Infliximab and Humira

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….

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.

Birdshot research news – October 2015 update

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

SUMMARY

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

SUMMARY

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.

Barrie’s sponsored walk

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!

Barrie and his friends line up before the walk

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:

https://www.justgiving.com/Barrie-Standish

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Campaign to overturn NHS England’s decision regarding Humira and Remicade

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:

http://e-activist.com/ea-action/action?ea.client.id=1670&ea.campaign.id=4107ili

Feast for your Eyes 16th – 22nd October 2015

Dear Birdshotters

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!

Here are some ideas to get you started!

Look forward to hearing from you.

Best wishes  Annie

email: info@birdshot.org.uk

Dalazatide – possible new treatment for uveitis

Birdshot Uveitis Society recently read about a new drug which is being developed and below is information that has been provided to us by the company developing the drug.

A drug candidate in the clinical pipeline for psoriasis may also one day be a treatment for uveitis. The experimental drug, called dalazatide (formerly known as ShK-186), is being developed by Kineta, Inc. a biotechnology company in Seattle. Dr. Ernesto J. Muñoz, Associate Director for Translational Immunology at Kineta, led the company’s latest research study focused on uveitis. “Our work using a model of anterior uveitis shows that dalazatide is able to prevent disease and the inflammation that comes with it,” Dr. Muñoz said. The study was conducted in rats utilizing a well accepted model of uveitis. The Kineta researcher sees potential for this work to translate to several autoimmune eye diseases including chronic anterior uveitis, Birdshot uveitis, Sjögren’s syndrome and dry-eye disease.

Dalazatide is significantly different from other drugs currently available for autoimmune diseases and autoimmune eye diseases. It is designed to target a subset of immune cells that cause autoimmune inflammation, without shutting down the greater immune system. The hope is that dalazatide will not only be more effective, but safer too.

Kineta intends to form a partnership with a larger pharmaceutical company to bring dalazatide into later-stage clinical trials and eventually to the market. Because it targets pathogenic T cells that bring about inflammation, the experimental drug may eventually reach beyond psoriasis and address many more autoimmune diseases. In addition to psoriasis, researchers say the drug candidate also has excellent potential for lupus, rheumatoid arthritis, multiple sclerosis, asthma and uveitis. These diseases all share the common central issue of autoimmune inflammation and that is what dalazatide is designed to target.

It is very early days and impossible to tell at this stage if the drug will be a useful tool for people with Birdshot.   A lot of work needs to be done to test the safety and efficacy of the treatment, but we look forward to future developments with interest.

 

Fabulous fundraising up Kilimanjaro

Summit Photo of Martin and IThe operations director and senior contracts manager from John F Hunt have just come back from Tanzania having achieved a midlife objective that they had set themselves earlier last year, to scale Kilimanjaro the highest mountain in Africa, and highest freestanding mountain in the world. They have also achieved their magnificent object of raising circa £20,000 for research into Birdshot. The plan was hatched many months ago and the first we heard about it was an email from Charity Challenge, the organisation who organised their trip, telling us of Bill and Martin’s plans. Bill and Martin know something of the problems that Birdshot can bring because their company’s MD just happens to have Birdshot.

Here is a first hand report of the expedition that we have just received. Bill picks up their story:-

“The trek began at the Rongai route entrance of the Kilimanjaro National Park. Our group, which consisted of 21, equally stupid… I mean intrepid trekkers, made our way over the next 4hrs at a rather pedestrian pace set by the porters to the Myers Camp Site at 2760 mtrs above sea level. “This is going to be easy” we thought!

The night was spent camping under the African night sky which was beautifully illuminated by the seemingly endless number of stars. Fantastic. Unfortunately sleep was not quite as fantastic as it seemed it would be as our tents and mats that had previously been set up by the porters had been placed on top of all the rocks and stones that they could find! and I would say that 2 hrs sleep max was all that was had.

The next day saw us rise at 6am to calls of “washy washy”?? The porters bring round a small bowl of warmish water for each person to wash in. Well, this is where reality hit home. This isn’t going to be a 5 star lavish experience and any dignity you may have wanted to reserve soon goes out the window in the course of trying to keep as clean as possible! Enough said.

Breakfast is served at 7am and consists of porridge, toast, eggs and more porridge, plus tea & coffee.

Following breakfast we then set off again and over the next two days, trekking for around 8-10 hrs a day we pass through Kikelewa Camp (3600 mtrs) and onto Tin Hut Camp (4200 mtrs), which is at the base of Mawensi mountain. This camp is a proper dust bowl and is situated in what can only be described as a desert type landscape, very barren and quite bleak. However, the view of the Mawensi peak above is cracking and quite awe inspiring.

Upon arrival at Tin Hut Camp, we take lunch, as we do everyday at around 1-2pm. This is a hot lunch and is generally a rice or pasta dish and in all honesty considering where you are the meals are not bad.

Following lunch we go for an “acclimatisation climb” for 2hrs which takes us to a ridge midway up Mawensi and to an altitude of 4420mtrs.

By now most of the party are experiencing some form of altitude related sickness. This materialises in the form of headaches, nausea, dizziness and breathlessness.

A number, if not the vast majority of the trekkers, myself and Martin excluded however, have opted to take Diamox which is medication which helps overcome the effects of altitude. We decide to tough it out as we suffer from “real man syndrome”, which probably means we have cut our nose off to spite our face!

We stay at the camp again that night, which is the only time you spend two nights in one camp and the following morning we head off on another acclimatisation trek, this time to the snow capped ridges of Mawensi, which takes us to an altitude of 4700mtrs.

At this altitude you definitely notice how out of breath you quickly become, particularly if you try and move too fast. The porters, from day 1, have repeated the words “poly poly”, which mean “slowly slowly” and I now appreciate why they purposely set the pedestrian pace to start with, which is in effect to get you used to it for later and the summit climb.

The following morning we head off on a 4hrs trek across what they call “The Saddle”, which is the flat stretch of land between the base of Mawensi and the base of Kilimanjaro. This is approximately a 9km walk which is across open, desert land and which takes us to Kibo Camp from where we will make our summit attempt later that evening.

Well, this is it. After dinner we are told to go to bed early and get a couple of hours sleep as we will be woken…….yeah right as if you can go to sleep, at 11am to prepare for the summit climb at midnight.

On Wed 11th February at midnight and following a quite serious briefing from our trek guide we finally began to climb/trek Kilimanjaro. You head off in a line and slowly zig zag up the mountain. In all honesty all you have to do is get yourself “in the zone” and simply focus on the pair of boots in front of you and follow on relentlessly for what seems an age. At one point I felt particularly dizzy and seemed to hallucinate also for a short while but you slap yourself out of this and continue. Martin I know found that his breathing was particularly laboured and had to dig deep to maintain progress.

Many of the others in our party were struggling to cope with various symptoms of altitude sickness and the neat line of trekkers soon became separated and distanced from one another as the individuals pace slowed to allow them to cope or not as the case may be. The porters, guide and doctor at this point were superb in recognising people having difficulties and ensured that they were encouraged to rest, eat and drink accordingly, to allow them to continue…hopefully.

Around 6am, mid way up Kilimanjaro the night sky changed and deep orange peaked over the horizon as the sun rose. This lifted the spirits no end and once the sun rose clear and the day brightened and blossomed the view across Tanzania and the neighbouring plains of Kenya was awesome and unforgettable.

Eventually we reached Gillians Point (5685 mtrs), which is known as the false summit, around 12 hrs after setting off. However, we were then informed that the true summit, Uhuru Point (5895 mtrs), was further around the rim of the crater and another 210 mtrs higher in altitude. This actually only looked a very short distance but proved to be a further 1 ½ hrs away and which was bloody tough going due to the reduced oxygen levels! This literally was take a laboured step and take a breath, take a laboured step and take a breath. Poly Poly !!

When Martin and I got there we were pretty knackered but ecstatic to have reached our goal. It’s a fantastic, satisfying and a quite overwhelming and even emotional feeling.

Attached is a photo of Martin and I at the summit, this is the shot we wanted and which we had trained for since April 2014 when the trek was originally organised.

After spending only probably 15 minutes at Uhuru Point we began the long decent back to Kibo Camp. All in all from the time we started the climb to the time we got back to camp it took 20hrs. Quite a mission. To cap it all, once back at Kibo, we were told that we then had to trek back across the saddle for another 4hrs to another camp site where we would spend the night, prior to one more 18k trek the next day back to the Rongai Gate and a well deserved couple of beers !

That’s one off the bucket list….thankfully. What’s next, hmmm.

I would like to take the opportunity at this point on behalf of Martin and I and indeed the Birdshot Uveitis charity to thank again all who have kindly dug deep and sponsored the trek. We currently, without taking into account the gift aid, have raised £18,860.00 but have another 3k approx pledged and therefore expect to exceed the £20.000 mark before the Just Giving Page closes in two weeks time. This is absolutely brilliant, well done everybody.

If, reading this, you feel inspired to contribute, you can still do so by googling:- www.justgiving.com/johnfhunt where upon it will become apparent how to post your donation.”

3rd Birdshot Day Saturday 14th November 2015

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We are pleased to announce details of the 3rd BUS Birdshot Uveitis Day on Saturday 14th November 2015.  We will be holding it at the Grange City Hotel, 8 – 14 Coopers Row, London EC3N 2BQ, close to Tower Hill tube station and Fenchurch BR station.  The educational day is intended for people with Birdshot Uveitis, their family members and health professionals who treat people with Birdshot or research Birdshot, or want to learn more about the condition.  We welcome both old and new friends.    A two course buffet lunch, tea and coffee will be provided and the day will be divided into five main sessions which are briefly described below.

SESSION 1Chaired by Professor Andrew Dick

Birdshot Uveitis and where we are now: Medication and keeping yourself well – an interactive panel presentation including a doctor, pharmacist, specialist nurse and chairman with lots of opportunity to ask questions from the floor for example, information about trough levels and blood tests; information about skin problems,  drug interactions; managing stress and how to keep well on treatment.

SESSION 2Chaired by Professor Phil Murray

The importance of partnership and collaboration in research: NBRN and BUS partnership; Fight for Sight and BUS partnership: update on some of the research projects supported to date and the future,  with Q & A’s. Speakers will include Julian Jackson, ( Fight for Sight) and Birdshot researchers: Alastair Denniston, Graham Wallace, Omar Mahroo, Professor Glen Jeffery.

SESSION 3

1) Reducing Stress – an interactive session where Mark Westmoquette shows how mindfulness could help reduce stress including some simple introductory exercises
2) Living with Birdshot – a led workshop where patients share their experiences

SESSION 4Chaired by Professor Miles Stanford

National Birdshot Research Network,  future developments and new research in the pipeline,with short presentations from leading researchers involved in Birdshot related research in both the UK and Holland.   The speakers include consultants and specialist researchers such as: Carlos Pavesio (Moorfields Eye Hospital), Jonas Kuiper, (Department of Ophthalmology and Laboratory of Translational Immmunology, Utrecht)  Pearse Keane (Moorfields Eye Hospital), Andrew Dick and Richard Lee (Bristol University/Bristol Eye Hospital).

SESSION 5

Question Time –  The Birdshot panel of experts answer your questions, with: Andrew Dick, Miles Stanford, Phil Murray, Carlos Pavesio, Pearse Keane, Alastair Denniston, Jonas Kuiper, Richard Lee, John Hall, Annie Folkard and others.

As well as the talks, on the day you will be able to network and socialise with our ‘Birdshot Community’ – made up of professionals, people with Birdshot and family members.  You will be able to:

  • Meet experts in the field of Birdshot
  • Meet other patients with a Birdshot diagnosis
  • Ask questions about Birdshot
  • Ask questions about medication
  • Find out about new treatments and research

We will have a range of exhibitors there  including: Fight for Sight, RNIB, Macular Disease Society, Guide Dogs for the Blind, and Optima Low Vision and others.

Please register on line to reserve your place, or print off Birdshot Day Registration Form and send it to BUS, PO Box 64996, London SW20 2BL, or return it by email to info @ birdshot. org. uk.
This event is being organised by BUS  and members of the National Birdshot Research Network.  We are  particularly grateful to Professor Andrew Dick and Karen Bonstein for their help with developing the programme.  We are extremely fortunate to  have the continued support of a dedicated group of clinicians and researchers who form the heart of the National Birdshot Research Network.

BUS very much look forward to meeting you all on Saturday 14th November 2015.

Annie

for Team Birdshot

Email: info @ birdshot. org.uk

Book your places now!

As before, the conference, including lunch, is free,  but we do require a £20 refundable registration deposit (plus £1 non-refundable administration fee to pay for postage and Paypal fees) – your registration fee can be returned when you attend the Day, but if you choose to donate your registration fee to help BUS develop the next Birdshot Day, we very warmly welcome this. You can pay your registration fee by using the button below (debit and credit card & PayPal), or by sending a cheque by post to BUS, PO Box 64996, London SW20 2BL.


Online

Registration



If you are claiming benefits or on a pension we will waive the deposit as we do not want to prevent people attending due to financial constraints.

Accommodation

If you want overnight accommodation the Grange City Hotel has offered us a concessionary rate.  Please note to obtain the special rate, your hotel booking must be made at least 1 months in advance of the day, as nearer to the date prices will unfortunately go up.  Information about this, including the rates can be found at the following link: http://www.grangehotels.com/business/birdshot-uveitis-society/

We are extremely grateful to M3 who have sponsored the printing and distribution costs of the publicity poster.

 

 

 

Specialist commissioning process update

Birdshot Uveitis Society members based in England may be aware we have been awaiting the results of the Specialist Commissioning process which has been going on over the last year. This is the process whereby government will decide which drugs are available for different rare conditions depending on the evidence that is available which shows that the drugs are effective.

We had been led to believe that the outcomes would be announced in December.  The recent news is that the decision making process had been delayed as a result of the threat of legal action by a patient group, (nothing to do with eyes or ophthalmology, but some other rare condition), who felt that the process was unfair.

In the meantime we’d be interested to hear from any patients with Birdshot Uveitis in the UK who have been turned down for treatment with either Humira or Infliximab and whose consultants are struggling to control the inflammation in their eyes with the more usual treatments. It would be interesting to get some idea about the numbers involved and to see what can be done to help.

Please do get in touch with BUS info@birdshot.org.uk and let us know if you have been experiencing this difficulty.