Connecting Communities: Genetic Alliance UK Annual Conference 2019

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Earlier this month, emotive attended the Genetic Alliance UK Annual Conference 2019 at Amnesty International. The event consisted of panel sessions, discussions and workshops, and was attended by representatives from charities, patient organisations, the NHS, agencies and pharmaceutical companies working in the rare disease space. We caught up with emotive Account Executive, Claire Mitchell, to find out what happened on the day. 

Opening session 

The conference began with a welcome from Chief Executive of Genetic Alliance UK, Dr Jayne Spink, followed by an opening session from Baroness Blackwood, Under Secretary of State at the Department of Health and Social Care, and the Minister responsible for rare diseases.  

Baroness Blackwood spoke of the huge impact the recent progress in genomics has had on the rare disease arena, with the UK being one of the first countries to introduce genome sequencing into routine clinical care. She highlighted the chance this gives to end the diagnostic odyssey faced by so many people living with a rare disease. 

She also touched on the progress being made towards access, how rare disease must remain a priority for investment in science and innovation, and the role of the investment of pharmaceutical companies to develop therapies and solutions.  

Baroness Blackwood closed by speaking about the importance of coordinated care. Access to care coordination is an area she is working to implement across the NHS and her goal is to ensure a voice is given to those rare diseases.  

Panel Session: Engaging with the Media 

The second session was a panel discussion on Engaging with the Media. Judith Bunting MEP has a background in creating medical documentaries, is a former genetics expert at the BBC and is mother to a child living with a rare genetic disease. She was joined by Fiona Fox, Science Media Centre Director, and journalist Danny Buckland. The session was chaired by Simon Long-Price, Genetic Alliance UK’s Press and Media Manager

Fiona explained that there is a huge appetite for health and medicine documentaries and that the public can be engaged, particularly when there is controversy surrounding a topic. A proactive approach must be taken to embrace debate and communicate accurate science, changing what the public sees and understands by engaging with these issues directly. 

The panel invited questions from the audience, the first of which was how misrepresentation in the media can be tackled. The panellists explained that there are always hazards with going to the media and that misrepresentation cannot be stopped. If something is reported inaccurately, journalists can be reached through contacting news desks and press officers at Genetic Alliance UK. If the reader can point out the inaccuracy and provide something interesting to say, they can sometimes turn a problem into an opportunity. 

The discussion closed with advice from the panel to small patient organisations who are trying to get their messages out to the media. Suggestions included starting with local media and gathering experience, and then building up to national papers as well as really focusing on what you want to say and achieve. The panellists highlighted building community as being important, using social media to raise awareness and making it easier for a journalist to find your organisation. 

Access to Rare Disease Medicines Campaign 

The next session was an update from Nick Meade, Director of Policy at Genetic Alliance UK, on the charity’s Access to Rare Disease Medicines Campaign.  

The new campaign, Action for Access, which launched on Monday 21 October, aims to improve funding decision-making and deliver a flexible vision and solution for access in the UK. As the UK is behind the rest of Europe in this space, most notably France and Germany, it is frustrating for patients whose peers in other countries can access better medicines.  

The campaign has defined systematic issues in the rare medicine access space, which include fragmentation between countries, rigid criteria, delays, and lack of transparency and communication. It has also identified fundamental issues, including high medicine prices, lack of government money, and small patient and research populations.  

Action for Access offers a three-pillar solution, delivering a report, and discussing patient views and clinician recommendations. The next steps of the campaign will be to target the National Institute for Health and Care Excellence (NICE) review method, and in the long term, the campaign will be aligned to the changing political environment. 

Panel Session: Engaging with Decision Makers  

The final panel session focussed on engaging with decision makers. The panellists were Lizzie Thomas, Senior Public Involvement Adviser of the Public Involvement Programme at NICE, and Mike Dykes, Engagement Manager from the Medicines and Healthcare Products Regulatory Agency (MHRA), with the discussion chaired by Nick Meade.  

The panel discussed the use of forums to engage and involve patients, which has included patients being involved in licensing decisions and has resulted in patient groups being consulted more systematically as part of the MHRA processes. Lizzie explained that patient and public involvement is embedded in NICE decision making, including lay members, national charities, service users, carers and patients. 

Through discussion, the panel explained that individuals and patient organisations receive formal support through process guides, factsheets and training, as well as informal support over the phone, via emails and at other meetings. 

The session closed with discussions on future plans to involve patients in NICE and MHRA. These included online training to improve flexibility for lay members, webinars to reach a wider audience, and a strategic review of patient/public involvement. 

Afternoon Workshops 

Four workshops were run in parallel during the afternoon session, and delegates were invited to select two of the four to attend. These included Working with Decision Makers, People, Power and Parliament: Parliament Training, Engaging with Social/Service Research & Clinical Research, and Engaging with Industry.  

Members’ Soapbox & Close 

The meeting closed with the members’ Soapbox. Speakers included a trustee of a patient support group, a PhD student, and representatives from The Aplastic Anaemia Trust and The CHAMP1 Foundation.  

The Soapbox session was followed by closing remarks from Dr Jayne Spink to end the conference. 

Our emotive reporter Claire said of the day “It was a great opportunity to keep abreast of developments that affect the Rare Disease community in the UK. The Action for Access Campaign is a really positive step forward and it was heartening to hear about actions being taken to further integrate the rare patient voice into the processes of NICE and the MHRA. It was also impressive to see how much help is offered by Genetic Alliance UK to small rare disease charities to assist them with getting their messages into the media and learning how to engage with research and the pharma industry.”


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