On behalf of patients across the UK living with Idiopathic Pulmonary Fibrosis (IPF), patientMpower expressed disappointment at NICE’s decision to restrict the use of the antifibrotic pirfenidone (Esbriet) to patients with moderate to severe forms of the disease. NICE recently issued final guidance that pirfenidone is recommended as a treatment option for IPF only if the patient has a forced vital capacity (FVC) between 50% and 80% predicted.
patientMpower provides digital healthcare solutions to empower patients to better manage their own disease, including a platform specifically for people with IPF. “We work closely with patients to develop the patientMpower IPF app” said Colin Edwards PhD, Chief Scientific Officer of patientMpower. “So we understand how disappointing this final decision is for people in the UK living with IPF.”
John Conway, who lives with IPF and leads an IPF support group in London stated; “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 UK, had to wait for my condition to worsen to have access to treatment. This approach cannot be right. It is equivalent to telling a cancer patient that they are not ill enough to access chemotherapy, which would be considered an outrage.”
Patients using the patientMpower IPF platform track their own FVC at home using integrated monitors. Individuals then donate their data to the company’s “digital biobank”, which is a unique resource for IPF research. “Via our digital biobank we have access to real-life data from IPF patients in countries across the world”, explained Colin. “We can see how NICE’s restrictions will negatively affect people with IPF in the UK. For example, in recent representative studies of patients in the USA and Ireland performing home spirometry through the patientMpower platform, only 53% of the trial participants had an FVC of 50-80% predicted. This means nearly half of those patients would have been denied treatment with pirfenidone or nintedanib according to the NICE guidance. Indeed there were patients receiving pirfenidone in that study that would have not been entitled to treatment if they were living in the UK”.
Dr Melissa Wickremasinghe, a consultant respiratory physician and a leading IPF specialist and Trust lead for Interstitial Lung Disease (ILD) with Imperial College Healthcare NHS Trust considers the recent decision by NICE to uphold the threshold of 80% FVC a prescribing barrier for many of her patients. “This is very much at odds with the rest of Europe and the US. Given the global age we live in patients are very much aware of these disparities in practice. The incidence and prevalence of IPF is increasing. As a consulting respiratory physician 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 in this category.”
Anne-Marie Russell, a leading researcher in IPF based at the National Heart and Lung Institute in Imperial College, London, considered the impact of the NICE guidance on patients’ quality of life; “Receiving a diagnosis of IPF is distressing. Receiving information that there are two anti-fibrotic therapies available that can slow disease progression offers some hope. However, if the patient has an FVC greater than 80% predicted this hope is removed. 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. This is very much at odds with the approach in oncology where patients diagnosed with cancer are offered life preserving treatments at the outset”.
patientMpower were recent winners of the IPF Catalyst Challenge, which awarded a total purse of $1 million for the development of ideas to improve the quality of life for patients with IPF. Ken Bahk, Managing Director of Three Lakes Partners, the philanthropic organisation behind the IPF Catalyst Challenge, also expressed disappointment at NICE’s decision on behalf of IPF patients in the UK. “IPF kills about the same number of people each year as breast cancer, and yet this disease receives very little attention. 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”.
patientMpower plan to use the data in their digital biobank to further research into IPF, to inform and lobby for access to medications, oxygen therapy and healthcare services to help people live better with IPF. They are due to commence a number of studies in the UK shortly, which will provide UK specific data on IPF in real-life patients.
patientMpower is a digital healthcare company providing technology solutions for patients across a range of therapy areas including Pulmonary Fibrosis (IPF), dialysis and renal transplant. patientMpower is passionate about empowering better outcomes by enabling patients to better manage their care & providing unique data insights for healthcare providers and researchers to improve treatments.
About Three Lakes Partners
Three Lakes Partners, LLC is a venture philanthropy whose mission is to accelerate the development of promising technologies for Idiopathic Pulmonary Fibrosis (IPF). Three Lakes Partners provides not only financial support, but also operational leverage via partnership with a greater network of IPF resources worldwide. Visit www.threelakespartners.org for more information.