Patients with damaged lungs from asbestos exposure will now be able to access life-extending medicine for the first time.

A successful campaign against the ‘inhuman restrictions’ placed on the drugs – antifibrotics – mean those with pulmonary fibrosis caused by asbestos inhalation will be among more than 15,000 Britons with the disease who will now have the chance to extend their life by two years or more.

The disease causes scarring of the lungs and respiratory failure. However, drugs that slow the progression of the disease were only available to patients who have it in their later years. 

Due to a lack trial data, sufferers whose illness was triggered by other conditions such as rheumatoid or asbestosis, were not allowed to participate.

Many desperate people instead turned to the internet, with some spending as much as £3,000 a year on antifibrotics.

Carol Fielding (66), a former NHS nurse from Bolton, developed pulmonary fibrosis (2018). She said that despite being told it was due to rheumatoid, she didn’t meet eligibility for the drugs. 

Pulmonary fibrosis scars the lungs and leads to respiratory failure, but drugs which slow its progression have previously been accessible mainly for patients who develop it in old age (file image)

Pulmonary fibrosis causes scarring in the lungs, leading to respiratory failure. Drugs that slow its progression are only available for patients who have developed it in old age (file photo).

Sufferers whose illness has been triggered by other conditions, such as rheumatoid arthritis or asbestosis caused by exposure to toxic building insulation, were barred due to a lack of trial data (file photo)

Due to a lack in trial data, sufferers whose illness is triggered by other conditions such as rheumatoid and asbestosis, were barred (file photo).

How can traumatic events impact DNA and pass on phobias

Genetics could pass down phobias from generation to generation. 

Experiments have shown that traumatic events can alter the DNA and the behavior of the generations following. 

Scientists in the US trained mice not to smell cherry blossom. 

They exposed their grandchildren to the blossom years later and discovered that they could not resist the scent, despite never having been exposed to it. 

Professor Marcus Pembrey of University College London said that the findings were a ‘highly relevant to anxiety, phobias, and post-traumatic stress conditions’ in humans.

“I was shocked, angry, and upset all at once. I didn’t know how this could happen.

“I’ve been buying pills from India from August and already I feel a difference. 

“I can breathe easier because I’m coughing less.

“But it’s scandalous that people with my condition have had the nerve to go out, buy these expensive drugs.” 

After a five-year review, NICE, the National Institute for Health and Care Excellence (NHS spending watchdog), approved last week that Carol could have antifibrotics.

Professor Gisli Jenkins at Imperial College London was a respiratory expert and called the move “an absolute game changer”. 

He stated that the condition was remorseless and had a higher mortality rate than most cancers. There is little hope of remission. Yet, there are few or no treatment options. 

“Allowing these patients finally to access antifibrotics will enable them to live longer, healthier lives.”

More than 70,000 Britons currently have pulmonary fibrosis. The majority of them suffer from an idiopathic form of pulmonary dysfunction (IPF). 

Most are over 70, and doctors are not sure what causes it – idiopathic is a medical term for unknown cause. 

There is no cure, and patients usually live for five years after being diagnosed.

Antifibrotic drugs like nintedanib were developed over the past ten years and have been proven to be highly effective in slowing the spread scarring in the lungs. 

Why photos don’t replace memories

The ability to remember something by taking a picture of it can be reduced.

In 2018, University of California Santa Cruz researchers recruited 42 students for two art-viewing opportunities.

The first collection was just an overview of the art. For the second, they had to photograph each piece. Participants were then asked to answer questions about what they had just seen.

Students answered more positively when asked to recall details of art they had not photographed.

Researchers believe that students may have been distracted by the task at hand, taking photos. As a result, they may have noticed fewer details.

NICE granted IPF patients access for this reason.

However, pulmonary fibrosis also develops as a result of known causes – a version known as non-IPF. 

Triggers include rheumatoidarthia, an autoimmune disease that can inflame and scar the lungs, and exposure to industrial materials asbestos and silica.

These non-IPF patients weren’t offered antifibrotics by the NHS as they were not included in drug trials. This meant that there wasn’t any data to show if they responded to the treatment. 

Campaigners argue that drugs are equally effective and point out that the UK is a rare exception.

Steve Jones, chairman and CEO of Action For Pulmonary Fibrosis stated that Britain is the only place in the world where access is restricted to certain pulmonary fibrosis sufferers.

Boehringer Ingelheim, Germany’s pharmaceutical firm, started a trial of nintedanib with non-IPF patients in 2017. 

It was found that the drug was equally effective in slowing scarring in the lungs for IPF patients as it was for IPF patients two years later.

NICE reviewed the evidence and concluded that nintedanib could be offered to non-IPF patients on NHS if scans show that their lung capacity has been affected by the disease, but not so serious that they are unable to receive treatment.

Ms. Fielding described the decision as ‘fabulous news. 

The grandmother-of-seven, who takes nintedanib every day, said: ‘Before I started on the drugs I worried I wouldn’t see my youngest grandson reach five. 

“Now, I hope they’ll remember me when I’m grown up.