Transformational Medicines in Cystic Fibrosis – Learnings from HIV
The introduction of modulator therapies has changed the way people with cystic fibrosis (pwCF) engage with their CF team; many people who were previously very unwell now report improvement in their health and quality of life.
Prior to the introduction of these drugs, the focus of CF care was on managing symptoms and complications associated with the disease, however, CFTR modulator responsive patients now present with a considerably different clinical picture. This transformation in the lives of patients has necessitated a paradigm shift in the multidisciplinary team (MDT) approach with the focus moving from looking after patients who would likely die from CF, to helping patients live with CF.1
The introduction of antiretroviral therapy (ART) in the 1990s for HIV/AIDS had a similar transformative impact on the MDT treatment approach. With the widespread availability of effective ART, HIV became a manageable chronic condition rather than a death sentence, and the focus of the MDT shifted from end-of-life care to long-term management of healthier patients.2
In this webinar, our speakers discuss the similarities and differences of their experiences as members of the CF and HIV MDTs during the introduction of these transformational medicines. Professor Margaret Johnson shares learnings from her experience of the management of patients with HIV whose lives have transformed. Dr Julia Nightingale contextualises these learnings to CF and considers the implications for the CF community in the era of CFTR modulators.
References
1. Cuevas-Ocaña S, Laselva O, Avolio J, Nenna R. The era of CFTR modulators: improvements made and remaining challenges. Breathe. 2020 Jun 1;16(2).
2. Suzy Heafield. Making more of medicines in the drive to end new HIV infections. October 2022. Accessed at: https://www.england.nhs.uk/blog/making-more-of-medicines-in-the-drive-to-end-new-hiv-infections/
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Consultant in Thoracic and General Medicine, Consultant in HIV/AIDS Medicine and Professor of MedicineRoyal Free Hospital London NHS Foundation Trust
Role and Location
Professor Margaret Johnson is one of the UK’s leading consultants in Respiratory and HIV medicine, practicing at the Royal Free London NHS Foundation Trust and the Hospital of St John & St Elizabeth’s. She has been working as a consultant in Respiratory Medicine and General Medicine for over 20 years. She has a special interest in HIV infection; diagnosing, treating clinical complications of HIV and antiretroviral therapy.
Education
MBBS, MRCP (UK), MD, HIGHER PROFESSIONAL TRAINING IN GENERAL MEDICINE AND RESPIRATORY MEDICINE, FRCP (UK)
Research
Professor Johnson has a very active research programme and published more than 500 papers on Respiratory and HIV topics in peer reviewed journals.
Memberships
In 2005 she was made Professor of Medicine by University College London. She was the Chairman of the British HIV Association from 2004- 2008. She was the elected Academic Vice President of the Royal College of Physicians 2015 – 2018. She is currently Co-Clinical Director of NIHR clinical research network, North Thames.
She has held appointments as:
Clinical Director of the Royal Free London NHS Foundation Trust
Divisional Director of the Royal Free London NHS Foundation Trust
Medical Director of the Royal Free London NHS Foundation Trust
Consultant Respiratory PhysicianUniversity Hospital Southampton NHS Foundation Trust
Role and Location
Dr Nightingale is a consultant respiratory physician specialising in adult Cystic Fibrosis and bronchiectasis at University Hospital Southampton NHS Foundation Trust.
Education
She qualified from Oxford University and did much of her early training in London. She was awarded a PhD from Imperial College investigating the respiratory effects of air pollution on airways inflammation. She has been a consultant in Southampton since 2005 in the Wessex Adult CF Unit and was the clinical lead from 2009 until 2012.
Research Interests
Her initial research looked at the respiratory effects of air pollution on airways inflammation and this formed the basis for her PhD. She has also undertaken clinical studies into asthma treatments. Her CF research has looked at centre outcomes and she has worked as part of the CFhealthhub collaborative as PI for the CFhealthhub pilot study and current PI for the Data Observatory study, an NIHR funded study to support patient adherence.
Memberships
She was a member of the BTS CF Special Advisory Group (2011-14). She was the adult chair of the Wessex CF Club responsible for arranging regional educational meetings from 2010 to 2019. She currently sits on the UK CF Medical Association (UKCFMA) and is a vice chair of the CF Digital Self-Care behavioural science Collaborative (CFDigiCare) which aims to utilise digital health systems to enable people with CF to live as normal a life as possible. She has previously been a member of the educational faculty for the Royal College of Physicians and currently is on the educational faculty for Wessex Deanery.
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