Tackling hemophilia in Uganda: Using “older” and “better” technology

Update posted by Edward Conway On Sep 06, 2017

Dear friends,

To all of you who so kindly participated in this first step toward helping to build a comprehensive hemophilia program in Uganda, I provide this short followup.

I have been in Uganda since late August and had the opportunity to meet twice with the hematologists and several laboratory technologists at the Fred Hutch/Uganda Cancer Institute (UCI) in Kampala. This was specifically for training on the coagulation analysers, one of which I brought from Vancouver, and the other kindly provided by @Stago. Both of the analysers are currently located in a modern facility at the UCI that is convenient for all, and adjacent to phlebotomy. It’s an ideal set-up and as you can see from the pictures, the technologists are a keen and able group! Ultimately, on of the analysers will be relocated to another site in Uganda, or used as a mobile unit for testing in more remote locations.

The training is being provided by expert staff from @Medisell UG Ltd, who are the distributors for Stago in Uganda. We are extremely grateful for their time and effort. A couple of more training sessions are lined up for this week and next, and soon after, both analysers will be placed in operation for clinical use. As you know, this will be a huge step toward better care of patients with hemophilia and bleeding disorders. There is only one other such semi-automated coagulation analyser in Kampala, and that is restricted for use by the Heart Institute.

Your funds are being carefully managed. Having been used for the analyser itself and a couple of pipettors, the remainder is being allocated for purchasing reagents that are necessary to sustain the program. However, your contribution has prompted others in the field, including the World Federation of Hemophilia, to promise additional longterm support in the way of reagents and any other materials and training that might be required.

We are off to a great start! As the program rolls out to test the patients, I will certainly report back!

Stay tuned!!!

Ed






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Update posted by Edward Conway On Jul 28, 2017

Wow!! Your generosity has been overwhelming! I have purchased the coagulation analyser and reagents and will bring them with me to Uganda at the end of August. @Stago has already delivered theirs, so we will have two to better service the hemophilia community throughout the country. As your contributions exceeded the goal, we will use the additional funds to purchase more of the precious reagents and materials for the two coagulation analysers, thereby ensuring long-term support of the program. There is much to do ... I'll definitely keep you in the loop as we continue to tackle hemophilia in Uganda.

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Update posted by Edward Conway On Jun 25, 2017

Please spread the word! We're almost there.... just shy of the $7,500 target to purchase the coagulation analyzer and the necessary reagents. .... less than $1000 to go! I'm booked to go in August to deliver the machine to the hemophilia program in Kampala, to help them install it and train the technicians. Within a week, I expect that patient samples will be rolling in. And @Stago has just informed me that the second machine is en route and their local representatives are also anxious to help in installation and training. Needless to say, Agnes Kisakye and all the participants in the Uganda hemophilia program are thrilled. Thanks to all of you who are helping! You'll receive lots of feedback as the fruits of your contributions are felt in Uganda.

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Update posted by Edward Conway On Jun 01, 2017

Please share this story .... We've almost hit our target!! Your generosity has been overwhelming.... Through your efforts and kindness, awareness of the challenges of treating children with hemophilia in Uganda has increased throughout the world, and offers to help continue to pour in.

Indeed, the story was recently picked by representatives from the company Stago (@Stago), which manufactures semi-automated coagulation analyzers. They were impressed and touched by the potential impact that their product might have. So, after discussions with colleagues in Canada and France (their global headquarters), they contacted me with an amazing offer. They will provide an entirely refurbished STart 4 coagulation analyzer for the hemophilia program in Uganda free of charge! Not only that, their local representative will deliver and install the machine, provide the necessary training to the Ugandan technicians and doctors, and will also provide the reagents!

With Stago’s remarkable participation and contributions from you and your friends, we will be able to place a second machine in a different medical centre in Uganda, so that children with hemophilia who live further from the city of Kampala, can also be tested, monitored and better treated. Uganda is ~70% rural, and travel, particularly in the rainy seasons, is extremely difficult. Having TWO coagulation analyzers in Uganda - one in Kampala and one in Mbarara - will have an enormous positive impact on the care of children with hemophilia.

Please share this story ..... less than $1000 to meet our goal!

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Thank YOU for all of your hard work and efforts in helping the people and children in Uganda. Without you, our donations would not go very far. You are the real Heroes here. Mostafa from Stago

Mostafa Elborno

Update posted by Jun 01

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