Getting Ferriprox

 

 

 

 

 

 

Have you been able to get Ferriprox, are you having trouble getting Ferriprox? Take a look at this letter below Amanda composed on my behalf to my local MP, maybe your in this situation I can't get the drug due to my location. If so, then I am sure you will benefit from this letter,

 

My thanks again go to Amanda.

Dear *******

I am writing to you in the hope that you will be able to help me.  I have made an appointment to see you at your regular surgery at ******** Borough Offices later this month but my problem is of an urgent nature and I was hoping to be able to discuss it with you sooner.

 

I have a rare neurological condition called Superficial Siderosis (please find further information at superficialsiderosis.wordpress.com).  In brief, it is a condition which can follow more than one brain bleed and as the blood is broken down by the body,  it leaves iron salt deposits on the brain surface, cranial nerves and spinal cord.  This causes, among other symptoms, disabling disruption to balance, problems with sight and hearing loss.  It is a degenerative condition.

 

Until recently, there was no hope for sufferers: in fact before the advent of MRI imaging, it was only ever diagnosed in post mortem examinations.  In the past few years, however, following trials in America (by Dr Levy, Johns Hopkins Hospital, Baltimore) there is some hope.  A drug, Deferiprone (brand name Ferriprox) usually used for removing excess iron from the body in people with beta-thalassemia major, has been used, with some positive results to help halt the symptoms of SS and in some cases, has helped them to improve.  On the grapevine it is said that Dr Levy’s formal study is due to be published later this year).

 

There are a handful of other patients with this condition taking this drug in the UK under: Dr Werring, UCL, London; Dr Ray, Walton Centre, Liverpool and Dr McClean, Royal Cornwall Hospital, Cornwall.

 

I am writing to you because, although my consultant (Dr ****, Consultant Neurologist, ***** ****) has been able to secure funding from the hospital for a 90 day prescription, his application to the NHS IFR Panel South Region (Wessex Area Team), based in Southampton has been declined, so after the end of March, I will no longer have access to this potentially lifesaving drug.

 

After meeting with Dr **** last week, he assures me that his application was robust but that he will be appealing against the decision from a clinical point of view.

 

I am making my own appeal and having examined the Individual Funding Request Policies (http://www.england.nhs.uk/wp-content/uploads/2013/04/cp-03.pdf) I believe that I have a case considering that there are other IFR panels in the country who have approved funding for this expensive drug for ‘off ticket’ use for other patients.  The guidance from the IFR Manager, in a phone discussion with my friend, Amanda Fearn this morning would indicate that the only reason there should be a difference in decisions between regional IFR panels would be if there were any contraindications in using the drug – of which there are none.  There is also the grounds of irrationality, under which the reasonability of the decision reached can be questioned.

 

My hope is that you will be able to ensure that I am receiving the treatment I need, based not on my geographical location but my need and suitability for this drug.  I have a 15 year old son and a full and active life, despite my disabilities.

 

My journey has been a positive but challenging one.  I suffered a brain bleed following a brain aneurism in 1983, which left me for a while in a coma.  I was 13 at the time.  The doctors told my mother that the prognosis was bleak: that if I recovered, I was unlikely to lead a normal, independent life.  30 years later, despite being registered disabled, I am a qualified fitness instructor and have run three half marathons for charity.  Until my health declined last year, leading to my diagnosis with Superficial Siderosis, I was employed full time at a local health club.  For some years, my focus has been on improving my own impairments through training and helping others to do the same.

 

This, more than anything, is a plea for help.  Thank you for your time in reading this, I sincerely hope you are able to take up my cause.


 

Yours Sincerely,


 

Jason Roberts

Get Social with us!

Our Facebook group is a kind and compassionate space for people with superficial siderosis to share the ups and downs of everyday life - search 'superficial siderosis - the silent bleed' and send a request to join.

  • Facebook Social Icon

(c) The Silent Bleed 2019

Registered as a Charity in England and Wales since 2016

Text reproduction and sharing

 

The reason we exist is to make our voices heard about superficial siderosis, so please feel free use the text on this site as you need to - all we ask is that you clearly mention us as the source and that you drop us a donation. Please ask permission to use photographs because many of them feature our members and it's only fair to ask them first. Many thanks.