Rituximab, I have been turned down for the funding for this drug again

I have two consultants, a Rheumatologist and a Respiratory Physician because I have Mixed Connective tissue disease with Interstitial Lung disease and all the other signs and symptoms that goes with lupus.

My consultants have tried four times for the funding for Rituximab but each time we have been told no. My lungs are getting worst and I have to use oxygen. I have been given every drug that's been given for lupus but unfortunately they have not worked for me.

I feel my only hope of getting this drug is to beg the money to pay as I am too ill to do any fund raising (if anyone knows of any charity that I could contact for help I would be very grateful).

If I cannot get this money from the IRF I will have to go TO my local MP and to the press but I really don't want to do this as I feel I would be blackmailing the (IFR) The Individual Funding Team into giving the funds for the drug. The IRF are saying my situation or disease is not rare and therefore doesn't deserve the opportunity to try this drug.

Sorry for the rant but I do feel I deserve the chance to try this drug. I was a nurse who worked for the NHS since I left school.

5 Replies

  • Hi just wanted to say that I am so sorry to hear of your struggles just to get treatment......I have to a much lesser extent been up against this myself. And it is SO hard to fight when we are feeling so very ill and in pain, and it seems we always have to fight-it is SO wrong. I truly hope you find a way. Good Luck x

  • Hi Maureen pearl

    I just want to say I cannot believe the cruelty of your situation. Can you appeal the IRF's decision ? Lupus is a rare illness so why they can't fund Rituximab for you I just don't know, begs belief!. Do whatever it takes to get the treatment, you owe it to yourself , going to your local paper could be very effective!. Best of luckX

  • Hi Misty,

    My consultant has appealed each time and this time I have tried to appeal and was told no because there wasn't enough patients in my area with this same condition for them to compare. I don't want to go to the press yet until I speak with my consultant. I am now trying to get an appointment to see my MP.

  • Hi Maureen

    Good luck when you see your MP. Keep us all posted. There has to be justice for you!X

  • this is so sad I think its time the NHS learnt to manage a budget and prioritise.

    Our PCT is now going in to a very costly debate about which of the trusts two hospitals should have certain services, the one hospital is old and made out of concrete blocks with metal rods through that are rotting and the other is new lots of land around it and was built to extend. The last debate lasted two years and cost a fortune and this one has been going for at least 6 months.

    The old hospital treats people who live over the border and never chase them up for the money the hole thing is a joke and then they refuse drugs to people like us.

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