It’s not my
usual way of work to discuss matters that pertains sickle cell advocacy
organizations. But considering what has been going on in the sickle cell arena
in Uganda for the last couple of months in a case where someone is accused of
extorting money in the name of helping children living with this hard to live
disease – sickle cell disease that does not exist. To guard against all this I
have voluntarily offered to give my unsolicited review of the new organization
- Sulzner Sickle Cell Anaemia Foundation (SSCAF) which launched its operation in
Uganda on 23rd December 2014 at National Theatre in Kampala. Sulzner
plans to start its work in Uganda in 2016.
Sulzner Sickle
Cell Anaemia Foundation was started by Sulzner Sylvia Amasse a Ugandan nutritionist
living in Austria. It’s the 4th organization to officially launch
its operation in Uganda in 2014. I did not discuss the first three but because
of the inconsistent information which is also directly copied, edited and pasted from
other sources. On early morning of 28th December 2014 Sulzner went on
their Facebook page to attack other organizations labeling them inattentive and
ingracious (ungracious).
Sulzner’s major
aim is to build a sickle cell clinic in Uganda free to the public, the idea is
good. But the unanswered question is where is that clinic going to be located?
Where that idea has been a success the sickle cell centre was located next to a
teaching hospital. In Nigeria where it seems to me that it’s where the idea was
copied National Sickle Cell Centre (NSCC) is strategically located opposite the
Lagos University Teaching Hospital, which was done to facilitate desirable and
effective collaboration with tertiary care hospital and university research centre.
A similar arrangement was done in Mulago Hospital where the Cancer Institute
and Heart Institute are located inside hospital.
Sulzner plans to
partner with Sickle Cell Association of Uganda (SAU) to build the clinic. SAU
for long has had plans to build a sickle cell centre at their headquarters
in Namalere - Kawanda located about 8 miles from the major hospital. For SAU this is the first
partnership to have the clinic built which is estimated to cost 2 billion
Uganda Shillings. In 2011 around May a ‘donor’ promised to work with SAU and
construct the centre for them. The donor asked them to mail the original
documents of the organization including land title, Constitution, Memorandum
and Articles of Association to an address in USA. Before they mailed the
documents a Good Samaritan requested them to first verify the given address.
When he Googled the address he found out that the owner of the place had
shifted a couple of weeks back and the house was not occupied yet. Lucky enough
they got to know who was behind this fraud and is also involved in sickle cell
advocacy in Uganda.
On their
Official Facebook page Sulzner claims to be working with a committee of
advisors – The Sulzner Sickle Cell Aneamia Foundation Expert Advisory Committee
(SSCAF). They go ahead to state this committee of 30 members who are experts
spread across the geo-political zones in Uganda was set up to examine all
matters related sickle cell anaemia.
They go on and
state that the committee sat and made decisions and recommendations. This committee does not exist and is not
spread all over Uganda as it is claimed.
Second the
founder and a skeletal team of people that is in Uganda does not understand
sickle cell disease and to claim that this is the team of expert it’s wrong. I
attended their Christmas party and what the founder was telling the audience
was just mere information read from the internet. But the interview she gave us
(journalists outside National Theatre) after people had spoken was different
when she got a human face of sickle cell.
Sulzner also
states on her Facebook page that its formation was preceded by the formation of
sickle cell clubs in Austria and the Federation of sickle cell clubs in Uganda.
First enlightenment this information was copied, edited and pasted from the
website of Sickle Cell Foundation Nigeria so its not original information and
idea.
Second we do not
have sickle cell clubs. In Uganda we have sickle cell associations both
national and community based organizations. So since we do not have clubs like
in Nigeria we can’t have a federation of sickle cell clubs which don’t exist.
Sulzner did not
have partnerships in Uganda until when she came to Uganda in December that’s
when she got in touch with Sickle Cell Association of Uganda. All people who
attended the Christmas party were invited by SAU and were members of SAU except
the media and her staff.
Finally, but
petty the location of the organization’s office. Sulzner’s offices are located
on Nasser Road, Zebra House.
My review of
Sulzner is not to discredit or undermine their work but since now fraud has
shifted from HIV to sickle cell we should be cautious.
Once bitten,
Twice shy.
For God and My Country
