Advocacy Information Rare Conditions

Talking to the Association of British Pharmaceutical Industries (ABPI)

The Association of British Insurers
The Association of British Insurers

The ABPI regulate how groups like our can work with pharmaceutical companies like those which make clotting products. Today (03.12.14) we attended an event they ran with The ALLIANCE Scotland which explored some of the issues that come up when we all work together.

We heard about the amazing work of the Brittle Bone Society and their developing relationship with appropriate pharmaceutical companies and some of what they are achieving.

NHS Scotland also attended to tell us about the Yellow Card Centre Scotland reporting system for adverse effect from medicines. Since 2008 patients and members of the public can report problems directly. The reports are used to look for signals that there might be a problem with a treatment that only become clear after it has been licensed. There is a serious problem with under reporting which can mean that long term problems could be missed. So, if you have a side effect remember that as well as telling whoever prescribe it you can report it yourself.  We asked if it was relevant to report historic reactions and were told there is no time limit.

The Scottish Government gave an update on the Scottish Implementation plan for the UK Rare Diseases Strategy. A Scottish Implementation Oversight Group is currently being set up to deliver the plan. Patients will be represented on the Group by Rare Diseases UK and the Specialised Healthcare Alliance. Scotland is the only UK nation with a plan. However, Wales are writing one and a plan is being consulted on in Northern Ireland. They also underlined the importance of making patient submissions to support the approval of new drugs. It now looks odd if there isn’t a patient submission at SMC and so this is something we will keep doing for the new Hepatitis drugs.

The ABPI themselves reported that they are working on a project in England to draft guidance on what issues patient groups need to think about when working with pharmaceutical partners. When the guidance is published in March a decision will need to be made about its applicability for Scotland.

There was also an extremely good overview of the work of the Genetic Alliance and Rare Diseases UK.  In particular the campaigning which has led to the recent improvements in the SMC process and access to medicines for people with rare conditions. We also found out that individuals, not just organisations, can join Rare Diseases UK if they want to support their very valuable work.

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