SKIN CANCER PREVENTION

A Year of Progress

By Standing Voice

December 20^th, 2018

"Standing Voice is making people with albinism proud of their condition." Gaston Mcheka Hemed (Patient)

Standing Voice is thrilled to report on the continuing success of our Skin Cancer Prevention Programme (SCPP). Through its close collaboration with the Pierre Fabre Foundation the programme has gone from strength to strength in 2018. Operating at 49 clinic sites across 11 regions of Tanzania, the SCPP is now serving 5,350 people with albinism, which is a third of the national population of people with albinism in Tanzania (2012 population census).

The Skin Cancer Prevention Programme functions by training local dermatology professionals to deliver skin cancer education, prevention, detection and treatment to people with albinism in hospitals located nearest their communities. Each clinic provides skin cancer screening; liquid nitrogen cryotherapy; preventative education; protective clothing; a regular supply of Tanzanian-made sunscreen and surgical referral where necessary. Every year we distribute thousands of bottles of this sunscreen, which is specifically made for people with albinism and produced locally at the Regional Dermatology Training Centre in Moshi.

An early highlight this year came in May, where our team alongside health teams in Tabora region of Tanzania to deliver clinics at Ngeza District Hospital, Urambo District Hospital, Tabora Regional Hospital and Tabora Girls High School. 155 people with albinism were served over 5 days, with all sites but one meeting or exceeding attendance forecasts: a promising sign of patient compliance, and a positive indication that the programme is gaining ground in Tabora. Despite visiting Tabora for the first time only last year, dermatologists are seeing an encouraging reduction in the prevalence of skin cancer across the region.

"When the programme launched, an alarming number of people were arriving at clinics with severe cancers. Since then, we’ve seen a noticeable difference. Cancers are now being identified quicker before they progress, and people are learning how to protect themselves from the sun. Its more rare now to see cancers like the ones we were seeing initially." Dr Rowa Nelson (Community Dermatologist)

Fast-forward to June, and the Skin Cancer Prevention Programme was in Simiyu for a special clinical service. Delivered to coincide with International Albinism Awareness Day, the clinic took place amid a carnival of colourful celebrations, with patients from 21 regions of Tanzania queuing up to receive dermatological services. In attendance as the Guest of Honour, the Tanzanian Minister of Health and Social Welfare awarded Standing Voice a certificate of commendation for services to people with albinism.

July saw the expansion of the programme to Singida for the first time, where 8 of our 155 patients were referred for complex surgery. All patients persons with albinism received three containers of sunscreen, a sun-protective hat, sunglasses, and, for those below the age of two, an umbrella.

"People with albinism face stigmatisation, which forces us to work in jobs where we face increased risk of skin cancer. The services and education that Standing Voice and the Govt are providing through this programme is imparting knowledge on people with albinism and society at large, reducing stigma against us in the workplace and in our communities." Nuru Rashid Rume (Tanzania Albinism Society Singida Chairperson)

"I am so happy that I can access regular supplies of hats and Kilisun [sunscreen] for my students: it has been so long since we were able to access these resources ourselves." Wanumbilya Mujungu (Teacher, Ikungi Primary School)

Autumn brought a range of exciting developments for the Skin Cancer Prevention Programme. In Tanzania, we were delighted to host a visit by representatives of the Pierre Fabre Foundation, the programme’s principal partner and funder. We also brought together members of our Skin Cancer Advisory Committee for strategic consultations on programme development and a multi-day training workshop for our community dermatologists. Training afforded an opportunity to deepen our dermatologists’ diagnostic and surgical skill sets, including the delivery of dermatological examinations, cryotherapy and skin surgery. We hosted volunteer doctors from Ireland and Australia and provided consultancy support to a visiting dermatologist from Burkina Faso, who traveled to Tanzania to learn from our program model. This dermatologist is now working in collaboration with the Pierre Fabre Foundation to develop skin cancer prevention services for persons with albinism in Burkina Faso and other West African countries.

Across the border in Malawi, we were proud to bring the Skin Cancer Prevention Programme to the district of Machinga for the first time. Our team continued to train and mentor local partners within Malawi’s albinism association and Ministry of Health, registering 93 new patients across 3 clinic sites in the process: a solid foundation we will build upon next year.

Throughout 2018, Standing Voice has worked in partnership with the International Foundation for Dermatology to develop a manual of best practice for distribution to dermatologists working with people with albinism across Africa. Led by Dr Andrew Sharp, our Skin Cancer Advisory Committee spent much of this year writing content for this important resource, testing its efficacy in the field through our clinics in Tanzania and Malawi. The manual will be launched at the 24th World Congress of Dermatology in June 2019 in Milan.

This year Standing Voice remained at the forefront of dermatological healthcare for people with albinism. With the support of our partners and funders, we will continue to reach underserved communities and tackle the skin cancer crisis across East Africa and beyond in 2019.