Mwinyi wants health systems to include care for rare diseases

Dar es Salaam — The President of Zanzibar, Dr Hussein Mwinyi, has ordered state institutions to incorporate rare disease treatment in the health policy so that children facing such health issues can receive specialised care, particularly oxygen.

Dr Mwinyi made the statement on Tuesday evening when he spoke to delegates to International Rare Diseases Day which is celebrated every year on February 28.

He explained that the government was aware of the existence of these diseases, adding that it will continue raising awareness so that the community can to take action.

A rare disease affects a small percentage of the population. Most rare diseases are genetic, and thus are present throughout the person’s entire life, even if symptoms do not immediately appear. Examples of rare diseases are acrocephalosyndactyly, agile syndrome, and barbet bird syndrome.

In Tanzania, the International Rare Diseases Day was organized by Aga Khan Hospital in collaboration with Ali Kimara Rare Disease Foundation (AKRDF).

“I am happy to join you in celebrating this day of rare diseases. It is true that these children need help. I have directed public institutions to formulate policies that will be compatible with government systems, especially those under the Ministry of Health so that these children can get special needs,” he said.

In addition to that, the government of Zanzibar will look into the possibility of starting providing free oxygen to children suffering from rare diseases to enable them to breathe.

Speaking at the event, the founder of AKRDF Ms Sharifa Mbarak said; “We thank President Mwinyi for his good statement about rare diseases. We are happy because the treatment is expensive and these children need oxygen for 24 hours.”

She said they continue to call on other policy makers to enact policies that will classify these rare diseases and allow the National Health Insurance Fund (NHIF) to also provide insurance to children who are facing those challenges.

On the other hand, the head of the department of Paediatrics from Aga Khan Hospital Dr Mariam Noorani said a rare disease is inherited and, at times parents don’t have symptoms of a rare disease, but can carry an abnormality gene, which causes it.

“Treating this child is very expensive and we are a private hospital. What we are doing to ensure that they receive treatment is that we collaborate closely with other hospitals, especially the Muhimbili National Hospital under a private-public partnership.

We call on the community to take their children with such a problem to the hospitals,” she said.