Affected by recent drug shortages and want to have your voice heard?

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Anna DUK

Anna DUK

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Hi Everyone

We’ve (Diabetes UK) been approached by the Patient Editor at the British Medical Journal (BMJ) about an article they’re writing.

They’re hoping to speak to someone living with diabetes who’s been affected by drug shortages (mostly related to some of the difficulties around type 2 diabetes medication in particular).

If this is something that you’d be interested in please could you let me know in this thread or send me a private message. At some stage I will need your email address so we can put you in touch with the BMJ.

Thank you.
 
@Flower and @Sallysw I know you have both posted about this recently - perhaps you'd like to share your experiences?
 
@PhoebeC, yes linked to the above news article you have shared.

They also want to hear from people with type 2 too. Specifically related to type 2 meds such as Ozempic and other GLP-1 injections.

www.diabetes.org.uk

Our response to serious supply issues of drugs for people with type 2 diabetes

UPDATE, 21 JUNE 2024:The World Health Organisation (WHO) has issued a warning over fake versions of semaglutide which have been identified in the UK. The WHO has advised that semaglutide treatment should only come through a healthcare professional, and that semaglutide should not be bought online.
www.diabetes.org.uk www.diabetes.org.uk
 
I also know some people have been impacted in accessing type 3c medications. If affected, do let me know if you'd like to take part in sharing your experiences.
 
I don't know whether this will count but had a long awaited meeting with my Diabetic Nurse earlier this week. I had been on Metphormine and a large dose of Gliclazide which wasn't working. She took a look at my record book and just said Insulin needed as I didn't have readings below 10. She had a Libre 2 sensor in stock which went straight onto my arm (wonderful device). My Surgery has a dispensary attached and she put a request through for NovoMix30 prefilled pens through and told me to have a word before I left. I went and saw the girls who said they didn't have it n stock and had gone to order it but got the message 'out of stock'. They rang through to Boots in the local parade to see if they could get it and they got the same. Thankfully they were able to get it 2 days later, and the Libre sensors the day after, but it does worry me as to what might happen in future. And it's not only Diabetes medication that is difficult to get hold of sometimes. I am now ordering some repeats up to 2 weeks in advance in case of problems.
 
AndyGlos said:
I don't know whether this will count but had a long awaited meeting with my Diabetic Nurse earlier this week. I had been on Metphormine and a large dose of Gliclazide which wasn't working. She took a look at my record book and just said Insulin needed as I didn't have readings below 10. She had a Libre 2 sensor in stock which went straight onto my arm (wonderful device). My Surgery has a dispensary attached and she put a request through for NovoMix30 prefilled pens through and told me to have a word before I left. I went and saw the girls who said they didn't have it n stock and had gone to order it but got the message 'out of stock'. They rang through to Boots in the local parade to see if they could get it and they got the same. Thankfully they were able to get it 2 days later, and the Libre sensors the day after, but it does worry me as to what might happen in future. And it's not only Diabetes medication that is difficult to get hold of sometimes. I am now ordering some repeats up to 2 weeks in advance in case of problems.
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Thanks for sharing this experience, @AndyGlos
I think the fact that you're having to allow a buffer time to get your repeat prescriptions says enough. The whole process can be anxiety provoking for some. I know I've had to do this in the past myself.
If you'd like to share this experience with those involved in writing the BMJ article, please do send me a private message with your email address. Thanks! 🙂
 
@Anna DUK I have been researching semaglutide prescription drugs to help me manage my Type 2 Diabetes, and despite ticking every box referred to by the manufacturer's (T2, obesity/overweight, fatty liver, tachycardia heart condition, high blood pressure, not responding to Metformin, high BG levels, sleep apnoea and following healthy diet and exercise regimen), and this is one of my recent posts on the forum, and I have been calling helplines due to the harsh rejection felt by all NHS staff enforcing "semaglutide prescription ban" in my local area which has pushed me to seek out private prescriptions where the cost of Mounjaro Kwikpen is roughly £220 per month, and £2640 per year, which would mean cutting out all luxuries/subscriptions/holidays/travelling for me on low income due to being failed by the NHS in Manchester...

"This is mixed blessing, so really glad you have supportive GP Surgery willing to prescribe semaglutide drugs on NHS prescription (I just get stock phrases like "global shortages, no pharmacists can fulfil prescriptions, so no, not even making enquiries to help you, nope!"), but according to the manufacturer's Eli Lilly, the full benefits of Mounjaro come from long-term usage and gradually increasing the dosage up to say 15mg Kwikpen, but currently in the UK there's limited supply of 2.5mg and 5mg dosage Kwikpens only, and many GP's are just refusing to prescribe due to the supply shortages which the manufacturer's claim will be resolved "in few months in the near future"... So all the best for managing your diabetes, but there's currently no option to get higher doses in UK from licensed Pharmacists with Prescription, and the situation is so dire there's "grey market" online stores selling "compounded semaglutides" where the active drugs are mixed in labs, and the official manufacturer's and healthcare professionals discourage patients from using compound drugs or pharmacies due to health risks of essentially taking unlicensed generic drugs... Mounjaro can also reportedly cause "stomach paralysis" and the side effects mean that diet of bland low fat high protein foods is the best way to manage everything, so no "skinny jabs" then going out to restaurants or drinking partying and getting takeaways on the way home without the risk of extreme diarrhoea (no more poop jokes from me!), funny they don't show this on the promotional websites for their "wonder drugs"!"
 
Anna DUK said:
Hi Everyone

We’ve (Diabetes UK) been approached by the Patient Editor at the British Medical Journal (BMJ) about an article they’re writing.

They’re hoping to speak to someone living with diabetes who’s been affected by drug shortages (mostly related to some of the difficulties around type 2 diabetes medication in particular).

If this is something that you’d be interested in please could you let me know in this thread or send me a private message. At some stage I will need your email address so we can put you in touch with the BMJ.

Thank you.
Click to expand...
Are they interested in the long running on going CREON shortage? This is impacting many who have that little know categorisation - Type 3c.
 
With semaglutides, it's tale as old as time, supply and demand, where manufacturers can't keep up with unexpected demand and absolve themselves of any responsibility with regards to public figures who don't have diabetes using semaglutides solely for weight loss (off label) and just like all drugs, those who can pay more via private healthcare with private prescriptions get exactly what they want and public healthcare systems are secondary and expendable... I don't fully understand the global shortages of medicines and the ongoing closures of high street pharmacists, but I am also trying hard to reduce my stress levels and choosing to limit the amount of "doom-scrolling" through all the bad news and negativity which defines news items in the mainstream media.

 
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Anna DUK said:
@PhoebeC, yes linked to the above news article you have shared.

They also want to hear from people with type 2 too. Specifically related to type 2 meds such as Ozempic and other GLP-1 injections.

www.diabetes.org.uk

Our response to serious supply issues of drugs for people with type 2 diabetes

UPDATE, 21 JUNE 2024:The World Health Organisation (WHO) has issued a warning over fake versions of semaglutide which have been identified in the UK. The WHO has advised that semaglutide treatment should only come through a healthcare professional, and that semaglutide should not be bought online.
www.diabetes.org.uk www.diabetes.org.uk
Click to expand...
I am quite upset that Ozempic will not be available to us til 2025. Why on earth not?. I wondered if it was all the A listers and rich folk buying it all up as they say they can lose weight by it. Maybe the manufacturers are making more money selling it to the rich and have little concern for us diabetics. I hope I’m wrong. I have been prescribed Rebylsus (sp) but my readings always seem high even though my diet is roughly the same.
 
@Eshlee I hear all that, but it's healthy to be sceptical about American pharmaceutical companies promising "wonder drugs" too where the promotional materials never depict an average patient say screaming in pain with extreme diarrhoea on the toilet making them housebound (see my previous threads ha!), instead it's very much airbrushed actors and models who probably have genetic advantages and/or access to expensive surgeries to explain their idealised appearance namedropping all these semaglutides brands!

One way to subvert all the "big pharma" nonsense is to research your own alternatives too, so again I'm not qualified doctor and not offering medical advice, but there's lots of anecdotal evidence that Psyllium Husk as source of dietary fibre can help with bloating, constipation, diarrhoea and weight management, but each person would need to check their tolerance for dietary fibre in moderation, in the same way I'm changing my diet with healthy low sugar low carb fermented foods which are the polar opposite of ultra processed supermarket foods, and I'm taking full responsibility for my exercise levels, whilst the "wonder drugs" are unavailable to me, but if you can't live with side effects like stomach paralysis then you can't take them long-term anyway!

en.m.wikipedia.org

Psyllium - Wikipedia

en.m.wikipedia.org en.m.wikipedia.org
 
maryjaneholland said:
With semaglutides, it's tale as old as time, supply and demand, where manufacturers can't keep up with unexpected demand and absolve themselves of any responsibility with regards to public figures who don't have diabetes using semaglutides solely for weight loss (off label) and just like all drugs, those who can pay more via private healthcare with private prescriptions get exactly what they want and public healthcare systems are secondary and expendable... I don't fully understand the global shortages of medicines and the ongoing closures of high street pharmacists, but I am also trying hard to reduce my stress levels and choosing to limit the amount of "doom-scrolling" through all the bad news and negativity which defines news items in the mainstream media.

Click to expand...
With regard to the media that is exactly what I do now. I started in the pandemic and only check the BBC website a couple of times a day as I don't wish to be bombarded with negativity. One of my friends asked me how I am going to know what is going on in the world. I said the media don't tell me what is going on in the world, most of it is what goes on here and that is only their take on it. I prefer to do my own research.
 
I had a medication review today and was advised by the pharmacist to make sure I kept a reasonable stock of creon in.
 
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