This September, the Irish Lung Fibrosis Association (ILFA) will mark the 2017 Idiopathic Pulmonary Fibrosis (IPF) World Week, along with celebrating 15 years of providing IPF patient care in Ireland. IPF World Week (Saturday, 16th September - Sunday, 24th September), aims to raise awareness of the condition, shed light on the services and treatments available to people suffering with IPF, and to create an international network of support. To commemorate IPF Week and its 15th anniversary, ILFA will launch a special edition ‘ILFA 15 ’ magazine, which celebrates the advances in treatment and patient care over the past 15 years, with special input from Irish patients, family members, carers, doctors and ILFA members.
Since its formation in 2002, ILFA has supported advancements that have been made in IPF treatment and awareness, including patient care programs, drug advancements, lung transplants and more.
ILFA developed a 6 Point National Patient Charter, which provides clear guidelines to IPF patients and carers for what standards of treatment and support is to be expected in Ireland. ILFA began devising this charter in 2013 with input from IPF patients. On top of these guidelines, ILFA also developed a number programs, including the 2,000 Steps Challenge; a daily exercise plan devised to keep IPF patients fit and in the best possible health, a key element in preventing the progression of IPF.
Advancements in drugs used to treat IPF in the past 15 years have also been significant. In 2013, the Irish government approved funding for Pirfenidone (Esbriet), marking a huge turning point in IPF treatment in Ireland. More recently, in June of this year, the HSE madeNintedanib (Ofev) available to IPF patients. Both drugs help to slow down the progression of the disease considerably, and can provide a life line for those not eligible for transplants or other treatments. The arrival of these essential drugs was highly celebrated by ILFA as important milestones in the evolution of IPF treatment over recent years.
There has also been a considerable increase in the number of lung transplant procedures taking place in Ireland. Minister Simon Harris’ recent proposal to introduce The Human Tissue Bill, an ‘opt out’ organ donation system whereby “presumed consent” for organ donations would replace the current system, is supported by ILFA.
Advances in tech since 2002, such as the introduction of the PatientMPower app, have enabled IPF patients to take control of their treatment. The app allows people living with IPF to obtain, manage and keep track of essential personal health data, as well as recording appointments and medication, enabling them to closely monitor the progression of their own symptoms, and then directly relay this information to specialists at check-ups and treatment sessions.
IPF is a rare, chronic, progressive and terminal disease, which involves the development of scar tissue (fibrosis) in the lungs. Patients with IPF develop extreme breathlessness, fatigue, cough and ultimately respiratory failure, often requiring them to depend on oxygen therapy 24 hours a day. There are over 1,000 people living with IPF in Ireland today and approximately 360 new cases are diagnosed each year.
ILFA has supported and celebrared these advancements in IPF care and treatment over the past 15 years, and will continue to support IPF patients in Ireland this year and beyond, by commemorating IPF World Week.
For more information, visit www.ilfa.ie, find ILFA on Facebook at: www.facebook.com/ILFAIreland or follow ILF