Patient info

NICE – Uveitis (non-infectious) – adalimumab and dexamethasone [ID763]

It has been a long time coming but at last you can now  access all the committee papers, presentations and the draft NICE guidance for adalimuab injection (Humira®) and dexamethasone implant (Ozurdex®) as all the documents are now available on the NICE website: https://www.nice.org.uk/…/indevelopme…/gid-ta10007/documents

This multiple technology appraisal is a long drawn process and  BUS has been involved in this from the start in June 2015.   Since then we submitted an organisation statement and provided a patient expert to give the patient’s perspective on Humira.    We, along with RNIB and Olivia’s Vision have provided the patient perspective as we feel it is very important that these totally different technologies are available for people with sight threatening posterior uveitis.

There are many pages involved in the committee papers, but below we provide an index to help you find your way around.

As an organisation we will be providing our comments about draft guidance to try and get it improved and as members of the public you are also free to submit comments via the website.  The committee will meet on the 12th April to consider the proposal and the guidance will then be published in July 2017

We have often felt swamped by all the NICE paperwork. Under the webpage heading ‘Appraisal Consultation’ you will see links to the ‘appraisal consultation document’ and to the committee papers.

There are 684 pages of committee papers, but below we provide an index to help you find your way around. The appraisal consultation document contains the draft recommendations for the use of Humira and Ozurdex and this is fortunately considerably shorter. As an organisation, we will be providing our comments about the draft recommendations to try to get them improved. As members of the public, you are also free to submit your comments on the appraisal consultation document via the website.

The NICE appraisal committee will meet again on the 12th April to consider all the comments received on the appraisal consultation document. The NICE guidance will then be published in July 2017 as a ‘final appraisal determination’.

NICE committee papers, March 2017: page index to the 684 pages

 p3: ‘pre-meeting briefing’ done for committee members before February 15th 2017 meeting (includes useful notes linked to the assessment report, eg, p9: a treatment pathway provided by the clinical advisors).

  • p65:’matrix of consultees and commentators’ (issued February 2016).
  • p61: ‘final scope’ (issued June 2016).
  • p69: ‘Assessment Group Report’ (the economic modelling done by Sheffield; issued 30th November 2016).
  • p298: AbbVie’s response to the assessment group report.
  • p318: Allergan’s response to the assessment group report.
  • p326: BUS’s response to the assessment group report.
  • p328: Olivia’s Vision’s response to the assessment group report.
  • p330: RNIB’s response to the assessment group report.
  • p350: Assessment Group response to RNIB comments.
  • p351: Assessment Group response to Olivia’s Vision comments.
  • p352: Assessment Group response to BUS comments.
  • p357: Errata to the Assessment Group Report (all highlighted in red).
  • p431: AbbVie’s submission to NICE (August 19th 2016).
  • p489: Allergan’s submission to NICE (August 19th 2016).
  • p598: BUS’s submission to NICE (summer 2016).
  • p610: Olivia’s Vision’s submission to NICE (summer 2016).
  • p624: RNIB’s submission to NICE (summer 2016).
  • p640: NHS England’s submission to NICE (includes references to sirolimus).
  • p648: Prof Phil Murray’s submission to NICE.
  • p656: Sri Sharma’s submission to NICE.
  • p663: Ali Mapstone’s patient expert statement to NICE.
  • p671: Maxine McCarthy’s patient expert statement to NICE.
  • p681: Nicola Symes’s NHS England statement to NICE.

 

 

 

Patient info

Humira formulation change

The formulation of Humira (adalimumab) prefilled pens and prefilled syringes is being changed. The changeover from the original formulation to the new formulation is being rolled out in different countries at different times.

Humira’s original formulation is known to cause stinging on injection. AbbVie, the makers, have been working on a new formulation to try to reduce this. They have removed citrate and some of the other extra ingredients from the original formulation used in the prefilled pens and prefilled syringes. This also means that the volume of liquid in each pen and syringe can be reduced, so the new formulation pens and syringes contain 40mg adalimumab in 0.4ml, compared with the original formulation pens and syringes which contain 40mg adalimumab in 0.8ml. The actual adalimumab dose in the new formulation pens and syringes is exactly the same as in the original formulation pens and syringes.

The situation as at February 2017 is:

UK: new formulation pens and syringes were introduced in July 2016 (the paediatric 40mg/0.8ml vials are still supplied in the original formulation).

US: original formulation is still in use: pens, syringes and paediatric vials.

Canada: original formulation is still in use: pens, syringes and paediatric vials. Launch of new formulation pens and syringes is planned for 2017.

Other countries: no information.

If birdshotters using Humira could let BUS know when their country changes over to the new formulation, we would be very grateful. We would also like to hear of your experiences with the new formulation, particularly if you have previously used the original formulation.

Patient info

Flu vaccination – stay well this winter

We were reminded by an email that arrived in the BUS in-box this week that it is once again time in the UK to get your flu jab:

‘You may have seen that the latest NHS Stay Well This Winter campaign has launched which encourages vulnerable people including those with long-term health conditions, anyone aged over 65 and their carers to get the free flu jab.

As you may be aware, flu is a highly infectious disease and can lead to serious complications if you have a long-term health condition like: COPD; bronchitis, emphysema; diabetes; heart, kidney or liver disease or have suffered a stroke. We are particularly trying to reach people with these conditions as flu on top of health conditions like these can easily develop into something very serious and could land you in hospital. People with these and other long-term health conditions are eligible for a free flu jab through their GP or pharmacist’.

The campaign leads with the message: ’If you are eligible for the flu vaccine get it now – it’s free because you need it. Contact your GP or pharmacist to the get the flu jab.’

As well as the categories of ‘long-term health conditions, anyone aged over 65 and their carers,’ if you are on immunosuppressant treatment, including oral steroids, at any age, this places you in a priority group for the free flu jab.

In UK and many other countries, the injectable flu vaccine is an ‘inactivated’ vaccine, so it can be safely given to people taking immunosuppressants. However, in UK, there is also a ‘live’ flu vaccine which is given to children via the nose, and this should not be given to anyone who is immunosuppressed.

Further information can be found on the campaign website at nhs.uk/staywell.

A BSL version of the leaflet has also been produced which can be viewed on YouTube at: SWTWBSLleaflet

Patient info

Sight Village 1st – 2nd November 2016, in London

sight-village-nov-2016 sight-village-nov-2016-1

 

 

 

 

 

 

 

For those in the London UK area: Sight Village returns to London this November.  This is the publicity blurb that we recieved recently which you can down load and print off.

The popular two day event takes place at Kensington Town Hall on 1st and 2nd November. Doors open at 10am until 3pm and entry is free!

Sight Village is the UK’s leading exhibition for blind and partially sighted people and for those experiencing age related sight problems. It brings together leading providers of products and services all under one roof.

We recommend that all visitors pre-register to attend the event by following the link below. If you are unable to do this, please call a member of the team on 0121 428 5041 and we will be happy to complete this for you.

Please pass on the information about the event to service users and anyone who may benefit from visiting the event.

Patient info

Local Birdshot Meetings 2016/17

London Social Event with speaker

Speaker: Victoria Makepeace

Venue: The Phoenician, Thames Barge, St Katharine’s Dock London E1W 1LA

On  Saturday 13th August 2016

from  12.00 – 16.00

Manchester Social Event with speakers

Speakers:  To be confirmed

Please see the following link for further details: https://birdshot.org.uk/north-west-meet-up-new-arrangements/

Henshaws, Atherton House, 88-92 Talbot Road, Old Trafford, Manchester, M16 0GS

Date Saturday 22nd April 2017

from 11.00 – 15.00

Please do let Annie know if you are thinking of attending either or both of these events so that we can gauge numbers.   email:  info@birdshot.org.uk

 

 

Patient info

North West meet-up: new arrangements

Due to various circumstances, we decided that it would be sensible to postpone our North West meet-up (planned for September) until April next year. We apologise for this change of plan. The proposed date is now Saturday 22nd April, and provisionally we will be holding it at Henshaws in central Manchester, as this provides a convenient location with transport links.  The time will be from 11.00am – 3.00pm.

The meeting is kindly being organized by BUS members Barrie Standish and Nick Bucknell, who are both active members of the Society.

As well as being a social event with lots of opportunity for chat and something to eat, we plan to have a couple of talks, and if possible to run a data and blood collection session for the Birdshot Database and Biobank. We are currently trying to work out the logistics of this to see if this will be possible. If it is, this would enable members from the North West and North East of England to contribute samples and information for future scientific research into Birdshot. Initially, the main centres for sample collection will be in Bristol, London and Birmingham and Manchester,  but we don’t yet have arrangements with other hospitals in the north such as Leeds, Liverpool, Newcastle Sheffield and Yorkshire.

If you are interested in attending, please put the date in your diary and email info@birdshot.org.uk to allow us to put your name down as someone who is interested in coming along so that we can gauge numbers and make sure the venue is big enough!

 

Patient info

New Birdshot journal article published

BUS is delighted to announce that a new article which we have been helping to write, along with other much better-known and qualified researchers, has been published in Orphanet Journal of Rare Diseases: “Birdshot chorioretinopathy: current knowledge and new concepts in pathophysiology, diagnosis, monitoring and treatment.”  It is long and quite detailed, but for those who want to know the detail, we think this is really informative and certainly up-to-date.  (May 2016)

Evangelos Minos, Robert J. Barry, Sue Southworth, Annie Folkard, Philip I. Murray, Jay S. Duker, Pearse A. Keane and Alastair K. Denniston. May 2016  http://ojrd.biomedcentral.com/art…/10.1186/s13023-016-0429-8

Orphanet is the European portal for rare diseases: http://ojrd.biomedcentral.com/articles/10.1186/s13023-016-0429-8

 

Patient info

Birdshot Day No 3 talks – November 2015

All of the birdshot talks from both Birdshot day No 2 and No 3 are published on the  Birdshot Uveitis Society Youtube channel Birdshot100 at https://www.youtube.com/user/Birdshot100/videos

Session 1

Birdshot – Where we are now: medications and keeping yourself well

Session 2

Fight for Sight and Birdshot Uveitis Society joint small grants initiative and progress updates

Session 3

Session 4

Session 5

Introduction to the National Birdshot Research Network and future developments

 

 

Patient info

Birdshot Voices

Dr Tracy Craggs has been listening to people talk about sensitive issues for the past 20 years, including asking Holocaust survivors and members of the armed forces to share their experiences. Her interviews have been used for a variety of educational purposes. She was delighted to be asked to attend our recent Birdshot Day No 3 and listen to some of our attendees talk about their lives since diagnosis.

Birdshot graphic designer David Bethell, has been doing the editing and putting them into a presentable format. David will be adding more when they are ready. It’s very enlightening to listen to each individuals story.  http://www.yungcloud.com/index.php…

The interviews are with:-

  • 5 members of BUS, living with birdshot
  • 1 partner of someone with birdshot
  • Health professionals, treating the condition
  • Exhibitors at the Birdshot Day
  • and Friends of BUS

There are further interviews from our first Birdshot day held in September 2010  which might also be of interest.   https://audioboom.com/users/67238/boos

Patient info

Sight village in London 3rd-4th November

For those in the London UK area: Sight Village returns to London this November.  This is the publicity blurb that we recieved recently which you can down load and print off.

The popular two day event takes place at Kensington Town Hall on 3rd & 4Th November. Doors open at 10am until 3pm both days and entry is free!

Sight Village is the UK’s leading exhibition for blind and partially sighted people and for those experiencing age related sight problems. It brings together leading providers of products and services all under one roof.

We recommend that all visitors pre-register to attend the event by following the link below. If you are unable to do this, please call a member of the team on 0121 428 5041 and we will be happy to complete this for you.

Please pass on the information about the event to service users and anyone who may benefit from visiting the event.