PBC and free prescriptions

Hi everyone. My second post in as many days!

I was just wondering if anyone knows why people diagnosed with a condition like pbc etc, that has no cure and requires indefinite medication are not eligible for free prescriptions like those with type 2 diabetes and other long term health issues.

I feel strongly that we should qualify as we often have to take other medication as a result of our pbc and the cost really mounts up. Any thoughts?

22 Replies

  • Hello nazgoodard.

    Well what can I say? We are not eligible for free prescriptions and as you say it is something we are stuck with this PBC.

    I think it is because as silly as it sounds urso isn't said to cure PBC and it is a bit of a grey area. (I only take urso.)

    I pay for prescriptions, always have and don't think it fair. I do think that urso should be free.

    The thing is with the urso as already said, there's no way of knowing really if the urso is making a huge difference, it is said to stop having an affect with some with PBC and though it isn't said, has made me wonder at times if some of us might never progress further than a certain stage if we did live day to day without the urso. I can't say for sure, I've been on the urso since diagnosis December 2010.

    There is the Prescription Coalition Group think it is called. I did once fill out their survey, sent their letter templates to MPs and received replies back. As yet it doesn't seem an option that some conditions will be reviewed and certain medications added to the list and deemed free.

  • Thank you . I Google them

  • I completely agree! I am 28 and will be on urso for many years (it seems) and the consultants are using me as a test case because I'm so young so are planning on putting me on a variety of medication... I asked about it because even my friends who have thyroid issues get their meds free and they have been told by the doctor that there issue has been resolved... bit baffled to say the least!

  • If you are in England and get more than one item of medication a month you can save money by buying a prescription prepayment certificate.

  • nazgoddard. I agree about us have to pay for this expensive Ursotan (that is what the name is in South Africa) I took it up with the Medical Aid, but they refused. I am a pensioner, and together with all the Vitamins it adds up to quite an amount, but there is no other way.

  • Iam over 60 so don't pay now, but I agree other chronic diseases get free prescriptions.

    In all the years inhad to pay I could only get a month supply at a time, now I don't pay I get enough to last about 2 1/2 months. I never asked for a change it was the doctor that increased the amount , it was only when I seemed to be overrun with boxes that I realised more had been issued.. has something changed that allows them to prescribe more at a time or is it just that I don't pay now. Is it worth asking for more than months at a time.

  • There is a very short list of chronic conditions that qualify for free prescriptions and unfortunately PBC isn't on it. I have an under active thyroid and because of that can get free prescriptions. I agree it doesn't make sense, why for one and not the other? On the other hand I'm sure the way that NHS (in the U.K.) funding cuts are going the whole process will be revisited soon ....

  • I live in Scotland so do get free prescriptions. Before that I used to pay annually which saved a good bit. I get 3 monthly prescriptions for all drugs associated with PBC, Asthma and Sjorgens. However I do believe that everyone with a Chronic Illness should have free prescriptions wherever they live.🙂

  • Hello June9961.

    I actually emailed my MP a couple months ago to ask why Wales and Scotland can get free prescriptions and not England. I think I already knew the answer but got the reply anyway in a different sort of way! I don't believe it is wholly true the brief explanation why England residents do not get free prescriptions but that is how it is currently.

    I've never received free prescriptions except when pregnant back in the late 1980s but back then I didn't want any meds due to being pregnant and didn't either. (Nor just afterwards as I think it was for 12mths following the birth.)

    I had to fight with my GP to get a prescription reinstated for 90 days due to the fact I stated that I was paying for them and in my mind, should not have to run about to acquire. If I was receiving them free I think I'd not have bothered. I only receive the urso.

    The list that gives free prescriptions for certain conditions to me is a bit of a grey area. Granted we are not going to be at the time in any immediate health situation if we do not have the urso daily (unlike an insulin-dependent diabetic like my son-in-law who was 14 when he acquired and his daughter was only 2 when she developed) but still, my opinion will always stand that if we didn't take the urso would we be more of a burden on what is said to be an over-worked NHS if we gain additional health problems sooner in the event we are. This is a big debate and as stated earlier a grey area.

  • I don't pay as I take thyroxine for under active thyroid but could it be because urso isn't necessarily for life.........some people aren't responsive to drug or if you have transplant you won't be on it anymore.

    Maybe something Robert at Pbc foundation knows more about 😊

  • I always get about 6 months worth of tablets on prescription from the consultant at my hospital appointments, only have to pay for the prescription 2x a year.

  • I'm seeing mine next week and i think i will ask him to do the same.

  • Luckily I live in Scotland and here prescriptions for all are free are free

  • Thank you for all your comments. I now understand. I suppose its the same for people who take aspirin daily for heart conditions. Thank you . Very helpful.

  • I agree wiyh you but only meds that would kill you if you didnt take them are free.

    I suppose its choices if we all.got free prescriptions there may be less gps or ambulances!!!!

    Not saying its right but thats the way it is.

    Besr bet as said in previous post yearly prepayment 10.40 per month but that covers all prescritions so it usually works out a lot cheaper


  • Here in northern ireland all prescriptions are free for all age groups.

  • I work in a pharmacy , and my boss (the pharmacist) believes the reason we are not on the list for free Meds is due to the fact that it is not proved that without urso our lives are at risk where as with diabetes and thyroid the medication is life saving . I agree totally that we should be on the list I use many emollients also have vital D and calcium deficiency and mild asthmaand acid reflux , I have a pre-payment certificate as this saves me a fortune, u can request more than one months supply especially if yr only on 1 med ie urso and will only pay 1 charge as regardless of how many u get of the same item it's just 1 charge . Hope that helps .

  • If you have the under active thyroid you get free prescription, which i have along with PBC all my medication is free

  • it's something you could always write your congressman about... :)

  • Hi very good question, but I don't have the answer either. My husband has asthma and has to pay for his prescription too. I have diabetes and underactive thyroid along with PBC, so I have medical exemption luckily I suppose.

    But some cancer patients have to pay too.


  • You need to have the pre paid prescription scheme it works out better for you I think it's 12.00 per mth.

  • Yes I think I will go for that. Thank you

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