Our First Winter Fund Raiser

Access To Medicines

BUS was recently invited to participate in a debate on ‘How Can We Improve Earlier Access to Medicines for Patients in the UK?’  The debate was set up by Les Halpin, a very inspirational man who founded EMPOWER: Access To Medicine following his diagnosis of Motor Neurone Disease and realising that there were few medications licensed for this disease and that if research was undertaken on new medications, it would take many months or even years before  the medicine was available for use.

This debate was held at the King’s Fund in London and brought together a range of leading and influential individuals including:

▪   Lois Rogers, leading health journalist and contributor to publications including The Sunday Times, The Economist and New Statesman and consultant to the Department of Health and other government agencies

▪   Dr Richard Barker, Director of the Centre for Accelerating Medical Innovations, Oxford University and former head of the ABPI

▪   Yogi Amin, human rights and medical ethics lawyer, Irwin Mitchell

▪   Alastair Kent, Director of Genetic Alliance UK

▪   Professor Sir Peter Lachmann, Emeritus Sheila Joan Smith Professor of Immunology in the University of Cambridge and a fellow of Christ’s College

BUS has received a thank you letter for its input into the debate, which is copied below and gives information on how you can become involved in this campaign and how you can access the film of Les Halpin talking about the campaign:

Empower: Access to Medicine

I would like to personally thank you for attending the Empower: Access to Medicine debate at the King’s Fund last week. We appreciate your interest in and support for such an important subject.

I am very heartened by the response to this campaign. Whilst there are many separate discussions that are taking place on this issue, my main interest is in the voice of the patient which I believe has been least heard to date.

I am therefore delighted that patient advocacy groups from around the country have responded so positively. My key aim moving forward will be to support a unified patient voice so we can together deliver much needed change.

A longer and more comprehensive version of the film that was shown at the debate is now available online at www.accesstomedicine.co.uk and I would urge you to share this with colleagues and networks that may also be interested.

You can also join the conversation online through Twitter – find us on @empoweratm

The Empower team is now defining its campaign objectives as we continue to reach out to interested individuals and groups and we will keep you informed of our next steps.

In the meantime, if you have any questions or suggestions about the campaign, please contact Karen, James or Sarah at JBP on 0203 267 0074.

Yours sincerely,

Les Halpin

Founder, Empower: Access to Medicine

 

Winter Benefit – tickets now available!

We are thrilled to announce that tickets are now available for our first Winter Benefit – it promises to be a fun evening and a great excuse to get together, party and raise much-needed funds.

DATE:            Saturday 3rd November

VENUE:        The Rifles Club,52-56 Davies Street,London W1K

TICKETS:     £80 each

The evening will commence at 7.30pm with a champagne & canapé reception, followed by a three course dinner with wine, and dancing until the early hours!

Fundraising activities during the night will include a silent auction and raffle. We are looking for companies to help sponsor the event and also for prizes, so if anyone has suggestions for either or if you would like to order tickets please contact either lorraine@birdshot.org.uk or suew@birdshot.org.uk

We look forward to seeing you there!

Easyfundraising.org.uk – please sign up and raise funds for free!

This website does exactly what it says – you can raise money for BUS every time you shop online and it won’t cost you anything, it’s that easy! Simply sign up at www.easyfundraising.org.uk and specify “Birdshot Uveitis Society” as the charity for which you are raising funds, then every time you make any purchase online you just need to do so via the easyfundraising website and the retailer will automatically make a donation to BUS. There is absolutely no cost to you, the site covers all of the major online retailers, and BUS benefits from a donation.

I recently booked the flights for a family holiday this way and we just got a donation of £17.85!

Please, if you do even a little shopping online, sign up today, we really do need your help!

Accessing unlicensed medications

The Medicines and Healthcare products Regulatory Agency (MHRA) is the agency that regulates all new medicines.  They weigh up the risks and benefits of each new medicine, following the completion of phase III trials and then decide whether to license it or not.  Some of us with Birdshot will know that we are unable to get some medications that may be licensed elsewhere (e.g. in the US) or that have been tested at phase III trials, but have to go through the sometimes lengthy procedure to be licensed.

The MHRA is now consulting on whether they should provide early access to medicines before they are formally licensed.  The consultation period ends on 5 October, and if the MHRA goes ahead with this scheme, it may mean that those of us who have tried all the more traditional approaches to controlling our Birdshot without success can get hold of newer medications earlier.

There are a few provisos, of course!  The scheme will be voluntary and limited to medicines that show a “significant advance in treatment in an area of unmet need”.  The MHRA also expects to limit the scheme to only one or two medicines each year.  Finally, the scheme will be limited to those medicines that have reached phase III trials (apart from exceptional cases – yet to be defined).  If this scheme goes ahead, the MHRA will provide an opinion of the risks and benefits of the medicine on its web site to help clinicians and patients decide, and it would then be up to the funding body (your local clinical commissioning group made up of GPs in your area; or specialist commissioning group) to decide whether to fund the medicine or not.

So, even if the scheme is launched, there will still be hurdles to jump over, but at least it provides hope for those of us who are struggling to get hold of medicines on the NHS which are not licensed here.

It would be really, really helpful if our patient and professional members could give their comments to the MHRA

To read more about the proposed scheme, please click on the link below:

http://www.mhra.gov.uk/NewsCentre/Pressreleases/CON174774

If you want to give your comment on this scheme, you can email earlyaccess@mhra.gsi.gov.uk by 5 October 2012

Launching the Human Ocular Immunology Consortium

On Tuesday 22 May, Rea and Annie were privileged to be invited to the launch of the Human Ocular Immunology Consortium.  This Consortium is a partnership between the National Eye Institute (NEI) in the United States and the NIHR Biomedical Research Centre in the UK.  Researchers from London, Bristol and Washington will be developing joint research programmes in the field of Ocular Immunology.  This is really exciting, as it gives us a much wider group of experts who can look into the causes of, and better medication for Birdshot.  It also opens up the possibility of having an international biobank for Birdshot and other posterior, auto-immune forms of uveitis.

The launch was introduced by Professor Peng Khaw  (Director of Research and Development, Moorfields Eye Hospital NHS Foundation Trust and Director of NIHR Moorfields Biomedical Research Centre and President of ARVO – the Association for Research in Vision and Ophthalmology).  For those of you who attended the Birdshot Day in March of this year, you may remember that one of our US members, Doris Lapporte, asked why there could not be an agreement for Birdshot research across the UK and the US, as US Birdshotters were missing out.  Peng Khaw referred to this in his opening remarks – he then went on to say that we had been listened to!   Well done Doris!!  Peng has always been a strong supporter of the Birdshot Uveitis Society and the Birdshot Days and he kindly provided the narrative on our 2010 Birdshot Day short film.

We are so excited by this development, especially as it demonstrates how influential we can be when we Birdshotters work together.

 

Next SE/London Meeting – June 9th 2012 with exciting new research update!

The next meeting for Birdshot Friends in the London/SE area will be held on Saturday 9th June, from 10.30am – 1.00pm at St Thomas’s Hospital, Westminster Bridge Road, London SE1 7EH.

The meeting will take place in South Wing Lecture Theatre on the Ground Floor, near to the eye department. We might even go for lunch afterwards!

Joining us will be Professor Glen Jeffrey who has some new research to share with us and who is asking for our help – very exciting!!

There will also be some other guests on the day – watch this space!! – and plenty of opportunity to chat and catch up on all things Birdshot!

Everyone is welcome! If you are planning to come along please do e mail us at southeast@birdshot.org.uk

We look forward to seeing you there!

South East Team x