COVID-19 and UK Hydroxychloroquine Supply (UPDATE... - LUPUS UK

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COVID-19 and UK Hydroxychloroquine Supply (UPDATED 20/05/2020)

Paul_Howard
Paul_HowardAdministrator

Hi everyone,

We've received some enquiries and concerns about the supply of hydroxychloroquine again following US President Donald Trump's remarks yesterday. Therefore we have updated our article at lupusuk.org.uk/covid19-hydr...

On Tuesday 19th May 2020, US President Donald Trump alleged that he is currently taking hydroxychloroquine as a preventative measure against COVID-19. This is despite any evidence indicating that the medication may have a protective effect against the virus and warnings that it could be unsafe for treating COVID-19.

In March 2020 following a previous press conference in which President Trump praised hydroxychloroquine as a potential “game changer” in the fight against COVID-19, global demand for the drug increased significantly; this even caused a short-term supply issue in some parts of the UK.

We do not anticipate any supply issues in the UK following this latest announcement. Following the previous shortage, due to an unexpected increase in demand, action has been taken by regulators and government to safeguard stocks for people with lupus and other autoimmune rheumatic conditions and prevent prescriptions being written for people concerned about COVID-19.

30 Replies
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His critics have been quick to say how very dangerous it is e.g. causing heart dysrhythmias commonly - not what we understand - misinformation for political purposes is not very helpful

Thanks Paul. Brilliant update!

Thanks Paul, that is good news.

The concern is that people suspect Trump has some sort of insider information about the efficacy of HCQ and this will cause them to pressure their physicians to prescribe it in the same way as his personal physician has been pressurised into prescribing it. There would seem to be public interest grounds for the US regulators of medical practitioners to take disciplinary action against that physician, but I'm not hopeful. x

Paul_Howard
Paul_HowardAdministrator in reply to whisperit

It is unlikely the regulators in the US would take disciplinary action. In the UK the MHRA has issued instruction for it not to be prescribed for COVID-19 outside of clinical trials - hopefully this will be followed this time!

Kevin53
Kevin53 in reply to Paul_Howard

twitter.com/latelateshow/st...

Worth a chuckle. Best wishes Kevin

happytulip
happytulip in reply to Kevin53

Just watched it........oh dear Lord!!!!

I wonder if there is a HealthUnlock site specifically for Presidential ailments. All views are my own. Best wishes Kevin

happytulip
happytulip in reply to Kevin53

There needs to be!

Thanks for the update Paul -very useful 🙂

This man is an utter fool,telling people to self prescribe toxic drugs. It would just take a dozen of unfortunate people to have bad side effects there would be law suits against Trump & his government, unfortunately it probably won't be Trump & if so known him he will try to sue the drug companies.

SCOOTER4444
SCOOTER4444 in reply to Cal66

From what we hear- he’s right

There is now a trial 're C19 and Hydroxy taking place in the UK so the jury is still out. Unsettling for our supply but obviously fingers crossed for vaccine success.

I live in the US and as you know, you cannot get hydroxychloroquine without a prescription so it cannot be self administered, not here anyway. The White House physician ordered it for our president after he was exposed to the virus. An extraordinary large amount of ER physicians and first responders are taking the medication here for prophylaxis after the initial studies indicate that it is effective and we know that it has antiviral properties. As you know it has been on the market for over 60 years, is known to have exemplary safety record, and has not been found to be dangerous in Covid 19, except it is reported that way by our extremely liberal media without any merit based on one study that was retrospective and non peer reviewed. How could it be safe for everyone else but not for Covid 19 patients, that is nonsensical. I have just picked up a 90 day supply so there is no shortage of it in the US. I love all of my lupus friends over there, but please don’t report untruths. Just because it is in the very left winged media reports it that doesn’t make it true. The president here is very transparent about everything he does and he admitted he had been offered and taken the medication after exposure. I being a nurse would have done the same thing with known exposure to this horrible virus.

Paul_Howard
Paul_HowardAdministrator in reply to nanleighh

Hi nanleighh,

I'm sorry, but there is no reliable evidence demonstrating that hydroxychloroquine is effective as a prophylaxis for COVID-19.

Hydroxychloroquine does have a very good safety record and it is concerning to see so much focus on potential side-effects, rather than the lack of clinical evidence proving it is effective in preventing or treating COVID-19. Even with its safety record, it isn't necessarily safe for everyone and it is important that it is prescribed by a doctor at an appropriate dosage.

I'm glad to hear that you are not experiencing difficulty getting your hydroxychloroquine, but that is certainly not the experience of everyone. The Lupus Foundation of America has been reporting many instances when people with lupus are unable to obtain their essential treatment.

bookish
bookish in reply to Paul_Howard

I thought that the point with a possible benefit of hydroxychloroquine was that you need to take it with zinc, which often no one mentions. Hydroxy is a zinc ionophore, but there are others (like quercetin and EGCG), so it needn't be hydroxy with or without it's potential side-effects or risk of shortages for those who need to take it already. (I've been using quercetin successfully for a few years, hence my interest....but hope that it too won't become hard to get). If zinc is to reduce replication it needs to be taken early.

Well they are doing several studies here combining hydroxychloroquine with zinc and giving it to first responders to see if it works. So we will see what the outcome of that is. The reason we were having a shortage here in the beginning was because physicians were ordering it for themselves and their families and writing prescriptions for all of their friends. But now the manufacturing has caught up so there’s no longer a shortage. I feel really bad for anybody that can’t get it because it is such an amazing drug for those of us that are on it. It does have an extremely long half life though so if you miss a few doses you should still be OK. However if you’re off of it for more than a month I could turn into a big problem. Take care Paul. Thanks for all you do.

lowraind
lowraind in reply to nanleighh

"The president here is very transparent about everything he does..." I also live in the US and have to say that this is fake news.

Woods01
Woods01 in reply to lowraind

Just out of interest, what part is ‘fake’? It shows him saying it.

lowraind
lowraind in reply to Woods01

"The president here is very transparent about everything he does..." is fake.

SCOOTER4444
SCOOTER4444 in reply to Woods01

That because most of the US doctors are on it for preventative reason- just are not publicly all saying it because it is unfortunately so political. My doctor told me his entire staff has been on it for over 2 moths now.

I hope there is no shortage in Jersey C.I. either. Take care everyone.

Very reassuring. Thanks for that Paul. So nice to get some good news. 👍🏻

Thank you for your latest information. Much appreciated.

Thankyou for the update

Thanks for the update Paul. My pharmacist just called me today to say that she's having a problem getting the Zentiva brand, It's the only brand that I can tolerate so I'm quite concerned.

Paul_Howard
Paul_HowardAdministrator in reply to Biddy47

Hi Biddy47,

I'm sorry to hear that they are having trouble getting the Zentiva hydroxychloroquine. Unfortunately this was something that some people had trouble with prior to the pandemic. Do you know if your pharmacist has tried contacting Zentiva Customer Services for help? Their information can be found in our article here - lupusuk.org.uk/hydroxychlor...

Biddy47
Biddy47 in reply to Paul_Howard

Thanks Paul, the pharmacist is very good this has happened before and she searched around until she got some. She is quite confident that this will only be short lived and supplies will return to normal. Thanks for the link, I will pass it on to her. I get a bit panicky when this sort of thing happens especially when I can only take that particular brand.

Thanks again.

Hi Paul,

Thank you for a reassuring article and link. It seems there are a lot of investigations worldwide into the potential use of hydroxychloroquine for some form of treatment for Covid 19.

A lot of the interest appears to be in the use of it as a prophylaxis treatment. I have been tracking this for self interest, as a long term patient taking hydroxychloroquine, I would like to know if this is an effective barrier to Covid 19. Here’s the info I’ve seen :

cebm.net/covid-19/covid-19-...

I also have a query re supply of prescription drugs, following your comments.

For a long time I have been getting my supply of hydroxychloroquine and a variety of meds , (of which Boots don’t supply the particular brand I need ), from a pharmacy within the same geographical area ie a choice on my prescription list of places using electronic ordering.

Since the pandemic, I have been asked where I live and told, as I do not live in the (small town), but in another small town, 5 miles away, they must preserve the stock for very local customers. I recently pointed out that I have been a regular for a few years and practically begged them to give me something, as I have had serious digestive problems. They reluctantly agreed.

When I went to collect treatment for gastritis (also difficult to get due to Ranitidine being withdrawn, allergies in my case to PPIs,, Famotidine of interest for Covid 19, the other drugs in this group are scarce ) they gave me half the volume of drugs the doctor supplied and changed the prescription unilaterally to half the dose the dr prescribed. I pointed out that I am a complex patient and the drug combinations I am on, may be the reason for the higher dose prescribed. I was told “it wouldn’t make a difference “. The drugs were in a box with no side effects , warnings etc. The amount lasted 10 days only. I was told to get them elsewhere. I rang again when I ran out. They said they had supply, but as soon as I told them the surgery issuing the drug they said they didn’t have supply after all.

The reduced dose has had consequences. I have been quite ill from the limited protection I was given.

Sorry about the lengthy background but I wanted to put it in context.

Bearing in mind my experience, what are our patient rights to use a different pharmacy in our nhs area? Is there some form of NHS rule for prescriptions being dished out not in the immediate area during the pandemic?

I have the impression from my surgery pharmacist, and the fact that I can select any local pharmacy from a drop down list electronically, that I can collect from these listed chemists. It makes me wonder what is going on. I thought you may have some answers re patients rights?

Cheers

Claire

Paul_Howard
Paul_HowardAdministrator in reply to 25clai

Hi 25clai,

I'm sorry to hear that you have been having issues with your local pharmacy. I have heard quite a few reports of pharmacies issuing prescription items split into multiple collections. This is an attempt to ration and regulate supply for some items. As far as I'm aware you should not be refused medication based on where you live.

This letter is from 2015, but I don't believe the legal rights of access for patients have changed since then - england.nhs.uk/commissionin...

It states, "Patients have the right to choose freely which pharmacy dispenses their

prescriptions. We are writing to ask for your help in ensuring that all patients are

aware of this right and can exercise it without influence from their general practice or

from a pharmacy.

NHS England is concerned that, in a small number of cases, general practices or

pharmacies are seeking to influence inappropriately which pharmacy dispenses a

patient’s medicines, or which pharmacy a patient nominates to receive their

prescriptions electronically. "

If you feel it is appropriate to raise a concern about this practice by your pharmacy, you can learn more about how to do this at pharmacyregulation.org/rais...

Hi Paul,

Thank you for clearing up the guidance / right of access for pharmacies.it allows me to understand my rights as a patient . Really helpful. It didn’t make sense to me that electronically I can select a number from the local area, but that the pharmacy I had chosen could reject me outright, based on my address. It was extra annoying , as I have a track record of using the pharmacy in question,historically .

I have had the multiple collection situation with collection of meds at pharmacies, especially at Boots, but I can understand the need to spread the drugs across patients at this turbulent time. It would not sit right with me for patients to miss out completely, whilst I can can pick up a month supply of the same drug in one go, for example . I am capable of picking up my meds, not shielding etc, so it’s no problem for me.

Prior to the health service embracing new tech, my gp practice used to just give a choice of 2 pharmacists in the town, but now they have no problem where I go within the list I have, so my practice is fine and following the rules, now just need to sort out the pharmacy!

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