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

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

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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  1. Ric Ellens says:

    PR Newswire

    LAVAL, QC, Jan. 29, 2018

    Clinical trial design confirmed during FDA Type C meeting held on January 3, 2018
    Simplified patient entry criteria to include IPF patients whether on background standard of care (i.e. nintedanib) or not
    Primary endpoint analysis to be stratified on background therapy (+/- nintedanib)
    Planned Interim analysis at 26 weeks
    Company to host IPF KOL luncheon presentation and live webcast for the investment community on January 31 at 12 noon EST
    LAVAL, QC, Dec. 18, 2017

    Ryplazim™ is Prometic’s Second Orphan Drug Designation (ODD) Granted for IPF by the FDA
    Two Late Stage Clinical Assets targeting IPF: Ryplazim ™ under BLA review and PBI-4050 entering pivotal Phase 2 /3 clinical trials

  2. Gisele Lapointe says:

    I am not at the end stage yet. I was 77 when I received the diagnosis, it has been 5 years. I found that if I kept active, walking, playing tennis, I could live a pretty normal life. The chronic cough was really the only symptom and I could live with it, until a month ago. I thought I was coming down with the flu and started coughing a lot. About the same time, after a lapsus of 3 years, I decided to start painting again. I needed a jar of cadmium orange, so I went to the art store. I saw that it was now offered “without the cadmium”. It got me thinking and as soon as I got home I searched the Internet to find more. That is when I read that inhaling cadmium can give you the same symptoms as the flu. I believed I had my answer, the cadmium I had slowly inhaled during 10 years was probably the cause of my fibrosis. Nobody knows for sure, that’s why it is called “idiopathic” pulmonary fibrosis.
    Of course, I still have to live with the disease and when I think of the end stage, I remember my daughter who passed away after a live donor lobe transplant (one lobe from her husband and one from her brother) from cystic fibrosis. She was 43 years old. She survived 2 years but suffered tremendously and soon had to be on full time oxygen.
    So, having witnessed her struggling with such courage I know what to expect but it does not make it less daunting.

  3. Ann Murtha says:

    Hello, I am touched by your post about your IPF experiences. I was diagnosed two years ago at age 76 after a life of outdoor sports and a wonderful marriage of 33 years to a man whom I now care for at home due to his dementia of some 12 years. Latest CT scan now shows progression after two good years and just began Esbriet medication. I, like you, am just try to focus on what needs to be done, not the causes, but for me I believe living for 18 years at home with my chain smoking Mom might contribute, ie second hand smoke. No matter, I am encouraged by all the continued research being done and hope for a cure eventually! I would like to be by my husband’s side when he passes, at least!

  4. Patricia Glanville says:

    I live in Spain and was diagnosed about 6 months ago after my cardiologist gave me MRI scan to check my stents…otherwise would never have known.I am on Esbriet 860 and swim and walk…never smoked but parents did as I was growing up. I have a slight dry cough…practice breathing exercises daily and the hospital here give regular check ups. Hoping to have many more years left

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