Communities in Collaboration
Several years back now, I attended an international conference on hep C. One of the esteemed research scientists proclaimed that hep C was "done and dusted".
Unsurprisingly some of us raised our voices expressing disbelief and disagreement. HCV was certainly not done or dusted at all.
This was when DAA’s were a new thing, and yes, we had reached an important milestone, but there was much work ahead even then and it remains true today. There were still many more people to test and to get engaged in care.
Hep C and access to proper medical care
An environment with restrictive access criteria makes it difficult for anyone but the moderately “sick”, with no real plan to use the new treatment breakthroughs. Seeing an end to the very real suffering that was going on as cases of hep C were showing up was far more challenging, with cirrhosis, and other EHMs wreaking havoc on patients' health.
So their quality of life was decreasing.
Within the community, we acted. We advocated for changes, as patient groups do. Change did come, but still, there was and is much to do.
Getting involved with making a change
It is not a new idea or notion that Community Based organizations (CBO’s) have a role to play in the delivery of care, along with the support some unique populations need. The amount of involvement varies from place to place and the openness of the different stakeholders to a partner can look different in different jurisdictions.
One good example is in an area where my work has taken me. Point of Care Testing and Linkage to Care, using rapid testing modes that can be done by non-professionals where organizational work is situated. This is true in many other jurisdictions, and as we know this has been underway for years in community-based groups throughout the world.
It is critical to have a barrier-free and clear pathway to care situated in these groups so that any blood work or other necessary testing can be facilitated. This is the logical path to care and treatment within these collaborations.
Rapid antibody testing in the community is an effective way of reaching more people who are yet to be diagnosed. Meeting people where they are and where they receive other services makes sense.
This is not merely a geographic construct, as we know that things like stigma only divide us and cause harm. The same goes for the marginalization of people based on their current or past drug use, level of education. and lack of housing or food security all conspires to cause harm to a significant segment of the hep C community.
No community of people with shared experience or not should relegate others in a way that does nothing to help. This does quite the opposite and causes additional harm.
Do you experience long-term side effects from hep C treatment?