Coronavirus

Survey

In early May 2020 we surveyed people with rare autoimmune rheumatic diseases (RAIRDs) about their experiences during the COVID-19 outbreak so far. This survey asked people questions like whether they were shielding, how their care had been affected by the pandemic and how the pandemic had affected people’s household finances.

You can read the full report on this survey, published in June 2020, here.

Hydroxychloroquine

Hydroxychloroquine, a medication taken by many RAIRD patients to control their condition, has received a lot of recent media attention as one of the drugs being trialled as a potential treatment for COVID-19.

So far the evidence that hydroxychloroquine works is thin at best. One small study in France seemed to show patients recovered from the virus faster, but a number of patients who received the drug did not recover and died from their infections. Much larger and more comprehensive studies are needed to show whether the drug works and many experts are sceptical about whether the treatment will work.

In short, despite all the attention, we do not know whether hydroxychloroquine has any impact against COVID-19. However we do know that this drug is essential for many patients with serious rheumatological conditions. Patients rely on this drug to help manage their condition. If they stop taking it, their disease can ‘flare’ which can be a serious situation in itself. However, it can also make patients more vulnerable to infections such as COVID-19. As well as impacting patients, this would also put an even greater burden on the NHS at this critical time.

After a number of patients in the UK told LUPUS UK they had struggled to get hold of their usual prescription we wrote to the Secretary of State for Health and Social Care and the Chief Pharmaceutical Officer, asking them to take action to ensure robust supplies of the drug to patients who need it to manage their condition. The Daily Mail and Guardian also reported on our concerns.

Since then, we have had conversations with suppliers and understand that issues with the supply of hydroxychloroquine should have been resolved. If you have previously been unable to fulfil your prescription at your pharmacy, it is worth contacting them again to see whether they are now able to order it for you. If you are still having issues with fulfilling your script please get in touch.

We’re very grateful to all our supporters who contacted their local representative in Wales, Scotland England and Northern Ireland about this issue.

As a result of their work and our own actions we’ve received reassurances that Welsh and Scottish Government’s as well as NHS England are working to make sure hydroxychloroquine is available for patients who need it to manage rare autoimmune rheumatic diseases.

This includes:

– Banning the export of hydroxychloroquine to outside the UK.

– Ensuring it is only used for prescribed purposes or in clinical trials.

– Monitoring the supply chain to ensure stock continues to be available.

– Monitoring the supply chain for unusual ordering patterns.

– Ordering supplies of hydroxychloroquine for clinical trials in ways which minimise the impact on the supply of the medication to patients who take it to manage their own conditions.

We hope this will reassure patients. If you continue to have issues getting hold of a prescription, please do let us or one of our member charities know.

What else can RAIRDA do to support patients?

Patients with a rare autoimmune rheumatic disease should always get in contact with the member charity for their condition if they have concerns about their individual condition or want advice or guidance.

However, if you believe their is a specific issue that we, as a campaign group, can bring to the government’s attention please do get in contact.

If you would like to write to your MP, MSP, AM or MLA about any of the issues raised above, get in touch and we will happily send you some advice on writing to your local representative.