NICE Opinion Limiting Esbriet to UK Patients with Moderate to Severe IPF Disappoints, patientMpower Says

NICE Opinion Limiting Esbriet to UK Patients with Moderate to Severe IPF Disappoints, patientMpower Says

The digital healthcare company patientMpower expressed disappointment at the opinion issued by an influential U.K. healthcare advisory group to limit the use of Esbriet (pirfenidone, marketed by Genentech) to patients with moderate to severe idiopathic pulmonary fibrosis (IPF).

The National Institute for Health and Care Excellence (NICE) is recommending Esbriet only for IPF patients with a forced vital capacity (FVC, the amount of air exhaled after a deep breath; a measure of lung function) between 50 and 80 percent, which corresponds with moderate to severe disease. NICE provides national guidance and advice to improve health and social care in the U.K., including on medications and devices that will be available through the country’s National Health Service at discounted price.

PatientMpower was recently named one of three winners of the IPF Catalyst Challenge, a competition that fosters innovative solutions for IPF patients. The company proposed a no-cost mobile platform with integrated monitors to help IPF patients track their disease at home. Patients around the world contribute their data to the company’s “digital biobank,” which can be used for IPF research, and to inform and lobby for access to therapies. It also has apps available, for free download, for patients.

“We work closely with patients to develop the patientMpower IPF app,” Colin Edwards, PhD, chief scientific officer at patientMpower, said in a press release. “So we understand how disappointing this final decision is for people in the U.K. living with IPF.”

Edwards emphasized that only 53 percent of IPF patients participating in clinical trials in the U.S. and Ireland had a FVC of 50-80 percent predicted. “This means nearly half of those patients would have been denied treatment with pirfenidone [Esbriet] or nintedanib [Ofev, Boehringer Ingelheim] according to the NICE guidance,” Edwards said.

“I have been personally affected by this decision,” said John Conway, a patient and the leader of an IPF support group in London. “My sister, who lives abroad, received nintedanib 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 compared this decision to telling a cancer patient that they are not ill enough to receive chemotherapy, “which would be considered an outrage.”

“This is very much at odds with the rest of Europe and the U.S. Given the global age we live in patients are very much aware of these disparities in practice,” said Melissa Wickremasinghe, MD, PhD, a consultant respiratory physician and a leading IPF and interstitial lung disease expert. “Not being able to offer a patient who is experiencing the debilitating symptoms of IPF treatment, if their FVC is >80%, is very frustrating and difficult to explain to patients.”

A similar point was made by Anne-Marie Russell, a leading IPF researcher at the Imperial College London. She said that patients with a FVC greater than 80 percent face a bleak situation despite the availability of approved therapies like Esbriet and Ofev.

“The patient not only has to come to terms with the fact that they have a condition associated with poor prognosis and a heavy symptom burden, but that they can only have treatment to slow progression when they get worse,” Russell said.

Ken Bahk, managing director of venture philanthropy Three Lakes Partners, one of the organizers of the IPF Catalyst Challenge, referred to the little attention IPF still receives. An increasing number of patients were diagnosed with IPF in the U.K. between 2004 and 2012. In 2012, 5,292 people died from IPF in the U.K. alone.

“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,” Bahk said.

PatientMpower expects to start studies in the U.K. shortly that will provide real-life data from IPF patients in the country.


  1. Bob Savage says:

    It is ridiculous that a patient diagnosed with IPF is denied treatment with a drug simply because of a FCV rating. This must be challenged and convincing action taken to make sure that medications are available to all IPF patients.

  2. Rod Gritten says:

    Well it gets even more unfair than that, If your in the Moderate to sever range and you drop a further 10% over a 12 month period funding gets removed and you cant have the drug anymore. We all know the drug is not a cure but you could of deteriorated by 20% without it…….

    Who knows?? It just buys you time and hopefully prolong quality life.

  3. büsra says:

    My dad has got ipf and progressive .unfourtunately ,If your in the Moderate to sever range and you drop a further 10% over a 12 month period funding gets removed and you cant have the drug anymore. we had to leave pirfendon.just, we are starting ofev but ill is progressive.maybe we will not have the drug we are searching new research.ı m afraid lose my dad!help mee

  4. David says:

    They are obviously not greasing the right palms.I have Alpha1 and have been denied augmentation therapy for nearly 20 years,it is to late for me now I have dropped below the minimum level of 30% lung function. The EU said sometime ago that each EU country should give this treatment to those that need it.This was a total joke NICE do what they want they are a major part of the problem with our NHS.

  5. Daniel says:

    It is pathetic having to wait until the 80% of the lung function is not effective in order to have Esbriet, or the other one. Other countries work very differently. Medication should be equal for everyone, and it should be preventive, as well as curative.

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