Guidelines for persons affected by Hansen’s disease (Leprosy) during the COVID-19 Pandemic

Ensuring proper treatment of Hansen’s disease (leprosy) and related reactions, prevention of physical impairments and reducing risks of infection by coronavirus

COVID-19 is a respiratory disease caused by a new coronavirus not previously identified in humans. The disease was first detected in China in 2019 and has spread to the rest of the world. The name comes from COronaVIrus Disease 2019 (COVID-19).

The virus is thought to spread mainly from person to person through respiratory droplets produced when an infected person coughs or sneezes. The virus goes through the airways to the lungs, the principal organ affected. It is highly contagious, and may survive for a few hours up to several days on surfaces, such as tables and chairs.

Fever, cough and shortness of breath are the main symptoms. The disease is completely new, so doctors and other health professionals are still learning how to deal with it. However, it is already known that people with other diseases may have a higher risk of developing complications.

Hansen’s disease (leprosy) is a chronic neurodegenerative disease caused by Mycobacterium leprae. Bacteria enter the peripheral nerves, causing inflammation, with loss of sensation and muscle function.  

So, how do doctors believe Hansen´s disease and COVID-19 may interact?

In the case of Hansen’s disease and COVID-19, some symptoms could be associated with either disease. Plus, having Hansen’s disease could weaken your ability to fight COVID-19. Therefore, it is important that you tell your doctor that you have or once had Hansen’s disease, and also if you are using any drugs related to Hansen’s disease, either multidrug therapy (MDT) or medications to treat reactions. With this in mind, we have drawn up these guidelines so that YOU and YOUR HEALTH PROVIDER can guarantee that you receive the high-quality medical care you need:    

1. MDT. During the COVID-19 pandemic, patients should receive 2 to 3 months’ supply of MDT blister packs in order to avoid repeat visits to healthcare services that may be overwhelmed by people seeking help on COVID-19. Persons affected and their organizations should require healthcare services to guarantee proper delivery of MDT without putting persons affected by Hansen’s disease at risk of contracting COVID-19. This is why delivery of 2 or 3 months’ worth of MDT blisters is a good strategy.
   If this is not possible for logistical reasons, such as the absence of sufficient blisters in stock, then patients must send someone else to the health unit to receive their medications. This is especially important in the case of elderly patients with other diseases such as hypertension and/or diabetes, or those who are immunosuppressed. If it is not possible for you to send a representative, you must wait at home to receive your medications from a community health agent (in Brazil) or equivalent in other countries.
2. Reference Centers. Specialized services for Hansen’s disease should keep their doors open to diagnose new cases and to respond to Hansen’s disease emergencies, including reactions, in order to prevent unnecessary suffering, development of physical impairments or worsening of same.
   Health workers should use personal protective equipment (PPE) to protect themselves and patients from the risk of COVID-19 infection. In case you are treated by fully-protected health workers, understand that this has nothing to do with Hansen’s disease, but with COVID-19. Water and soap or alcohol gel for sanitizing hands and to disinfect surfaces must be available at general healthcare services and specialized ones as well.
3. Dapsone is the white pill in the MDT blister. This is one of the drugs used to treat Hansen’s disease and may cause severe shortness of breath and tiredness because of anemia. Remember that COVID-19 may cause shortness of breath, and this may confuse your doctor, who must be sure to properly determine the cause of such symptoms.
4. Reactions. Hansen’s disease reactions must be treated as emergencies. Depending on the type of reaction, you may need drugs or even surgery to control nerve pain and degeneration. Specialized health services must be able to provide both in a timely manner.
   The main drugs used to treat reactions are corticosteroids and thalidomide. Both modulate the immune system, and this may have an important bearing on the course of COVID-19. Depending on your circumstances, your doctor may reduce the dosage of these drugs or even change to other drugs with less interaction with the immune system. If you are already using one of these drugs, or both, you probably may be considered an immunosuppressed patient—someone who does not have a normal ability to fight infection. This means you must take all precautions to avoid being infected with COVID-19. Remember also that thalidomide cannot be used during pregnancy.
5. Co-infection. The consequences of the co-infection of leprosy with tuberculosis or HIV and COVID-19 are unknown; also for when Hansen’s disease, pregnancy and COVID-19 overlap.  Persons with these conditions must be especially alert to new symptoms and should not hesitate to ask for medical help.
6. Physiotherapy and self-care. Physiotherapy and occupational therapy must be continued at home, and self-care groups must suspend face-to-face activities during the pandemic to avoid exposing members to COVID-19 infection. Where possible, keep your activities and meetings going through the internet via computers and cell phones.
   In any case, take good care of your mental health during this crisis and, if you really need support, try to reach out to any aid organization working in your community.
   Organizations of persons affected and Non-Governmental Organizations (NGOs) should make sure persons affected receive not only material assistance, but also psychosocial assistance during the COVID-19 crisis.
7. Surgery, assistive products and dressings. If you are in need of surgery to avoid further impairment, health services may be required to perform it. You should discuss this with the medical team and make sure your rights are safeguarded. Orthotics and prosthetics production and delivery should be maintained, but this will depend on the situation of your health system during the COVID-19 crisis. You may be given dressings to care for your wounds at home. NGOs can play an important role in ensuring that rehabilitation and provision of assistive devices are maintained.
8. Healthy environments and hygiene. The COVID-19 crisis shows the importance of healthy environments to prevent transmission. Hygienic conditions, access to food and clean water, as well as basic healthcare should be ensured in Hansen’s disease’s settlements, in order to protect these communities from COVID-19. Older people affected by Hansen’s disease should also be a target group for protection measures.

We emphasize the impact of the social determinants of health and illness on persons affected by Hansen’s disease in Brazil and worldwide, and on the population in general. The COVID-19 crisis highlights the importance of promoting health by improving living conditions, which includes universal access to health services for all, as proposed by Brazil’s Unified Health System (SUS).

April 5th, 202
Brazilian Society of Hansen’s Disease (SBH)