Sickle cell disease; time for us to get serious

Author: Nicholas Sengoba. PHOTO/NMG

What you need to know:

We are not ready for what it takes to build the critical mass in that area so we have taken the easier route; bring in those who have done it to do it for us.

There are some stories you encounter in the media that are very exciting but also leave a humbling bitter taste in the mouth. Recently, in one of its interesting science reports, the BBC Radio reported a major breakthrough in the treatment for sickle cell disease (and beta thalassemia.)

A gene editing tool, which goes by the acronym CRISPR or Cas9, has been licensed in the UK to treat the two blood disorders caused by errors in the gene for production of haemoglobin.

According to, “people with sickle cell disease produce unusually shaped red blood cells that can cause problems because they do not live as long as healthy blood cells. This can block blood vessels, causing pain and life-threatening infections. DNA is the blueprint of life - and genes contain the instructions for how every cell in our body works”.

Gene-editing allows the precise manipulation of DNA. The treatment involves removing bone marrow stem cells from a patient’s blood. In a laboratory, Crispr uses ‘molecular scissors’ to make precise cuts in the DNA of the cells, thus disabling the faulty gene. The modified cells are infused back, allowing the body to start producing functioning haemoglobin.”  Prof Josu de la Fuente from Imperial College Healthcare NHS Trust is quoted by the report thus, ‘this is the kind of technology you read in science fiction books and you never thought would be reality and here we are in my professional life being able to be part of the story and deliver it to patients.’

The report states that ‘around 15,000 people in the UK have sickle cell disease, most with an African or Caribbean family background. Almost 300 babies are born in the UK with sickle cell disease each year.’

According to Malteser International, ‘20  percent of the Ugandan population have the genetic trait of sickle cell disease. 20,000 babies are born each year with the genetic defect! The sickle cell disease is not curable. However, if it is detected early, the symptoms can be reduced.’

Many sufferers do not live long and relatively comfortable lives. I have lost friends and condoled with very many who have buried children; some above 18 due to the condition, after years of painfully being in and out of hospital. One even lost their son in India where they had flown for a bone marrow transplant, only to die after the costly procedure. So if Crispr succeeds and is availed globally it will come as a miraculous welcome relief to many.

The condition of the sickle cell disease predominantly affects black people. The trouble is that most of the research and innovation in the area of human medicine, disease and health is effectively done (paid for) by the global North or by ‘White people.’ (In fact, most of the meaningful research in any field globally.)

Because medical research is very expensive back breaking work with a lot of mishaps and outright failure along the often long tedious journey, diseases that majorly affect black people may not be prioritized.

Sickle cell disease has always been placed in this context and that is why it has taken this long to come up with anything near to a cure.

The greatest existential threat to the black race, especially in its African domain, is that we have not built capacity to do anything. Worryingly, this is especially in the things to do with our own survival. We borrow to finance our development despite the abundant natural resources. We depend on food aid yet the arable lands and manpower are available. Our ideological orientation in practice depends on who provides our security and capital. Our Transport, communication, education, culture, belief systems and social life is not entirely our own.

There are many definitive books on African history, music, art, cuisine, tradition and culture and sex which are written by Whites and foreigners. They invest the time and most important of money -and interest. Most of this money is from the public purse or from foundations and individuals who take it upon themselves to enrich the stock of knowledge in society as an obligation.   Most of what we consume is imported even when the raw materials are sourced on the African continent. The craze for foreign investors just says it all. We are not ready for what it takes to build the critical mass in that area so we have taken the easier route; bring in those who have done it to do it for us. Meanwhile we praise their genius and carry their bags.

In Uganda things as mundane as janitorial services are being done by foreign companies which employ Ugandans to do the work! Above all we can hardly treat our ailments without the hand of donors or doctors far out of the continent.

The Covid-19 pandemic laid us bare. When our lives were severely threatened -or so we thought- by the deadly virus, African leaders with a misguided sense of entitlement cried out for ‘vaccine justice’.  That those who had invested in research for a cure to the disease had an ‘obligation’ to share their findings with African countries because Covid-19 ‘was a threat to human life.’A society and indeed a civilization cannot prosper and endure if it depends entirely on exogenous resources for its existence. If black people are to secure their future and survival and also to earn respect on the proverbial table of elders, we shall  need to wash our hands. This entails deliberate investment in science and technology. Science is a global language with universally applicable theories and practices. We have an advantage that in many areas we don’t need to re-invent the wheel, for a lot has already been done. We shall only need to throw our scientists into the arena with the backing they need. Luckily we already have very able scientists, many of whom excel globally where they seek greener pastures. Fallen Cardiologist, the late Dr. Aggrey Kiyingi is one of them. They simply need sustained, institutionalized backing to research and explore.

We have to understand that in every society there are custodians of knowledge who specialize in different fields. We can’t all be scientists just like we can’t all be politicians.

But the politicians can be generously compensated and even enriched for doing work that is not exactly crucial to life, we can do the same for those in the field of science, technology engineering and mathematics.

Those are the crucial areas that have helped man to make things and be more productive at a lesser cost in terms of time and resources. The foreign hands we woo and wait for are not the legendary mother goose that fends for its young ones. They justifiably want to make money for the time and effort they spend in thinking and inventing. If we don’t build a critical mass of genuine inventors, innovators and researchers of our own, we shall remain enslaved to those who do. In the meantime, many shall live painful lives and die like the victims of sickle cell disease have done all these years.

Twitter: @nsengoba