Individual funding request – a call for help!

Have you and your consultant tried and failed to get access to a much-needed birdshot uveitis treatment, such as the biologic treatments adalimumab or infliximab?

If so, this is a call for help directed to English and Welsh birdshotters who have tried unsuccessfully to gain approval to use these specialised treatments through Individual Funding Requests (IFRs). Currently, IFRs are the only way that we can hope to receive these treatments. We believe that the present situation is that nearly all IFRs are being turned down.

NHS England is currently consulting on four of its ‘generic’ policies. These are policies to commission treatments outside the normal annual commissioning cycle. We need to influence this process.

Genetic Alliance UK wants to submit a response to the NHS consultation that truly represents the experiences of the rare and genetic disease community.

Please tell us about your funding experiences via the following link that takes you to Genetic Alliance UK’s short survey:

https://www.surveymonkey.co.uk/r/IFRcallforevidence

Thank you.

 

 

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

Beer festival and a 52 mile walk to fundraise for birdshot

BUS members’ October fundraising
Birdshot beer bash

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Clare Wood from Newcastle held a beer festival for us, and above and below are a few pictures that set the scene.  By all accounts it was a very jolly occasion for fellow birdies, their friends and families and work colleagues.

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Birdshot helpers

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Birdshot bar staff

 

 

 


 

 

 

 

Here is a message from Clare:   “Just a quick update on the fundraising beer festival. We are now at £2833 which is fab. Thanks to Sharron, Barrie, Debbie, Annie, and David and Carly for their help with prizes, flags and designs. Ella (my daughter) also raised £600 doing the Great North Run recently.”

BUS hopes that this might become an annual event, like the Birdshot Shoot.  Despite the massive amount of work Clare put in organising it, she has already said she will be in touch next year when (we hope) she may do another one!

52 miles for Birdshot

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Barrie Standish and his friend John are two keen fitness fanatics in the North West of England who thought they could easily manage a 52-mile stroll for birdshot.  The aim was to promote the eye condition and raise a bit of money along the way.

On Friday October 21st, just after lunch, they set off on their route.  They walked from Glazebury, going through Lymm, Knutsford and Holmes Chapel. They walked 26 miles out and returned the same way. They set off at a brisk pace, and by evening time it was obvious that they would be walking through the night.  It was not as easy as they had imagined.

The following morning at 6.02am, Barrie’s wife Debs reported on Facebook:  “He is home now and tucked up in bed. His words: NEVER AGAIN…. So proud of them. Thank you to all who have sponsored for this amazing achievement…He will suffer when he tries to get out of the bed.  I am sure there could be less challenging ways, but that’s Barrie!”

Barrie commented afterwards to his birdshot friends who had supported him online through the night: “Thank you so much for all your support and donations, really, really appreciated your well wishes, it went a long way in helping us keep going through the night. I can honestly say that I have never done anything that hard in my life! We had to dig deep and then find some more from somewhere. The last seven hours were purgatory. John lost the skin on both feet and toes, and I’ve got away with 3 blisters.  My legs are absolutely battered, I’m lying on the couch not knowing what to do with myself, it’s the tendons at the backs of my knees, I can’t straighten them properly, walking around like Max Wall.  Never ever again.”

But we say: watch this space!

Barrie raised nearly £1,000 from his walk which is a fantastic total.

What a fabulous couple of fundraising events from the north of England! Thank you all for your great efforts. BUS will be putting all the money raised from these two events towards future birdshot research.

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

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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.

Better options for treating Birdshot

New research funding partnership between Fight for Sight and Birdshot Uveitis Society

Birdshot uveitis is a rare autoimmune disorder that has the potential to blind. It’s notoriously hard to treat. The UK’s main eye research charity Fight for Sight is partnering with Birdshot Uveitis Society to try to change that with new grants to researchers in London and Birmingham, to fund pioneering research that could lead to better treatments.

In birdshot, which is strongly linked to the gene HLA-A29, the immune system attacks two critical structures at the back of the eye: the retina and the choroid. The retina contains the photoreceptor cells that detect light and send visual signals to the brain, while the choroid is a layer of blood vessels that supplies the retina with oxygen and nutrition. When this supply is interrupted as during an inflammatory immune response, the photoreceptors can’t function normally.

Current options for treatment are limited to steroids and drugs to suppress the immune system. However in the long term these can cause sight-threatening complications such as cataract and glaucoma. We need some better options.

Stem cells from patients

Dr Anai Gonzalez Cordero at UCL Institute of Ophthalmology is leading one of the two new studies. The team will study a layer of cells in the retina called the retinal pigment epithelium (RPE) in tissue developed from birdshot patient stem cells.

“Subtle changes to RPE can be seen in some patients during the early stages of birdshot. This is not an obvious feature of the condition but current examination methods are limited, identifying only severe dysfunction,” says Dr Gonzalez Cordero.

“We do know that RPE can modulate the choroid and that RPE cells show HLA-A29 gene activity. Almost everyone with birdshot has a particular variation of this gene. Post-mortem tissue from birdshot patients is both scarce and unsuitable for detailed analysis. However we can develop mature RPE in the lab from stem cells derived from blood of living patients. This will allow us to explore the role of RPE in detail as well as providing a much-needed test bed for future treatments that can also be used by other researchers in the field.”

Iron overload is treatable

Dr Graham Wallace at the University of Birmingham will lead the second study. Here the focus is on genetic control of iron levels in birdshot.

“Iron is essential in the retina for photoreceptor cell function and is generally controlled by iron-regulating proteins. However free iron is highly toxic for photoreceptors, leading to an increase in oxidative stress. Iron is also involved in inflammation as it is essential for the proliferation of immune cells,” says Dr Wallace.

“Given a recent association between HLA-A29 and HFE H63D – a gene implicated in patients with iron overload – we think this could be an important route to explore with regard to birdshot. Iron overload is treatable and so may give us other options.”

Dr Dolores Conroy is Fight for Sight’s Director of Research. She says: “Understanding the root causes of birdshot is ultimately what will lead us to targeted, effective treatments. The Sight Loss and Vision Priority Setting Partnership tells us that this is what’s important to patients and so we are delighted to partner with Birdshot Uveitis Society to see the priorities addressed.”

Annie Folkard, a founder of the Birdshot Uveitis Society, said: “We are excited to support this innovative research. Studies likes these give our members great hope that in the future, improvements will be made to the current toxic treatments. Maybe even a cure will be found.”

Treatment with adalimumab (Humira®) now available in Wales

There is progress in Wales regarding an interim policy, published October 2016, for adalimumab (Humira®) for the treatment of adult patients with severe refractory non-infectious uveitis.

You can access the full Welsh interim policy at the link below.

Interim policy for treatment of adult patients in Wales with severe refractory non-infectious uveitis

The big question is: when is England going to catch up with Wales and Scotland (and the rest of the world)?

We were told, back in October 2015, that the published results of the VISUAL 1 and VISUAL 11  studies were required to permit the use of adalimumab to treat severe refractory non-infectious uveitis. Both sets of results are now available. We have been waiting patiently, but NHS England appears to be putting up a road block and looking for excuses for further delays.

NHS England has not yet responded to a jointly-signed letter on this subject, sent some weeks ago from ourselves (BUS), RNIB, Fight for Sight and Olivia’s Vision. There is also no sign of anyone at NHS England taking any notice of the desperate plight that a few of our members who need adalimumab treatment have had to endure for a considerable period of time. Meanwhile, their sight is continuing to deteriorate.

This is a most unsatisfactory state of affairs. BUS will continue to update you on the situation.

 

Invitation to UK Birdshot Summer Social

As before, this event will be taking place on the beautiful Thames Sailing Barge  ‘Phoenician’ which is situated in St Katharine’s Dock, immediately adjacent to Tower Bridge, London. You are free to drop in at any point during the day, but make sure you are there in time for our speaker at 2.00pm whom we are certain you will not want to miss.

Victoria Makepeace, a member of the Birdshot Society, will give a short talk on nutritional therapy in relation to immune suppressants and Birdshot.  Victoria is a nutritionist and nutritional therapist who just happens to have Birdshot, so it is a subject in which she is very interested and which she has researched in depth for herself.   She will be happy to answer any questions you may have.   You can find out more about Victoria on her website:  http://www.vmwnutrition.co.uk/index.htm

As usual, we will be serving drinks and finger food and providing a place where you can chat to others with Birdshot, exchange ideas and information and be part of the Society.

We are extremely fortunate that the interesting and unusual venue for this event is provided by Board member and trustee John Hall. We do hope that as many of you who can easily travel to London and who would like to meet others with Birdshot are able to join us.

We are suggesting a donation of £20 per person for the event, but it will be free of charge to members on benefits or low wage.

Please RSVP to annie@birdshot.org.uk to let us know you will be coming so that we have some idea of the likely numbers.

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

 

 

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!

 

Update on Humira and Ozurdex

HUMIRA NOW LICENSED FOR POSTERIOR UVEITIS

BUS learned this week that AbbVie, the manufacturer of Humira (adalimumab), has received approval from the European Medicines Agency for an extension of its marketing authorisation for Humira to treat certain forms of non-infectious uveitis. This means that in Europe, including the UK, and also in the US, “Humira is indicated for the treatment of non-infectious intermediate, posterior and panuveitis in adult patients who have had an inadequate response to corticosteroids, in patients in need of corticosteroid-sparing, or in whom corticosteroid treatment is inappropriate.”

AbbVie’s press release is attached here.

The updated ‘Summary of Product Characteristics’ (SPC) – the official product data sheet for Humira – can be found here: https://www.medicines.org.uk/emc/medicine/31860

The patient information leaflet for the Humira pen can be found here: PIL Humira July 2016

NICE MULTIPLE TECHNOLOGY APPRAISAL

BUS has also been invited to participate in the NICE Multiple Technology Appraisal which is looking at Ozurdex (dexamethasone) intravitreal implant and Humira (adalimumab) injection with a view to getting NHS funding approved for them to be prescribed for non-infectious posterior uveitis. We are currently preparing our ‘patient organisation statement’ to submit to NICE in August.  We have also nominated a number of ‘patient experts’ and a ‘consultant expert’ and we hope that one or two of them may be invited to put the patient’s viewpoint across at the Appraisal Meeting in February 2017.

We would like to thank those members who took part in our short survey last year about Humira and Ozurdex.  The anonymised information from these questionnaires has been very helpful in preparing BUS’s ‘organisation statement’.

Watch this space as this story unfolds.

POSSIBLE FORTHCOMING HUMIRA TRIAL

BUS is also trying to help get a trial under way to provide the practical evidence that Humira (adalimumab) can work for certain hard-to-treat cases of Birdshot as well as for other complicated, rare forms of autoimmune posterior uveitis.   Our team of experts led by Professor Andrew Dick, Ms Srilakshmi Sharma and Mr Alastair Denniston hope to put in an application in September to the National Institute for Health Research (NIHR) for possible funding, and we will know if we are successful by early next year.  We are all aware we need to provide as strong evidence as possible and in particular to show which groups of patients are best treated or will best benefit from treatment in order to convince NICE and commissioners to support use of expensive treatments for other conditions. The Birdshot team is going to give this its best shot, and we will keep you posted.