Christine Ashimwe, founder of Rwanda Clot Awareness Network (RCAN), was early this month, appointed as the inaugural patient representative of the World Thrombosis Day (WTD) Steering Committee by The International Society on Thrombosis and Haemostasis (ISTH).
Beverley Hunt, WTD Steering Committee Chair described Ashimwe as “a tireless advocate and change maker for thrombosis awareness”. She will serve a two-year term on the Steering Committee, with the option for an additional two-year renewal.
Her inaugural position will involve advocating for patient requirements globally and be able to raise the issues that patients on the International Society on Thrombosis and Haemostasis are facing.
“It’s something that I think is going to benefit patients a lot,” she said of her new role, “because sometimes the International society of thrombosis and haemostasis tends to look at the research and awareness part forgetting the support that the patients or the people that have already recovered and been affected by thrombosis have.”
She adds that it is unusual for someone who has suffered a clot to go back to their pre-clot lifestyle, as they tend to have aches and pain in different body parts, and could be frightened at any slight change in their body, because they think that the clot has returned.
For her, there is need to come up with very good polices that could help patients be able to get advocacy and for their voices to be heard.
Ashimwe will be attending the first meeting in July at a committee that has been mostly made up of haematologists, making it the first time that they are going to have a patient voice on the table.
“I think that I will be able to bring about some change in terms of how policies were discussed and what kind of policies are discussed during those meetings especially because some patients don’t raise some of the concerns they have with the doctors that were on those committees. Now that I can use my experience with a track history of blood clots I think patient groups are going to open up to me.
I am member of different patient groups from the US, UK and we need to put up patient groups in Africa, for their voices to be heard and for their concerns to be raised,” she said.
She added that one of the concerns, crucial to deal with is treatment, which is very expensive for patients in the sub Saharan Africa.
“If we manage to have pharmaceutical companies that sponsor International society of thrombosis and haemostasis coming on board and be able to lower the price, I think all patients globally will be able to benefit from that,” she said.
She revealed that her other plan is to put in place policies for patients to be able to get the care they need especially in cases where patients have had a clot for a long period of time, as there is a tendency that these doctors will get used to the person, not pay attention, and in some cases lives are lost.
She also hopes that a policy will be put in place where thrombosis that is usually camouflaged into another disease can be tracked.
“We need to put clear and strict measures as a policy with World Health Organisation to know that much as it is a non-communicable disease, it is killing many people, and that other non-communicable diseases have a connection to how your blood can clot,” she said.
Recognized on October 13, WTD focuses attention on the often overlooked and misunderstood condition of thrombosis.
With thousands of educational events in countries around the world and a global reach of more than 3 billion each year, the campaign and its partners place a global spotlight on thrombosis as an urgent and growing health problem.