Madhu Pai, Professor and Canada Research Chair of Epidemiology and Global Health at McGill University wrote about the “covidization” of research and every aspect of development, meaning everyone has focused research, funding and attention on COVID-19.
Indeed COVID-19 is taking away focus from other infectious diseases. For example, in the third week of 2021, the US Foods and Drugs Administration approved the first long-acting drug combo for HIV, which would mean monthly injections that can replace daily pills. This game-changing innovation was hardly celebrated.
Effects of Covid focus on NTDs, particularly leprosy
If this can happen to HIV – one of the “big 3” infectious diseases (others are malaria and tuberculosis), imagine the fate of diseases that were already branded as “neglected” in the pre-COVID-19 era, the Neglected Tropical Diseases (NTDs).
These diseases, such as leprosy, river blindness, trachoma, schistosomiasis, rabies, and guinea worm, are debilitating and disfiguring illnesses that predominantly affect poor people who do not have access to healthcare and other social amenities, such as clean water and good sanitation. About 1.7 billion of the world’s poorest people across Latin America, Africa, and Asia, are affected by NTDs.
Some NTDs are more neglected than others. I consider leprosy as one of the most neglected, and that must change, regardless of Covid-19. We cannot wait. The Leprosy Mission Nigeria reports that the pandemic has affected the ability of those living with leprosy to provide for their families and support each other.
Between 2 million and 3 million people globally still live with leprosy. Every year more cases appear, particularly in poverty-stricken areas without access to clean water and good sanitation.
In 2018, the World Health Organization reported that there were 208,619 new cases of leprosy globally. Those infected by leprosy typically do not have access to healthcare services to enable early diagnosis and thus they can develop lifelong irreversible nerve damage and body deformities.
People living with leprosy can step on sharp objects without realising it because of the loss of sensation. Such injuries lead to ulcers that are hard to treat and may end in the amputation of limbs. Facial and limb deformities, once they occur, are lifelong – those living with leprosy face stigma and are typically ostracized in leprosy camps (leprosariums).
For the uninformed, it is hard to believe that people still live with leprosy. Commemorations like World Leprosy Day in late January aim to raise awareness, but we must go beyond awareness-raising to end the neglect of leprosy. This is how.
How to end neglect of leprosy
First, focus on the prevention of leprosy by increasing access to early diagnoses and initiation of treatment before deformities occur.
Major risk factors for leprosy are lack of access to primary healthcare and social determinants of health – clean water, good sanitation, etc. Universal health coverage is a sure way of preventing the disease – it can provide a timely diagnosis for those in the early stages of leprosy, initiate treatment, and link those already suffering from deformities to rehabilitative and palliative care.
Second, integrate people living with and affected by leprosy into society. It is unconscionable to still be keeping them in leprosy camps in the 21st century. Seven years ago, I was community health grant-making lead at the TY Danjuma Foundation.
The Foundation funded The Leprosy Mission Nigeria to conduct medical outreaches in poor communities for early diagnoses of leprosy, as well as providing healthcare and economic support to those already living with the disease. That experience was a journey into understanding the neglect they experience.
I visited the leprosy village in Gusau, Zamfara state, northwest Nigeria. It was in squalor and the residents had limited access to clean water. One can imagine the stigma residents face when they mention that they live in a leprosy camp. Governments across Africa must declare leprosy camps as inhumane and ensure people living with and affected by leprosy are no longer ostracized. They deserve to live among everyone else.
Third, government and civil society organisations intervening in leprosy control must intensify health education to help people understand what causes leprosy, the importance of seeking care early and why no one should be discriminated against because they live with or are affected by leprosy. Part of the health education must include that beginning free treatment means they are no longer infectious and pose no danger to anyone.
People should be educated to use the right terms in describing those infected and their families. The correct descriptions are: “people living with leprosy” for those infected; and “people affected by leprosy” to describe families and relations. No one should use the word “leper” to describe people living with leprosy because it is discriminatory and perpetuates wrong perceptions about leprosy.
Fourth, use technology to modernize the manufacture of prostheses for those living with leprosy and increase quantities produced. For instance, 3D printing can be used to reduce the cost of production of prostheses.
Sadly, most prostheses for people living with leprosy are still archaic and not very functional. The use of 3D printing is a cost-effective way of printing foot, leg and hand prostheses. According to the Amputee Coalition, a 3D printed prosthesis could be made for as little as $50 while a prosthetic hand produced otherwise can cost thousands of dollars. When manufactured in large quantities, the cost of 3D will reduce.
We must not get so focused on COVID-19 that we lose sight of other diseases like leprosy.