He served as the first executive director of the Uganda Sickle Cell Rescue Foundation (USCRF), a nonprofit organization working to promote awareness of SCD in Uganda. Through his work with the Ugandan sickle cell community, Tusuubira has directly served over 60,150 people, set up 10 support networks, and registered 20,153 sickle cell warriors across Uganda.
One of Tusuubira’s most notable accomplishments is establishing the first community sickle cell screening initiative in Uganda in 2014 where over 500 people were screened. Since then, screening has been incorporated into all of the sickle cell awareness activities at Uganda Sickle Cell Rescue Foundation and has also been adopted by the Ugandan ministry of Health.
Tusuubira’s initiative has directly impacted his community, enabling over 100,000 people across Uganda to access sickle cell screening tests even within the confines of their villages. In addition to his screening initiatives, Tusuubira has also been working on two books through the Sickle Cell book project in partnership with multiple award-winning Ghanaian author, Ruby Goka.
The first book, targeted towards young adults, strives to demystify SCD to reduce the associated stigma and discrimination that young people living with SCD face. The second book aims to explain the basics of the disease to younger children in the format of a picture book.
These books are ready for publication and distribution across Uganda. Tusuubira’s work for the sickle cell community of Uganda is a shining example of how advocacy driven by motivation, purpose, and perseverance can positively affect thousands.
His hard work has not gone unnoticed; he has been recognized as the 2020 Sickle Cell Advocates of the Year (SCAY) International Advocate Winner. The SCAY awards recognize devoted sickle cell advocates who have made invaluable strides towards the progression of sickle cell through their contributions and achievements across the world.
Steven Okot,
Kampala.
MPs should ask about our needs
It has been reported in the media that parliament is in the process of amending the Constitution to allow for representation of the elderly in parliament as a special interest group. I am personally perturbed by this development.
When it comes to effective representation, there is a lesson cabinet and parliament can pick from the family. The needs of newborns in any family are not taken care of because there is a baby presenting their views/needs to the parents.
As babies, we all had our needs taken care of by the adults who raised us because those adults invested time in finding out what our needs were and they made an effort to meet them.
Just like a father is aware of the needs of his household, I believe it is each MP’s duty to invest in finding out what the needs/views of their constituents are across all age groups, and then present those needs in parliament.
If Uganda were a profit-making organization and MPs were the staff, I imagine the logical thing to do, given our financial situation, would be to add new responsibilities (if any) to the already existing staff not recruit more. For heaven’s sake, we already have enough representation of Ugandans in parliament.
Reagan Turakira,
Kampala.
City Woman MP is unconstitutional
The rush to create new cities has been marred with the appetite to create constituencies for many, and not necessarily for the reasons of economic development, among others.
I have not seen any strategic development plan of any of the new cities. Rather, we have been bamboozled with candidate posters of all manner and colour intending to take up political seats in the new cities. Among these is the “City Woman MP.”
I am wondering what law created the vacancy of “City Woman MP.” Article 78 of the Constitution establishes the composition of the parliament and specifically 78 (1) (b) establishes one woman representative for each district. Therefore, this means that the Constitution refers to a district, and not a city for a representative of the women.
Secondly, a city is carved out of a district that already has a representative of the women (wrongfully and commonly referred to as “Woman MP”) and there is no need of a second representative of the women for the same group of people. It is far from logic.
Thirdly, even if the intention of this creation may be for good intentions, what would be the terms of reference of a “City Woman MP” that a representative of the women at the district will not cover? This shows that the rush is not intended to benefit the women as they already have a representative at the district level.
Therefore, we need to tread carefully as this “juicy political vacancy” has no backing in law and we may end up wasting resources and sweat in filling a non-existent vacancy.
The vacancy is only good for mental satisfaction, but not tenable in law and practice of representative democracy as it only creates double representation – a conundrum our Constitution has safely guarded against.
Michael Aboneka,
Kampala.
What went wrong at Entebbe?
We arrived at Entebbe at 5pm., via Ethiopian Airlines, disembarking via the plane’s steps. Inside, a lady separated my wife and I, due to ‘strict social distancing instructions’ despite the obvious; we are married.
But she will not have any of this. They took our fingerprints, and passports too, ‘to be received from the ministry of Internal Affairs after 14 days of self-quarantine.’
But in the baggage claim area, it was as though the government had not prepared for us. We arrived almost at the same time as Qatar Airways and Air Dubai, about 500 people in total, in that small area. The inside had no air conditioning. But most sadly, it has no social distancing.
The place was worse than downtown Kampala’s Kikuubo. I asked one of the ladies who works there how we can keep the ‘strict social distancing instructions.’ She, smilingly, said to me: ‘this is your airport, you know it.’
Meanwhile, they had sprayed all our bags (and the belt) with a ‘disinfectant.’ Getting your bags was itself a nightmare, combined with the disinfectant in a small room without air conditioning. We had a baby too. At the same time, of all those people arriving at the same time, there was only one scanning place. One! Which means that getting out of the baggage area was at snail-speed, while those permitted inside came crashing from the immigration desks.
Our 16-month-old baby was not amused at the very least. How long could one stand in a zig-zag line where everyone wants out, and no officer offers organization? It got me thinking: who runs this place? Why is it such a mess?
As to quarantine testing, someone said to me that the ministry does not often do so before the end of their mandatory 14 days. They take their samples as time ends so that people’s stay at the hotels is more extended than required. They have your passports; what will you do?
In the meantime, someone in the government is making huge money out of this. Their arrangements with a tour and travel company enriches someone.
Their intentional extension of quarantine at these hotels makes someone wealthy. Someone’s bank account is growing fat out of many people’s misery. All this leaves you thinking: who runs this place? Why doesn’t this country love its citizens back as much as citizens love it?
Joseph Byamukama,
Kampala
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