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Developing a Care Program for Neglected Patient Groups: Oculocutaneous Albinism

Developing a Care Program for Neglected Patient Groups: Oculocutaneous Albinism

In 2019, through the support of an extension in funding from the Skincare in Developing Countries Grant, Dr Williams conducted educational outreach programs in underserved regions of Botswana: Francistown, Maun, and Ghanzi. Each outreach site received lectures on albinism, a skin cancer education poster, and various dermatology resources. Providers were also trained to utilize teledermatology resources to allow continued communication with dermatologists for assistance in caring for patients with albinism and other skin conditions. 

To help change public perception of OCA, educational information is shared through radio, television, and newspapers leading up to the yearly IAAD. In addition, a beauty pageant and confidence-building bootcamp is held annually to boost albinism awareness, help normalize the disease, and give a visual demonstration that PWA are as beautiful, intelligent, and capable as other members of society (Figure 4).

Figure 4

Neglected populations, particularly those with visible skin disease and disabilities, need to feel that they have the support of key societal institutions like the health care system. Through implementation of a multimodal support program, we have significantly improved quality of care for PWA in Botswana and observed patients with OCA being more proactive about their health. PWA have a new sense of confidence that health care providers can understand their unique needs and help them. This positive support, in turn, empowers PWA to engage in activities to improve their own QoL.

Our albinism care program started through the efforts of one person but has been expanded and sustained by the ongoing cooperation of many in the health care system and private sector in Botswana. Dr Bwanali Jereni, now the Director of Dermatology at PMH, currently directs the albinism care programs locally, while Dr Williams provides remote and in-person support through her position at the UPenn. PMH now has a multidisciplinary team of providers that have been trained on albinism care. In 2019, our care program was recognized as the Best Innovative Service Project in the country by the MOH of Botswana, demonstrating the nationwide impact this work has attained in increasing OCA awareness.

A key part of the program is sun damage prevention, because sunscreen access can be incredibly challenging in developing countries. Local production is a cost-lowering option that has been exemplified by the Kilimanjaro Sunscreen Production Unit in Tanzania.12 However, sunscreen manufacturing requires significant up-front funding and local regulations prevented this method from being used in Botswana. We offer our method of bulk purchase and local packaging to highlight another feasible option for those looking to create a sunscreen program with limited resources. Bulk purchase from an established supplier ensures quality and allows negotiation for price reduction. Local packaging is simple and can be done by clinicians, volunteers, or pharmacy staff. Costs can be further reduced and compliance reinforced by having patients obtain refills using the same container. 

Across Africa, various organizations are working to improve QoL for PWA,12-19 and we offer our experience in Botswana as an example of how to start a program with limited resources and scale up. It is important to share program designs and experiences to allow others to emulate successful components. Standing Voice, a UK-based nongovernmental organization, has developed large-scale comprehensive albinism support programs in east Africa,12,15,18,19 and their successes provided significant inspiration for the design of our albinism program. For those interested in creating a care program targeting a neglected skin disease, we suggest focusing on the key areas of education, access to care, and awareness. We were able to evoke positive changes for patients with OCA in Botswana through:

  • increasing awareness about OCA within the health care system;
  • obtaining equipment to support treatment of precancers and skin cancers in dermatology clinic;
  • increasing ease of access to dermatology clinics;
  • developing a sustainable system for free sunscreen distribution; 
  • educating patients about albinism, sun protection, and their own health care needs;
  • increasing awareness and support for OCA within Botswana society; and
  • strengthening social support programs for PWA in Botswana.

Looking to the future, we aim to initiate outreach skin and eye care support services to increase access to care for rural populations. We also strive to increase disability rights with provisions for equitable educational support, employment opportunities and social inclusion. 

As dermatologists, our goal should be to uphold the human rights of our patients as well as to increase awareness and support for all vulnerable and neglected patient populations. We hope that as more physicians are able to understand the unique physical and psychosocial needs of PWA, awareness and support to ensure their health and well-being will be prioritized in all countries.

Ms Anshelevich is a research assistant in the department of dermatology at the University of Pennsylvania in Philadelphia, PA. Dr Jereni is a dermatologist with the Ministry of Health of Botswana and head of dermatology at Princess Marina Hospital in Gaborone, Botswana. Dr Williams is an assistant professor of dermatology at the University of Pennsylvania. 

Disclosure: The authors report no relevant financial relationships.

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