cost of hydroxychloroquinine

[suzannah16]

Hi all, been on hydroxy for about 3 months [cheap brand] and been getting severe dizzy spells. I saw on here somewhere that cheap brands are not good for lupus suffers due to the cheap bulking stuff they use and that zentiva was better and more suited to lupus. asked my GP today if I could change she wrote a prescription. took it to the pharmacy to be told they doubted I would get it. it's blocked either by my local nhs or Holyrood/Westminster. I really need to be able to take this drug as I have been told a flare could result in terminal kidney failure. I know I may still get the same problems even if I were to switch brands but i'm not even being given the chance. does anyone know what the difference in price would be to the NHS. Do I have to move in order to try it?

[whisperit]

Hello suzannah16

Zentiva is not better or more suited to lupus/SLE than other manufacturers' formulations in general (although it is about 5 times the cost) - after all, the active ingredients are the same in all of them. But as you suggest, some people do find that a particular formulation suits them better than another. Here's the Lupus UK information sheet on this issue that also talks about getting over the issue of availability lupusuk.org.uk/hydroxychlor...

x

[suzannah16 in reply to whisperit]

hi, I know zentiva is basically the same as the other brands but as I've read on here people seem to tolerate it better I wanted to try it as I really need to try and prevent flares. It wasn't that my pharmacist couldn't find it just that they "weren't able" to get it. having said that when I tried to take my prescription back to try another pharmacy she wouldn't let me have it. she then said she would try to get some. come Thursday I will be going back and I either want the tablets or my prescription back, the situation just seemed odd.

[whisperit in reply to suzannah16]

Sure, the situation is a bit complicated, but my reading of the situation is that Zentiva stopped producing 'Plaquenil' as a brand-name med and instead switched to 'generic' HCQ, a lot of people who had been happily taking 'Plaquenil' found that their pharmacies were now giving them generic HCQ produced by other companies. Some of those people found that the different 'generic' they were switched to found that the switch was detrimental, and was remedied when they went back onto the Zentiva formulation. So it was the switch away from a formulation that they had been comfortable with that caused the problem rather than the inherent superiority of the Zentiva formulation. I could be wrong, and it would be interesting to hear other people's interpretation though.

Anyway, the important issue now is getting what you need. In the past, I had great difficulty getting gastro-resistant 1mg prednisolone tablets. First the GP told me it wasn't produced at all. When I discovered that there was a UK company that does produce it, I got the GP to prescribe it. But when I took the script into the local Boots and 2 other multiples, they all said it wasn't available because their suppliers didn't have a contract with that company. I sorted it out in the end by finding a local family owned pharmacy which had the flexibility and time to organise a special supply. It might be worth your trying a similar tack - check with the pharmacies exactly why they can't supply Zentiva, and see if a family run local pharmacy might be able to instead? x

[suzannah16 in reply to whisperit]

only chain pharmacies in my area now, but I am not going to let this drop if it means getting a version I can tolerate. thank you for your advice

[Paul_Howard Partner LUPUS UK in reply to whisperit]

Hi whisperit ,

I don't believe that it was the switch from one formulation to another that causes the adverse effects. I've heard a number of accounts from people who started on the Quinoric brand and experienced adverse effects but found other brands such as Zentiva easier to tolerate.

I'm also not sure about the validity of your statement that Zentiva is about five times the cost. None of these generic medicines are actually going to cost the pharmacist to supply them, but since they will get the same reimbursement cost from the NHS regardless of which brand they supply the suppliers for pharmacies will generally purchase the cheapest in bulk to make the best margin. I do understand that Quinoric has been attempting to undercut the other manufacturers to secure a larger proportion of the market, but none of these tablets are particularly expensive. If you require a particular brand then your pharmacist should work to provide it for you - overall it is likely to reduce profits of the suppliers pennies.

[whisperit in reply to Paul_Howard]

Thanks Paul,

On the tolerability issue, I bow to your much wider experience of course.

On the cost issue, the NICE/BNF listing of the different HCQs gives the 'Drug tariff price' as £5.85 for 60 tablets. But the 'NHS Indicative Price' for Zentiva HCQ is £32 for 60 tablets, compared to £4.75 for the Bristol Pharmaceuticals version, £5.83 for A A H Pharma, and Alliance Healthcare, £5.15 for Creo Pharma, and so on. bnf.nice.org.uk/medicinal-f...

My very sketchy understanding of this pricing system is that for generic drugs (including HCQ), the pharmacist is at liberty to issue any of the formulations that are approved. The NHS then reimburses them according to the Tariff.

'Undercutting' can occur when a manufacturer prices their formulation at below the tariff. That way, pharmacies can make a margin by buying from the cheapest manufacturer. For example, if they get them from Bristol Pharmaeuticals (who manufacture Quinoric), they make £1.10 per 60 tablets.

For M class drugs (of which HCQ is one), the NHS has a 'reserve' fund to pay for any that exceed the drug tariff price. So Zentiva does cost the NHS extra money? I'd be glad if you can correct me, as I may well be hopelessly wrong on this too. Ta x

[Paul_Howard Partner LUPUS UK in reply to whisperit]

My understanding is that generally pharmacists are at liberty to dispense the brand of their choice - so long as a certain brand isn't specified by the prescribing doctor.

I hadn't seen these most recent costs. When I was last discussing the issue earlier in the year the price difference was £0.49. Due to market conditions these prices can change regularly.

With category M drugs (including HCQ) I understand that the Department of Health & Social Care (DHSC) set a budget for the amount of profit pharmacies can earn on dispensing those drugs through cost effective purchasing. The DSHC carefully monitor and adjust the reimbursement prices of drugs in Category M of the Drug Tariff. Where they identify that the delivery rate of margin to community pharmacy will be likely to under or over deliver on the target, the DHSC will re-calibrate Category M Drug Tariff prices to bring the margin delivery rate back on track.

[whisperit in reply to Paul_Howard]

Thanks Paul_Howard Yes, that's how I understand it too. Pharmacists are free to choose whichever supplier/'brand' they wish unless the prescription specifies a particular brand. And as you say, the DSHC adjusts the tariff prices according to what seems like a 'reasonable' margin for pharmacies to make from NHS dispensing.

The problem for us lot of course is who gets to decide whether we get access to drugs like Zentiva HCQ if they cost a lot more than other generics. The first question is why their formulation is so much more expensive than other generics in the first place? Are they simply profiting from anecdotal accounts that theirs is the superior product? Pharmacists are themselves never going to issue Zentiva over other generics if it's going to cost them £25 or more every time (which is why I don't think the DSHC/NHS contract with pharmacies works that way - I think the NHS covers the extra). And the NHS is always going to discourage prescribers from specifying an expensive generic over other generics in the absence of clear evidence of clinical superiority. x

[Paul_Howard Partner LUPUS UK in reply to whisperit]

I don't think that Zentiva's price is on the basis of a 'superior' product. Many people take Quinoric with no problem at all and other brands like Blackrock Pharmaceutical and Teva are often suitable for people who experience adverse reactions to Quinoric too. As I said the price difference seems to have increased significantly in the past 6 months which suggests that maybe there was a temporary supply problem? It doesn't make sense for them to price a generic medication so high otherwise because they wouldn't achieve the volume of sales to suppliers. If I am able to speak to someone at Sanofi regarding the current price I will let you know if they share anything helpful.

[whisperit in reply to Paul_Howard]

Thanks Paul_Howard , Despite the wonders of Google, I have failed to find anything that explains the whole tariff and pricing system in words that I can understand - hence my garbled interpretations x

[Paul_Howard Partner LUPUS UK in reply to whisperit]

It is very complicated. I had to ask a rep from Blackrock Pharmaceuticals to explain it to me over the phone and I'm still not sure I'm getting it completely right!

[Paul_Howard Partner LUPUS UK in reply to suzannah16]

Hi suzannah16 . Let us know how you get on this Thursday. Hopefully your pharmacist has been able to obtain some for you. If not, it is definitely worth trying a different pharmacy.

If your pharmacist has any difficulty obtaining Zentiva® branded hydroxychloroquine, the product description is: "HYDROXYCHLOROQUINE SULPHATE (ZENTIVA) 200MG FILM COATED" and the 'PIP number' (product code) is 1201730. If for any reason they cannot find the product on their system they can ring the customer service line on 0800 854 430.

[suzannah16 in reply to Paul_Howard]

hi, thanks to everyone for their comments. went to pharmacy they gave me the zentiva hydroxy nothing said at all. hopefully I will be able to tolerate it after all the fuss and will be able to get it again if I'm ok with it.

[Paul_Howard Partner LUPUS UK]

Hi Hidden ,

Guidelines regarding eye checks for patients on hydroxychloroquine were revised earlier this year following evidence of higher than expected numbers experiencing retinopathy. Despite this, the risk is still very low especially before 7 years of continuous dosing.

Hydroxychloroquine is the safest treatment available for lupus and has a wide range of beneficial effects. It is recommended for almost everyone with the disease.