On September 13, 2017, Public Health Agency of Canada (PHAC) hosted a round table with patient / advocate groups from all across Canada. Jennifer Kravis represented LymeHope to participate in this discussion and we have attached our video update with a detailed description of the half-day meeting.
At the end of this post, you can click on documents from this meeting including the 1: introduction statement on behalf of all the advocates, 2: a list of questions which the advocates prepared and sent to PHAC ahead of the round table, 3: The PHAC presentation deck.
The purpose of the meeting was for Public Health to share the steps to implement the Framework Action plan, to provide an overview of how the $4 million in funding will be allocated (over the next 5 years) and to discuss ways to involve patients in this process.
All the patient advocates (including LymeHope) were united in the strong message that we unanimously believe the priority must be patient-centred and provide solutions NOW to people already suffering, the newly infected and all Canadians who are at risk- i.e. better testing, more emphasis on diagnosis based on symptoms (clinical diagnosis) and more treatment options HERE so people don't have to leave Canada and pay out of pocket for urgent health care.
However, Public Health Agency of Canada remains committed to the priorities outlined in the Framework of surveillance, education and prevention. So, within those parameters we will work with Public Health in a collaborative manner to try to begin the process of finding ways to start helping patients by beginning in those areas.
There will be a multi-stakeholder (including patient groups), multi-year process as the details – the “Action Plan” – of the Framework are put into place.
We are hopeful that this will be the beginning of a more integrated, inclusive functional working relationship with our federal public health partners, and we will provide updates as they happen.