Do not know what do to about a new drug I can't get funding for?

Do not know what do to about a new drug I can't get funding for?

I got offered a drug called biliexa I can't spell it right haha! My specialist said I would get it but now 6 months in they still can't get me it!! Iv been through so many drugs since November even ended up having 6 sessions of chemo that nearly killed me as it was to powerful for my body! In at the end of fighting and the worse but is now in so ill it's effecting my 3 amazing young children as I can't be there mum as Iv had it stripped from me!! I hate lupus!!!!!!! Any ideas would be great! We are looking at buying the drug now as if I went private I can have it next week !!!

This is me its all over my body and now loosing hair!! Anyone done any fundraising for money? I feel like Iv not got a right to do it as Iv only seen cancer patients do it?? I do not leave the house and Hardly no one knows how bad Iv got?

8 Replies

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  • Where are you? In the UK or the US?

    If you are in the UK it is more than just paying for the drug itself - you generally have to pay for everything, doctors appointments and all tests as well. It is a massive commitment.

  • Hay I'm in the uk? Yes we got the total tonight for equipment, bed rooms nurses the hole thing. Just do not now what to do?

  • If you can't afford it (I certainly couldn't and I suspect I'm rather better off than you) then you have little choice really. I'm afraid that, unless your doctors can either appeal the decision or find a trial, you probably have to accept it for now at least. I assume it is Benlysta so I doubt there are any trials now. It has been approved by NICE for NHS use for certain patients - so I also assume you simply don't fit the criteria.

    Unfortunately the NHS is breaking down under the cost of all the new and very expensive drugs people expect to be able to have - and whatever the brexiteers told us, there is not 350 million a week/month (can't remember what they claimed now, it was totally unrealistic anyway) floating around free for use. That was spent several times over. And the really bad news will be that there will be less money available as grants for research - a lot came from the EU in collaborative studies.

  • Hi I'm the same my body is covered. I get frustrated as I can't do the things I use to with my kids . I've been told my face has been scarred as they can't get it under control .I'm on methotrexate injection which is causing problems with my legs and I don't think it's helping .lupus doesn't just affect you its the whole family .my children get upset when I can't go out & enjoy the sunshine like we us to .I hope you find a way of getting new drug can you appeal against there dission ?x

  • Poor, poor you. I don't know how old your children are but, when mine were younger, I involved the health visitor who sent a play therapist once a week. I certainly think you need some help. With regard to your proposed treatment, have you written a letter (or several) to your MP? Certainly worth a try.

    I'm so sorry that you're experiencing this. If you were local to me, I would be happy to help out with your children - I have 3 too. It isn't easy be mum when feeling so ghastly and the summer hols are very long. So sorry that I can't be more constructive but hugs coming your way xx

  • Today we have been turned away for the 7 th time in 6 weeks now. My family are now going to pay for the treatment! My Dr has tryed so many drugs on me now , he feels this is the one for me as I need to reduce the steroids I'm on and have been non stop for 5 years! He still wants to try and fight for me which is amazing I'm blessed with such a good specialist who no is Prof Edwards I'm based at Southampton hospital. Thank you for replying means a lot xx

  • Iv also signed up for trails as they say I'm non text book! So I'm going to through myself into anything to try and help in any way

  • I am so sorry LillyAlfie. Getting your MP involved may be one way ahead. I am so glad to hear you have a supporting family. I do know of people who have self fund raised for their children successfully. Would it matter if you lived in a different postcode area. Sorry I am probably repeating what you already know. I wish you all the best, you are a very brave person and a deeply caring mother.

    Peace & Love Pixiewixie

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