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| Standing with Hon. Anapa Ojirot Ngora District Speaker |
Right Honourable
Speaker and the Honourable members, thank you for this opportunity to address
you on this pertinent issue of sickle cell that is threatening the health,
social, moral and economic well-being of the people of Ngora and Teso Sub
Region whose interests you represent.
It’s an enormous privilege to be here with you this morning.
If I had stood
here one year ago on 29th March 2017 you would all have laughed at
me to make a case am going to make today, for two reasons; one I am not from
Ngora, I come from Bukomansimbi and how would I have stood here to say much
about Ngora. Two you would have asked me for the numbers of people with sickle
cell disease in Ngora which I would not have had then. I believe even if I had
quoted the statistics you would have asked to put human faces on those stated
statistics.
Let me state the
statistics which are from the Ministry of Health’s Uganda Sickle Cell Survey (US3)
of 2015, 19% of people in Ngora are sickle cell trait carriers and 2.2% have
the disease. This put Ngora on the list of districts with highest prevalence of
sickle cell trait and disease. 19% of the sickle cell trait means that 1 in
every 5 people in Ngora carry the sickle cell gene. That’s one out of 5
teachers, one out of 5 prisoners, one out of 5 students, one out of 5 civil
servants and one out of 5 district council members. Count 5 people where you
are and know that it’s possible one of you being a sickle cell carrier
knowingly or unknowingly.
Being a carrier
of the sickle cell gene/trait doesn’t mean that you have sickle cell disease
but it means you carry one sickle cell gene and one normal gene. Being a
carrier you will not be affected and you will live normal life but the effect
is on your children, that’s where the danger is. In fact it’s a nuclear bomb
that has been exploding silently and the results are these many children with
sickle cell being born in Ngora.
If you are a
sickle cell carrier and marry another person who is a carrier that’s when you
have a chance of giving birth to children with sickle cell disease. You can’t know
that you are a carrier unless you test for your genotype. To reduce on the
number of children born with sickle cell and with time realize a sickle cell
free generation we shall need to do a few things rotating around health
promotion/education and prevention. Everybody needs to know about sickle cell
starting from you who is here. Our slogan for this sickle cell free generation
campaign is “Each one teach One”. Pass on the knowledge you have received
today to your constituents.
The government
through the Ministry of Health introduced new born screening and free sickle
cell screening for children between 0-2 years to help identify those with the
disease early and also help everyone know their genotype. In Uganda 20,000
babies are born with sickle cell disease every year and 70 – 80 percent die
before celebrating their fifth birthdays. Some of the reasons for these deaths include
no diagnosis or late diagnosis depriving them of the opportunity to receive the
right treatment and attention. How many children from your constituency have
been screened under this government program? That’s a question I leave to you to
answer during your free time. Ok if you want you can whisper to your neighbor,
“Did you know that this program exist in Ngora and at no cost?”
As you still
answer that question let me share with you our experience as Action Against
Sickle Cell Disease for the last one year we have here. We came to Ngora a year
ago and reached out to the District Health Officer (DHO) who Okayed our idea of
starting a sickle cell clinic which and the Health Centre IV administration welcomed.
This clinic has been operating every Thursday.
A short
background of this clinic, when we started the sickle cell clinic at Atutur
Hospital in September 2015 people from Ngora started to access the services but
we realized that it was expensive to go to Atutur and many even could not
afford. Pastor Larence Lantz and his wife Rebecca could help with
transportation of patients to Atutur but could not help everyone. We thought it
was necessary to have a sickle cell clinic in Ngora to be easily accessed by
someone from Atoot, Mukura, Gaina, Atapar or Orisai. It was not an easy task
but it was worthwhile, we started the negotiations in February 2016 and reached
the deal on 15th March 2017. Tomorrow we shall be celebrating one
year of the clinic, the clinic opened the doors on 30th March 2017.
In the last one
year we have registered numerous achievements, so far we have 400 registered
patients and most of them are residents of Ngora Districts and others from
Kumi. The average age of the patients is 10 years and the eldest is 60 years.
We are grateful
to the staff at Kobuku who have made sure that clients are satisfied with the
services. We have had full support of Pastor Lawrence Lantz of Ngora Baptist
Church and family who have always donated drugs and other supplies plus
supporting health promotion campaigns to raise awareness and sensitize the
public about sickle cell.
We have started
programs to visit patients most especially those who are not able to come to
hospital and some have been picked, brought to the health centre received
treatment and taken back. We also started a program to remind those who have
not been coming back for reviews and treatment and so far the results are
positive, more are coming back.
We have had
challenges and one of them is the death of people with sickle cell. In the last
one month we have lost 5 children to sickle cell disease and all of them are
above 10 years. The public needs more sensitization and avoid complacency.
We have come
before you to make three prayers to this honorable council
- To
recognize the sickle cell clinic as one of the clinics at Ngora Health
Centre IV.
- To
allocate space for the sickle cell clinic. When we opened up the clinic we
were at ART clinic and now the clinic is at HIV Adolescent Centre.
- Sickle cell is considered as a priority
area during your budgeting process especially the crucial part of
awareness and sensitization.
Thank you very
much, Eyalama.
Ssebandeke
Ashiraf
Executive
Director
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