When the UK government ordered the public to stay at home and protect the NHS, everyone’s number one concern was to contain and prevent the spread of the deadly coronavirus. For the masses, this was their only concern however, this is not the case for around 50,000 people in the UK living with the autoimmune disease lupus.
After president Trumps recent comments on his personal use of Hydroxychloroquine as an unproven medication to treat covid-19, the world has rushed to get their supplies of the drug. A shortage of the drug ensued. With hydroxychloroquine being the most commonly used drug among lupus patients, the president’s actions have left people living with lupus in a difficult position.
The covid-19 Global Rheumatology Alliance, founded to collect information on the effects of the infection of people with lupus, published a press release that states: “There is an urgent need to understand the outcome of patients who have been infected with SARS-CoV-2 (Covid-19) while the same time receiving steroids, synthetic or biological disease-modifying anti- rheumatic drugs and nonsteroidal anti-inflammatory drugs.”
World lupus awareness day has fallen during the covid-19 pandemic and it is a knock on the head for many people as it’s a reminder that there are those of us who have been battling more than one deadly disease during these tough times.
What’s it like to live with 2 incurable diseases?
What is lupus?
Lupus is an autoimmune health condition which means the immune system attacks its own body, mistaking the body’s tissue as invaders and attacks them. There is currently no known cure however, in most cases lupus is manageable through medication.
The disease commonly affects women between the ages of 14 and 25 although men and children can develop the disease. With a ratio of nine women to one man diagnosed, there is an estimated 50,000 people in the UK who are living with lupus.
There is no single cause of the disease and it is hard to diagnose with signs and symptoms varying over time, sometimes overlapping with other symptoms. Lupus is most commonly seen in people of Afro-Caribbean, Asian and Hispanic heritage.
What does the Hydroxychloroquine shortage mean for lupus patients?
The anti-malaria drug helps with conditions like rheumatoid arthritis which is a condition often linked with lupus. The problem for lupus patients is the drug is also being trialled as a potential treatment for coronavirus which resulted in a sudden increase in purchasing and a spike in demand resulting in shortages.
According to Lupus UK the medication is taken by approximately 90% of lupus patients to control their condition.
The 45th president’s comments are being felt by the health industry and patients. “Since Donald Trump put himself on it the world went mad after hydroxychloroquine and surgeries couldn’t get supplies and lupus people couldn’t get their supplies.” Says the east midlands coordinator. “chemists had to ring around to find supplies to deal with lupus people that were on it.”
There is currently no evidence that shows hydroxychloroquine is an effective treatment for the virus, but it is one of the drugs being tested along with drugs used to treat HIV at University of Oxford trials.
The UK medicines and Healthcare products Regulatory Agency stated, “Chloroquine and hydroxychloroquine are not licensed to treat COVID-19 related symptoms or prevent infection.” Says the agency. “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.”
Despite this, demand for hydroxychloroquine increased in April, prompting the UK government to spend nearly £20m for the malaria drug.
What is life living with lupus?
Imagine going to the doctors with aching joints and being told by different doctors to take painkillers then, one day being diagnosed with an incurable autoimmune disease. Now imagine it taking ten years to diagnose this. This is the reality of many people diagnosed with lupus.
This was the reality of Gill Woodford, regional coordinator of Lupus UK east midlands who is currently living with lupus: “The worst thing of all is it took 10 years to get my lupus diagnosed,” says Gill. Much of the problems that surround lupus is the difficulty in diagnosing the condition. “I was 24 when I got diagnosed now, I’m 74 and in that time there’s a lot of suffering that goes on.”
Lupus causes many complications which can vary from patient to patient and, in the most severe cases, can even lead to death. “I struggled with it for 10 years, it then progressed to my lungs then to my heart which resulted in pericarditis effusion” Gill says. My relatives were told I wouldn’t survive and I’m here 50 years on.”
What does the future look like for lupus patients?
Living with lupus presents so a multitude of problems and when a deadly disease that also incurable is around, it makes. Now more than ever awareness of people living with lupus is needed.
“we need to get the message across there’s a condition called lupus because the worst things is it takes too long to get lupus diagnosed.” Mrs Woodford says. “50 years on the average time it takes to diagnose lupus is 6.7 years and it’s because the symptoms are hard to link to lupus.”
“It is often young women who’s had a young child recently and doctors often put it down to post-natal depression.”
With world lupus awareness day just past we must not forget there are people suffering from life threatening diseases as well as fighting coronavirus.