Rare diseases refer to conditions that affect few people in the society; sometimes called orphan diseases. According to World Health Organization (WHO) there are about 6,000 rare diseases which affect about 300 million people worldwide, Tanzania included. Manny rare diseases appear in early childhood, and 30 percent of the victims die before they turn 5.
Deputy Minister for Community Development, Gender, Elderly and Children, Dr Faustine Ndugulile made the pledge when speaking at this year’s Rare Diseases Day, held in Dar es Salaam on February 28, with the theme ‘Bridging health and social care'.
He said that the government is aware of the challenges faced by victims and has taken measures to enhance availability of orphan drugs with affordable price.
Dr Ndugulile asserted that since the medicine needed for rare diseases faces a challenge of low demand due to the fact that very few people in the country suffer from the disease, the government has removed all the tariffs for importation of the orphan drugs. The move is to ensure sufficient supply of medical services to rare diseases sufferers.
“As the government we acknowledge the existence of the diseases in the country and we keep on improving our health system. There is a challenge of diagnosis; there are more than 6,000 rare diseases while some of them are uncured. Most of people are not aware of their existence hence pose challenge of isolation and maltreatment people living with rare diseases especially children,” said Dr Ndugulile.
“Normally there is a long procedure for importation of drugs which has cost implications. For someone who wants to import orphan drugs for rare diseases; which you may find that there are only 100 people in the county who need them, thus the government has removed all tariffs for orphan drugs so they are now imported for free,” He added.
He urged organizers and other stakeholders to discuss and submit their proposal to the government for improvement of the health system in bid to address challenges of rare diseases.
The minister applauded organizers of the Rare Diseases Day, Sharifa Mbarak and Baome Baruani who are also the parents to rare diseases victims Ali Kimara (7) and Jamoud Muneer (2) for making the event a success, urging them to go a step farther and start a movement to recognize the victims.
Earlier, one of the organizers of the Rare Diseases Day, Mbarak said that every stakeholder should join effort to raise more awareness among the society about rare diseases, explained that number of victims should not be the factor for isolation.
“The fact that a disease affects a small number of people does not make it irrelevant or less important than diseases that affect millions. No one should be left behind when we think of providing better and sustainable health services, including people who suffer from rare disease,” she said.
“Our own experience has triggered us to mobilize parents, patients with rare diseases and other like-minded citizens aiming at creating awareness and call the community to action. We are certain there are a number of children in the country living with rare diseases but most of them are undertreated. ” she added.
They called upon the government to keep on supporting the cause, give more attention towards the rare diseases and creating better environment to reach out every child in rural and urban areas.