Defending the Rights of people with Albinism in Malawi
People with Albinism in Malawi are suffering cruelly, dozens of atrocities have been committed in the last three years alone. They are dying of skin cancer, locked out of education and employment, unsafe in their communities, raped for the ‘healing’ properties of their bodies and chased and mutilated for their limbs. Most victims have been children.
Despite the best efforts of Malawi’s albinism association and government, and recognition by the UN of the gravity of this crisis, the absence of a frontline organisation working full-time on the ground means that people with albinism in Malawi have been denied the protection they deserve.
In recognition of the deteriorating situation Edenpark Surgery and our Southern partner, Dr Kelvin Mponda of Queen’s University Hospital in Blantyre began piloting a Skin Cancer Prevention Programme in 2016, following the model developed by the NGO Standing Voice who have over 5,500 people with albinism registered on their programme in Tanzania. During the intervening years we developed the initial partnership to include Standing Voice, The Association of People with Albinism in Malawi, The Dermatology Officers of Malawi and the remaining Dermatologists. The programme now operates seven clinics in the districts of Mangochi and Machinga. It now delivers life-saving dermatological care to nearly 500 people. We know that the Standing Voice model works extremely well in Tanzania and following our successful pilot we can now see that it is effective in Malawi.
Following a meeting in Dublin in January of 2019 it was decided by all the programme partners that the skin cancer screening programme would in future come under the umbrella of Standing Voice Malawi with Dr Mark Wheeler of Edenpark Surgery as Clinical Director for Malawi.
A three year plan for Malawi and an indicative budget has been set aside. The priority is to fully establish our Skin Cancer Prevention Programme, using the relationships we have built with government, central and district hospitals, dermatologists, dermatology officers and the Albinism Association to commence a wider roll-out of our clinics. We are also determined to replicate the other tried-and-tested Standing Voice programmes in vision care, education, community development and advocacy.
Grants from Esther and THET, donations & funding from SV in London have brought the project to where it is today.
We are confident that if widely adopted and funded adequately it can deliver a long-term solution to the crisis facing people with albinism in Malawi.
Achievements in 2019
- Appointment In-Country Director. Bonface Massah was the former Chairperson of APAM & one of the foremost advocates for PWA in Malawi and worldwide Expansion of our program to a 3rd district, Nkhotakota. Edenpark Surgery, alongside Standing Voice, now delivers a Skin Cancer Prevention Program to over 550 People with Albinism in 3 districts of Malawi.
- Clinics provide a comprehensive package of dermatological care for people with albinism and training for those delivering it. Sustainability. Clinics in original district, Mangochi, now run independently of any international input Training Workshops.
- In line with the aim of developing capacity of those on the front line of program delivery, the partnership ran 2 training workshops in 2019. Purpose: To develop the ability of district healthcare workers to deliver outreach skin cancer clinics and minor surgery within their district independently and to a high standard.
Activities: Trainees divided into 3 groups based on their training needs: surgical clinicians, clinicians working in dermatology departments and community health workers/albinism association leaders.
Surgical clinicians focus: learning new dermato-surgical techniques enabling them to prevent fatal delays in access to surgery in future.
District association leaders/community health workers focus: Community mobilization, coordination and deepening their understanding of albinism and skin cancer prevention.
- In-country pathology service established via a relationship with a pathologist Dr. Mulenga in Lilongwe.
- Beginning a partnership with Ndi Myo, a hospice based in Salima to look at end of life care.
Plans for the Future
- Assess whether the benefit of registration of the charity in Malawi/Ireland in terms of fundraising this could create outweighs the cost in time and the burden of governance
- Achieving more sustainable funding model. Additional streams of funding need to be secured to allow expansion.
- Plans to fund 2 Dermatology Officers to attend a course in RDTC in Tanzania both to increase their knowledge and as an incentive for them to continue to commit to the project
- Expansion to Salima District which borders Nkhotakota in 2020 will increase numbers on the program and offers economies of scale.
- Learning from experiences in Liwonde, plan to hold surgical training and non- clinician training on more effective mobilisation in Mangochi in 2020.
- Palliative care provision to those on the program with access to proper analgesia at the forefront.
- Improving access to timely quality plastic surgery for advanced cancer cases.
- Submission to Department of Health by various stakeholders to propose a government funded plan for countrywide roll out of the program