How can we get hold of new medicines?

Many of us with Birdshot will have experienced the difficulties of getting hold of medication that controls our Birdshot, if we don’t respond to the ‘usual’ medication regime of steroids and mycophenolate mofetil.  For many of us, we have had to get our consultants and GPs to apply to the relevant health agency (usually the Primary Care Trust that covers our area) for a ‘special circumstances hearing’.  Often, this takes months, only to be told, at the end of the process, that the PCT will not approve the medication regime we have applied for.

Well, help is at hand!  Not only is a ‘rare disease strategy’ being implemented across the UK in 2013, but also, the Genetic Alliance UK is currently looking at how we, with rare diseases, should get access to medications (none of which have been specifically licensed for our disease) and who should decide whether they are safe or not.

You can help.

The Genetic Alliance UK is now launching a recruitment campaign for an innovative and exciting research project about new medicines.

They want your views and your participation – It’s all about getting your views heard.  Below, we include a few more details about the project and how you can get involved.

Anyone interested in participating should visit the Genetic Alliance website for full information but here is a short summary:

New medicines: How should we weigh the risks and benefits? And who should do so?

Genetic Alliance are looking for people who are affected by a severe, rare or genetic condition, to take part in a Citizens’ Jury later this year. They are looking for up to 16 individuals to form a diverse jury that will deliberate a very important issue – the risks and benefits of new medicines. Not only will jurors get their voice heard in an innovative and high profile way, but they will be paid for their time too!

There is further information available about the project and how people can get involved on the Genetic Alliance UK website, including a short explanatory video clip and an online questionnaire for people to register their interest.

The aim is to generate as much awareness and interest in the project as possible! To  find out more please contact Project Officer, Amy Simpson (asimpson@glam.ac.uk) or Marketing Officer, Julian Walker (Julian@geneticalliance.org.uk).

 

Rea and Annie

 

 

 

AIN 457 Study – my personal experience

P1250053Could this be the answer?

From a personal perspective, Nick tells his story about his experience on the Phase 3 Novartis AIN457 Study

“I’m really happy to bring some good news. I’ve been taking part in the Study of a new treatment for the last 6 months and it seems to be working. I’ve been off all other meds for 2 months now without any sign of a flair-up and my doctors agree that the new treatment seems to be controlling the disease.

AIN457 is a new drug in the final stage of trials to treat a number of different inflammatory conditions. It has been created by the Swiss company Novartis and is a fully human antibody to Interleukin 17a – a messenger in the immune system which is thought to be responsible for a number of auto-immune conditions including Birdshot. Continue reading

Clinical Trials

Recently Birdshot Uveitis Society registered on the NHS Choices site (this link takes you to the section about Uveitis) and I discovered a  link to a  list of on-going Clinical Trials.  I was quite excited at first until I realised how little appeared to be going on in the UK.

We are often asked about  clinical trials that are going on in the UK and also in the rest of the world. Sadly there are no clinical trials that relate specifically to birdshot, and hardly any current ones in the UK for uveitis.

Uveitis Information Group website has a whole section on clinical trials that you might like to read before even considering one. There is also a booklet published by the UK Clinical Research Collaboration which may be of interest to you.

Understanding Clinical Trials

Unintended effects of Statins

Rea came across this piece of research, published in the BMJ last week, which highlights increased risk of liver/kidney damage and myopathy and cataracts from taking statins.  The research highlights some of the possible side effects of taking higher doses of statins.

As a result of this, Doctors are being urged to choose the lowest possible dose when they prescribe cholesterol lowering statins.

If you currently take statins  you may wish to review this with your GP and Ophthalmologist, discuss the benefits against the risks to find out if drug you are prescribed should be changed.

The link below takes you to the published paper.

http://www.bmj.com/cgi/content/full/340/may19_4/c2197#SEC1

Reasonable adjustment for VI at work?

Following on  from Adrian’s article  entitled “Coming out at Work” about  the Disability at Work Act, we came across this piece of research being done by David Griffiths.  He is looking for visually impaired people who are prepared to be interviewed over the telephone and are  interested in helping out with his research on this topic.  If you are, he can be emailed at:-   d.griffith@btinternet.com. Continue reading

Saffron

We Promised to Re-Issue the Article on Saffron – here it is:

Saffron Improves Vision In AMD Patients

We read about this in the latest Vision Newsletter March 2010. It is interesting to see that some serious research is being done into the affect of Saffron on AMD.  A couple of our members have suggested that Saffron appears to have helped them but we had no idea that scientific research was being done. Continue reading

Green Tea

New Evidence That Green Tea May Help Fight Glaucoma and Other Eye Diseases

ScienceDaily (Feb. 20, 2010) — Scientists have confirmed that the healthful substances found in green tea — renowned for their powerful antioxidant and disease-fighting properties — do penetrate into tissues of the eye. Their new report, the first documenting how the lens, retina, and other eye tissues absorb these substances, raises the possibility that green tea may protect against glaucoma and other common eye diseases.

The whole article can be found by following this link.

http://www.sciencedaily.com/releases/2010/02/100218125520.htm

The Importance of Patients in Research of Rare Diseases

It seems very apt, when we have just finalised the date for our  first Birdshot Patient Day for Saturday 11th September 2010, to come across some research by EURORDIS (the EURopean Organisation for Rare DISeases).  EURORDIS is the voice of ‘patients with rare diseases across Europe’.

The survey has found that rare disease patient organisations (such as BUS, the Birdshot Chorioretinopathy Uveitis Society) play important roles as catalysts for research on their respective diseases. They can also be valuable partners in identifying the gaps and supporting early research in areas not covered by the public or private sectors.

Continue reading

Alendronic Acid – Take a break!

Take a break to prevent a break!

“Don’t use it for more than five years!”

We recently came across this article about the long term effects of Alendronic acid and thought we should bring it to your attention.  The long and the short of it is that it is not a good idea to use the drug for periods of longer than 5 years,  as it has the effect of making your bones go brittle and actually causing breaks.

Naturopath,  Jacob Schor, ND, FABNO,  writes:

“The drugs that have been used with apparent success to treat osteoporosis may now have a problem. Alendronate may weaken bone and lead to increased fracture risk. Continue reading