS is elated that she has won her crusade.

On hearing about the benefits of the Orkambi drug, Lucy Baxter, of New Longton, became part of the national #LifeSavingDrugsNow campaign with Cystic Fibrosis Trust in 2016, joining scores of others in their fight for the drug to be more widely available.

Macy Helm, Lucy Baxter and Darcy Helm at the Bounce for Baxter event for Cystic Fibrosis Trust

Macy Helm, Lucy Baxter and Darcy Helm at the Bounce for Baxter event for Cystic Fibrosis Trust

According to studies, the drug targets the root cause of the condition, and would benefit around half of people with the condition cystic fibrosis, helping them to breathe more easily.

And now, the campaign has been successful, as NHS England announced it has secured a definitive agreement with Vertex Pharmaceuticals to make available all three of their UK-licensed cystic fibrosis medicines.

This means NHS patients will now have full access to Orkambi, Symkevi and Kalydeco, affecting around 5,000 people.

Lucy, 21, says: “I am so happy this drug has been approved.

“At first I was in shock and overwhelmed, but it has sunk in now.”

The #LifeSavingDrugsNow campaign gathered national momentum, with support from MPs, as Lucy and other patients spoke passionately about the life-enhancing medication.

She adds: “I was part of the campaign to raise awareness of cystic fibrosis as I was educating people on the drug and getting word out.

“We opened up the debate and working with Cystic Fibrosis Trust to talk to MPs and make them aware of what it does for us.

“We had a Skype conversation with independent MP Ian Austin, based in Dudley, and other cystic fibrosis sufferers, as well as South Ribble MP Seema Kennedy. I owe my life to Ms Kennedy, and to the health secretary Matt Hancock.

“We have been doing this for around three to four years and had a lot of setbacks with meetings.

“But we have had a lot of support from MPs.

“We didn’t know about the fact the drug had been accepted in advance. It just happened randomly as we got a Facebook announcement.”

Lucy is hoping to start the Orkambi drug later this month, which she says will improve her life dramatically and reduce the amount of physio and treatment she has to endure every day to keep on top of her condition.

At the moment, to maintain a good level of health, she has to do 45 minutes to an hour of physiotherapy on her chest, twice a day and has an additional inhaler antibiotic and 30 tablets morning and night.

Read more: New Longton woman with cystic fibrosis organises a Bounce for Baxter bouncathon and music festival for Cystic Fibrosis Trust

She says: “I was diagnosed when I was two-and-a-half, as I was not gaining weight and had a lot of chest infections.

“I get more out of breath easily if I am trying to exercise or keep up with my friends and I am more prone to chest infections.

“But this drug will improve my life expectancy.

“It make my life more stable and I can plan things in the future as my days will be more consistent.

“I won’t wake up feeling as bad and I will get less chest infections. It will improve my energy and I will be able to put on weight,

“This is the first drug that tackles the root cause, rather than covering symptoms up.”

Even though Lucy, who is studying at communications and media at Liverpool University, has achieved her goal, she is continuing to fund-raise for the Cystic Fibrosis Trust.

She raised £3,000 this summer during a bounceathon event and she is now organising a Carnival-themed black tie dinner at Dunkenhalgh Hotel, in Blackburn, on May 9, from 7pm.

For tickets, at £75, call Jill Baxter on 07751273873.

The evening will also include a silent auction.

In October, NHS England announced that people with cystic fibrosis in England will receive access to Orkambi and Symkevi as part of a two-year managed access agreement with Vertex.

According to the 2017 UK Cystic Fibrosis Registry Report, there are 3,968 people in England, 350 people in Scotland, 169 people in Wales and 156 people in Northern Ireland who could benefit from the drug Orkambi.

The government aimover s to have plans finalised by the end of November and intends to begin to roll out access where clinically appropriate to eligible patients this month.

According to Cystic Fibrosis Trust, Orkambi can slow decline in lung function - the main cause of death among people with cystic fibrosis - by 42 per cent.

Orkambi is a combination medicine, which helps to keep a healthy balance of salt and water in the organs – particularly the lungs.

For more information or support on the illness and the drug, visit www.cysticfibrosis.org.uk. http://www.cysticfibrosis.org.uk