Living with lupus in a coronavirus world, why more help is needed now than ever before

Once again, World Lupus Day has arrived.

Each year on May 10, global citizens rally in observance of the World Lupus Day.

The annual celebrations have in the past serves to rally lupus organizations and people affected by the disease around the world for a common purpose of securing greater attention and resources to end the suffering caused by this disabling and potentially fatal autoimmune disease.

Calls have been made during the celebrations over the years to extend greater financial and healthcare supports to persons battling the disease.

And this year, more than ever before, the need for supporting persons living with Lupus has become compelling, as the world battles coronavirus, a disease that poses even greater risk and health challenges to people suffering Lupus.

Awareness events for World Lupus Day are held in most places around the world yearly, including, North & South America, Europe, Africa, Asia and Australia.

The celebrations may vary between nations but they have a common goal.

Usually, activities in Africa promoting this day have been focused in the Republic of Mauritius.

The activities include distributing awareness posters, selling silver jewelry in the shape of the lupus group logo ('Wings of Hope'), selling Lupus Alert UV Sun protective umbrellas and educating the media on lupus and how they help raise awareness.

But in the midst of over 3.9 million cases of the novel coronavirus worldwide, including at least 274,000 deaths, according to Johns Hopkins University, observing the World Lupus Day in 2020, could take a different turn, especially in the wake of strict restrictions on public gatherings and social distancing measures in most countries where the celebrations take place annually.

What is Lupus?

Systemic Lupus Erythematosus (SLE - commonly known as lupus), is a chronic disease without a known cause and no cure.

Being diagnosed with this condition is disheartening and there are no words to describe the feeling of being helpless because you are diagnosed with a disease that you have never heard of or read about, says S'Kay Magagane, author and co-founder of Lupus Foundation of South Africa.

Why Are Lupus Patients At High Risk of Covid-19?

According to the Lupus Foundation of America, Lupus is a chronic autoimmune disease — that means that the immune system is dysfunctional and attacks one's healthy tissue.

The Foundation believes this can make the immune system less effective at fighting infections.

"Medications that suppress the immune system — which people with lupus often take — can also limit their body’s ability to respond to infections," according to the Foundation.

"As a result, people with lupus are less able to fight off bacteria and viruses, like COVID-19. When people with lupus do get sick their illness may also trigger a lupus flare," it says.

"People with lupus may also have other conditions that put them at higher risk for serious illness from coronavirus such as diabetes, cardiovascular disease, kidney disease, and a weakened immune system, The Lupus Foundation of America wrote on its website.

Lupus Cases Globally

Worldwide, it is estimated that some five million people are suffering from Lupus, with several others already losing their lives because of the disease.

About 1.5 million of those are believed to be in America.

Lupus Cases in Ghana

Dr. Dzifa Dey, a Rheumatologist at the Korle Bu Teaching Hospital, a few months back, bemoaned that Lupus disease was becoming a worrying medical concern in Ghana.

Lupus, according to research, affects nine times more women of childbearing age than men and it is considered as an emerging threat to African women and girls.

A University of Ghana report reveals that there was a total of 134 lupus patients diagnosed between January 2014 and January 2017 in Ghana, with Dorcas Asanoa Agbleenee Tandoh, a former lecturer at the Wisconsin University, Accra, being one of those to have died from the disease in Ghana.

The disease is believed to be severed among persons of African descent.

In 2017, Ghana's Ministry of Health legitimized lupus as a serious public health concern by ratifying the World Lupus Day Proclamation.

Executive Director of the OYEMAN Autoimmune Foundation, one of the organizations championing the cause of Lupus patients in Ghana, Emma Wilhelmina Halm Danso, has expressed the hope that policymakers and stakeholders in Ghana "will enact the relevant policies that will support people with autoimmune diseases such as lupus."

Challenging Times

Several testimonies from Lupus patients and doctors show that it is a daunting task living with Lupus.

And the year 2020, poses even greater challenges for Lupus patients.

Sufferers of lupus this year more than ever before have had difficulties getting hold of their lifesaving medication amid claims it could be used in the fight against coronavirus.

At least 90 per cent of lupus sufferers in the UK are on hydroxychloroquine, an anti-malaria drug that is undergoing clinical trials as a potential treatment for COVID-19, according to a report by Euronews.

Outrageous Prices

Mrs Halm Danso says hydroxychloroquine has become unreasonably expensive in Ghana in the wake of the pandemic.

She says the generic hydroxychloroquine which could be gotten for ghc 60 is now being sold Ghc 1000 by some pharmacies in Accra.

"And it's been so difficult, the prices are so ridiculous and patients are in dire need of hydroxychloroquine," she says, adding that "the lack of regulations is so disheartening."

Mrs. Halm Danso spends an estimated Ghc 1500 monthly on Lupus medications, excluding laboratory tests and medical consultations.

Mass unemployment, funding challenges and Lupus treatment

There is no cure for Lupus and patients live on drugs until their death.

Treatment for Lupus is costly, and especially so in a time we are currently in, where millions of people are losing their jobs and businesses are collapsing, making it extremely difficult for Lupus patients to even raise funds for regular treatment.

To be sure, the United States economy alone, according to a CNN report, has lost a record 20.5 million jobs in April, marking the largest single month of job losses since officials began tracking the data.

Also, due to the coronavirus, Canada has recorded the second-highest unemployment rate in its history.

About 48% of lupus patients, Dr Dey says, die annually in Ghana due to improper treatment, and late diagnosis.

She says lupus is not curable but could be managed very well, of course at a high financial cost, something which is obviously hard to come by these days due to the crisis we are living in.

Cost of Treatment

Dr Dey had earlier called for the need to ensure that patients have proper treatment.

"The cost of diagnosing and treatment is really expensive," she says, bemoaning that a lot of patients do not return to the hospital when they are given the cost of the lab because they cannot afford it.

On the National Health Insurance Scheme, she says even basic medications are not made available to lupus patients, something she feels is unfortunate and challenging.

Some patients, she says, spend on average GH¢ 3,000 for just a single medication to keep the immune system working.

The Lupus Foundation of America estimates that Lupus treatment and care costs the US some $31.4 billion in both direct and indirect expenditures.

According to the Foundation, the average cost per person with Lupus is $20,000 while that of a patient with Lupus and kidney disease is $63,000.

What is being done?

The Lupus Foundation of America is so far helping Americans living with Lupus, with personal protective Equipment like face masks.

Also, the COVID-19 Global Rheumatology Alliance has created a secure, de-identified, international case reporting registry to collect information pertinent to COVID19 infection in patients with rheumatologic disease.

The Lupus Foundation of America says it supports the goals of the COVID-19 Global Rheumatology Alliance.

The Lupus Foundation of America supports continued research to investigate the potential use of hydroxychloroquine for COVID-19, but it is imperative to preserve access to this medication for people with lupus whose lives depend on it, it urged.

Moreover, we also support the continued investigation of hydroxychloroquine in hospitalized patients with COVID-19, but there currently are no data to recommend the use of hydroxychloroquine as a preventive measure against the virus, the Foundation says.

Ms. Halm Danso, an autoimmune patient herself, says "helping autoimmune patients is more than providing them with medications. This is because it affects the totality of our lifestyles – work loss, self-isolation, loss of socialization skills among others. It has physical, spiritual, mental, financial impact on patients, families and organizations that we can no longer be indifferent about."

National registry needed in Ghana

At the Ghana country level, the Executive Director of OYEMAM Autoimmune Foundation says "OYEMAN believes Ghana needs a national Lupus patient registry to collect data to identify the incidence and prevalence of the disease and the burden of the disease in the nation."

"In light of this OYEMAM Autoimmune Foundation will continue to pursue its objectives some of which are to promote education and public awareness of autoimmune disorders, provide medication assistance as well as other healthcare support to autoimmune patients," she assured.

According to her, "furthermore we are striving through our advocacy to generate broad spectrum support for autoimmune healthcare in Ghana. OYEMAM is calling for:

the establishment a National Commission on Autoimmune Disorders and Diseases; the establishment of a centre for diagnosis and treatment of autoimmune disorders;

the establishment of a scholarship scheme to support the training of autoimmune medical specialists such as rheumatologists;

currently there are only two rheumatologists in Ghana serving a population of about 30 million."