As we mark the International Rare Disease Day on February 29, we have an opportunity to advocate for a more inclusive society. While there is no universal definition of rare diseases, they are a diverse group of conditions which affect very few people.
By way of example, in the US a rare disease is one that affects fewer than 200,000 people, in the EU it is defined as a disease that affects fewer than 1 in 2,000 people. Rare diseases are usually severe, chronic conditions, which in many cases are progressive, debilitating, and life-threatening.
In 2019, the European Journal of Human Genetics published an article which revealed that rare diseases currently affect at any point in time, approximately 300 million people worldwide.
The article goes on to state that that there are over 6,000 clinically defined rare diseases, with 72 percent of them being genetic, and 70 percent of rare diseases starting in childhood.
The number of people directly affected by rare diseases globally is therefore approximately six times the population of Kenya and is equivalent to the population of the US.
It would therefore appear that rare diseases are not so rare after all and are increasingly being recognised globally as a public health priority.
This is demonstrated by the fact that in September 2019, all 193 Member States of the UN, including Kenya, adopted the historical political declaration on universal health coverage which included a commitment to strengthen efforts to address rare diseases, this being the first time that rare diseases have been included within a UN declaration adopted by all Member States
In Kenya however, policy discussions around healthcare have given rare diseases a wide berth.
The Kenya Health Policy 2014-2017, which seeks to ensure significant improvement in overall status of health in Kenya in line with the Constitution of Kenya 2010, the country’s long-term development agenda, Vision 2030 and global commitments such as the sustainable development goals, is silent on the government’s position with respect to managing rare diseases.
As we approach Rare Disease Day therefore, it is important to take stock of the position of rare diseases in Kenya, particularly given the fact that universal health coverage is one of the government’s developmental priorities as set out in the Big Four Agenda.
According to the WHO universal health coverage is achieved when all people and communities can use the promotive, preventive, curative, rehabilitative and palliative health services they need, of sufficient quality to be effective, while also ensuring that the use of these services does not expose the user to financial hardship.
Rare disease patients and their families are a particularly vulnerable group of citizens due to scarcity of medical knowledge, difficulties in accessing care, extremely high cost of care and isolation from society due to the rarity of their condition and the limited expertise.
Access to affordable and quality health services should be truly universal and therefore be achieved for rare disease patients in Kenya as well, regardless of and despite the prevalence of their disease.
While it goes without saying that the increased attention given to non-communicable diseases in Kenya’s current health policy is commendable and in order for the country to attain its health related goals, non-communicable diseases have to remain in the list of priority areas. However, the overall target will not be attained if most of the resources are allocated to reduce environmental risk factors alone. The government should include rare, genetic and inherited diseases as part of the non-communicable disease agenda.
While there are a number of patient support groups for the various rare diseases in Kenya, there is no formal database or rare disease registry in Kenya. A starting point would therefore be data collection on the rare diseases in Kenya, which will in turn lead to better understanding of the diseases, diagnosis and efficient care. Resourcing towards rare diseases would also be more targeted if there was data on the prevalence of rare diseases in Kenya.
It is expected that the UN resolution on rare diseases will set in motion a wave of policy actions globally that will ultimately improve the lives of people affected by rare diseases. Kenya should not be left behind as this will contribute to a truly universal health coverage that is inclusive of people with rare diseases.
The writer is chairperson of Primary Immuno deficiencies Association of Kenya.