When NICE Gets Nasty: NHS Rejections

This is part news, part rant. Part fact, part opinion. Sometimes it just gets so under my skin and I find it painfully sad how a certain few hold all the cards as to who gets what healthcare and treatment. It seems insanely unfair.

Ketamine-Like Nasal Spray : Rejected For NHS Use

I’ve read of others bloggers trying, or hoping to try, Ketamine for depression. Those with medication-resistant depression are low on options and something like this may just hold a little hope. However, this ‘Ketamine-like’ nasal spray – esketamine – has been rejected for NHS use by NICE, as they’ve said they don’t consider it ‘cost -effective’.

You can read more here.

Cancer Drug : Rejected For NHS Use

Another drug, poised to give hope to many, has been rejected for use on the NHS. Larotrectinib has already shown beneficial results in use in the US for over a year, and it’s been in use since September in Europe. But not the UK. The £15,000 a month price-tag for a revolutionary medicine that, during trials, tumours had responded in between 2/3 to 3/4 of the cases tested and even disappeared totally in some instances. All too often it seems money & red tape come before patients. Disgraceful. And shame on you, NICE. What’s happening to our NHS? 

A chemical structure diagram of Larotrectinib.
Larotrectinib chemical structure; image from Wikimedia Commons

We know prices are extortionate for medicines. I’m not sure why more hasn’t been done to negotiate and work around the issue. Who gets to decide what’s covered and what’s what? A bunch of people in a boardroom. Of course we see on the news about those who perhaps shouldn’t be eligible or treatment that perhaps isn’t a medical requirement, being done, which only serves to anger us even more.

If you take a step back and realise that we’re all just humans put on the planet with no titles or authority, it makes it all the more sick. What right do they, does anyone, have to deny care and treatment to others? They should all be ashamed of themselves, those few pulling the strings and taking away hope, quality of life and even life itself.

You can read more here.

Another cancer drug is the immunotherapy treatment Pembrolizumab (brand name Keytruda) for untreated metastatic or unresectable recurrent head & neck squamous cell carcinoma (referred to as HNSCC). Originally given the go-ahead, NICE has now issued guidance against its use and has requested more information on its benefits and cost-effective evidence.

You can read more here.

Migriane Drug : Rejected For NHS Use

See a theme here? In the same ‘vein’ (excuse the pun) the drug many of us chronic migraine sufferers have been keeping our fingers crossed for has been rejected for NHS use. Despite the fights to get it approved and the petitions that have been signed, the injectable erenumab (brand name Aimovig) has been turned down by NICE, the drugs watchdog that sadly seems rather keen on keeping drugs off the NHS treatment list on the grounds of price.

A close-up photo of the Aimovig-branded injection.
Aimovig injector; image from Wikimedia Commons

This ‘life-changing’ drug has had some very positive responses thus far elsewhere, including from some fellow bloggers in the US. It was given a European licence for use in July 2018 and it’s the first migraine medication in 20 that could have come out to give patients some home of relief. It’s a monthly injection with a £5,000 per year price tag, though a ‘confidential NHS discount’ is taken off this amount. NICE say it’s not cost-effective. Scotland was given the go-ahead but it’s not going to be available in England and Wales. Obviously the cost of the drug can’t outweigh the relief thousands of patients may benefit from, the lives improved and even saved from the nightmare of chronic migraines. 

It’s frustrating and it’s disheartening.

You can read more here.

 ♥

On and On…

This list could go on indefinitely. So many medications for everything from migraines to cancer. We know NICE, the NHS watchdog, have an important role to play. We know too many medications are overpriced. We wonder why more isn’t done to regulate prices and negotiate. We know NICE need to protect patients and ensure something is safe and effective before it’s deployed. Sometimes they do a good job, and it can’t be an easy job.

But when we see, hear and read the reports of patients benefiting from treatments that have been given the go-ahead elsewhere only to be rejected in England, we wonder why NICE are being so nasty. Meanwhile, we also read the reports of products following complaints and investigations still being available. The same goes for devices that are regulated by MHRA (Medicines and Healthcare products Regulatory Agency). Why are seemingly questionable products still available, but those products or medicines that many had hoped to try – the ones that could bring relief, quality of life or even be potentially life-saving – being rejected? Some patients or parents of poorly children will use their savings or have to crowdfund money to seek treatment privately abroad.

As understandable as the need to stick to a budget is, it’s just not that straightforward. There’s so much waste in the NHS, so many decisions that seem illogical and poorly thought through, too many things that aren’t how they should be for us to say it’s run as effectively and efficiently as possible. To many, it seems like a lack of common sense in various areas, not to mention a lack of consideration for long term implications. I don’t know if long term outcomes (ie. patients using or not using a certain drug) are factored in to the cost-effective calculations on these sorts of medications but I would doubt it.

Even when a product is given the green light it’s not always too straightforward. The case of medicinal cannabis is one such example. After much media attention and petitions, with the case of an epileptic child in particular making headlines, it was decided that it could be made legal and prescribed on the NHS, but it’s only to some and only in certain circumstances, and such restrictive criteria means very few seem to be able to access it.

What can we do? Media outcry, sharing these stories, sharing your own stories, signing online petitions. It may not seem like much but it’s how some change has, on occasion, been driven.

Sadly so much comes down to money. Profits over people. The bottom line over healthcare. A healthcare system that taxpayers pay into. Who pulls the strings and gets to decide what we can or cannot have access to? Who decides who gets to continue to suffer or miss out on the chance of a brighter future?

Who decides what lives get left behind?

Have you been affected by decisions like these, perhaps having hoped you’d be able to try something only to find it has been rejected for NHS use?

Caz  ♥

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40 Comments

  1. February 16, 2020 / 4:41 pm

    I think the more time passes, so the more the NHS seem to be squeezed as to what can and can’t be funded. Just my opinion, but I feel we are headed for a more American style health service, which personally, I hope never happens.

  2. Ashley
    February 16, 2020 / 4:45 pm

    I think part of the problem when they make these decisions is that they’re not taking into account the costs that arise from people only having access to inadequate treatments.

  3. February 16, 2020 / 5:00 pm

    Sadly so much comes down to money. Profits over people.

    You got it exactly right and that shameful to be sure. Thanks for sharing this.

  4. February 16, 2020 / 5:11 pm

    I saw the film (DVD) The Dallas Buyers Club last night, based on a true story in which the American drug authority withheld drugs to treat AIDS, while testing was allowing people to die – leading to people clubbing together to buy their own drugs. Its an interesting a moving story.

    Have you heard about the crisis for epileptic children here in the UK? Its heartbreaking, and has been going on for years! https://mental-health-headlines.co.uk/2019/12/07/mother-of-two-epileptic-children-begs-for-medical-cannabis-to-save-both-their-lives/

  5. Linda
    February 16, 2020 / 6:49 pm

    Have you looked into any cost-reduction programs through the drug manufacturer for Aimovig? Here in the US the company is offering it up as a promotion with a $5 deductible. But I think you have to have private insurance for them to give you the deal. I actually think they are just using us as guinea pigs in a human trial but I don’t care! As long as I take the highest dosage, I’m golden. I’m not sure if you can pull this up there but try this site: https://www.aimovig.com/paying-for-aimovig/

  6. February 16, 2020 / 7:01 pm

    One of my children has a life limiting disease and there has been a drug available for many years which could both lengthen her life and help to improve her symptoms, meaning far less hospital admissions and a much slower rate of decline in her health. But, you’ve guessed it, it was too expensive for the NHS to prescribe. But after many years of negotiation, the NHS managed to do a deal with the pharmaceutical company to get the drug at a reduced cost. My daughter was finally allowed to start it a couple of weeks ago and it has been like a miracle, seeing her improve. Unfortunately, during those years of negotiation, many young lives have been lost, and those that remain will get a lower benefit from taking the drug, due to damage already incurred by disease. Although, knowing how much this drug costs, I’m really amazed that the NHS allowed it to be prescribed. The cost is 100 THOUSAND pounds a year per patient! It’s awful that lives and health are dictated by money, rather than need.

    • February 18, 2020 / 4:18 pm

      That is awful, to spend so many years without until they could ‘negotiate’ the cost, not thinking what happens to the patients who NEED that medication in that time. I’m so angered for you, for your daughter, for those who have suffered before it was green lighted, at the whole situation. It’s good it was finally given the go ahead but it obviously should have been sooner. I really, truly do hope she continues to show improvements. Thank you for sharing this. Sending love to you all  ♥ xx

      • February 18, 2020 / 4:45 pm

        There is an even better drug out there, which has been nothing short of a miracle for patients in the U.S., turning back the clock on the condition, rather than just slowing it down. But guess what, the NHS won’t fund it due to cost again. I suppose it will be many more years of negotiation between the NHS and the greedy pharmaceutical company before that is available too, leading to the inevitable deaths of patients in the meantime.

  7. February 16, 2020 / 7:03 pm

    You’ve just taken the words out of my moth Caz — I was about to post about my recent appointment with my Consultants SpR. I mentioned medical cannabis as I have used it in Spain and it’s is great for pain relief. I have a disorder called Transverse Myelitis (like a sister of MS but my lesions are only in my spine, not in the brain).

    She said that people who have chronic spasms are now being prescribed the cannabis but people like myself in constant pains that are indescribable to the layman, will not have access to cannabis. My spasms are not bad enough.

    Like you say, it all goes down to costs. And where the heck do these massive pharmaceutical companies get the prices from? It cannot possibly cost £500+ a week for medical cannabis. I can buy it off the streets (if I was so inclined – I’m not, cos I’m a coward) for around £50.

    To put costs before people is a huge no-no and I wonder how these pen pushers sleep at night!

    • February 16, 2020 / 7:03 pm

      Lol — out of my mouth 😉

      • February 18, 2020 / 4:58 pm

        I’m so sorry, it’s beyond ridiculous and unfair and I’m so angry for you. The whole thing is upside down. You’re right, you could (if so inclined – I’m with you though, not willing or prepared to do that!) buy actual cannabis; this comes around full circle then to the issue of legalisation. The taxman could make a nice sum if it were legalised and taxed, and those with chronic illnesses and chronic pain would have access. It irks me to see so many get away with smoking it because it supposedly looks ‘cool’ when those that need it can’t get it. Thank you for sharing your thoughts.xx

  8. February 16, 2020 / 7:15 pm

    Most disturbing of all is that there is no profit in a cure. 🙁 I get so angry dealing with insurance and drug companies about my own health, I honestly think I would have become homicidal if one of my children were being denied coverage. Many people don’t even think about these issues until they become too sick to fight. Great Post Caz! Ty for sharing

  9. February 16, 2020 / 8:18 pm

    it is absolutely disgusting but you are right, if companies can’t make tons of money, they won’t do it.

  10. February 16, 2020 / 11:06 pm

    It is a real shame Caz that health care is treated this way. Not much better in the USA.

  11. USFMAN
    February 17, 2020 / 2:19 am

    I wonder how much the government suppresses information about medical crises in our country. I use the Corona Virus as an example where the people in China and U.S. are not being told the true extent of the epidemic. Does the U.S. government even care to serve us healthy information. Are they bought out by corporate lobbies? Maybe a Bernie Sanders vote is the best answer.

    of the Corona Virus

  12. February 17, 2020 / 9:30 am

    Sadly these days it really is profits over people, as you say…

  13. February 17, 2020 / 11:45 am

    This problem will never go away as long as profits are chosen over people.

  14. February 17, 2020 / 1:59 pm

    Caz, you know I was nodding along with every word! Unfortunately, things go so far that they won’t even recognize the existence of certain conditions so they don’t have to treat it. I know people in the UK who have to spend an outrageous amount of money to go to France to be treated for craniocervical junction disorders, for example. In the US, we can be treated, but it’s usually not covered by insurance, as only a handful of doctors treat it and most won’t even mess with insurance because they don’t have to. They are in high demand regardless. Even when they do take insurance, the travel expenses to get to them is beyond many of us. I haven’t even been able to obtain a diagnosis and would have to go to Boston or Jacksonville. I really want to see socialized medicine come to the US, but I know in my heart of hearts they wouldn’t do it right. They only want to support the average person and do their best to completely ignore those of us in the “rare” categories. I feel strongly its part of the reason they don’t train doctors to recognize rare conditions. So long as they are considering profit over people, they will never do right by us. It’s frustrating and downright heartbreaking. These things should be decided by doctors and patient advocates, not boards! Great post, Caz. Thanks for bringing awareness to these issues.

  15. February 17, 2020 / 4:31 pm

    I totally agree with John Rieber’s comment here, you make some very good points, but I don’t think anything will be fixed in the near future and in the meantime we have to live with what is. Thanks for bringing this topic to the forefront.

  16. February 17, 2020 / 7:31 pm

    It’s such a shame that so much is refused on the NHS. I get that it’s all profit-focused but lives depend on this treatment and medication. Just like most things in this world, we are dictated by money. xx

  17. February 17, 2020 / 8:32 pm

    Truly sad state of affairs indeed ,hope by sharing posts like these and bringing to notice some changes for good happens.

  18. February 18, 2020 / 12:19 am

    It seems that whether it’s the government making the decisions or the insurance companies, the driving force is purely the cost, and not the ability to treat sick people. It’s so sad…

  19. February 18, 2020 / 12:22 am

    So sad that profit dictates decision… Good for you for highlighting this problem i hope in the future changes will come… X

  20. February 18, 2020 / 3:42 am

    Its quite sad isn’t it. Here in Australia the drug Affintor – which is a cancer drug is now on the PBS Pharmaceutical Benefits Scheme. Its used for the rare disease I have Tuberous Sclerosis for the internal tumors and also the external ones.. also used for seizures. I hear so many times that people in UK are being denied this amazing drug. Even in the states are having trouble with it.

    • February 18, 2020 / 5:20 pm

      I’m glad you’re able to get Affintor. As it’s available via the PBS, does that mean technically all residents could access it on prescription? I really, truly do hope it’s helpful for you. When something is shown to be effective and often like this can have more than one use it’s insanely angering that people can’t access it. So very, very sad. Who ever gave these select few people the authority to make such decisions? Thank you for sharing this, Bree. xx

  21. February 18, 2020 / 5:48 pm

    I am so with you on this rant. There are treatments for my condition (Spinal Muscular Atrophy) which are near on impossible to get. Spinraza is one that has been used in various countries for a few years, yet NICE have only recently passed. Still though there are so many restrictions and criteria to meet that majority of people won’t get the treatment that could potentially stop deterioration and prolong life. Another is Risdiplam, currently in early stages. However if this drug was provided sooner it would most definitely save and prolong lives, but also maintain health, so that in the long run with both drugs the NHS are saving money and resources.

  22. February 18, 2020 / 11:43 pm

    It’s interesting to see what’s denied in the UK 🆚 the US. My husband suffers from migraines and can’t take the one our insurance covers with a copay cost because his blood pressure is too high for it. Their solution is to not cover any of the other medicines that work and charge him out of pocket prices. It’s absolutely bonkers.

  23. February 19, 2020 / 1:28 am

    My doctor wants me to go on a certain drug for pain, but to get the province to cover it, i have to try 3 other drugs first, which means I’ve been taking useless meds for months.

    • February 19, 2020 / 6:14 pm

      Jeeees, that’s utterly stupid. Waste of time for you, and a waste of money in general. How ridiculous. I’m sorry you’re having to go through months of this in the hopes of trying the actual medication you need to get to. Talk about jumping through hoops… x

  24. February 19, 2020 / 4:10 am

    Lulu: “It’s a shame that people have to suffer and be denied medication just because of green papers.”
    Charlee: “Yeah, when we cats and dogs take over the world, we will put a stop to that sort of thing!”
    Chaplin: “Shhh, don’t let them know we’re planning to take over the world. We’re not ready yet.”

  25. luisa
    February 19, 2020 / 1:36 pm

    Interesting post

  26. February 19, 2020 / 5:50 pm

    Profits over people is the perfect way to describe what’s happening. This is one of those topics that makes me so bloody angry my blood can be heard boiling. Health care, in my humble opinion, should never be a luxury. It should be a right of all human beings to have access to quality medical care without fear of losing everything they have.

    I’ve been on the receiving end of this mentality here in America and trauma is the only word I can use to describe the experience. They didn’t care about me then and they don’t now. I pray to God the medical care in UK never hits the lows seen here in the USA for people who can’t afford the ‘best of the best.’

    I second your rant, wholeheartedly. I’m so sorry this crap is being played out there too. So many lives that could be forever changed for the better…. (sigh) It’s infuriating!

    ~ Holly xoxo ♥

  27. February 19, 2020 / 6:11 pm

    Great points here. Just a note to add on not quite the same theme — When I had breast cancer, I found it imperative to have doctors who I could communicate with & trust (as well as their staffs). With gentle persistence, I was able to get them to fight to get me certain tests & procedures that I would not have otherwise gotten.

  28. February 19, 2020 / 7:08 pm

    Sending hugs and sunshine…

  29. February 20, 2020 / 10:02 am

    Wow. I guess there are too many cooks in the kitchen. You know I’ve been frustrated as many of, strike that… I no longer have access to pain medication. This is why I am replying to you at 4am. Painsomnia is real! I haven’t slept a full night in I don’t know how many months, yep, months.

    Why we blindly follow those who do not know pain, nor have witnessed it? I have no idea. Petition signing, emails, and following those groups that go to the government meetings to support us is definitely a way to participate. Do it!

  30. February 20, 2020 / 2:03 pm

    It feels so wrong. People are crying out for treatment and cures for their health conditions and so often, they’re not getting them because governments deem them too expensive. The message is, ‘sick people aren’t worth it.’ It’s so sad.

  31. February 21, 2020 / 8:09 am

    The US is just as bad, with si many who can’t even get insurance so they can’t afford these medications even if they are prescribed. Heck the can’t afford to go to the doctor in the first place. In my opinion Aimovig is not that expensive, and insurance companies, and I’m sure the NHS, get a sizable discount. They had a TV segment last week about the under funding of migraine research…ect. even though it is the 2nd most debilitating disorder. The biggest reason they found was because it’s a disease that affects mostly women. They interviewed a number of doctors and researchers, and that’s what they said, because it affects mostly women.
    No matter the reasons there is no excuse for letting people suffer

  32. February 21, 2020 / 1:08 pm

    It’s so disappointing to hear about medications that are rejected by NICE despite the positive results they’ve had in other countries. I do agree it is about making money, but it shouldn’t be when there are life-changing drugs out there that could help so many people.

  33. February 25, 2020 / 12:43 pm

    I’m glad you’ve brought this up. It’s a frustrating problem for so many of us who have lifelong conditions! I’ve had to argue the toss sometimes with my doctors to give me access to my medication because even though it’s approved it’s on a restricted list. So annoying and a lot of it is totally based around money! xx

  34. Bingingonabudget
    March 4, 2020 / 3:28 pm

    Great post, that’s crazy how many of these medicines have been rejected. My aunt also suffers from migraines and they are definitely dehabilitating. Thanks for sharing and spreading awareness.

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