Gov’t rejects rare disease patients

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  • No Govt policy on rare diseases
  • We cannot focus on individuals – Maphorisa


Permanent Secretary at Ministry of Health and Wellness Ruth Maphosira has failed to clarify government’s policy in respect of patient with rare diseases, revealing only that government will be constrained in its assistance to Batswana with such diseases as a result of limited funding.
Rare diseases, also referred to as an orphan disease, are diseases that affect a small percentage of the population. They are characterized by a wide diversity of symptoms and signs that vary not only from disease to disease but also from patient to patient suffering from the same disease and a number of cases have been reported in Africa. Most rare diseases are genetic and thus are present throughout the person’s entire life, even if symptoms do not immediately appear. Though Botswana has not been extensively impacted by such diseases, there have been a few cases. An NGO, Botswana Organization of Rare Diseases (BORDIS), founded by a family whose two children have rare diseases has been established in efforts to raise awareness on rare diseases.
Responding to Lerala-Maunatlala Member of Parliament Prince Maele’s question on the ministry’s position on rare diseases at the Public Accounts Committee (PAC) yesterday (Monday), Maphorisa said it was difficult to focus on the few individuals suffering from such diseases, but rather they are forced to prioritize on focusing on covering a broader section of the population.
“We do get such issues, and even those who are under medical aid run out of finances to pay for such rare diseases. Where we are in terms of how the funding is structured, we run into problems of prioritizing to say; how much can we spend on an individual and how much can we spread on the cape of covering these rare diseases,” Maphorisa told PAC.
“Even with cancer we are experiencing huge amounts in terms of costs. We have just had the WHO Regional Committee Meeting for Africa, where we did indicate that as small countries we are having a problem in terms of payments for drugs, because we are a middle-income country, we are not getting rebates in terms of subsidized costs.”

“This issue is related to health financing, to reduce the out of pocket expenditure by members of the community. We as a ministry are looking at this health financing issue with keen interest, so that we can shift into health insurance that will reduce out of pocket spending by individuals,” she explained.
When probed by the PAC members, Maphosira admitted that the government was not in a position to assist rare disease patients.
“Correct, we are unable to assist them because of the budget, even in terms of those that are not rare, it is an issue of how much can we provide, we run into problems,” answered the former Director of DPSM.
She in conclusion accepted that the matter requires reviewing and updating of their policies to cater for such diseases.
“It is something that we as Ministry need to pay a close attention to, and take a position on, that going forward we may assist better. As a ministry we do take note of the fact that the disease burden is increasing and therefore even in terms of our policy, that requires us to review and update our policies from time to time to ensure how we ease the burden on Batswana,” she concluded.