The Rich people’s disease: Lupus and the health burdens of autoimmune diseases in Uganda

By Mpagi Derrick

The article shares experiences of people with autoimmune diseases in Uganda, before and after diagnosis, especially their health burdens, which are mainly caused by delayed diagnoses of the first autoimmune disease.

For example, an autoimmune disease like Systemic Lupus Erythematosus (SLE)/lupus develops into, among others, a second autoimmune disease called lupus nephritis in 60% of people with the disease, which, if not managed, causes kidney failure. Therefore, increasing the financial burden on people with lupus in Uganda, since they have to manage three health conditions.

The article further suggests a solution in the lupus and autoimmune clinic and also shares the importance of this clinic in the country, since it will provide Ugandans with an early diagnosis and management of first autoimmune diseases like lupus in order to avoid secondary multiple health conditions like lupus nephritis and kidney failure, which develop if lupus or other autoimmune diseases are not diagnosed early and managed by a medical professional trained to treat/manage autoimmune diseases.

On this note, we kindly request you to support our lupus and autoimmune clinic fundraiser below so that we may establish this clinic in Kampala, Uganda.

What are autoimmune diseases?

Autoimmune diseases are chronic (long-term) or non-chronic diseases/conditions where your immune system mistakenly attacks your own body’s healthy cells and tissues, like the heart, liver, kidneys, eyes, and skin, among others, causing inflammation and damage.

This means that the immunity has developed a problem of not being able to differentiate between bacteria or viruses in your body and your healthy body cells/organs, and as a result it attacks your healthy cells just like bacteria or viruses.

Autoimmune diseases include SLE/lupus (a long-term or chronic autoimmune disease that is the leading cause of kidney failure globally), autoimmune epilepsy, autoimmune dementia, hepatitis, rheumatoid arthritis, juvenile rheumatoid arthritis, psoriasis, polymyositis, celiac disease, Mixed Connective Tissue Disease (MCTD), and autoimmune vascular dementia, among others.

These diseases, more than 85 known diseases, increase the risk of developing other autoimmune diseases, Alzheimer’s, a subtype of dementia, cardiovascular disease (diseases of the heart and blood vessels), cancer, and severe infections.

Worth noting is that lupus and autoimmune diseases are managed by a rheumatologist globally with the support of doctors and other health professionals focused on managing (chronic) or treating (non-chronic) autoimmune diseases.

The problem

Sadly, people who develop these diseases in Uganda end up paying large sums of money needed to manage them.

For instance, at the very least $5,000 – $155,000 (approximately UGX19 million – UGX558 million) in medical-related fees is required to cover travel costs of the patient outside the country for better medical assistance, monthly medical consultation charges, surgeries, daily medications, food, and hospital costs, among other expenses charged against them during their travels.

Money that most Ugandans do not have; therefore, in the opinion of most people within the country, these are rich people’s diseases.

In my case, I have spent at least $7,000 (approximately UGX25,500,000) to date in order to be diagnosed and manage my autoimmune diseases, which include SLE/lupus, rheumatoid arthritis, juvenile rheumatoid arthritis, and epilepsy, from both Uganda and Kenya.

Some of my friends have spent at least $5,500 (approximately UGX20 million) per day to receive surgery and treatment for heart failure; others needed at least 6 million per day to access treatment for SLE/lupus or at least 150,000/= (approximately $41) bi-weekly at public hospitals to access dialysis within the country and at least $150,000 (approximately UGX540 million) to access treatment and surgery for liver disease.

It’s also worth noting that all the above costs exclude the extra medical expenses for long-term medications, changes in diet and lifestyle, and high monthly medical consultation fees that continue to burn through the patient’s finances and the finances of their support networks and family, especially in private hospitals where consultation fees range between 60,000 and 200,000 Uganda Shillings (approximately $16 – $55). Expenses that are needed for the effective management of the chronic/long-term autoimmune disease(s).

How is a Ugandan, regardless of status, going to meet such huge sums of money, especially in a situation where Ugandans lack awareness about autoimmune diseases; medical experts that manage or treat these diseases; causes of autoimmune diseases like genetics and environmental triggers; and the clinics that manage autoimmune diseases within public and private hospitals within the country?

In most lucky cases, the only awareness Ugandans get is when they are suffering with an unknown autoimmune disease that has caused or causes an organ disease that requires vast sums of money to manage. At this point in time, many Ugandans have to make that tough decision about “what can be afforded and what sacrifices need to be made” for your health or a family member or friend experiencing this unfortunate turn of events in their life.

With such challenges as above, individual finances are exhausted, patients and their caregivers suffer from poor mental health, lose friends and jobs, and are further stigmatized and discriminated against, families break up, health insurance is exhausted, and in many cases insurance cannot be accessed; public fundraisers come short given the number of similar fundraisers started and, in addition, due to the lack of wealthy friends within fundraising networks.

Finally, the above challenges led most that cannot afford expensive healthcare costs to resort to isolation and unsuccessful treatments like prayer, spiritualism, ancestral beliefs, unverified herbal medicines, or medical misdiagnoses (untested/non-confirmed diagnoses) that in some cases led to unnecessary visible disability, including amputation, as sources of comfort during such tough times in patients’ lives.

Needless treatments that have time and time again proved to be ineffective, expensive, and worse for the person with an autoimmune disease.

Indeed, it’s a grim world for the poor, middle class, and the rich, who are required to jump from zero (0) individual medical fees per day (or at most $16, approximately UGX60,000, every 6 months) to at least UGX540 million ($0 to $150,000) in the space of a day after diagnosis. Mind you, at this moment and regardless of your status, all that goes through your mind is, “How did it get to this point? How can it be this bad?”

Solution: Lupus & autoimmune clinic

What if I told you that autoimmune diseases do not have to be this expensive? Furthermore, what if I also told you that they are only this expensive/for the rich partly because of the following:

1. Late diagnosis, especially after the disease has caused severe inflammation and damage to the body, thence requiring expensive procedures and medications needed to manage both the disease or multiple diseases and, among others kidney, liver or heart disease.
2. Inability to afford monthly or bi- or tri-monthly medical consultations.
3. Our lack of knowledge about what disease we are living with, which clinic specializes in the disease, and who diagnoses and manages it, finally.
4. A complex healthcare system that needs to be simplified so that patients and their loved ones may know which clinic and medical expert to access in cases of unknown diseases or conditions, like autoimmune diseases, and which early signs and symptoms they need to look out for or tests that need to be done to identify autoimmune diseases early.

Challenges that a lupus and autoimmune clinic would address by providing the following:

1. Cheaper consultation fees at only UGX20,000 ($5.50) for people with lupus and/or autoimmune diseases, so that they may access early diagnosis and further effectively manage their diseases through cheaper monthly or bi or tri-monthly medical consultations;
2. Awareness raising about lupus and autoimmune diseases within the country, through the clinic that specializes in managing lupus and autoimmune diseases, and by raising awareness about the medical expert who diagnoses and manages lupus and autoimmune diseases;
3. A second opinion for people with autoimmune diseases, whether known or unknown. Thereby providing an opinion that will save many unsuspecting Ugandans from misdiagnosis and exploitation caused by fraudulent religious, spiritual or demonic explanations that are used to explain many autoimmune diseases; and finally,
4. A simplified health system that publicly exposes a key clinic within the healthcare system that is a major disease prevention center that people need to know about and access at a cheaper price so as to avoid poverty.

Worth stating is that this clinic does not yet exist in Kampala, Uganda today, therefore we kindly request you to support our lupus & autoimmune clinic fundraiser by donating at least 5,000/= (for international donors, $10 or more, including global charges) or more so that we may establish this clinic in Kampala, Uganda, with the support of our rheumatologist and doctors interested in autoimmune diseases.

In total, we are looking for at least 3,700 donors contributing at least 5,000/= so that we may meet our minimum target of $5,000 that is required to start the clinic. Hence, your contribution will greatly be appreciated and will save many Ugandans from poverty and the above challenges.

At scale, this clinic will also offer cheap medical services provided by other medical experts, including a neurologist, cardiologist, nephrologists, pediatrician, and researchers, among others. So, please kindly join us as we take this first major step together in order to strengthen the healthcare system within our country.

Lastly, please send your donation of 5,000/= or more to the mobile phone numbers below (or as seen in the fundraising poster below) for this initiative

1. (+256) 0774544242 (MTN)
2. (+256) 0750799705 (Airtel)

For more information about lupus in Uganda, please watch our lupus documentary below

https://youtu.be/qlJ4-9onyR0?si=lPM-GEEPbdcqwRVC

Mr. Mpagi Derrick is the co-founder and program manager at Might Foundation