RARE AND COSTLY
Gauchers’ disease, Graves’ disease, congenital hyperinsulinism, acromegaly, and Multiple Pituitary Hormone Deficiency found in Botswana
Anational health policy solely focusing on rare diseases is needed to help people living with the conditions to thrive. According to the Botswana Organisation for Rare Diseases (BORDIS) Founder, Eda Selebatso, the government must be accountable for the lives of patients with rare disorders because they are also a part of society and deserve the same amount of dignity as anyone else.
In 2021, the United Nations General Assembly adopted the first-ever Resolution on ‘Addressing the challenges of persons living with a rare disease and their families.
Selebatso tells The Midweek Sun that it is about time that the government also adopted it. The resolution calls on member states to strengthen health systems, particularly primary health care, in order to provide universal access to a wide range of healthcare services that are safe, of quality, accessible, available and affordable, timely, clinically and financially integrated, which will help to empower persons living with a rare disease in addressing their physical and mental health needs to realise their human rights to the highest attainable standard of physical and mental health, as well as to eliminate gaps in coverage and create a more inclusive society.
Rare diseases are a group of conditions that affect very small numbers of people. Definitions vary, although generally a disease is considered rare if it affects fewer than one in five individuals per 10 000 in the general population.
Common rare diseases found in Botswana include Gauchers’ disease, Graves’s disease, congenital hyperinsulinism, acromegaly, and Multiple Pituitary Hormone Deficiency amongst others.
Most people suffering from rare diseases do not have any treatment options available for their condition. Where drugs are available, they are prohibitively expensive, placing immense strain on family resources. Yet Botswana does not have plans, policies, or legislation to manage these conditions.
Selebatso has two children who suffer from rare diseases. One has congenital dysplasia and the other suffers from Morquio A, a very rare condition that causes development issues with the eyes, ears, respiratory system, hips, legs, back, and hands.
She founded BORDIS in 2015 to be the voice for rare disease patients and their families in Botswana. This was after seeing the challenges that people with rare diseases were dealing with including her family, and the lack of support they had to fight around.
“Our mandate is not just to support patients and collaborate with doctors to facilitate timely diagnosis and treatments where possible, but to advocate policy-makers that people living with a rare disease need equitable access to diagnosis, treatment, and care as part of Universal Health Coverage,” she said.
Challenges pertaining to the diagnosis and treatment of rare diseases are manifold according to Selebatso. “Lack of awareness and scientific knowledge of rare diseases often leads to wrong or late diagnosis.
“There are still no known cures for the majority of rare diseases and treatments costs are extremely high, making it out of reach for patients,” Selebatso said. Her daughter’s treatment which she needs to take for the rest of her life requires no less than four million annually.
“We have medical aids but they are not helpful because they can’t even take care of a fraction of that,” she said. She said that raising children with rare diseases is very challenging hence patients and families dealing with rare diseases need a lot of support.