Dear Presidential Candidate,
Thank you for your willingness to stand
for election to the office of the President of Uganda. The calling to public
service is a sacred vocation. I hold you for election in my
prayers.
I am writing, to make a case for the
inclusion of sickle cell into your program when you get to office after
swearing in next May.
You and your other fellow presidential
candidates have so far addressed issues concerning laptops, hoes, teachers’
salaries, corruption, federal governance but I have heard no one talking about
sickle cell.
A quick insight, sickle cell disease is
a genetic blood disorder which is inherited when both parents carry the sickle
cell gene. People with this disease are susceptible to life-long infections and
early mortality if left undiagnosed, recurrent debilitating pain, anemia and
chronic organ damage including stroke, kidney and respiratory failure.
I would like to bring to your attention
that sickle cell disease is and has been affecting millions of Uganda and other
people worldwide. About 33,000 babies are born with sickle cell disease every
year in Uganda. That is about 17 percent of world population of children born
with sickle cell disease and 70 – 80 percent do not celebrate their fifth
birthdays. These children who die also desire to have a country where they can
live up to their adulthood even. A quick back in April this year the survey
results revealed that 4 out of 150 children in Uganda below 2 years have sickle
cell disease and 1 of 7 children carrying the sickle cell gene.
20 percent of Ugandans are carriers of
sickle cell trait and if they marry another person with sickle cell trait or
disease they can give back to children with sickle cell disease. 20 percent
means 1 out of 5 Ugandans are carriers of sickle cell trait. 1 out of 5 people
on your campaign team, 1 out of 5 ministers, 1 out of 5 people you address are
sickle cell carriers.
Dear candidate as you promise hoes, and
improving the wealth of Ugandans remember the children with sickle cell and
their parents who cannot benefit from these programs. As you provide to
increase the salaries of teachers and giving free laptops, there children who
will not be able to attend classes of these well paid teachers due to pain
episodes, stroke caused by this disease.
Sickle cell disease is one of the non-
communicable diseases in Uganda that is receiving less attention. The victims
have long been neglected to their own destiny to cater for themselves.
There
is little or lack of sensitization of the masses of what sickle cell is. Dear
presidential candidate, it is alarming as to the few people in Uganda that have
no clue on what sickle cell disease is, yet most people have heard of cancer and
HIV/AIDS. It is only those that are directly touched by the disease or those
who are part of the medical community handling the disease know about it.
There is no National sickle cell
Registry. This has made it difficult to accurately determine how many people
are living with sickle cell disease and trait and where they are.
There is insufficient control and
management programmes, the only programmes available have neither the national
coverage nor basic facilities to manage the patients.
As you traverse the whole country rallying
for votes, I argue you to prioritise sickle cell by intergrating sickle cell
control programs in the national programs for prevention and control of this
disease. Essential areas of work should cover advocacy, prevention, counseling,
early detection and treatment, data collection, surveillance and research,
community education and partnerships.
After your swearing in come May 2016 I
wish you to start by establishing a Sickle Cell Institute in your first 100
days in office for carrying out research, treatment, distribution of medicine
required for the treatment of the disease.
As you assign duties to your minister of
health I urge you, give him/her the first responsibility of introducing a bill
for prevention, control and management of sickle cell disease first.
Elections are about leadership. Leaders
influence and shape the world around them. Your stand on sickle cell will
determine how a sickle cell free generation can be achieved. The sickle cell
community is watching.
Yours in sickle cell name
Ssebandeke Ashiraf
PRO
Sickle Cell Network Uganda
