Advocacy Groups Oppose NICE Opinion Limiting Esbriet to Select IPF Patients in UK

Alice Melão, MSc avatar

by Alice Melão, MSc |

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patientMpower, a U.K. digitial healthcare and advocacy company, joined others in voicing disappointment with the recent decision of a British advisory board to restrict the use of Esbriet (pirfenidone) to patients with moderate-to-severe idiopathic pulmonary fibrosis (IPF).

NICE’s final recommendations for Esbriet (marketed by Genentech) and its use in the U.K.’s National Health System were published on Feb. 6. These state that the anti-fibrotic drug should only be considered as treatment option for IPF patients who have predicted forced vital capacity (FVC; a measure of lung function) between 50 and 80%.

“Via our digital biobank we have access to real-life data from IPF patients in countries across the world”, Colin Edwards, PhD, chief scientific officer of patientMpower, said in a press release. “We can see how NICE’s restrictions will negatively affect people with IPF in the UK.”

“In recent representative studies of patients in the U.S. and Ireland performing home spirometry through the patientMpower platform, only 53% of the trial participants had a FVC of 50-80% predicted,” Edwards said.

Based on these data and according to the new NICE’s recommendations, almost half of IPF patients “would have been denied treatment” with Esbriet if they were living in the U.K., Edwards added.

patientMpower has developed a digital healthcare platform — using apps free for download — to help IPF patients manage their disease. Taking advantage of its bank of IPF information, the company is planning to support further research into this disease to improve awareness and lobby for better access to treatments and healthcare services.

The company was recently granted the IPF Catalyst Challenge award promoted by the philanthropic organization Three Lakes Partners.

“We work closely with patients to develop the patientMpower IPF app,” Edwards said. “So we understand how disappointing this final decision is for people in the U.K. living with IPF.”

John Conway, a patient who leads an IPF support group in London, said: “It is very disappointing that NICE have reaffirmed the FVC 50%-80% predicted rule for access to both pirfenidone and nintedanib. I have been personally affected by this decision. My sister, who lives abroad, received nintedanib (Ofev) as soon as she was diagnosed with IPF, whilst I, living in the U.K., had to wait for my condition to worsen to have access to treatment.

“This approach cannot be right,” Conway added. “It is equivalent to telling a cancer patient that they are not ill enough to access chemotherapy, which would be considered an outrage.”

patientMpower is planning to conduct studies targeting the country’s IPF community, to provide real-life clinical data.

“IPF kills about the same number of people each year as breast cancer, and yet this disease receives very little attention,” said Ken Bahk, managing director of Three Lakes Partners. “We want to improve the lives of IPF patients and their caregivers worldwide, and this includes ensuring that patients have access to the best IPF treatments. We will work tirelessly with those who share our goals, including patientMpower, to make this happen.”

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