HFU's first meeting

Date: Friday May 2, 2008

Venue: Hotel Africana, Kololo, Kampala

Attendees:

Dr. Esau Nzaro, Head - Clinical Laboratories, Mulago Hospital

Dr. Henry Ddungu - Haematologist, Mulago Hospital

Dr. Susan Nabetta -Ndidde, Haematologist, Mulago Hospital

Aisu Steven - Technologist, Medical Laboratory, Mulago Hospital

Winnie Nuwamanya - Occupational Hygienist, Dept. of Occupational Safety & Health, Ministry of Labour

Augustine (Joseph) Sewwungu - Father of Jovan [Person with Haemophilia (PWH)]

Satish Pillai - Father of Adwaiy (PWH)

Absent:

Dr. Joel Kiryadwire, Surgeon, Mulago Hospital

Rachel Kabejja, Reporter, The Monitor

Agenda:

1. Diagnostic Equipment needed for testing

2. How do we create awareness and reach out to people?

1. Diagnostic Equipment:

The topic was discussed and it did not require much long to arrive at the conclusion that there is no equipment in Uganda to test patients for Haemophilia.

Aisu Steven was given the responsibility to list out the equipment that would be needed + the consumables. He would work on this over the weekend and revert. Satish would then work on getting this equipment to Uganda. This will be done before the next meeting.

2. How do we create awareness and reach out to people?

The answers arrived at were:

i. Newspapers - Since we already have The Monitor covering us, we would wait for the effect that this has and then probably look at the other newspapers.

ii. Radio & TV talk shows - Dr. Ddungu has volunteered to arrange for a talk show in one of the stations. This should happen in 4-5 weeks time.

iii. Schools - Joseph is a member of the 'Teachers Union' and the 'Headmasters Union'. The schools will open for the next term in May and would have meetings prior to the opening. It was decided to have fliers ready and to distribute them at these meetings.

Joseph to find out the specific dates and Satish to have the fliers ready.

iv. Doctors - Even though Doctors register with the Medical Council, the opinion expressed by the doctors were that the Council does not have an updated database. Hence, reaching out to doctors would be carried out on an 'as and when we get a doctor's details' basis. Reaching out to the doctors in Kampala will not pose a problem but reaching out to remote parts of the country will pose a real challenge.

Winnie, due to the nature of her work, has details of many doctors, which she will pass on and we shall write to them, for a start.

v. Existing Haemophiliacs - Dr. Ddungu knows three (3) PWHs, of which one is Jovan. The other

two come from far. Unfortunately, he did not have the contact details off-hand, but would have the records checked up at Mulago and we would reach out to them. Testing of the PWH's siblings, their relatives will need to be done. However, this can only be attempted after procuring the equipment.

Joseph mentioned that Jovan's maternal grandfather passed away due to uncontrolled bleeding after an accident.

The meeting adjourned and the next meeting is scheduled for Friday, May 16, 2008 at the same time and venue.