August 9, 2017 Update: this isn't going away. . . .
Here is what we heard this week from HALCO (HIV/AIDS Legal Clinic of Ontario). By the way, don't you just love the title of the report - "Public Health Approach to Case Management" that none in our community have even seen? That's us the report is talking about - and how our viral loads are to be managed by local Public Health offices. No thanks, says PositiveLite.com. And GIPA this is not!
From HALCO . .
The Ministry of Health and Long-Term Care (the “Ministry”), in a letter of July 28, 2017, indicates that the Council of Medical Officers of Health (COMOH) HIV Workgroup submitted a report, Public Health Approach to HIV Case Management, to the Office of the Chief Medical Officer of Health and the Ministry. The letter confirms that the “report outlines a framework for HIV case management, including the reporting of detectable HIV viral load results to public health units.”
However, in relation to the report and to viral load testing, the letter specifies the following:
1) There is currently no Ministry policy direction on HIV viral load reporting, and there is no Ministry position on the COMOH report at this time.
2) No routine HIV viral load reports have been released by Public Health Ontario (PHO) to public health units, and PHO will not be doing so in the absence of discussions with the Ministry, and considering the views of all relevant health stakeholders.
3) Any Ministry considerations with respect to policy, legislative and programmatic considerations will be subject to meaningful community involvement and appropriate consultation.
We await a copy of above report, and remain strongly opposed to the reporting of viral load test results.
Our original article . . .
The news that shook the community
It’s complicated but here is what almost came about: people living with HIV in Ontario would have had their viral load test results, with their names attached, sent from the provincial testing labs to their local public health unit.
For what? Public Health Ontario proposed leaving it up to the individual local health units to decide. The move followed a legal opinion obtained by Public Health Ontario that as HIV is a reportable disease (that’s not new), the required reporting to local health units includes viral load test results (that certainly IS new).
The new rules, formed without community consultation, were slated to start as early as September 2017. Thanks to community mobilization which triggered the involvement of CATIE, the Ontario HIV Treatment Network (OHTN), the Ministry of Health and Long Term Care’s AIDS Bureau and AIDS Action Now, the changes won’t happen – for now.
It’s not hard to see why community members were shocked, if not outraged. by the proposed changes. They challenge on multiple levels. Here are just some reasons why reporting your viral load test results to your local health unit is a concerning idea:
What will be done with the results has not been specified but the expectation is that local Public Health Units might want to follow up “detectable results” with the patient, an intrusion into existing standards of patient care and one which likely stresses potential infectivity over health and wellness issues
It raises confidentiality issues, particularly for patients who chose anonymous testing previously
There have in the past been great efforts made to avoid a “good person living with HIV vs. bad person living with HIV” dialogue. So processes designed to identify those who, for reasons that may be no fault of their own, may not have attained undetectable viral load (defined here as under 40 copies), or even those experiencing a “blip” in their results, are far from helpful.
The Undetectable=Untransmittable (U=U) campaign which PositiveLite.com supports will not be helped if undetectable is an aspiration which, if not met, will result in a report to local public health authorities.
There is concern that reporting viral load results will negatively impact those charged under laws which criminalize non-disclosure.
From a policy perspective, lack of anonymity in viral load testing represents a barrier to testing at a time when the need for testing and early diagnosis is crucial to attaining 90-90-90 goals, not to mention engagement cascade imperatives embedded in Ontario’s Provincial AIDS Strategy.
The potential impact on the work of local public health units, faced with a flood of viral load test results for patients in their area, is undetermined. But one things is sure: Public Health and the community-based HIV movement have not always seen eye to eye. Now there is the prospect of a widening and detrimental rift if the proposed changes to viral load reporting come into effect.
HALCO weighs in
But there is good news. Following hurriedly convened meetings last week HALCO’s Ryan Peck issued this announcement late last week:
“Some of you may have heard rumours over the past number of days of a significant change in the way Public Health authorities deal with viral load testing. We very recently learned that Public Health Ontario had made a decision to compel laboratories to report detectable viral load tests to Public Health Units, commencing as early as September or by the end of 2017.
We, along with others, immediately responded, and we have just learned that such reporting will not take place in September. While we are waiting for a formal response, we were told that the decision is being put on hold for the time being and that consultation will take place on this matter.
HALCO, for a number of reasons, strongly opposes the reporting of viral load tests to Public Health Units. We have made our position clear.
We will keep you updated on this issue, and please do not hesitate to reach out to me with any questions about this matter.”
How this will all pan out is up in the air. The fact that “consultation will take place” certainly injects community back in to discussions and gives them (us) a chance to air their (our) many concerns.
My guess? Community voices will win. Legal requirement or not, far too much is at stake here to allow local public health units to have their way with patient’s viral load test results.
PositiveLite.com applauds those who have taken up the fight, some poz, some not. They have our backs.