The average life expectancy of people with cystic fibrosis has risen from 56 to 64 in just two years, thanks to miracle drugs the Daily Express helped secure on the NHS.

After our campaign, NHS England and US pharmaceutical giant Vertex agreed a long-term deal for their range of vital cystic fibrosis pills, including Orkambi, Symkevi and Kaftrio – but 10% of patients with rare genes unfortunately cannot take them.

As the Cystic Fibrosis Trust charity celebrates its 60th anniversary, it hails “incredible progress” for the 11,300 people living with the genetic condition, in which sticky mucus attacks the lungs and organs.

In 1997, the average life expectancy for military personnel born that year was 31 years, and in 2010 it was 39 years. But in the past two years, it has risen from 56 to 64, more than double what it was 27 years ago.

But far from being complacent, CF Trust chief executive David Ramsden pledged at an anniversary event at the Royal College of Physicians in London to ensure that every British patient now has access to life-changing medicines his life.

He said: “Our latest data shows that the (cystic fibrosis patient population) is increasing in size and the average age is increasing and continuing to age steadily.

“The predicted median survival of someone born today is now 64 years in the UK – we have taken a big step forward. This really demonstrates the progress that has been made over these decades.

“People with cystic fibrosis live 24 hours a day, 365 days a year, with a disease that limits their life expectancy and impacts all their life choices.

“Too many people are struggling to get the support they need and are increasingly feeling the mental, physical and financial pressures of their condition.

“There is still much work to be done. We will not stop until everyone with CF can live unlimited lives.”

Call The Midwife star Jenny Agutter, 71, whose niece Rachel, 46, has cystic fibrosis, told the gathering: “I know there’s a long way to go, but the 60 years have brought so many extraordinary changes.

“There is so much more to do. My niece started Kaftrio a few years ago and it has made the biggest, most amazing difference in her life.

“But of course, only certain genetic forms of cystic fibrosis will accept it. Yet with more research and so many more exciting things, there is so much more happening now.”

Michelle Shore explained at the event that she is among the 10 percent of patients unable to take life-saving treatments because of her ultra-rare CF genes – but new trials and scientific research are giving her hope of a better future.

And the anniversary event also saw how many sufferers don’t get the support they need to manage a prolonged future they never dreamed of – and some never planned for.

Cystic fibrosis consultant Jane Davies OBE, professor of pediatric respiratory medicine and experimental medicine at Imperial College London, explained: “We really are seeing a very different era in the care of people with cystic fibrosis. »

A new study highlights the enormous mental toll the disease places on sufferers – with an alarming 43 per cent of those surveyed saying they worry about the future every day.

While 11 percent of patients who needed support from a CF social worker said they could not access it because no one was available.

The CF Trust was founded on February 20, 1964 and since then many significant advances have been made in the detection and treatment of cystic fibrosis.

In 1996 the Trust launched a campaign to have all babies tested for cystic fibrosis as part of a newborn screening programme, and in 2007 this campaign was rolled out across the UK.

But their 60th anniversary also comes as British patients face a crippling shortage of the drug Creon, which most take with every meal and snack to help them digest their food.

Due to a recent “limited supply” crisis from Creon manufacturer Viatris – blamed on their German third-party manufacturer Abbott – European pharmacies, hospitals and clinicians have had difficulty obtaining the pills.

It seems that the lack of certain fatty pigs in Europe has affected the quality of the enzymes used to make Creon.

We have been highlighting the alarming shortage of NHS Creon for months, reporting how families are traveling the length and breadth of England in desperate search of stock.

The faulty CF gene controls the movement of salt and water in and out of your cells, so the lungs and digestive system become clogged with mucus, making it difficult to breathe and digest food.

But Kaftrio only works in the body when taken with a meal high in calories and fat – and being high in fat, that meal needs Creon for the patient to digest it.

When a person with cystic fibrosis reduces fat in their diet, they can easily lose weight, which can then weaken their body and make them more prone to lung infections, infections, and serious illnesses.

Faced with a shortage of supplies, some NHS centers have written to CF patients suggesting they swap fatty meals and snacks for low-fat ones, which therefore require taking fewer Creon tablets.

An NHS letter sent to an CF patient that the Daily Express saw said: “If stock remains a problem, it may be worth swapping it for snacks that don’t need Creon, for example jelly, sorbet, popsicles and boiled candies. »

CFer Marc Cotterill, 42, from Stoke, Staffs, told us how anxious the CF community is feeling: “How did this happen without the health service finding other sources?

“I know some people are considering paying £70 to a US company for a jar of 100 tablets. That’s neither sustainable nor outrageous.”

A spokesperson for the Department of Health and Social Care said of the cystic fibrosis crisis in Créon: “We know how frustrating and distressing problems with the supply of medicines can be for patients, as well as for the pharmacists and clinicians who deal with it.

“This government has inherited a broken NHS as well as global supply issues which continue to impact the availability of medicines, including Creon.

“We are working closely with industry, the NHS, manufacturers and other supply chain partners to resolve current issues as quickly as possible.”