Monthly Archives: April 2020

Advice on leprosy and COVID-19

Written by the ITC in conjunction with WHO (Available as PDF in English and French)

General comments

➢ The key preventive measures are handwashing with soap and water, and social distancing
➢ Follow your own government’s advice about travel, work and social gatherings
➢ Anyone with respiratory symptoms should stay at home and phone for health advice
➢ At present, there is no indication of any specific interaction between leprosy and COVID-19.

Diagnosis and clinical management of leprosy patients

➢ WHO recommends that community-based programmes and active case-finding activities be postponed until further notice; this includes contact tracing and chemoprophylaxis.
Clinic-based patient care, including diagnosis and case management should continue, with careful attention to handwashing and the use of face-masks, by both health staff and patients. MDT supplies may be given for 2-3 months, to reduce attendance at the clinic.
➢ Non-urgent interventions such as reconstructive surgery can be postponed.
➢ Nerve function assessment should continue to be done every three months for patients on MDT, to reduce the risk of future disability. Treatment of reactions should continue.
Steroids should be given to leprosy patients when indicated to treat neuritis. Steroids are immunosuppressive drugs, so may increase susceptibility to COVID-19, especially when used over several years for chronic diseases, such as rheumatoid arthritis. This effect is related to the dose and duration of the steroids given, so the typical 20-week course of prednisolone given in leprosy is considered safe. Anyone with a cough would normally be investigated for tuberculosis before starting steroids, so, similarly, steroid treatment may be delayed for 2-3 weeks in anyone with symptoms suggesting COVID-19. A few patients with ENL require steroids for a longer period; in these difficult cases, the benefit from the steroids will usually outweigh the small increase in the risk of acquiring COVID-19.
➢ If possible, contact patients on corticosteroid treatment by phone or through social media to ensure they are taking all possible precautions against COVID-19.

Public health aspects of leprosy in the COVID-19 pandemic

When epidemics or pandemics occur, poor people, including those affected by leprosy, are usually affected disproportionately. Measures that help to control a pandemic, such as movement restriction and closure of workplaces, generally have a serious negative impact on vulnerable groups. They can also cause social unrest and lead to loss of income for individuals and families.

➢ Special attention should be given to reaching vulnerable people when communicating measures advised by the government to mitigate the risk of COVID-19. An effort should be made to reach people affected by leprosy using multiple media channels such as mobile phone, radio, pamphlets and posters.
Making clean water available is always important and especially now to ensure people can take appropriate preventive actions and take care of their sick relatives. Access to health services has to be guaranteed to the extent possible in an equitable manner.
➢ It is crucial that MDT stocks are properly managed, distribution of MDT continues and that MDT orders are placed on time.
Avoid all non-urgent hospital consultations and admissions that can be postponed in facilities that attend to and admit COVID-19 patients to minimize the risk of leprosy patients becoming infected. Community- or home-based care would then be preferred.

Services for persons living with disabilities and/or psychosocial consequences of leprosy

Persons affected by leprosy, especially those with leprosy-related disabilities, may face stigma leading to social exclusion and poor mental well-being. Social exclusion often aggravates existing poverty, social inequalities and other vulnerabilities. A substantial proportion of persons affected suffer from common mental health conditions, such as depression and anxiety. Where such services are available, persons affected may be helped through socio-economic rehabilitation services, self-care or self-help groups, peer counselling and community mental health services. Often these involve meeting in groups and/or close, face-to-face contact with peers or care givers.

The key COVID-19 control measures like social distancing, self-isolation and prohibition to meet in groups directly interfere with the above services and interventions. This may directly affect the livelihood of persons affected, their ability to carry out effective prevention of disability activities and activities to work on building resilience and overcoming mental health problems. They may also increase social exclusion and loneliness, while fear of COVID-19 infection may add to anxiety and depression.

Recommended interventions to mitigate the above problems:

Raise awareness among health workers, social services and public authorities concerning the psychosocial problems persons affected by leprosy may face and the ways COVID-19 control measures may aggravate such problems.
Advocate with authorities to allow selected health and social workers, including peer counsellors, to visit persons with known problems due to disabilities, stigma, anxiety or depression.
Try to ensure that a telephone helpline is available for persons affected to call when they face problems or just to talk and/or provide essential information about COVID-19 and ways to protect themselves from infection. Several countries already have a COVID-19 telephone helpline. Where this exists, the call centre staff should be made aware of the mental needs of vulnerable people including leprosy patients. Where leprosy-specific telephone helplines exist, those responding to the calls should know what advice to give with regard to COVID-19.
Reach out to persons with known problems by telephone or SMS to let them know someone cares about their situation and to provide essential information about COVID-19 and ways to protect themselves from infection.
Set up a social media platform, e.g. a Facebook or WhatsApp group where people can find information about leprosy and COVID-19 and where they can contact each other, or for peer
support. Such groups can also be used to provide essential information on how to protect oneself from being infected with the virus.
➢ Government and non-government organizations should facilitate access to social entitlements including pensions or the provision of basic food supplies, for persons with disabilities due to leprosy and other vulnerable groups, such as the elderly.

Legal documents promoting inclusion

The government has issued guidelines on implementation of National Leprosy Control Program to ensure persons affected by leprosy enjoy equal rights with others regarding e.g. the right to work and education, establishing a family and public transport. However, it is reported that government officers and organizations do not practise the policies and legal document in reality.

Fighting stigma as objective

The vision of the ‘National leprosy strategic plan 2015-2020’ is ‘No disability, no discrimination, self-reliance’. One of the strategies is to promote the public awareness about leprosy, and stigma and discrimination against persons affected by leprosy and their family members.

Inclusive Education

National Strategy on Inclusive Education. 2009 – 2017 reinforced and consolidated so as to provide access to quality education to all children with an emphasis on children with disabilities.

Social Protection for persons with disabilities

National strategy for Growth and Poverty reduction (II (2010) – advocates for interventions to prevent unacceptable levels of socioeconomic insecurity and deprivation, underscoring the fact that the developmental role that social protection can play is to grapple with poverty traps, reduce household insecurity and encourage investments in poverty -reducing assets (physical, human, social and financial).

Mainstreaming disability issues (including persons with leprosy related disabilities) in existing structure

National disability mainstreaming strategy 2010-2015 (NDMS), Oct 2010

Promotes protection of all children, including those with disabilities

Law of the Child Act no 21/2009 promotes protect and maintain the welfare of a child (including children with disabilities) with a view to giving effect to international and regional conventions on the rights of the child; to provide for affiliation, foster care, adoption and custody of the child; to further regulate employment and apprenticeship; to make provisions with respect to a child in conflict with law and to provide for related matters.

Inclusion of persons with disabilities.

Persons with Disability Act No 9 / 2010, make provisions for the health care, social support, accessibility, rehabilitation, education and vocational training, communication, employment or work protection and promotion of basic rights for the persons with disabilities and to provide for related matters

Equality

State laws (Constitution laws) Act 12, states that all people are equal no matter someone’s condition.

Fighting stigma as objective

The Annual Report of the Government’s Anti Leprosy Campaign for 2014 mentions – ‘To fight all forms of stigma associated with Leprosy’ as one of their specific objectives.

Awareness

The National Action plan developed by the Ministry of Health for the years 2014 – 2016 has activities targeting the awareness raising on issues of discrimination as well as workshops on stigma for community members and health workers.

Social protection

New law ‘Nº 01/2007 DU 20/01/2007’ to provide social protection to all disabled people (including leprosy-affected).

Anti-discrimination in future legislation

The National Commission for Human Rights participated in the review of laws tabled in the Parliament to ensure that no law is passed that violates the human rights of citizens, including persons affected by leprosy and their family members.

Anti-discrimination in future legislation

The National Leprosy and Tuberculosis Control programme, a unit of the Federal Ministry of Health, used the UN Principles and Guidelines as one of its background documents in drafting its current strategic plan thus ensuring that adequate safeguards are provided for persons affected by leprosy and their family members against discrimination.

Lobby against discriminatory law

Partners in Nepal succesfully lobbied against the discriminatory “Anti-Marriage Law” that would have allowed the spouse of a person affected by leprosy to claim for a divorce (on basis of leprosy).

Inclusive Self Care Groups (2011)

In 2011, the national leprosy control programme decided to include people affected by leprosy in Inclusive Self Care Groups for prevention and care of disabilities.

Awareness, counselling, prevention

Several services are provided by various Ministries, such as annual conferences, symposia, annual awareness raising activities, counselling services and investigations of suspected human rights violations.

Compensation (2001)

Leprosy Compensation Law: Law to compensate interned persons in the leprosia, 2001.

Views taken into account in decision making

The Act on the Promotion of Resolution of Hansen’s Disease Issues 2009, provides that governments shall take all necessary measures to reflect the opinions of persons affected by leprosy and other relevant persons in the formulation and implementation of measures concerning people affected by leprosy. This covers women, children, older persons and other vulnerable groups.

The Rights Of Persons Affected By Leprosy and Members Of Their Family (Protection Against Discrimination And Guarantee Of Social Welfare) Bill, 2017

Introduced by a Member of Parliament in the Rajya Sabha (Upper House) in 2017. It is now to be listed for discussion for consideration to be made into a law in the Parliament. It is on the lines of the EDPAL report (No. 256) looking into the discriminatory provisions in various laws and the affirmative actions needed for people affected by leprosy for their integration, inclusion and participation.

Legal Services Act, 1987

The Act includes a provision of free legal aid to persons with disabilities, so any leprosy cured person who fits within the mandate of the disability law would fall within this positive provision

Repeal of anti-discriminatory laws. Please note: this has been proposed but not yet active

A Law Commission report in 2015 proposed composite legislation entitled “Eliminating Discrimination Against Persons Affected by Leprosy” (EDPAL) to eliminate discriminatory laws and implement anti-stigma provisions. Although some laws were repealed or amended, more than 100 remain on the statute books. The report is under review by the government.

The Rights of Persons with Disibalities Act, 2016

Legislation in line with India’s CRPD obligations to ensure that persons with disabilities enjoy the right to equality, life with dignity and respect for his or her integrity equally with others. Classifications include ‘leprosy cured’, persons who have completed leprosy treatment but have loss of sensation or physical disability resulting from leprosy.

Economic support Law 380 of 1997

Economic support for those affected by leprosy with disabilities is increased to a legal minimum wage.

Financial assistance Law 14 of 1964.

Financial assistance is provided for people affected by leprosy who do not own any assets.

People affected by leprosy have national representation

Patient associations organise the National Federation of People Affected by Leprosy seeking representation at the national level.

Associations of affected by leprosy

People affected by leprosy join associations to defend their rights as people with disabilities and get involved in inclusion processes.

CBR implementation

People affected by leprosy are empowered by DAHW to start their social inclusion process and eliminate stigmatisation.

Compensation (2007)

Law 11.520 provides financial support and compensation for persons affected by leprosy in leprosy colonies (2007). This includes lifetime public pension and access to quality leprosy services at all levels.

Views taken into account in decision making

MORHAN, an organisation of persons affected by Hansen’s Disease (leprosy), often has a seat at the National Health Council and also participates actively in the national/state/municipal health conferences.

Public policies to protect all discrimination forms. Law 045 of 2010

Eliminate racism and all forms of discrimination and consolidate public policies for the protection and prevention of racism and all forms of discrimination. Includes those affected by leprosy and other diseases.

Law for protection of people with disabilities

Government passed a law “Decreto do Deficiente Fisico” and is passing a law for protection of people with disability and stopping stigma and discrimination.