Government and researchers urged to work together on rare diseases in Tanzania

Attendees of the 2020 Rare Diseases Day in Tanzania urged the government and researchers to cooperate and share information to improve the lives of rare diseases (RDs) patients and their families.

The goal should be to reduce RDs stigma and to improve diagnosis and management.

RDs often affect nerves and muscles, causing disability, deformed faces, weight loss and repeated infections in patients. RDs only affect a tiny percentage of people and are common in children, where they slow development.

These conditions often have complex causes that are not well understood, and in Tanzania numbers and disease types are relatively unknown.

Many countries set aside the last day of February to raise awareness about rare diseases among citizens and governments.

Organisers compiled a report that summarised what was discussed and agreed upon during an official Tanzanian rare diseases event in 2020.

Among the event attendees were government officials, representatives of cooperatives, researchers from universities, civil society, and RDs patients and their families.

The event attendees reportedly complained that people were not aware of rare diseases and often stigmatised patients. Public education was then suggested as a way to reduce such stigma. They urged the government to provide counselling for RDs patients and their caretakers. They also said government and insurance companies should give special packages to RDs patients.

The government representative said lack of information about RDs patients made it difficult for them to make relevant policies. The attendees then recommended a survey to count and get information of people with RDs in Tanzania.

Attendees asked the government to train healthcare providers and build specialised hospitals for RDs. They said maternal clinics should be equipped to be able to diagnose infants with RDs. They also said that RDs patients should be given identity cards so that they could easily be assisted in hospitals. They said there should be a governmental department specifically for RDs.

The event attendees suggested partnerships with researchers in the country, and further urged researchers to generate information that will improve the diagnosis and management of RDs. They urged researchers to advise the government and other stakeholders on RD issues.

At the end, the government said that they would consider all recommendations and promised to improve access to education by individuals with RDs.

The event organisers said the recommendations made during the 2020 RD day could reduce the burden and improve the management of RDs in Tanzania.

Abstract

Current estimates show that there are approximately 6000 - 8000 rare Diseases (RDs) which affect over 300 million people worldwide. Individually, each RD affects <200,000 people mainly children because of limited survival, leaving a lifetime/life changing impact on affected individuals. Most RDs have a genetic origin, however the underlying causes and mechanisms of RDs are still largely unknown. In Tanzania, there is limited data on incidence, distribution and types of RDs. In addition, there is little awareness and understanding of RDs by the public, which has resulted in poor management and stigmatization of individuals with RDs. To address this problem, a RD day is commemorated globally every February with the aim of raising awareness among the general public and decision makers about RDs and their impacts on individuals’ lives. In addition, this platform is normally used to put emphasis on improvement and access to healthcare for affected individuals.

From 2008 to 2020, the RD Day has been commemorated in more than 100 countries, initially in Europe and Canada. In Tanzania, the RD Day was first commemorated in 2016, and the most recent event was held on 29th February 2020. The later was co-hosted by the Ali Kimara Rare Diseases Foundation (AKRDF) and Tanzania Society of Human Genetics (TSHG). The event was graced by the Hon. Dr. Hamis Kigwangala Minister of tourism and natural resources who represented the Vice President of the United Republic of Tanzania as the Guest of Honour; and was attended by different high-level Government officials, representatives of cooperates, academia, civil society, and individuals with RDs and their families. The organizers and other stakeholders utilized the event to advocate for policies and interventions to address the challenges facing individuals and children with RDs.

This paper documents highlights and presents the proposed call for actions of the 2020 RD day in Tanzania, with the overall goal of improved lives of patients and their families through increased access to adequate and high-quality health services and the development of appropriate policies.

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