Sickle cell, the most common genetic blood disorder in the world. However there is little to no awareness in regards to the condition why is that?
Before I attempt to answer that question let’s actually delve into the origins of the condition.
The discovery of sickle-cell disease dates back to 1670, where it was present within a Ghanaian family. This condition also was followed up by being documented in African literature in 1870.
Furthermore the first “worldwide “description of Sickle Cell Disease was by Chicago physician, james B. Herrick in 1910 where then it was subsequently named a global health risk by the World Health organisation.
Now that’s over almost 400 years of the genetic blood disorder being known by Africans, and over 100 years of the condition being known and categorised a global health risk by the western world.
So the question remains why in 2017 there is a distinct lack of awareness of the condition not only within the greater community but within the black community itself?
Before I also go into that let’s give honourable mentions to The Black Panther Party
Although it took almost over 60 years for critical progress with awareness of the condition in 1971 The Black Panther Party established the Sickle Cell Anemia Research Foundation with efforts to eradicate the disease. Along with educational and medical campaigning The Black Panther Party also did community screening for Sickle cell Disease and the Sickle Cell trait.
The Party’s Sickle Cell Anemia Research Foundation, was one of the nation’s first sickle-cell testing programs. This inspired the federal government’s initial funding of sickle-cell research. 98% of victims of the Sickle-Cell disease were Black. They wanted to provide knowledge to Blacks so they would be able to care for themselves. They believed that the greatest power was KNOWLEDGE!!
The Black Panthers persistence with awareness and education led also in the summer of 1971 for President Richard M. Nixon to request $6 Million from congress to battle sickle-cell disease.
Now all that was done in the 70’s facing a very difficult era when it came to civil rights liberty and racism. Yet the community came strong together to combat the very problematic issue that sickle-cell disease posed to the black and other ethnic minority communities.
Fast forward to 2017. Where are we now? Sadly in my own personal opinion not very far. The drive for awareness for sickle-cell disease had been replaced with shame, stigma and overall reluctance to actually talk about the condition.
I’m going to be blunt with my very own opinion to why this is the case, racism!! Yes I said it racism has and is continuing to play a big part in how sickle-cell disease is being recognised by the greater society to a point where it’s almost become the norm to only talk about the condition when people get sick or hospitalised.
It paints the picture of pity and doubt and for me and many others affected by the condition associates for the majority of the time pain and suffering. Now if that’s how the condition is being perceived how on earth are people like myself going to feel encouraged to talk about it? How can we then break preconceived assumptions of the condition if it’s automatically programmed that sickle-cell is suffering pain and death?
This now ties into why we as sickle-cell patients feel that the black community are letting the sickle-cell community down. Now don’t get me wrong I don’t want to down play the effects of such conditions such as Cancer, HIV, AIDS, ALS and other crippling that seem to get more global coverage however the black community don’t seem as engaging, proactive and interested to know about sickle cell disease.
This lack of interest is having a negative impact not just on the perception of the condition but people with the conditions actual lives.
This lack of awareness is the reason why the black blood donation rate is only at 1%. The reason why sickle-cell isn’t getting the attention it deserves and most importantly the reason why myself and many others affected by the condition are dying.
How can we then expect the greater community to pay attention towards the condition if we as a community are not there to be spokesmen for the cause like the black panthers did during the 60’s and 70’s under much more difficult social conditions?
Why is it that despite 100 plus years of sickle-cell being a global health risk the only common prescribed drug to treat it is s drug called hydroxyurea? A drug that actually was found by accident as it was initially a cure for cancer?
Currently the budget for medical research and cures for sickle-cell is less than 10% the budget that is allocated to cancer yet Sickle Cell being the most common genetic blood disorder has reached very little progress in advancements despite it being around very much longer.
Don’t get me wrong I applaud any organisations that fight for equality and justice however we have lost the drive and passion of yesteryear the resilience of The Black Panther Party to push through legislation on sickle-cell to be replaced with movements that often talk about equality but seem to omit improvements to the health care towards those affected by Sickle cell disease.
This also brings me to role of Churches in regards to sickle-cell disease. Frankly not enough is being done. The spending power that the church receives from its congregation is sufficient enough in my mind for there to be more active sessions on the importance of education towards sickle-cell disease.
Growing up and being exposed to numerous churches, the topic of sickle-cell disease was never touched on at all, and when I was going through my worse periods of ill-health I was often told to pray for healing and so it will be done, quite offensive as I felt that it the lack of interest shown by pastors and other members meant that it was something that they just didn’t care about. A Sentiment that has been expressed by several other sickle cell patients that I have spoken to.
This is the same issue in mosques. It paints the picture to the sickle-cell patient that we are not being healed because there is something wrong with us the individual. No the message should be about support education, and a sense of wanting to do more proactively as a community to tackle the sickle-cell issue and collectively as a whole the black community is contributing massively to why this disease is killing us globally.
I said it no pulling of my punches, while it may be seen as a harsh assumption let me ask you a question, when’s the last time the conversation about sickle-cell been had by you or your friends? When’s the last time the topic of wanting to know your sickle-cell status and finally when’s the last time you heard of anyone having sickle being praised publically.
Facts are in order to see improvements about the condition we need to see proper change in our own attitudes so we as a community not only can support each other better but also “Back It” for warriors dealing with the condition daily, we can be there to challenge stigma poor healthcare, ignorance and most importantly lobbying the government to demand better health care just like the generation of the black panthers before us.
Reality is unless we change our perceptions about Sickle Cell Disease then the label of the silent killer will continue to kill, and our brothers and sisters with the condition will continue to die.
Be sure to share, re-tweet and engage in the conversation, let’s all do our part to raise awareness for Sickle cell