We have outlined some of the issues that we’re working on to ensure patients get the support they need below.
Advice for patients
We understand that many RAIRD patients are concerned about the coronavirus outbreak and many are worried about whether they are at high risk of severe illness as a result of infection.
We understand that many patients found guidance from the government on who is vulnerable to coronavirus confusing and we wrote to the Minister responsible for rare diseases to seek clarification.
According to NHS advice patients who are at ‘very high risk’ of severe illness from coronavirus should now have recieved a letter from the NHS. If patients believe they should have received a letter by now but have not, they should contact their GP or care team.
You can find more information and advice on the websites of our member charities as well as details of helplines and support services.
Patients who believe themselves to be ‘extremely vulnerable’ can register themselves here. You can use this service to ask for deliveries of essential items like food. The government’s guidance states that “if you’re not sure whether your medical condition makes you extremely vulnerable, register anyway.”
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.
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.