If your biologic was switched to a cheaper but equall... - NRAS

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If your biologic was switched to a cheaper but equally good/safe drug to save money for NHS, what would be most important for you to know?

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43 Replies
shazbat profile image
shazbat

I would love to take my biological drug in tablet form for convenience. But any saving would have to go into more RD treatment and care. People really have no idea what RD is they think it's a bit of arthritis in the knee. It's debilitating and can lead to serious complications.

manwithnoname profile image
manwithnoname

If only all savings would be put back into research for treatment of RA but I don't trust the management of the NHS to do it.

14penny profile image
14penny in reply tomanwithnoname

neither do I

DC56 profile image
DC56

All of the answer were good , but going cheaper doesn't paid off for some of us

Stanwillis245 profile image
Stanwillis245

Help as many RA patients as possible, no matter what the process.

2malinka profile image
2malinka

I am worried. What next: Once you have a chronic illness, or are elderly, will it be 'Please report to your nearest facility to receive your exit medication.' George Orwell, you were right.

Regards

Malinka

Jora profile image
Jora

I would be suspicious about the efficacy of the cheaper drug. Why is it cheaper? Would the delivery service be compromised? But as long as I experienced at least the same effect, I would be happy if the money was ploughed back into research, helping others to get onto Biologics or have whatever treatment is best for them. This sounds rather selfish, but if my RA is kept under control, this saves hospital time and, as we know, time means money.

Mimi21 profile image
Mimi21 in reply toJora

I agree. We had to be assessed for the need for the biologic in the first place.(a long process when you're desperate!) If something cheaper had the same effect of course I'd be happy to have that and for savings to be used on others. The whole point is to control the disease and limit damage which then costs the NHS a fortune in treatments, operations, disability aids, appointments etc

Lee_Evenden profile image
Lee_Evenden

I've asked my Rheumy about biosimilars and she didn't seem to have a clue what they even were!

VivRaine profile image
VivRaine in reply toLee_Evenden

That's not very reassuring! And this is their specialty? Bonkers

Birthdaygirl profile image
Birthdaygirl in reply toLee_Evenden

Scarey!!!!!!!!

VivRaine profile image
VivRaine

Can we be absolutely sure they are as safe? My understanding is that they only have to do short, small studies to show this, unlike the original medications.

kalel profile image
kalel in reply toVivRaine

VivRaine you know we are all have different opinions on these things but I can always remember my nurse telling me let someone else try the new drug because you never know what sort of side effects we may be getting from trying something new. :)

Ellioteva profile image
Ellioteva

I've tried three different Biologics and I've had the most dreadful side affects from each of them so my Rhumy decided he wanted to put me on Infusions Toxi can't remember the full name I was ready to start and I got a bad ear eye and belly button infection while I was getting over these infections I did some research into this new medication so I decided it's not for me to start with I'm not sure my body can take anymore also I have very high cholesterol I suffer from very irregular heart beat and very high blood pressure

I know when I see my Rhumy next Wednesday and I tell him I don't want to try this medication he will get very cross with me so I'm dreading the appointment

18446 profile image
18446

I'm not sure what is meant by the term biologic. I am on Methotrexate, Hydroxychloroquine and Folic Aid. Which, if any of these is a biologic?

Karen77 profile image
Karen77 in reply to18446

None of the above. Biologics use live cultures and must be refrigerated to keep them alive. Humira and Enbrel are common biologics.

18446 profile image
18446 in reply toKaren77

Thanks for the information. Think I'll stick to my current regime for the moment

nomoreheels profile image
nomoreheels in reply to18446

When diagnosed we start on DMARDs (as you're on now) 18446. If you don't become well enough controlled on these then your Rheumy can consider you for biologics but you have to have tried two DMARDs & unless there's a specific reason not to one has to be methotrexate. The DAS28 is performed on two occasions, a month apart & the score of each has to be above 5.1 to qualify to be put forward. These are expensive meds (hence the questionnaire & reason biosimilars are being considered) & why funding needs to be requested as it is at the mo. Hopefully you won't need them!

mandy_59 profile image
mandy_59 in reply to18446

None of them are, methotrexate and hydroxychloroqine are DMARDs ( disease modifying anti rheumatic drugs) Folic acid are just iron pills to boost the immune system that taking Methotrexate leeches. Biologics you may come across are Adalimumab, Enbrel, and what l have infused twice a year Rutiximab.

nomoreheels profile image
nomoreheels in reply tomandy_59

Folic acid isn't an iron tablet Mandy, I think maybe you're confusing that we need folic acid to help iron function properly. Folic acid is a B Vitamin whereas iron is a mineral. As you say MTX isn't specific which cells it targets & so it depletes what natural folate we have & why we need to supplement with folic acid. It both aids form red bloods cells & also helps iron function properly, this is why we're usually prescribed folic acid when we're anaemic alongside the supplements ferrous sulphate or fumarate. :)

mandy_59 profile image
mandy_59 in reply tonomoreheels

My mistake ferrous sulphate is the iron supplement. I take so many pills l got confused. 🙂

nomoreheels profile image
nomoreheels in reply tomandy_59

Easily done. Just wanted to set the record straight for newbies more than anything.

18446 profile image
18446 in reply tomandy_59

Thank you for the information.

shazbat profile image
shazbat

Hi 18446 biological drugs are the next step if your fail. They are very expensive so you have to go through everything cheaper first and they are administered by infusion or injection. Hope this helps.

Shazbat

18446 profile image
18446 in reply toshazbat

Thanks Shazbat. As my drug regime seems to be working fine, I think I'll stick with it for the moment.

Karen77 profile image
Karen77

My concern is whether the source for the biologic can be mimicked more cheaply. I thought they were so expensive because of the technology, but also because the drugs are being sourced from an original formula. Though maybe I am wrong? Humira and Enbrel are both biologics, and work very similarly, yet someone could respond well to one but not to the other. I would be afraid that switching from Humira to a semi-generic could jeopardize my remission.

thehill.com/blogs/congress-...

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Birthdaygirl profile image
Birthdaygirl

Would be very pleased if the bio similar drug had the same efficacy and lack of unpleasant side effects as current biologic/anti-Tnf. I would be particularly supportive if the drug company's price for biologic drugs was reduced to make it affordable for NICE to change their guidelines and open the door for many more to be given a another chance and/or choice in the fight to control this RD and reduce disability.

mauritius21 profile image
mauritius21

I think money saved should be ploughed back for the improvement of the services so people don't have to wait for too long to be seen.

Noreview profile image
Noreview

My sentiments would be exactly the same as Jora. I would be very hesitant as to a change in drug and should this present difficulties for even one third of RA patients then it's very possible it may increase the cost to the national health rather than save it.

crinkle profile image
crinkle

I want more people to have access to a 'normal' life.

Harpey profile image
Harpey

It used to be the case that the original pharmaceutical company that developed a drug had an exclusive licence to manufacture and sell them for a high price (for 5/10 years?) to be able to claim back some of the money that was spent in research and development/trials etc. to bring the drug to the market in the first place. Once the exclusive licence has expired, other manufactures were then able to get in on the act and produce and sell the drugs more cheaply. I'm not sure if this is still the case?

I think any savings should be used to support additional research for new drugs to treat RA - I'm running out of options with the existing ones.... Currently taking Enbrel, mtx, sulfasalazine, hydroxy and still flaring and needing steroids to control. Having medication review with consultant next week! Only two biologicals left to try and then I'm out of options...

jenna profile image
jenna

What price do we put on pain? RA is debilitating, exhausting, depressing, and sometimes ruins family life. So these bio drugs should be available for all who can tolerate them.

They saved my life, and I never look back to the dark days before having it.

magglen profile image
magglen

Feel I should have voted for someone else to benefit from me having the cheaper option! However, i really dread becoming as ill as I was before I started Enbrel. I wish I were more saintly!

sandybrown profile image
sandybrown

First question, "Why is it cheaper?" My GP practice tries to change to cheaper medication on my repeat prescription, the cheaper medication do not help me, there is a big difference.

I am all for NHS saving money, but money is wasted by management.

castro profile image
castro

Possibly if there was less wastage in the NHS and it did not have to treat all the health tourists, there would be no need to have that type of questionnaire.

shilpi profile image
shilpi

For further research and treatment for RA

18446 profile image
18446

Thanks for the information everyone. I still have a lot to learn about treatments for RA. Your replies have helped.

sandybrown profile image
sandybrown in reply to18446

Switching among biologic therapies is common practice in patients with rheumatoid arthritis who have an inadequate response or intolerable adverse events. Evidence from observational studies and association guidelines supports the use of sequential biologic therapy for these reasons. Owing to recent economic pressures on healthcare budgets, patients with rheumatoid arthritis who are well controlled on and tolerant of their current biologic therapy may be switched to alternative biologics, despite limited evidence supporting this practice. Clinical research and experience suggest that TNF antagonists are not interchangeable, as meaningful differences have been observed in their efficacy and safety profiles. Additional research is needed to assess the risk:benefit ratio of specific sequences of biologic therapies and the validity of switching biologic therapies for nonclinical purposes.

shazbat profile image
shazbat

As someone who has had 4 biologicals I believe the question related to generic v non generic drugs. You can't just be switched to a cheaper biological if you have already tried them and they failed. I know these drugs are incredibly expensive. But balanced against long term healthcare if we didn't take these drugs is a non starter. I think for the first time the NHS may be putting pressure on drug companies to reduce prices. Many companies these days have an expensive leading brand that encourages customers to pay for a name. They also run a secondary offering the same quality but with a different name for a lower price. I have also had none generic drugs prescribed by my doctor, I have never found any difference because by law there couldn't be. Because they are medically prescribed. So I'm on Toczilimab, which works on my particular immune system. If I could have an identical drug, cheaper but with a different name it would make no difference. Because the cost of these drugs extorted by drug company's will limit the availability to patients needing them in the future. We are already seeing regs limiting these drugs. Providing that saved money treated other RD patients I'm good with that. I saw someone last night who had all the symptoms of onset RD. She was in agony, she has asked me serveral times about my journey through my treatment. The poor love thinks a pill from the doctor is going to cure her if only.

Have a good day everyone. Shazbat

michaelegan profile image
michaelegan

If biosimilar drugs are as effective as the bios and cheaper it would be immoral to continue financing the more expensive option. How the savings are used is nothing to do with the recipients. I would expect more patients would be able to access this treatment.

flow4 profile image
flow4

"If your biologic was switched to a cheaper but equally good/safe drug to save money for NHS, what would be most important for you to know". The most important thing for me to know is the assumption built into this question: IF the replacement drug was certainly "equally good/safe", then that is fine. The NHS desperately needs to save money, and I agree with michaelegan that there's almost a moral imperative - certainly a practical one - to make savings wherever this can be done without compromising outcomes. But it's actually a very big 'if', and it can't possibly be true yet: if it's a new drug, then its long term effectiveness and long term risks simply aren't known. Clinical testing of new drugs rarely goes on longer than a couple of years, and often only last 6-12 months - so what if the new drug was 'equally good/safe' for a year or two, but then caused some awful long term side-effects? Also, research studies have tight/specific parameters - they test some things but not others - so it is easy to miss certain issues/problems. I'd want LOTS of research, not just a few studies, including some longitudinal ones.

I'm reminded of when they switched from real pig insulin to synthesised human insulin. The trials showed this was "equally good/safe", and it was much cheaper. But the studies didn't show that many people with type 1 diabetes - including my brother -became more unstable. My bro had to 'adjust to' having many more hypoglycemic attacks or many years, until he was also switched to a variable dosage regime that managed the problem. I imagine there'd be similar problems with any biologic substitute drug.

Hawkeye52 profile image
Hawkeye52

i am on what has been termed by "last chance saloon" am on my 4th Biologic drug, i have had lots of problems with other treatments, so i just want to get well and stay at a reasdonable level, your assumption that cheaper drugs would be safe (in my mind) is rather a leap of faith, would like to see any evidence that a cheap drug is safer

shazbat profile image
shazbat

Hawkeye like you I'm on my fourth. I know I mean if the drug was non generic but was the same quality with the same composition I would go for it. But if had a different composition then like you I would not agree. The question does say a cheaper equally good drug.

I went for a cream yesterday from the chemist. The named cream was £7.40 the alternative had virtually the same incredients except for the oil content with was just the moisture content. It was £3.70 that's what I mean.

Shazbat

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