For those Birdshotters who couldn’t make the day, here is a flavour of what it was like, and for those who did manage to come – here is a reminder!
The subject of access to Humira and Infliximab was brought to the political arena this week, Wednesday 9th December 2015. Leeds North East MP Fabian Hamilton, who is campaigning on behalf of uveitis sufferer Samara Ullmann tabled a debate which asked the Government’s Life Sciences Minister George Freeman to consider asking the NHS to prescribe Humira.
One of the country’s leading eye specialists at Calderdale Royal hospital in Halifax, Mr Teifi James, has recommended it for Samara – who is already blind in her left eye – however so far NHS England decided not to allow its prescription.
This same issues applies to a few Birdshot Uveitis Society members who desperately need to find a drug they can tolerate and that works to save their sight. NHS England is currently denying them access to Humira and Infliximab.
The below link takes you to the debate and you can listen to the relevant portion of the debate debate if you select the option on the right side ” Prescription of anti-TNF’s”
BUS is delighted to distribute the first Birdshot Research network newsletter which brings up-to-date news of where we have got with our exciting UK Birdshot database and biobank projects.
To find out more about the timescale please find your copy of Birdshot Research News 1 here.
Sue Southworth, our Birdshot research Nurse who is based at Birmingham was appointed in July. She has been extremely busy working on the ethics for this complex undertaking, and is working hard towards a timetable of launching the Birdshot database and biobank in April 2016.
Any patient who wants their eye clinic to be involved in this should feel free to tell their consultant of their wishes, and their consultant should in turn be in touch with Sue Southworth to tell her of their interest. Alternatively you can tell BUS of your interest by filling in the attached expression of interest form and sending it to BUS.
You will find Sue’s contact details are on the newsletter so print off a copy and take it to your next clinic appointment and give it to your consultant so that you can also be involved.
Currently we have 5 centres who have said they would like to be involved and unfortunately for the time being, because of logistics and ethics, this project only applies to people with Birdshot Uveitis in England and Wales.
We look forward to hearing from you!
for team Birdshot
Recently we heard from Gill who is a Birdshotter based in South Eastern Australia. She told us about some research that is taking place at Royal Victorian Eye and Ear Hospital in Melborne who have started a combined study in Birdshot with Melbourne University.
Gill said: “They were very interested when I said that there may be other birdshot patients here in Victoria and beyond. If you are in Australia and interested in taking part (a simple blood test so far) could you let me know via Annie at Birdshot Uveitis Society firstname.lastname@example.org.”
BUS has subsequently been in touch with the researchers involved in the study and heard back from Alex Hewitt who said:-
BUS thinks that the prospect of international collaboration is very encouraging for the whole community and would welcome further discussions on how we can collaborate.
BUS met with NHS England in September along with a number of other eye charities and eye specialists, to try and find out what was going on and to lobby for this treatment to be available for severe refractory forms of uveitis where other treatments have failed. We were told at this meeting that NHS England would be reviewing the situation once they had received the published results of the recent trials on children and adults. In the meantime:-
- Everybody already being prescribed Humira or Infliximab, will continue to have access to these drugs.
- The current policy does NOT apply if the uveitis patient has a secondary disease eg if a child or adult is diagnosed with JRA and uveitis, they can still be prescribed Humira or Infliximab.
- The policy only applies to uveitis patients in England.
- The Individual Funding Request (IFR) route is still available for patients who are significantly different from other patients with uveitis. Blinding disease alone will not make a patient eligible for an IFR. In reality this means a request for individual funding will most likely be unsuccessful.
- The clinically critically urgent (CCU) process remains open, but the criteria is usually based on having a life threatening disease, and so again, this process is unlikely to be successful for now.
We recently heard unofficially that:
“The policy for the treatment of severe refractory uveitis for children has been revised and this was resubmitted last week for an in year policy development. Publication of the adult VISUAL trial data following external peer review is a key quality assurance for NHS England, and we will wait for these results to be published to revise the adult policy according to the study entry criteria and outcomes. We hope this information will be available in early 2016 and we will then be able to submit the revised adult policy as part of the NHSE in year policy development process.”
This means that for the time being, as far as people with Birdshot Uveitis are concerned, there is little chance of being prescribed these drugs for their Birdshot, unless they have some other secondary condition such as rheumatoid arthritis or Crohn’s disease where the drugs are already approved. Once the results of the VISUAL study on adults are published in a peer reviewed journal, NHS England will be asked to reconsider. I am afraid for the time being it is watch this space….
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.
BUS is delighted to announce that two new exciting research projects are to be funded via the joint small grants mechanism whereby funds raised by Birdshot Uveitis Society supporters are matched by Fight for Sight. Each award has a value of £15,000. These projects have just been through the rigorous Fight for Sight selection process and Fight for Sight will monitor progress closely for us. Our grateful thanks go to BUS fundraisers who are helping to make this research possible.
Westcott and colleagues: Surveillance study of incidence of birdshot chorioretinopathy
How many people in the UK receive a diagnosis of birdshot uveitis each year? Mr Mark Westcott and colleagues at Moorfields Eye Hospital, London, are going to do a two-year study to try to find the answer to this question.
The researchers will use an already-established UK ophthalmological reporting system to contact UK clinicians who see uveitis patients, asking them to report all new cases of birdshot uveitis to the study team. The reporting clinicians will then be asked to complete a detailed questionnaire for the researchers. Analysis of the questionnaire results will generate profiles of newly-diagnosed patients which will be examined for any patterns in findings or in the geographical distribution of cases. The researchers believe that their study will give the first proper information of the incidence (i.e “new diagnosis rate”) of birdshot uveitis in the UK. In fact, this will be a first worldwide. Data collected in the study may also generate further lines of research.
Clinical details requested in the study questionnaires will include the results of the various traditional eye examinations and tests recorded when each of the study patients was diagnosed with birdshot. The research team will ask for other information so that they can investigate some of the suspected risk factors for birdshot. This will include noting any medical conditions the study patients may already have when they were diagnosed, what medications they take, and looking for any regional variations in where new birdshot cases are discovered in the UK.
This study will enable the researchers to characterise the demographics and clinical features of all newly diagnosed birdshot patients in the UK, and derive the incidence of this rare disease. This will be a useful benchmark for future studies.
Denniston and colleagues: extended use of optical coherence tomography (OCT) to assess disease activity in birdshot chorioretinopathy
One of the problems in treating birdshot uveitis is the difficulty of measuring current disease activity. Electrodiagnostic testing – the electroretinogram (ERG) – is commonly regarded as the gold standard for measuring disease activity in birdshot. However, an ERG is an uncomfortable, time-consuming procedure which is not available in all eye centres.
A team of researchers in UK and US, headed by Mr Alastair Denniston at Queen Elizabeth Hospital, Birmingham, is to carry out a small study using two newer forms of optical coherence tomography (OCT) scanning to measure disease activity, rather than using OCT simply to measure disease damage. The researchers hope that this new use of OCT scanning will not only enable birdshot treatments to be more accurately targeted to individual patients, but that it will also help to speed up the diagnosis of birdshot relapses, meaning that they can be treated promptly.
A total of 45 patients will be recruited for the study: 30 by Mr Denniston in Birmingham and 15 by Professor Jay Duker at the medical retina clinic, New England Eye Center, Boston, Massachusetts. All the study patients will receive their usual care, including standard OCT scans. In addition, the UK study patients will receive wide-angle Spectralis OCT scans and the US patients vertical cavity surface emitting laser (VCSEL) OCT scans to measure their birdshot activity. New software will perform automated analyses of the study OCT results and track how these alter over time. The changes recorded on the two different types of study OCT scans will be examined to see how they correlate with patients’ other test results, including ERGs. This should enable the researchers to identify which measurements from the OCT study scans should be used in a larger study to evaluate this technique further.
At present, the lack of reliable and widely available methods to assess birdshot activity and guide treatment decisions can result in overtreatment or undertreatment of birdshot. Not being able to measure disease activity accurately has also hindered the development and trialling of new birdshot treatments. We hope that this pioneering work with OCT scanning will help change this.
BUS member Barrie and his wife Debs, decided to organise their own small sponsored walk to raise money for Birdshot Uveitis Society and they roped in a few of their friends, to join them. They walked from Rivington Barn in Bolton to the Grey Horse, Glazebury, Cheshire last Sunday 11th October. Below they are pictured setting off and also on reaching their final destination. Clearly they are a fit group. The two women set a cracking pace and their 25 km walk was smashed in only 4 hours!
With grateful thanks to all who kindly sponsored this walk as well as those who actually did it. Congratulations! We are sure you all deserved a pint or two at the finishing line.
They reckon they will have raised over £1,000, between them which is absolutely fantastic. It is not too late to add to their sponsorship as there is a donation page set up at Just Giving:
RNIB is running a campaign to overturn NHS England’s recent decision not to approve Humira and Remicade for the treatment of severe refractory uveitis. No doubt you know that this is a rare condition and that this decision will affect approximately 100 children and 200 adults in England per annum.
This decision will affect people with hard to treat Birdshot Uveitis who fail on the more usual treatments, either because they do not work, stop working or cause unacceptable side effects.
RNIB is now calling on its supporters to take our e-action and send a letter to NHS England urging them to reverse their decision. Birdshot Uveitis Society would urge all members, their families and friends to support this petition. The e-action and template letter is simple and quick to use and can be accessed at:
Host a Feast for your Eyes (in the dark) and help fund a future everyone can see!
We’re excited to tell you about the new event that we are partnering with Fight for Sight and would love it if you would like to take part by hosting your own feast in the dark.
It’s a great reason to gather together your favourite people and have fun. It’s also about raising vital funds for essential eye research into Birdshot Uveitis via the Fight for Sight small grants scheme.
The idea is for you to hold your event between 16th and 22nd October 2015.
From cheese and wine, to lunch with friends or a dinner party – there are any number of options for your style of feast. Make it simple, or go grand. Invite your nearest and dearest or stage a big event. It’s up to you.
Host it at home, at work, at school or in the community. Get the whole family involved or organise a get-together with your friends, local group or sports team.
Your feasters make a donation and their money will fund birdshot research to prevent sight loss and treat eye disease.
Sign up with the Birdshot Uveitis Society and get your free Feast your Eyes pack, complete with blindfolds!
Look forward to hearing from you.
Best wishes Annie