Last updated 20/05/2020
Hydroxychloroquine, a medication taken by approximately 90% of lupus 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 the coronavirus (COVID-19).
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. You can read more about this below.
What is the evidence for hydroxychloroquine to be used as a treatment for COVID-19?
At present trials are ongoing but there isn’t sufficient evidence to conclude whether it will be effective. Science Magazine stated that the available evidence that chloroquine and hydroxychloroquine work against COVID-19 was ‘thin’. On 21st April Associated Press published a report on findings from a USA study involving 368 patients which indicated hydroxychloroquine did not aid recovery from the virus and may have done more harm than good. The findings so far are not rigorous and so we are awaiting results from the large, controlled trials underway across the world.
On the 24th April the European League against Rheumatism (EULAR) published a press release regarding a study examining COVID-19 in people with SLE. EULAR Past-President Professor Johannes W. Bijlsma commented, “Our preliminary conclusion, based on the observation that most of the SLE patients in this study received long-term treatment with hydroxychloroquine, having blood concentrations of the drug within therapeutic range, is that hydroxychloroquine does not seem to prevent COVID-19, at least its severe forms, in patients with SLE.”
Despite the lack of current evidence to support its use in the treatment of COVID-19 the US Food and Drug Administration (FDA) has now approved chloroquine and hydroxychloroquine for “emergency use” in COVID-19 patients admitted to hospital in the USA. The European Medicines Agency has also declared these compounds can be used as part of ’emergency use programmes’ as well as clinical trials.
The UK Medicines and Healthcare products Regulatory Agency (MRHA) has published guidance stating, “Chloroquine and hydroxychloroquine are not licensed to treat COVID-19 related symptoms or prevent infection…Until we have clear, definitive evidence these treatments are safe and effective for the treatment of COVID-19, they should only be used for this purpose within a clinical trial.”
What action is being taken to ensure a stable supply of hydroxychloroquine for people with lupus?
We don’t yet know how effective hydroxychloroquine might be against COVID-19. What we do know, is that if people with lupus who have been prescribed hydroxychloroquine stop taking this medication, their disease could flare. This can in itself be a life-threatening situation, unnecessarily burdening the health service, but it also increases the vulnerability of already at-risk patients to COVID-19 infection.
Given this, we have acted early and written to the Secretary of State for Health and Social Care and the Chief Pharmaceutical Officer with other member of RAIRDA, asking them to ensure that the supply of hydroxychloroquine to patients remains secure and to look into how we can make this supply even more robust in the coming months.
On the 24th March 2020 Daniel Zeichner MP submitted a written question to the Department of Health & Social Care;
“To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure a robust supply of hydroxychloroquine to patients reliant on that medication to manage (a) lupus, (b) scleroderma, (c) rheumatoid arthritis and (d) other serious autoimmune rheumatic conditions during the covid-19 pandemic.”
On 27th April 2020 RAIRDA received a response from the Chief Pharmaceutical Officer for England, Dr Keith Ridge CBE. You can read the response in full HERE. We are pleased to see that precautions are being taken to prevent further shortages:
“NHS England and NHS Improvement are working closely with the Department for Health and Social Care, industry and others in the supply chain to help ensure patients can access the medicines they need, including hydroxychloroquine, and precautions are in place to reduce the likelihood of any shortage…I am working closely with pharmacists and GPs to support this message and restrict prescriptions and supply to those with current clinical need for licensed indications or as part of a clinical trial.”
Reassurances have also been provided by Vaughan Gething AM, Minister for Health and Social Services in Wales. You can read his full letter HERE.
“The Medicines and Healthcare products Regulatory Agency has advised prescribers that hydroxychloroquine must not be used for treatment of COVID-19 outside clinical trials, and the Royal Pharmaceutical Society has advised pharmacists that they should not dispense private prescriptions for this medicine unless it is for a patient using it for lupus or other pre-existing conditions.
Arrangements are in place for wholesalers to alert the UK Government to unusual ordering patterns for all medicines and in particular those which may be affected by COVID-19.”
What should I do if my pharmacy doesn’t have any hydroxychloroquine?
In March 2020 many people with lupus in the UK experienced difficulty with fulfilling their prescriptions for hydroxychloroquine. This has been attributed to a short-term increase in demand which exhausted stocks in some regional depots. Our understanding is that this problem has now been resolved.
If you have been told by your pharmacy that they do not currently have any hydroxychloroquine tablets available, you could try asking other local pharmacies in your area (it is probably best phoning them rather than making the journey).
If you have an electronic prescription you can request a change to your nominated pharmacy to have it dispensed by one with the tablets in stock. If you decide to do this, please be aware that it will also affect any other regular prescription items.
If you wish to collect your medication from a different pharmacy as a ‘one-off” you will need to contact your medical team and request that your prescription is re-issued as a physical form which will allow you to collect your items from a different pharmacy. If you are shielding and do not have a friend or family member who can assist you with collecting your prescription/medication, please contact your local council for information about voluntary services in your area who can help.
We have had reassurance from Blackrock Pharmaceuticals and Zentiva that they have adequate stock available and more supplies are continuing to enter the market. We have, as yet, been unable to confirm this with Bristol Laboratories. If you are struggling to obtain a specific version of this generic medication, please take a look at our guidance HERE.
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.
No person with a rheumatological condition, such as lupus, should attempt to stockpile hydroxychloroquine. Such actions would be counterproductive and could contribute to a completely artificial shortage affecting other people with the disease.
If you have experienced difficulty obtaining hydroxychloroquine, please Contact Us.
We will share more information as the situation develops.