Experts, Health News, ET HealthWorld
By Nisha Kumari
New Delhi: Leprosy has often been reported as one of the most stigmatized diseases, however, the elimination of leprosy as a public health problem was reached at the global level in the year 2000 and by India on December 31, 2005. The elimination announcement of leprosy may have halted the progress for a while leading to the spread of the disease.
Despite India being declared ‘leprosy-free’ in 2005, the country still accounts for over half (almost 66 per cent) of the world’s new leprosy patients. According to the World Health Organization (WHO) report titled ‘Supporting leprosy elimination in the country,’ the prevalence rate of leprosy is 0.4 per 10,000 population in the country.
The above proclamation means that leprosy was not eliminated. Now, the country is facing new treatment complications such as some former patients who had multidrug therapy (MDT) long ago are now facing relapses, while other patients are not responding to the regular drugs. Re-transmission of the bacterium is still poorly understood.
Dr Saranya Narayan, Chief Technical Director, Microbiologist, Neuberg Diagnostics, said, “The reason there is a relapse in leprosy are numerous: could be there are bacilli that persist despite treatment, single-drug therapy instead of multi-drug treatment, inadequate or irregular treatment, discontinuation of treatment thinking a cure has been reached, inaccessibility to medication, multiple skin and nerve lesions.”
Whilst the country was tackling a resurgence of leprosy cases, the COVID-19 pandemic hit, and lockdowns were instituted. Imposing an additional toll on patients suffering from leprosy, as detection, treatment, and rehabilitative services were severely disrupted.
COVID-19 impact on leprosy
Post the 2005 declaration of ‘leprosy-free’ India, most of the leprosy resources were redirected to other health priorities. Conversing with ETHealthworld, Dr S Ananth Reddy, Chief Administrator & Chief Medical Officer, Sivananda Rehabilitation Home, said, “Most of the leprosy programs before COVID were vertical programmes, later it got integrated into the health services. Previously leprosy work was done by deputy para-medicals, para-medicals, later auxiliary nurse midwives (ANMs), and Accredited Social Health Activists (ASHA) were involved. Treatment was available at hospitals but the movement was restricted.
Relocation of resources during the pandemic has also affected leprosy treatment, Dr Narayan added, “The pandemic had many spin-offs, the reduction in detection of new cases, access to MDT drugs was limited, access to medical care was limited, reassignment of staff in govt centers to COVID work, and cessation of awareness and other community programs.”
Another indication of COVID-19’s impact on leprosy screening in India is the sharp reduction in the number of new leprosy cases detected. In 2019-2020, during the year before the pandemic, 114,451 new cases were recorded, according to the government’s official count. Dr Premal Das, Executive Director, The Leprosy Mission Trust India, said, “As voluntary reporting and active cases were almost non-existent the number of leprosy cases dropped to less than 50 per cent. Elective surgery for deformity correction was also not being done. COVID was an emergency, but leprosy was not. Hence the priority was tackled.
On a positive note, ulcer cases were significantly reduced in leprosy patients. Dr Das added, “Ulcer cases were significantly reduced as migrants returned home to work in the fields, more hands to work in small land holdings, hence no need for those with disabilities to work in the field. The restrictions in movement meant less ambulation, which meant more rest, which translated into fewer ulcers.”
But the pandemic was not the only reason why leprosy cases persisted.
India began administering a 3-drug regimen of rifampicin, dapsone, and clofazimine to leprosy patients in 1982 which was approved by the WHO in 1984. But the availability took more than a decade before leprosy-endemic countries received the treatment without cost. The WHO also recommends clofazimine in treating multi-drug-resistant tuberculosis (TB). Clofazimine is one of the three essential drugs used in the multi-drug treatment of multibacillary leprosy cases along with rifampicin and dapsone. However, in 2022, hospitals across the country faced an acute shortage of clofazimine for months.
Sharing her views on the shortage of clofazimine, Dr Narayan said, “The shortage existed in the private sector and not in the government sector. As many patients prefer going to private doctors for treatment, this had a huge impact. The reason why it was not available freely is not known. Clofazimine is one of the drugs used in multi-drug regimens for leprosy along with dapsone & rifampicin. Without clofazimine- costs increase, and the lepra reaction becomes very painful. Despite 66 percent of cases from India, the drug is still not yet available here.”
Media, government negligence
In the last few decades, the way the government handled polio awareness programs, similarly leprosy wasn’t given enough priority. Dr Reddy said, “Because of less funding, the government is not spending much, but this is for everyone to understand not just the government, often advertisements done by the media and the government are not fairly reaching the villagers. Even if television (TV) and the internet are available, most people do not watch Doordarshan and Prasar Bharti. Nowadays channels are interconnected with other channels, hence they need to take care of it. Lack of funding is another reason behind this lag. Even FM radios do not carry these messages.
Generating awareness will reduce stigma, discrimination
The theme for this year’s Leprosy Day is ‘Act Now’. End Leprosy’. Lack of awareness, myths, sociocultural beliefs, and the stigma attached to leprosy is perhaps the most pressing problem before public health professionals today. Intensive information, education and communication (IEC) activities and counselling, are being conducted by the present government under the National Leprosy Eradication Program (NLEP) 2020-2021, generating awareness which will help in the reduction of stigma and discrimination associated with persons affected by leprosy.
Dr Vijaya Gowri Bandaru, Visiting Consultant, Dermatology, Sakra World Hospital, Bengaluru, said “Counseling teams help to manage the patients and inform them about contracting or managing leprosy. The rehab centers also help to combat the deformities in patients and make them well aware of them. By 2030, the WHO targets a 70 per cent reduction in the annual number of new cases detected and a 90 per cent reduction in the rate per million population of new cases with grade-2 disability (G2D).”
Dr Reddy opined that leprosy is both a systemic and social problem, “Most of the time elderly neglect the disease, and do not address the issue at a broader level. Hence before advertising, the government should include leprosy at the school level from the fifth standard itself. Children must be aware of the disease at an early age.”
As Mother Teresa once stated, “The biggest disease today is not leprosy or tuberculosis, but rather the feeling of being unwanted.” For India to become leprosy free a collective, inclusive approach is needed. There is also an urgent need to spread awareness due to the stigma associated with the disease that percolates to the poorest strata of the nation.