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Recently HepCBC applied for two federal government grants from PHAC (Public Health Agency of Canada), one for HepCBC alone (basically for doing what we do now, but better) and one for a point-of-care hep C testing pilot project with two other organizations – one in Quebec and another in Nova Scotia. We’ve never gotten government funding before, but somehow PHAC convinced a number of hepatitis C patient groups that this time would be different, that our HCV-experienced voices mattered. We put countless hours and all our best efforts into these applications, trying so hard to fit what we know needs to be done to eliminate HCV in our province into PHAC’s guidelines.
We found out a week ago that not only were our proposals turned down, but those of Pacific Hepatitis C Network and many other organizations throughout Canada were as well. The organizations who received funding DID NOT INCLUDE any disease-specific groups such as ours, or patient-run groups such as ours, or groups such as ours which do not focus particularly on marginalized populations, or groups such as ours which concentrate more on testing and treatment of people with HCV than preventing new HCV transmission. We feel as if PHAC is ignoring the value of diversity and demanding that the only hepatitis C-related organizations it will support are cut out with the same STIBBIs (Sexually-Transmitted and Blood Borne Infections) cookie-cutter!
When a staff member from BCCDC asked PHAC today on a conference call how PHAC distributed the funds between HCV and HIV, PHAC was unable to provide an answer, saying only that they are using an “integrated approach.” The BCCDC staff member replied that it looked like PHAC may be ignoring the impact of HCV on the immigrant and baby boomer populations, suggesting that projects which address the needs of various marginalized populations may not reach these broader groups, which he called an unintended harm from the integration of HIV and HCV. PHAC thanked him for the question and moved on to the next caller. Such arrogance was shocking to me.
While PHAC had intimated that this time the unique experiences and contributions of HCV patient groups would finally be recognized and incorporated into the mainstream of PHAC-funded groups, instead there seemed to be little attempt to honour the valuable qualities we could bring to the table. We at HepCBC feel we were turned down for several unfair reasons. For example in its feedback, PHAC criticized us for:
- A Point-of-Care testing for HCV project, saying that it “is unavailable in Canada.” (Untrue; we purchase the tests – legally – from overseas; we have actually started working with the Vancouver Infectious Disease Centre providing this service at community health fairs – the most recent was the Chinese Health Fair in Burnaby)
- A Social Marketing Campaign which would have general and primary care practitioners as part of the target audience was questioned because “it is unclear as to the potential impact this may have on their practice.” (The evaluator does not seem aware of the critical and growing place of GPs and PCPs in HCV cohort-based testing and the greatly expanded treatment landscape resulting from availability of efficacious and primarily side-effect-free Direct Acting Antivirals in North America)
- Lack of local epidemiology data. (Actually very good data is available from BCCDC and we are working with them to have data available for a webinar series we will be running in early 2017)
- Organization is run primarily through volunteer staff. They questioned how we will ensure volunteer staff have the capacity to undertake an effective social marketing campaign. (This ignores our consistent 20 year history and the passion volunteers with lived experience bring)
- Not building sufficiently on HIV models. (We would welcome help with this but it is totally outside our experience)
- Insufficiently-developed outcome evaluation plan. (A Community-Based Research expert working with Pacific AIDS Network was standing by to help us with this)
- Not integrating sufficiently with other STTIBIs. (Again we would consider collaboration with other STTIBIs but part of our unique character is that we are a disease-specific organization which should not disqualify us, in our opinion)
- One proposal did not ask for sufficient funds to cover the project while…
- The other proposal asked for too much money to cover the project!
- Testing is considered direct service delivery and therefore ineligible for funding under the Community Action Fund. (Although they say right after that this could be a good approach to addressing the issue if evidence and tests were currently available in Canada). Testing would seem to be part of surveillance rather than a service, one might contend.
HepCBC is not going to shut down because of this as we are not currently dependent on PHAC funding. We are working with Pacific Hepatitis C Network and other groups to formulate a constructive response to this situation. Your comments or suggestions on this issue are invited, thanks so much for your ideas and support!
Note: The title “Shedding Light” is a reference to an earlier short post on the subject: Dark Day in Canada for Hepatitis C Patient Advocates
Cheryl Reitz, M.A.