UK Hydroxychloroquine Shortage - We need your help!

[Paul_Howard]

Hi everyone,

We know that lots of people have had issues collecting their prescription of hydroxychloroquine and want to help us. Writing to or emailing your local elected representative such as your Member of Parliament (or other local representative such as your Welsh Assembly Member, Member of the Scottish Parliament or Members of the Legislative Assembly in Northern Ireland), can be a way of expressing your concerns and supporting RAIRDA‘s work asking the government to take early action to prevent any prolonged shortage. This will not only help patients, but also help reduce demand on the health service at this difficult time. It’s important your letter or email is your own and says why this issue is important to you as a individual, but here are some things you might want to consider:

Check who your MP is at members.parliament.uk/FindY...

- Include your name and address at the beginning or end of your email – politicians can only respond to people who live in their constituency, so make sure you write to the correct MP and show them you’re a constituent.

- Use a mix of your own personal story and concerns and facts about the wider context, like the fact a shortage of hydroxychloroquine could mean patients flare and need to go to hospital, putting more burden on the health service at this really difficult time.

- At the end of your letter, ask them to raise this issue with the government urgently.

- You could also mention that this issue has been reported in The Guardian and the Mail Online.

theguardian.com/world/2020/...

dailymail.co.uk/news/articl...

- You might want to include some general information about hydroxychloroquine, like this below:

Hydroxychloroquine is used to control some rare autoimmune rheumatic diseases like lupus and scleroderma. These can be life-threatening if they aren’t controlled. Tens of thousands of people in the UK therefore rely on this medication. Without this medication patients conditions can flare, which can be really serious, it can also make people with these conditions even more vulnerable to COVID-19. Shortages of the drug have been reported because it’s being considered as a treatment for COVID-19. However, it’s still unproven. Whilst we don’t know much about hydroxychloroquine’s ability to treat COVID-19, we do know that it helps patients with conditions like lupus and scleroderma control their diseases, helping them stay well and reducing the burden on the health service.

If you’re writing to a member of a devolved assembly follow these links to find your local representatives in:

Northern Ireland - aims.niassembly.gov.uk/mlas...

Wales - senedd.assembly.wales/mgFin...

Scotland - parliament.scot/msps.aspx

[HelenL75]

I’ll definitely write as had an issue this morning with my prescription and my local MP is a GP so at least he should understand what I am on about 👍🏼

[happytulip]

Hi Paul, I am happy to do this but have a bit of a stupid question.

I thought that parliament had closed down because of Corona virus? If that is the case how soon will it be before our MPs can put this issue to the appropriate people?

[Paul_Howard Partner LUPUS UK in reply to happytulip]

Hi happytulip ,

Parliament itself is closed, so it isn't possible to have a discussion but MPs can still submit written questions.

[happytulip in reply to Paul_Howard]

Ok, thanks. I'm writing it now. I've also text all members of my family and told them they have to write on my behalf too as a flare would affect everyone as things do in chronic illness. I've told them non email, no Christmas presents!!

[Lupiknits]

I’ll write again to my MP. Thanks for all your hard work Paul x

[happytulip]

Hi Paul, I've emailed my local MP. Are you able to give a rough idea as to how serious this is? Obviously I appreciate that anyone going without their meds is unacceptable, but I was wondering what sort of number of people have been in contact with you about difficulty in getting HCQ?

What sort of scale are we talking and how worried should we be?

[Paul_Howard Partner LUPUS UK in reply to happytulip]

Hi happytulip ,

It definitely seems to be a widespread issue of people being unable to get their prescriptions fulfilled across the UK. It's very hard to gauge how long it may take to correct the issue. We've probably heard from around 100 people in the past week and a half about this through our helpline, email and social media platforms.

As for how worried you should be - my hope is that you shouldn't have to be worried. This is why we're trying to get reassurance from the government and NHS on this matter. We believe the medication is in the country but at the moment it is inappropriately stockpiled.

[happytulip in reply to Paul_Howard]

Thank you for that clarification. Yes, no need to worry. The stuff is about, just not where it needs to be so that's a logistics problem.

I've just phoned my pharmacy who have many boxes of the stuff apparently. So far they say that they have had no issues getting it in but cannot guarantee that the situation won't change.

Let's hope enough people write to their MPs to make a difference.

Thanks to all of the LUK team for their help!

[CRYSTAL11]

Hi Paul. I have just emailed my mp. Who happens to be Mat Hancock

The minister health

I have tried to explain our problems I just hope he will listen and take some steps to rectify this

Sheila xx

[Ironmytherapy in reply to CRYSTAL11]

I also sent an email to Matt Hancock last week & to my Local MP, haven’t received anything from either as yet.

Stay safe & hope you get a reply soon 🤞🏽

[Prunes]

I emailed my MP yesterday and have just received a reply.

He didn't specifically address my concerns about HCQ shortages other than to state that it is not licensed for covid treatment here in the UK. He also went on to say that the UK has a reserve of drugs in general as part of no-deal Brexit planning. He finished by telling me to get back to him if I am unable to get HCQ in the future. I have about ten weeks supply currently.

Not the most reassuring response.

[Paul_Howard Partner LUPUS UK in reply to Prunes]

Hi Prunes ,

It may be worth getting back to him with some of the further information I've outlined in my post.

[Prunes in reply to Paul_Howard]

Have just emailed again as I have checked with my local pharmacy and he says all his wholesalers are out of stock. He has one packet on his shelves.

[Serser]

Done and sent! I hope it works!! X

[eunidarling]

Hello Paul

Thank you for the detailed guidance regarding sending an email to our MP's and for

advocating on our behalf.

I have just sent an email to my Local MP.

Stay safe and take care

[Ironmytherapy]

Hello Paul_Howard I called Boots Pharmacy this morning, they said they have a delivery tomorrow, not sure if the Hydroxychloriquine will come though? Had a telephone consultation with Lupus clinic with Professor & he told me that “listen there is going to be a shortage of Hydroxychloriquine & not sure if you will be able to get some, especially in the next coming weeks” However I do have another medicine I’m taking that is also a Malarial drug and have been told what days to take that one when not taking the Hydroxychloriquine in order to prolong the amount I have. I would urge those to send an email to their Lupus specialist nurse if they are having any flare ups at this time to get advice or if running low on medication for what steps they can take. They will contact you back with an online telephone appointment.

I have not received any emails back from the two I sent last week.!

I will send again and again if necessary, I know Parliament is closed until after Easter.

[Paul_Howard Partner LUPUS UK in reply to Ironmytherapy]

Thank you Ironmytherapy . It is interesting to hear about what your consultant said, thank you for sharing.

[Ironmytherapy in reply to Paul_Howard]

You’re very welcome Paul_Howard

[happytulip]

I've had a reply from my MPs caseworker and they are "looking into it and taking it seriously."

I'll write to Matt Hancock tomorrow.

And after my previous post I will be buying all of my family Christmas presents, so it seems!

[Milliecox]

Thanks Paul - this is essential and by drawing this crucial issue to MPs' attention, we may also begin to begin to show the specific issues that reduce the chances of people with SLE and other autoimmune diseases having the best health possible.

[happytulip]

Paul_Howard , would it be worth contacting the BBC about the HCQ issue. They were looking to interview people with lupus about the pandemic not long ago? I think it was the BBC anyway. I'm sure someone would run with the story?

Might even get a question put to the daily government briefing?

[Paul_Howard Partner LUPUS UK in reply to happytulip]

Hi happytulip ,

One step ahead of you. I contacted them a couple of days ago and I'm awaiting a response.

[loopy-lou]

I will also email my MP. I rang my pharmacy who didn't seem to care + just said there will probably be a shortage of many drugs. I then wrote to my GP to share my concerns. Apparently, guidelines are to put repeat prescriptions in as normal. It was suggested that I call the pharmacy again. I was then told we can always try another pharmacy should my usual one run out. I did point out that I would probably need a hospital bed without hydroxychloroquine. Obviously, it is extremely concerning for us and we need to be listen to. Thank you for all your help and hard work!

[heda123]

I did this and my MP has replied back asking permission to use my email to forward to the health authorities. So lets hope something comes of this. I also put it out on waltham forest facebook group. But no one replied back to me. Surely someone else i the whole borough must be on those meds!

[Hidden in reply to heda123]

Good job👏

[Paul_Howard Partner LUPUS UK in reply to heda123]

Well done heda123 . Please let us know whether you hear anything back.

[HelenL75]

Just an update from my email to the MP who is also a GP got an email back next day asking for some additional details (didn’t read original email as all in there 🤦🏽‍♀️) but sent anyway

Had another reply this morning saying they spoken personally to the Health Minister and they’ve confirmed it’s a nationwide issue they are aware of and my MP is raising with Dept of Health and will keep me posted

Didn’t really give an answer to what’s happening but seemed concerned, seemed to understand and take seriously

Never written to an MP before (unless a school project counts) at 45 feel all grown up and not as disheartened as I thought I would 😉

Will update any progress and stay safe everyone

Helen x

[Hidden in reply to HelenL75]

👍

[Paul_Howard Partner LUPUS UK in reply to HelenL75]

Hi HelenL75 ,

Thank you so much. It is great to hear that they appear to be aware of the problem and investigations are taking place. Please update us if you hear anything more.

[happytulip]

This is definitely a problem that needs to be nipped in the bud. Is there any update Paul? I'm still waiting to hear back from my MP.

[Paul_Howard Partner LUPUS UK in reply to happytulip]

Hi happytulip ,

I will be publishing an update later today.

[Prunes]

Update to my further email to my MP. He has promised to write to the Department of Health and will let me know their response. We are on first name terms now!

BTW at my local pharmacy my azathioprine is also out of stock.

[Paul_Howard Partner LUPUS UK in reply to Prunes]

Hi Prunes,

Thank you so much. Please let us know whether you hear anything back.

I'm also looking into the shortage of azathioprine - this is due to different reasons.

[Sin123]

I’ve also written to my MP who has confirmed they’re contacting the Dept. of Health to raise this issue. I’ll continue to badger if I don’t receive an update.

[Paul_Howard Partner LUPUS UK in reply to Sin123]

Thank you Sin123 ,

Please let us know if you hear anything back.

[Sin123 in reply to Paul_Howard]

Yes, I will do. If I hear nothing I’ll definitely be chasing this up.

[DRunnerchick]

My many associates over here on COVID front lines are running out of many meds, and some hospitals on the west coast are out of Tylenol even. Others are, paralytics for intubations, (profofol, fentenyl, ketamine).Things are evolving so quickly with this virus 🦠. Stay safe. I hope your MPs work better for you and have heard your messages. The trial w/HCQ and Zpac was not vetted and should not have been taken for trials from existing patients and uses! #rantcontainednow

D🏃🏽‍♀️