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Just take a look at the above article.
Price of Drugs: dailymail.co.uk/news/articl... - Thyroid UK
Price of Drugs
41 Replies
•
Wow. I mean, it's not like we didn't know the prices were bonkers, but the idea that an individual is profiting so much from hawking much needed drugs is repugnant. And of course, we knew about Actavis... 
What on earth can we ever do about this mess? No wonder the NHS has no money...
• in reply toJazzw
Well this was written 5 years ago, I wonder how much the profits have increased by now? It's disgraceful, surely you would think someone within the NHS would be employed to make sure drugs were value for money, obviously not. In the meantime that odious person is laughing all the way to the bank. Yes so obvious why the NHS is in a mess, it's a bottom less pit for funding and no one is dealing with this.
gabkad• in reply to
The taxpayer's purse is like that fairy tale about the bottomless purse producing gold coins. Need more gold coins? Raise taxes. Until one day? Here in Canada it's the poor who fund the rich. So damn depressing to know that half the people in the city of Toronto are working only part time jobs with no security or benefits. And yet, it's these very people who pay the lion's share of taxes. I'm sure it's no different in the UK. And unlike the UK, prescription drug costs come out of the person's paycheque. No benefits? Too bad. It's all very well that doctor's appointments are covered by government insurance. But if the medications prescribed are out of pocket expense?
In the UK, unless you are on benefit or have certain diseases, you pay for your prescriptions, too. Most hypo people don't (if the GP will sign the form for myxodema), but asthmatics do, for example, even though it's a life-long condition that can kill you.
• in reply toAngel_of_the_North
Hi Angel, that's not strictly accurate. Unless your disease/illness is on their list, you still pay for prescriptions if you're on DLA, I guess the thinking behind it is that you are getting help to cover your costs by receiving DLA . I had 8 items a prescription including for an incurable bladder disease but still paid full costs for 11 years, despite not working and being on DLA. It wasn't until I got diagnosed with Hypothyroidism that I got free prescriptions. You don't get free dental work either on DLA.
gabkad• in reply to
Are statins covered by government or do patients pay out of pocket? Is 'high cholesterol' considered to be in the same category as hypothyroidism?
• in reply togabkad
The system here gabkad is that we pay national Insurance out of our wages when working, this goes towards healthcare. Each item on prescription is £8.05. You pay for your prescription for statins. GP's have a hard time with the connection of high cholesterol and being hypo. I was offered statins, but refused them when my cholesterol shot up 10 years ago, but my Tsh was at the bottom of the "normal" range. When I finally got diagnosed like most of us my cholesterol normalised.
gabkad• in reply to
it sounds like, if you pay a flat fee for prescriptions, that this is the prescribing fee and not also the cost of the drugs. Here the prescribing fee varies from one chain of pharmacies to another. I.e. can be anything between $7 - $14. The cost of the drugs depends on the drug. So the total would be 'prescribing fee' + 'drug cost'. It's the same deal as what people experience in the U.K. when a doctor won't put them on a 'named patient basis' for T3... price shock.
Over here if the employer does not provide healthcare insurance benefits (and the % of people with this is decreasing all the time.... ) the cost of any prescription medication is 100% borne by the patient. Fortunately medication like Eltroxin and Synthroid are not expensive but Cytomel is out of this world.
People who are disabled and on government plan and seniors have access to a list of drugs that are covered. Seniors, depending on income, have to pay $200 per year. If their income is below a cut off, then it's $0. But that's at poverty line. Cytomel is not covered. Lots of drugs are not covered. Of course statins are covered!! So are bisphosphonates for osteoporosis........but you know, regular Vitamin D blood tests are not covered until the horse has bolted, so to speak. It's like routine ophthalmological exams are not covered until you actually have a problem. Talk about stupid. vitamin B12 blood testing has now been removed from the laboratory requisition forms. If a doctor 'thinks' of ordering it, then it needs to be handwritten on the form. And they are told only to order it if the patient has evidence of megalobastic anemia or bilateral lack of sensation. Too late. I have never had folate tested. The justification for not testing, in general, is that doctors routinely advise their female patient of childbearing age to take the supplement.......as if........so there's an assumption. If someone is postmenopausal, then who cares what their folate is anyway. Meantime Health Canada's messaging is 'most people do not require vitamin or mineral supplementation'. Wow.
My endo wanted to transfer me back to the GP......I balked. Are you kidding? I told her my GP is negligent and doesn't know how to treat thyroid patients and I refuse to have her supervising my care. I have learned my rights but it cost me years of my life. So I've got a 6 month follow up at the hospital. AT least with the hospital, tests that would cost me out of pocket are done for free. Like vitamin D.
• in reply togabkad
Hi, say if you earn £34,000pa your national insurance for the year would be just over £3,000. Anything other than levothyroxine, it seems the majority here pay for the drugs themselves off the internet. I'm on disability but still had to pay prescriptions until I got diagnosed hypo. The list of diseases where you can get "free" prescriptions is very short! There's no such thing as a free lunch unfortunately.
People with great jobs higher up the ladder may get private health insurance paid for by the employer as part of their package, but my experience of that is they won't cover any existing conditions. When I've had private treatment in the past we've put the more expensive fees on to our mortgage.
Come and live in Wales our prescriptions are free for everyone!
• in reply tobobsmydog
I'm 4 miles from the border! Historically I live in Wales, i'm the Welsh side of Offa's Dyke 
bobsmydog• in reply to
That's a shame - but at least you get free carrier bags at the supermarket - or do you? maybe that has stopped with you too, now?
• in reply tobobsmydog
A lot of shops charge for carrier bags here too now. I always take some anyway.
The other branch of my GP's is in Powys, so not sure how that works re prescription charges? You'd think all the patients would keep travelling to that surgery lol!
It's getting to be a very mercenary World, and rapidly getting worse.
It's absolutely essential to have competition otherwise without regulation the sky is the limit. Try not to become ill I guess.
It is just as disgusting in the U.S. A tiny bottle of eye drops for $300 and it is not a rare medication. Some people have insurance for drugs and the price is a lot less but than you have an insurance premium. When you are ill and need a specific drug, you have little negotiating power.
A while back someone in Florida told me how much their HRT cream costs. Same ingreadients as what I use here in Canada. I pay $144 (I have no insurance). Hers costs more than double this in US dollars. She has insurance but it doesn't cover 100%. Basically she pays out of pocket what I pay and her insurance pays the difference. Talk about double dipping!
The only way I've managed to curb the pain of costs is to get the doctor to write up more pills per prescription than what is normally done. So let's say with the zopiclone, I get 100 at a time as opposed to what is usually prescribed, 30. I had the same with thyroxine which is a cheap drug and the prescribing fee is more than the cost of the pills. So long as the pharmacy keeps them in an unopened original container with the expiry date visible, this works fine.
One thing for sure: when you pay for all of your medications out of pocket, you don't waste them. LOL!
Hi gabkad, I ordered Erfa from Canada when Armour was going through shortages in the U.S. around 2008 perhaps. I paid for both out of pocket and I think similarly priced.
Politics is just a big game here. Once Pres. Bush added drug insurance to medicare it became absurd. (Plus horrible for the tax payers) Now people pay a premium to medicare, another premium for supplemental drug insurance on top of supplemental health insurance (since medicare covers 80%) and often pay a co payment for the actual prescription.
So everyone gets pmts from the patient and the patient thinks they are being subsidized. Little do they know, it's the other way around. Disgusting.
46 years ago I met my now late husband who had just started his PhD research on TRH. I don't know the amount given, it kept him just above the breadline, paid the department he worked in forclabtests space, services, use of the equipment etc so it would be a substantial amount but a drop in the ocean for drug companies. He was further supported for 3 years as a Research Fellow do would have been on something similar to a junior university lecturer. He didn't lecture at this level but was expected to take tutorials for medical students and assist in practical classes. So that was how universities were helped financially. His research work continued with people around the world till his untimely death so knowing how the system worked I appreciated that drug companies needed something back for what they put into research at various levels. but I also ubderstood that when I successful drug was discovered and remember there would be failures along the way as well that the drug companies were allowed to claw money back and I could see that this was only fair BUT they had a limited time to do this in and then it was purely marketing costs as in other areas. T4 has been around for such a long time but so has T3 and as those of us know who are paying for it well it's not cheap. This was made more appear to the other year when there was a shortage in the UK and we were allowed to import from elsewhere. It was then I realised that it was much cheaper abroad. I don't take T3 but I was appalled at what came to light. Since then I've been more aware of rising prescription charges, drugs being denied and the crippling state of the NHS. We have possibly put it down to our expanding population and advances in earlier detection or 'new' illnesses but is it? Yes but I suspect only in a minor way compared by what the drug companies are getting so I hope at long last this is looked into and control in a proper manner. Then I'm sure other companies will apply for licenses to supply T3, another reason for our excessive cost and more people can be helped. I'm sure other illnesses will have similarly been denied the help that is available.
• in reply tosilverfox7
I understand drug companies have to cover costs, but one person amassing millions, personally, should not be happening.
Just before last Christmas our local CCG had a meeting to discuss ways of keeping costs down. Not that it was worded as such, but it was obvious that was what they were doing. A lady from the Parkinsons Society spoke up about the generic medications causing problems with Parkinsons' patients which gave me courage to speak up about Thyroid meds too, so I guess there are plenty of other groups also suffering. How can medical people stand by and watch patients suffer so. It must really go against all human feelings for some of them and I have to wonder why they are not speaking up for us. I wish they's get together and back us in what we are saying about generic medication.
• in reply tonightingale-56
I'm sure it's right across the board Jbee, anyone with chronic illness this is going to affect. What about actual drug shortages too? Drugs being sold off abroad to make huge profits? I think to be honest the patient doesn't figure too highly, just a Merc on the car park and lots of holidays abroad seem to be more important. When is anyone in the NHS focussing on the patient anymore?
The people at the top earning huge salaries should show they are worth the money spent on them and get this sorted out. The NHS needs to have a business head, where do you see people in the commercial world, using materials where the supplier names their price? You just wouldn't be viable, you'd have to shut down.
nightingale-56• in reply to
The idea of money has just been allowing those at the top to get away with it for too long. It is high time that the NHS went back to it's roots of being a 'Caring' profession, and this fact was impressed on all those working in it. That is not to say that salaries should be minimal though, but fair for those working at the 'coal-face'.
• in reply tonightingale-56
Yes they should be fair wages, but a lot of them are still far more than most women in employment get, so I never understand all the moaning. A very good pension too, which in the private sector is getting a rarity.
Closing down all the smaller hospital s for some of the huge white elephants we have now dotting around the country hasn't saved money. And this is one of the many reasons why the caring seems to have evaporated. These buildings are mostly over designed, ridiculously priced, the NHS has to pay a rent back to the developer, it's a great money making exercise for everyone other than the NHS. My ex husband is an architect, so he knows how over priced these hospitals are. Doesn't even mean the treatment gets any better. One of those new ego led over designed hospitals is the QE in Birmingham, still such appalling care I took my daughter off a ward, and told the doctor why, to give her proper nursing at home. Her aftercare wasn't remotely what her consultant ordered after surgery, I was there! We talked about where my nearest A&E was in case of bleeding, and we left.
I live in rural Shropshire, my nearest hospital is an 80 miles round trip. Most of the population here is elderly and the women don't drive. What are they supposed to do?
nightingale-56• in reply to
Sounds like the newish hospital in Mid-Essex. So badly designed that the consulting rooms are like a 'rabbit-warren'. New babies just a few hours old have to be taken down a couple of floors through Main Reception and into transport outside he hospital. How healthy is that and what a good start to being introduced to the World.
• in reply tonightingale-56
Gosh, jbee, horrendous for the staff and babies. Why aren't staff consulted more? It would have been so useful do a few job studies to see how spaces are being used. Architects work to a client's brief, how can it go so badly wrong?
I can see in the future cottage hospitals making a come back. There's one 8 miles away from here, I'm sure local women must have had their babies there. I think it's completely shut down now. All this travelling to large hospitals, aren't we all responsible for trying to reduce our carbon footprint? If there's an emergency here we have some trained first aiders and defibrillators on walls in village halls etc, and some cars available with paramedics (I think) but if it's something really life threatening I shudder to think what may happen. The nearest ambulance station 13 miles away has been closed. The nearest A&E is 40 miles away. There isn't even a treatment centre nearer. I'm so relieved I no longer have small children at home, but I have to say when my grandchildren come to stay I do feel a bit on edge!!
nightingale-56• in reply to
The awful thing about it is that you could go straight from the Maternity Unit across the internal road and into the Car Park without having to go through Main Reception and lots of people. When my daughter had her last baby I went in this way (staff entrance, I think) and brought her, husband and baby out that way too. No one stopped us luckily, but by far the best option to keep germs at bay, when Mothers and new babies are at such risk.
This hospital is about 10 miles away, but there is a smaller (community hospital) much nearer (7 miles) which is very much underused (money again). The Ambulance Station used to be in our town, so only about 1.5 miles away from us, but am not sure where it is now. You sound as though your facilities are far enough away to be quite dangerous. Always grateful that I drive as it has been so useful in the past to get my son with Adrenal problems to hospital in a hurry.
Cottage hospitals are good - small is beautiful.
• in reply tonightingale-56
Yes you're right minimising germs for newborns and mums should be the priority. No one wants coughing over their newborn.
We're a farming community, and there was an accident recently with machinery, so the air ambulance had to come. I have a perfectly flat field opposite as we're in a valley. Valuable time is lost though and lives are at risk. Even with blue lights it would still take an ambulance an hour to get here. It certainly was a consideration when we moved. It does worry me quite a lot being this far from everything. There's nothing 24 hours nearby at all. I watch my young grandchildren like a hawk when they come!! At least I can drive!
It's funny isn't it when you think of the group spending power of the NHS that they always seem to allow themselves to be taken to the cleaners over everything they purchase.
Most companies would go for a bulk discount but not the NHS it seems - and it would appear to be what they pay for pretty much everything not just what they pay for drugs.
Yes, everything they purchase, not just drugs. It's insane.
My OH used to be an intensive care nurse (retired a year ago) and in the year before she retired they built a brand new intensive care suite. It was stupidly designed - clearly designed by someone who had no idea how patients in intensive care were treated - as there was an enormous open ward with side rooms, so that if you were at one end you couldn't even see the side rooms. They went from caring from 6-7 patients on the old unit to 12 on the new unit but didn't increase the staff numbers, meaning if you were on a shift and someone went to break you couldn't actually keep an eye on all the patients as they were behind walls. They installed massive trough type sinks - God knows why, there was no call for them - which must have been impossible to keep clear of hospital bugs. And they reused ventilators from the old unit and bought the cheapest new ones they could find, meaning that there were 4 different types of machine, all of which worked slightly differently, for the nurses to get to grips with. The manager would try to save money by buying cheap intravenous lines which were notorious for blocking off and being worse than useless. They got through twice as many so they might as well've bough the more expensive ones in the first place. There's an expression isn't there, about spoiling the roof for a ha'peth of tar, or something like that?
So it's not just drugs they're sh@fted over...
Spoiling the ship for a ha'pworth of tar, exactly. Bet your OH is glad to have retired. Your email makes depressing reading, all those who knew better must just have been in despair.
Can you imagine having to look after 12 patients in intensive care when not all of them can be seen at once, staff numbers have effectively been reduced and people have to have a break or heaven forbid might be otherwise occupied by dealing with an emergency.
I wouldn't even want to be in a pilates class where there were that many people because ideally the instructor can only really safely supervise look About 8 people at once - so to think it's ok in ICU!
Obviously the whole place looked great to someone on paper. As for saving on cheap equipment then having stylish trough type sinks - totally mad - I'm sure our local Jamie's Italian restaurant has sinks like those in the ladies loos - it is just too depressing for words.
Reading this makes me think there was a lot to be said for the old Florence Nightingale wards where everyone could be seen at once and you were moved further away from the nurses' station as you got healthier and needed less monitoring.
Ship, not roof! LOL, I was close.
Yes, depressing isn't the word. Stressing is nearer. My OH is hypothyroid too and after too many shifts of looking after 2-3 patients and having no breaks (both against the "rules" - ventilated patients are supposed to be nursed one to one for obvious reasons! And I hardly need to explain the implications of working a night shift of 11.5 hours with no break...) she retired at age 55. To our knowledge she hasn't been replaced as yet, and as an experienced senior nurse with 30 years experience who could actually cope (just about) with multiple patients, I'm pretty sure the impact of her leaving has been a big one. The junior staff struggle to look after one patient, let alone two. But the unit is managed by a power-mad woman who's bullied a number of staff but has always managed to come up smelling of roses. I remain as ever perplexed that these people do so well in public sector organisations.
And yes, often we'll be walking around Tesco or similar and she'll say, "there are more staff in this aisle stocking shelves than were on the unit."
• in reply toFruitandnutcase
I've been saying this for years Fruitandnutcase, at least nurses could be with the patients on the Nightingale Wards. Nurses stations are sometimes totally separate from the main ward, how does that make any sense. I'm sorry to any of the great nurses who may be on this site, but from my experience in and out of hospital it's so much easier to ignore/ delay answering buzzers and the nurses do tend to spend a lot of time on the station and not with the patients. That's even worse at night when staffing tends to be less and patients tend to be more poorly at night. It's a poor design, who came up with that needs to be throttled 
Fruitandnutcase• in reply to
I know, I'd completely forgotten about that. I had a caesarean section with my first child - he's 39 this week so it was a while ago, anyway and when I think of it the nurses station was right outside my special care room.
Once I got over the shock of it all - when I woke up it felt like my nose was pressed against the ceiling tiles - everything was white and I thought 'Oh heck, I must have died' then I thought - 'hang on I wouldn't be in pain if I'd died' and realised what had happened, anyway, once I felt a bit better I spent the greater part of a week being able to listen in while the nurses did the morning handover and discussed how everyone was getting on!
It was like being in a live episode of Emergency Ward 10, highly entertaining for me and thank goodness I didn't know any of the people whose case notes were being discussed.
And we/Patients are paying for this. My GP has been "funny" trying to push me some generic drugs when my Consultant insisted on "brand" (and he wrote to my GP repeatedly). It's not an expensive drug either. I bought it once privately - £20 for 6 months. In the end, GP wrote to my consultant stating, this patient isn't taking this medication. Well, I was buying the correct medication, privately because GP wasn't giving me the correct drug to take on NHS. NHS is leaching out so much money and it's unbelievable. No wonder we won't get tests /treatments over so many years when we should have been diagnosed quicker and get treated on NHS. All these incompetent managers ought to leave their posts.
• in reply to
So many times I've had little digs from my GP re costs when something has been prescribed, but I did point out I'm self medicating for my thyroid. I told her what I had paid for liothyronine and she nearly fell of her chair! Also I'm really good at only ordering meds I really need on my repeats.
Helcaster
So wise!! But don't forget some treatments are costing £10,000 upwards. In fact, some treatments would cost £300,000 on NHS.
Thank you for sharing!!
• in reply to
How does the NHS draw the line? When you get a floozy getting a boob on the NHS that makes me so mad!!
How common is thyroid disease though? Isn't it worrying that a disease so prevalent now, we're getting priced out of our treatment, unless you take cheap as chips levo. Then we get to the £10,000's wasted on treating each symptom, investigations when doctors need to know how to diagnose us!
Helcaster
You aren't joking. Yes, you are so right about that. Totally. There were some TV series about that, recently. Someone else might be able to find the link for you.
theguardian.com/society/201...
I remember Dr Skinner saying it's not a crime to treat obesity with thyroid treatments. Pity, NHS wasn't as wise as Dr S.
• in reply to
Everyone is condemning obese people, so many just don't believe it can be down to your thyroid. Even your own GP doesn't believe you don't binge eat. Now so many operations cancelled for obese people. Where it isn't self inflicted we should be getting all the help available. Being neglected is destroying our health, leading to heart disease etc etc etc.
We don't have many people on our side do we? I was sent to a health trainer by my previous GP. I kept a very truthful accurate food diary. After many weeks the health trainer said to me you're not eating enough calories, there has to be something else going on. But I still had to make a case for myself before the GP diagnosed me.
Did you see this? This company has raised the price of this drug 5000% overnight. Not a thyroid drug, but thought it was still in keeping with the topic.
nytimes.com/2015/09/21/busi...
A very concerning issue - with no obvious answers.
Any changes such as other companies competing can take years to occur and get through approvals. In the meantime, effectively extortion and suffering for those now refused treatments.
Many years ago I read an article about TB and the societal imperative for treating it. Even in the USA it was recognised that the benefit of treating everyone, even if they were uninsured and had no money, were huge - and treating the poor was the only way of protecting the rest including the rich. This flies in the face of that.
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