Leaving No One Behind: Safeguarding the welfare of people with albinism in Malawi

The outbreak of COVID-19 has forced us to be agile and adaptable, rethinking our plans to suit this unprecedented climate. With our second round of clinical training postponed until later in the year, we have focused our energies instead on the protection of health and safety for our hundreds of beneficiaries throughout this uncertain time.

The announcement of a global pandemic in March led the President of Malawi to declare a ‘national disaster’ and introduce measures to control the spread of COVID-19, banning public gatherings, closing educational institutions and suspending international travel. These measures were imposed against a backdrop of existing political turmoil, following the annulment and rerunning of Malawi’s 2019 general elections after allegations of rigging.

The pandemic has still not peaked in Malawi, as rates of new infections accelerate. Reports reveal high levels of stigma surrounding the virus in Malawi, with people fearing the social repercussions of contracting COVID-19 over the virus itself. Among this chaos, the spectre of witchcraft-fuelled murder remains: as recently as July, a woman with albinism in southern Malawi sustained serious injuries when attacked by unknown assailants who forcibly entered her home. She narrowly survived.

“During this period of crisis, it is important to remember how COVID-19 may exacerbate existing inequalities already experienced by people with albinism. Right now, people with albinism are doubly vulnerable, not only because of the virus, but also because of the underlying barriers that restrict their access to services and prevent their participation in society.” – Bonface Massah (Country Director, SV Malawi).

The strict regulations imposed by the Malawian government in response to COVID-19 have forced us to rethink our strategy for supporting people with albinism. We are distributing care packages that include sunscreen, health information, and hygiene kits containing masks, soap, buckets, and sanitary products for women. We are limiting the number of patients per clinic, and restricting clinical examinations to high-risk patients. We have integrated COVID-19 prevention into our health education sessions; distributed information leaflets on COVID-19, sun protection, skin cancer and albinism; and established a hotline so patients and their caregivers can directly contact us with any concerns around their health, welfare or security.

With health services under strain and access to care impeded, measures like these can be the difference between life and death for people with albinism.

“Standing Voice have ensured that people with albinism are still receiving care through the pandemic by travelling into people’s communities so that their patients don’t have to travel long distances. Their service is essential.” – Overstone Kondowe (National Coordinator of APAM).

 

“I am so happy to receive the support of Standing Voice through their distribution of care packages. Receiving a sanitary pad in particular has brought me a lot of comfort. Due to COVID-19, myself and a lot of women in my community have been unable to afford sanitary products, so the care package provided me with some much needed support.” – Patient with albinism (Machinga, Malawi).

As we look to the end of the year, and despite the inevitable operational challenges arising from COVID-19, SV is committed to ensuring our partnership with THET moves forward. Training of health workers in Mangochi will be delivered in October by local experts, with the remote support of international volunteers due to travel restrictions. Training in local data collection and management capacity will also coincide with this workshop, which will provide a solid basis for future research and evaluation. Owing to mass gathering restrictions, we have been unable to organise any large-scale advocacy events, but SV remains focused on engaging and committing relevant ministries at the national level to our programme. Following a district visit in August, SV connected with essential stakeholders such as the newly elected District Council Members and village chiefs, ahead of our rescheduled training in October.

In a crisis like COVID-19, society’s most marginalised are hit first and hardest. Despite unavoidable delays and cancellations, SV is working hard to safeguard the welfare of people with albinism in Malawi, and prevent this vulnerable minority from falling further behind.

– Standing Voice