Thursday, 16 May 2013

Private prescriptions within the NHS

"Our post on 'Topping-up the NHS with private prescribing' has generated a healthy debate. In response to a query yesterday I thought I would highlight an example of private prescribing within the NHS in relation to the management of MS."

"Despite a European license, and the dramatic examples below, the NHS Commissioning Board have decided that we can't prescribe Fampridine to MSers as it is not cost-effective; i.e. the NHS simply won't pay for the drug. The following is their policy document that was recently published."



"The following are two YouTube videos of MSers who have responded to Fampridine."





"In response to this Biogen-Idec, the company who markets the drug in the UK, have launched a private patient responder identification scheme. This allows MSers to receive free drug for a month to see if they respond or not. If they respond they  then have to pick-up the bill for any future prescriptions. Before receiving a free trial of the drug they have to sign a consent form and agree to the points below."

In signing this form, I understand/acknowledge that:


  1. I will be initially prescribed and supplied with up to 4 weeks of Fampridine, during which my response to treatment will be assessed.
  2. Fampridine (including delivery) will be provided free of charge by Biogen-Idec for the initial treatment period (up to 4 weeks), and that I will be responsible for any additional costs imposed by local groups/bodies (such as, but not limited to; dispensing fees, tariffs, duties, etc.).
  3. Should I not respond to Fampridine, treatment will be discontinued.
  4. Should I respond to Fampridine and wish to continue with therapy after the initial treatment period (up to 4 weeks), I understand that, as a private patient, this will be by private prescription for which I will be required to pay.
  5. Biogen-Idec has no involvement in, or funding responsibilities beyond, the supply of Fampridine during the initial treatment period (up to 4 weeks).
  6. My physician has explained this process to me and I have had the opportunity to have any questions answered fully.
  7. I agree that my personal details can be shared with the homecare delivery company for the purpose of supplying Fampridine.



"I have only had one person in my clinic sign-up to this scheme via one of our specialist nurses. It seems from the response to the 'Topping-up the NHS with private prescribing' post that a lot of you think schemes like this are unethical and against the ethos of the NHS. I am not convinced this scheme is unethical, but it is clearly against the ethos of the NHS (free healthcare at point of access). If the NHS is rationing care based on cost-containment why shouldn't individuals who can afford to pay for private prescriptions have the option of a trial of a licensed therapy? We live in a modern democracy that values individual choice; this would be an individual choice. We also mustn't forget that Fampridine is a licensed therapy; MSers in other European countries have access to this drug. I wonder what the European Court of Justice would have to say on the position the NHS Commissioners' have taken on Fampridine? Is the NHS undermining the European experiment? Is it ethical for other European MSers to have access to Fampridine and not UK MSers?"

"If you disagree, or agree, please feel free to join the debate by completing the following survey."



CoImultiple

29 comments:

  1. Prof G, thank you for raising this issue. Are you sure other people with MS in Europe can get Fampridine? If this is the case can we challenge the NHS legally? This is something you need to take up on our behalf. I am desperate for a trial of Fampridine; anything to make my life more tolerable would be appreciated.

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  2. Hmm, the analogy of drug dealers getting people hooked on meds and then jacking up the prices comes to mind. Don Giovannoni may regard Biogen-Idec’s actions as an act of pharmaceutical altruism, but the truth is that it’s just a way to bypass normal practices and tap into a lucrative market that will further enhance domestic profits.

    I honestly think that the vast majority of British people will abhor Giovannoni’s suggestion that those that can afford to pay to access unapproved medicines shouldn’t be begrudged or deprived. After all, it’s not an individual’s fault if they’re born prosperous. Giovannoni perhaps has private health care for his own family, and may even believe in sending his children to private schools, but we cannot ignore the fact that most people, especially those with disabling illnesses, will not be in a position to afford such drugs. We have our own culture in Britain and equal access to medication is tantamount to our character. It will be a sad day when those in compromised positions have to go further into debt to pay for not very efficacious treatments.

    Fampradine works in less than half the people taking it and we are unaware of long term effects of a drug that puts greater burdens on an already damaged nervous system. In fact, we still don’t even really know how fampradine actually works. In that sense it’s playing Russian roulette; as are all drugs targeted at treating MS.

    Don Giovannoni is wrong in suggesting those that can pay for life-changing drugs should be able to do exactly that. Giovannoni argues that there already exits a cure to MS which, when given early and aggressively enough, will provide a panacea to the disease. This is the Holy Grail for any MSer, and they will understandably sell everything they own to get hold of this wonder drug before their window of opportunity closes. But the majority of MSers are not able to fund such a thing. However, there will be a small minority of rich families that can pay over the odds. Are these rich peoples’ healths more worthy than anyone else’s? No, right? Therefore, just say no to Don Giovannoni proposition.

    ReplyDelete
    Replies
    1. Re "Don Giovannoni". Let's try to keep it adult shall we, rather than resorting to racial stereotyping?

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    2. Re: "Don Giovannoni is wrong in suggesting those that can pay for life-changing drugs should be able to do exactly that. Giovannoni argues that there already exits a cure to MS which, when given early and aggressively enough, will provide a panacea to the disease."

      This is not my suggestion, but an MSer who attended the MS Frontiers Meeting (you should read the previous post). I don't agree with what is happening. I don't support a 2-tiered NHS; unfortunately it has crept in under the radar. All I am doing is making you aware of the issue.

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    3. http://multiple-sclerosis-research.blogspot.co.uk/2013/05/topping-up-nhs-with-private-prescribing.html

      "At the MS Frontiers meeting, last week, one of the MSers dropped a bombshell in a trial meeting we had. He believes that if MSers want access to new and expensive DMTs and they don’t fulfill NICE guidance for these treatments then they should pay for these treatments privately. If they can’t afford them then it is simply bad luck. He highlighted that the rationing that occurs in the NHS is denying some MSers access to drugs they need and should get."

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    4. Dr Dre you should retract your allegations; they are inaccurate and simply wrong.

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    5. Ditto. Dr Dre seems to have a problem with comprehension. Could this be MS-related cognitive impairment? May be an effective DMT will prevent this getting worse. But then may be not.

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    6. It is wrong to suggest "Those that can pay for life-changing drugs should be able to do exactly that".

      If MSers were not willing to do this, surely then there would not have been thousands of people following CCSVI and shelling out their hard earned cash

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    7. Dr Dre,

      The amount of money in the NHS pot is finite. People are living longer, more drugs are coming to market, diagnosis is getting better and better. You are deluding yourself if you really do think that the NHS can support everyone with everything they need. A two tier system is going to evolve BUT a way of preserving the NHS for emergency treatment and basic support is essential

      Patrick

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  3. I'll have you know that 'Don' is an honorific title. I'm trying to be respectful in my criticisms of Prof G's opinions, hence why I use it.

    I just get attacked on this blog all the time.

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    Replies
    1. Perhaps it was the lazy way you linked Don with your drug dealer analogy.
      No use trying to wriggle out of it, the meaning was clear.
      If you are attacked for your assertions, it is with good reason, though you do leaven your diatribes with some nuggets of good sense. less of the former and more of the latter please!

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  4. Maybe Dr. Dre thinks Dr. Giovannoni's first name is Donald.

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  5. Why can't someone who can afford a drug not be able to access it just because the NHS can't afford to pay for it? Dr. Dre reckons it's because they've been born with lots of money, but a lot of people work hard to earn their money, and it is up to them to choose how to spend it. After all, they have already paid their taxes to fund the NHS, and are willing to pay extra for the treatment that would be beneficial to them. In the majority of cases, NICE is saying we can't afford to pay for the drug as its not beneficial enough. It's unfortunate but the NHS can't afford to pay for all the new expensive drugs and procedures that have evolved since its inception, when most people died within 5-10 years of retiring. Unless the country decides to increase taxes to increase funding to the NHS, its a fact of life that NICE will not fund some drugs. The NHS ethos is part of our character, but so is the right to free will, and I should not be told that I can't spend my money on a licensed drug just because someone else can't afford it

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    Replies
    1. I am sure that you work very hard for your money, and may even have gone to university and stuff to better your economic chances in life.

      However, what makes your MS more worthy a case than someone else’s? Why do you deserve to be cured rather than some poor bloke with the same disease living in a council tenement in Glasgow? Is it purely because you can afford it? Where is the ethicality in that? It’s not fair.

      Yes, if these drugs actually do allegedly cure MS, in some cases of course, then BIG PHARMA should reduce its costs, but I guess capitalism doesn’t work that way. One has such a short window in which to actually beat MS that I guess most of the blog readers here will have missed the boat thanks to price fixing and government indecision; though I think the argument for early aggressive treatment is tenuous at best. One still witnesses MSers treated with Campath 1-H become secondary progressive. It happens more often than this blog lets on.

      It is mine and yours societal responsibility to pay our taxes. We must never complain about it.We pay for equal services and maintenance. Britain must never allow for a two-tier health system. Our collective salvation depends on it.

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  6. I think if the NHS (I assume this is equivalent to the FDA) approves a drug for MS it should be based on the efficacy of the drug and not whether or not they can afford to provide it to people. If drugs are becoming too expensive there should be an upper limit on how much a drug company can charge and they should be made aware of this before developing the drug.

    Does it really make sense that BG-12 which is based on a currently available drug for another condition should cost $50,000/year?

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    Replies
    1. No it doesn't (unless your primary motive is maximising profit).

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  7. I totally agree with anon 3.40. Dr Dre, your argument is totally unsound. Somebody could choose to fund their own drugs by reducing the cost of other areas of their lifestyle eg holidays or the area they live in. If someone is able to gain or remain in employment because of improvements brought by the drug, surely that validates it? By people self funding, they are also adding to the weight of knowledge about the drug and its use.

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    1. I the scenario you talk about is very differnt from the point I am now making but in terms of knowledge creation it helps if there is someone collecting the information....

      30,000 plus people had the CCSVI treatment...based on trial on a few people costing loads it may be a bust. If data had been collected in a rigourous way then we would be a lot wiser and many people would have disposable income.

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    2. There would not be anything like that amount of people going for CCSVI if there was a licensed treatment for SPMS. Until then, people will buy snake oil.

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    3. The cost for many drugs is HIGHER than CCSVI . Example baclofen pump costs the NHS 8,000 pounds CCSVI approx. cost is 500 pounds only the whole lot going on is disturbing with 100s of thousands involved with the pharmas

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    4. Sorry to use the 5 letter word tody, its like blood to a shark

      as a result I have been using some choice 4 letter words..:-)

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  8. Dr. Dre talked about the number of MSers becoming SPMS who've been treated with alemtuzumab. I've not seen any report on this yet, although Dr. Coles did talk about producing something on this a few months ago. Did I miss it, or has it not been produced? And where did Dr. Dre get his information from?

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    1. Dr Dre, is as usual, partially correct. The article (link below) shows that SPMS patients treated with alemtuzumab continue to progress (despite no new lesion formation) in contrasted to RRMS patients who in contrast showed improvements in disability. It shows if your going to treat with alemtuzumab it has to be done early as later in the disease (as we've shown in our mice) a neurodegenerative csacade has built up that is resistant to anti-inflammatories. Here is where we need neuroprotective therapy.

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    2. Thanks, MD 2- what's the link?

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  9. Do you know whether it is safe to take Fampyra on a long term basis, or what the effects are?
    Thanks as always

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    Replies
    1. I do not know.
      There is no evidence that it not safe in the long term. Prof G will know more...as ever.

      I suspect that Biogen will not monitor the effect of long-term treatment as they see it as an anti-symptomatic

      It should allows nerves to work harder so improves function, is this good?

      I would like to know if balcofen has long-term benefits. I can construct an argument, how it could be beneficial for progression, but I bet the information cannot be found.

      OK you may say there are people on baclofen that progress but if they did not have it would the progression be faster is what I would like to know.

      With a register and database following ever MSer this information could be available at the touch of the button. Maybe the Canadians could do this. I guess the problem would be controlling maybe hard to get people with spasticity not on treatment.

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  10. 4-Aminopyridine - Wikipedia, the free encyclopedia



    en.wikipedia.org/wiki/4-Aminopyridine‎







    4-Aminopyridine (INN fampridine, USAN dalfampridine) is an organic compound with the ... It causes convulsions and typically death, depending on dosage.

    ReplyDelete
    Replies
    1. Tooth paste could kill you if you take enough of it, too much water is bad too the wiki post was about use as a pesticide.

      All drugs have side effects

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