Who are the UKCFMA?
The UK Cystic Fibrosis Medical Association (UKCFMA) was founded in 2018 by doctors caring for people with CF in the UK. The association has a chairman, a steering committee and over 200 members. All the CF centres in the UK are represented in the membership of the organisation.
The association is led by the steering committee with Dr Caroline Elston as the chair, supported by four CF clinicians (two paediatricians and two adult physicians) and two doctors-in-training.
Dr Caroline Elston, Chair
Consultant, Adult Cystic Fibrosis, King's College Hospital Adult CF Centre
Dr Alex Horsley
Consultant, Adult Cystic Fibrosis, Manchester Adult Cystic Fibrosis Centre
Dr Charles Haworth
Consultant, Adult Cystic Fibrosis, Cambridge Centre for Lung Infection, Royal Papworth Hospital
Professor Gary Connett
Consultant Paediatrician and Director of Paediatric Cystic Fibrosis Services, University Hospital Southampton NHS Foundation Trust.
Professor Kevin Southern
Consultant Paediatrician, Cheshire, Merseyside and North Wales Network of Paediatric CF Care
Dr Iram Haq
NIHR Clinical Lecturer, Paediatric Cystic Fibrosis, Great North Children’s Hospital, Newcastle upon Tyne
Dr Freddy Frost
Respiratory Medicine and Adult CF SpR, Liverpool Heart and Chest Hospital
The association is independent of any other organisation and does not receive sponsorship from the pharmaceutical industry. The Cystic Fibrosis Trust provides administrative support to the association.
For any enquires about the UKCFMA please contact email@example.com
The work of the UKCFMA
Representing the CF medical community to improve the care of CF patients
The UKCFMA provides expert advice and opinion to government bodies, the NHS, the Cystic Fibrosis Trust and other outside agencies. It represents the CF medical community in discussions with the NHS and Department of Health about provision of services and medicines for PWCF. The UKCFMA often works alongside the Trust in this, but represents an independent medical viewpoint to ensure that doctors can deliver the best care possible for people with CF now and in the future.
The UKCFMA is inclusive of CF doctors in the devolved nations and works with Departments of Health in Northern Ireland, Scotland and Wales to help ensure that decisions in each health system are as integrated as possible and represent the best interests of CF patients across all localities.
Some specific examples of what they do are listed below.
Providing CF-specific advice during the coronavirus (COVID-19) pandemic
The UKCFMA has produced guidelines and information about COVID-19 specific to people with CF and aligned with government guidance. You can read their statements, which are regularly updated, here.
The association has answered questions from the CF community relating to their concerns about COVID-19 and cystic fibrosis. The steering committee reviews all Cystic Fibrosis Trust clinical advice to ensure accuracy. The UKCFMA has also worked with the Cystic Fibrosis Trust to advocate on behalf of people with cystic fibrosis.
The UKCFMA is working with the Trust's UK CF Registry team to provide weekly updates about COVID-19 infections in people with cystic fibrosis.
The association is also working with NHS bodies to ensure appropriate measures are in place to care for people with CF during and after the pandemic with representation on the NHS England CF COVID-19 clinical network. This work has included rollout of home spirometers to people with CF over the age of six.
Access to medicines
The UKCFMA has been liaising with NHS England and NICE to ensure all eligible people with CF have access to CFTR modulators.
Health and Social Care Inquiry Response: In March 2019, the UKCFMA submitted evidence to the Health and Social Care Committee's inquiry into access to cystic fibrosis medicines. Dr Caroline Elston, Chair of the UKCFMA, spoke at the inquiry, which you can watch here.
Correspondence with Matt Hancock: On 30 January 2020, the UKCFMA wrote a letter to Matt Hancock, Secretary of State for Health and Social Care, regarding the availability of new treatments for cystic fibrosis in the UK. He responded to this letter on 25 February.
The UKCFMA are part of a clinical subgroup of the NICE Interim Access Oversight Committee to review the data collection of Orkambi and Symkevi during the Managed Access Agreement.
Triple therapy delay statement: On 10 June 2020, the UKCFMA published a position statement on the delay to the triple therapy NICE consultation urging all parties to continue discussions to allow access to the drug as soon as possible. For the full statement, see here.
UKCFMA statement on Kaftrio approval: Following NHS England's announcement on the triple combination therapy Kaftrio, on 2 July 2020, the UKCFMA released a statement on availability of the new treatment.
UKCFMA statement on Kaftrio post-transplant: On 20 November 2020, the UKCFMA released a statement about the use of Kaftrio in people with CF who have received organ transplants.
UKCFMA statement on availability of CFTR modulator treatment: On 11 February 2021, the UKCFMA released a statement to help people understand the current situation with regard to the availability of CFTR modulator treatment in the UK
UKCFMA working group on Lung Transplantation
The UKCFMA has set up a Lung Transplant Working Group to understand and improve the lung transplant experience and journey for people with CF in the UK. The group is made up of CF and lung transplant specialists, all of whom are aware from their professional experiences, of the potential benefits and pitfalls of this part of CF care. The group’s first goal is to understand what the UK CF lung transplant landscape looks like in relation to the transplant referral process and the different ways CF care is delivered around the UK. They are conducting a nationwide survey and will report back to the UKCFMA once this is completed, before deciding on the next steps.
The group is chaired by Dr Thom Daniels, Consultant CF physician, Southampton Adult CF centre.
Other areas of work
Future models of CF care: The UKCFMA is considering how current CF models of care can be adapted in the context of an increasing number of adults with CF, improved wellbeing following the introduction of highly effective CFTR modulators, the increasing use of digital health solutions and the COVID-19 pandemic.
CF Commissioning: The UKCFMA meets regularly with NHS England Specialised Commissioners to discuss current commissioning issues and upcoming changes to commissioning.