MoM - HFU's second meeting

Since this MoM is posted today, it contains whatever progress has been achieved.

Date: Friday May 16, 2008

Venue: Hotel Africana, Kololo, Kampala

Attendees:
Dr. Esau Nzaro, Head - Clinical Laboratories, Mulago Hospital
Dr. Henry Ddungu - Haematologist, Mulago Hospital
Aisu Steven - Technologist, Medical Laboratory, Mulago Hospital
Augustine (Joseph) Sewwungu - Father of Jovan [Person with Haemophilia (PWH)]
Satish Pillai - Father of Adwaiy (PWH)

Absent:
Dr. Francis Ssali, JCRC
Dr. Joel Kiryadwire, Surgeon, Mulago Hospital
Dr. Susan Nabadda-Ndidde, Haematologist, Mulago Hospital
Winnie Nuwamanya - Occupational Hygienist, Dept. of Occupational Safety & Health, Ministry of Labour

Agenda:
1. Progress on following points from previous meeting:
- 'Diagnostic Equipment needed'
- List of doctors
- School committee meeting dates
- Radio Talk shows
2. Dr. Ssali - PWHs he attends to
3. Project Share
4. HFU logo
5. Website
6. Arua boy - probable third PWH

1. Diagnostic Equipment:
Though this was Aisu Steven's responsibility and he had done homework, Dr. Ddungu shared
that JCRC (Joint Clinical Research Centre) has recently acquired an ACL 8000 machine. JCRC
also has ordered for factor VIII & factor IX reagents which have not yet been received. This
opens up the possibility of getting PWHs diagnosed. However, JCRC will charge for the same
being a private organisation.
Hence, while PWHs can be tested now, we will still need to procure equipment because of the
charge involved.
Nevertheless, this is a big relief since we can start reaching out to people.
If a machine is procured and stationed at Mulago Hospital, the poor can avail of free testing
and this is important as people who come from up country may need assistance in
accommodation for a day. This and the testing charges, in all probability, will land in the
Foundation's lap.
Aisu arranged for a visit to JCRC to see their testing equipment for the 22nd May 2008.

2. List of doctors - Winnie was absent and hence no progress on this front

3. School Committee Meeting dates
Joseph found out that the 'Kampala Headmasters Union' was to meet at Kitante Primary
School on 20th May 2008.
Satish attended the meet and addressed the gathering. The basic intention was to spread the
word, which was done without going into technicalities of Haemophilia. It was only mentioned
that Haemophilia was a genetic life-long bleeding disorder and what the Foundation aims at
achieving.

4. Radio Talk Shows
Dr. Ddungu said that it would take some more time.

5. Dr. Ssali - since Dr. Ssali was absent, we could not get this information. Dr. Ssali was
misinformed about the date and believed that the meeting was on Thursday.
However, Satish spoke to Dr. Ssali on 22nd May and Dr. Ssali said that he sees about 10
PWHs. The most shocking truth is that most of the PWHs are handicapped due to lack of
factors.
Dr. Ssali is very keen to join us and will be present for the next meeting. He reschedules his
appointments so that he can attend the meetings. We find that very commendable.

6. Project Share - It was decided to apply for factor donations from 'Project Share'. Satish to
probe this further. However, this may be only possible after NGO registration and getting
permission from Ministry of Health (MoH).

7. HFU logo - It was decided to see 3 - 4 samples of the logo and then decide on which one to go
with.
Satish has contacted the designer to achieve this. We should be having the samples on
Thursday, May 22nd.

8. Website - It was decided to go ahead with the website.

9. Arua boy - Paul Dramaga
This information was shared and it was decided that Paul's guardians would be advised to get
Paul to Kampala (once the reagents are procured by JCRC) so that the diagnosis may be done.
Possibly, we would need to arrange for Paul's stay here.

The meeting adjourned and the next meeting is scheduled for Friday, May 23, 2008 at the same time and venue.