In Plain Sight - what they knew and when they knew it

In Plain Sight - what they knew and when they knew it

Anneke
@littleann4ever on Twitter

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“It is incredible the learnings and support that we are providing British Columbians that are struggling with the Long term effects of Covid. Plus, in time, we will all benefit from the data gathered by our researchers to address this in the future” - Tim Manning, Provincial Health Services Authority Chair, April 28th, 2022.


For context, the quote above was spoken immediately following this special presentation about BC’s Post Covid-19 Interdisciplinary Clinical Care Network (PC-ICCN) at the PHSA’s open board meeting. Proof that they all knew about the long-term devastating effects of Covid-19 and yet all this knowledge was being kept under wraps and prevented from spreading mainstream too far and wide, unlike the virus itself.


Okay, let’s get something straight first before diving in more deeply. Just who is the PHSA anyway? Well, in their own words, they “work with the BC Ministry of Health, the five regional health authorities and the First Nations health authority to bring health care closer to where BC residents live, to promote health, manage chronic conditions and reduce the burden of illness.” Their unique role is to work in these partnerships “to improve access to evidence-informed practice” as well as to “deliver the best possible value by providing optimal quality of service to the people we serve at the optimal cost to taxpayers.”


The PHSA also oversees a wide breadth of BC's health programs and services - 28 specialized ones to be exact. Included among them is the BC Centre for Disease Control, described as providing both “direct diagnostic and treatment services for people with diseases of public health importance and analytical and policy support to all levels of government and health authorities”, the Provincial Infection Control Network of BC, a program “that works in partnership with the B.C. health authorities, the B.C. Ministry of Health and other related organizations to improve infection prevention and control in BC health-care facilities”, and, drum-roll please, none other than the aforementioned PC-ICCN, described as supporting “the best possible outcomes for people recovering from lingering symptoms after COVID-19 infection, through research, education and care.” Now isn’t that just a perfect trifecta of Cause, Cause and Effect, and all under one roof!


Who oversees the PHSA? Well, as per this 2018 Foundational Mandate Letter from Minister Dix, the PHSA reports to the Ministry through the Minister of Health and is “directed to develop, review, and/or update evidence informed provincial clinical policy, in alignment with the policy direction set by the Ministry, to ensure appropriate, consistent, and equitable patient care services to strengthen the quality of our system of health care, in the following areas…including “Disease Control.” Once recommendations about policy and guidelines are approved by the Ministry, “the PHSA is accountable for the communication, hand-off, monitoring, evaluation, periodic review, and reporting out on the policy.”


So, to be clear, the PHSA is directly accountable to the Ministry who sets the policy direction.


Okay, now that the chain of command is clearly defined, let’s keep it on top of mind while reviewing this PHSA PC-ICCN board presentation and further disseminating the behind the scenes knowledge of BC’s decision-makers.


In response to a question regarding demographics about those most affected, Dr. Adeera Levin, head of PC-ICCN, said: “I didn’t think this was necessarily the place to present all the data but it's about 60% women, and interestingly, persistence of symptoms seems not to be present in 30% of hospitalized patients, just in non-hospitalized patients.” And she also revealed this: “so, it doesn’t correlate with severity of disease which is very interesting.”


So, just how many top decision makers heard these statements, that long COVID symptoms are disproportionately impacting women and that they do not correlate with initial disease severity? Well, a total of 27 executive and leadership team members, including Dr. David Byres, PHSA president & CEO, Alexandra Flatt, VP of pandemic response & chief data governance & analytics officer and none other than Dr. Reka Gustafson, VP of public health & wellness and deputy public health officer.


Another important aspect of this board meeting, and perhaps the part that most demonstrates the behind the scenes influence to keep long COVID in the fine print, occurred when even PHSA Board Chair, Tim Manning himself asked about how widely the network has been communicated across the divisions and family practice. He also inquired, regarding patient access, about how members of the public might gain access to the network. To summarize, the answer to the former, was that “communication is always difficult” and to the latter, people should “speak to GPs about their symptomatology and ensure that their GPs know about this resource”. The entire response and the full PC-ICCN presentation are included in the PHSA meeting video above as well as in this full transcription.


But here’s the thing, all this information, including patient clinical care network access, resources about managing symptoms and real time, evidence-based best practices for primary care providers to help identify and refer long COVID sufferers and much, much more is posted on the PHSA website itself, since as we have already established, the PC-ICCN is part of the PHSA. In fact, all the talking points from this April 2022 presentation can be found and is expanded on in the section titled Living with Post-Covid Symptoms.


Under this heading, the PHSA asks, “Are you a BC resident struggling with post-COVID symptoms and looking for help? In other words, now that you’ve been unable to escape - repeated - Covid-19 infections and are suffering the long term effects of the disease as a result of BC’s pro-infection policies, here’s some information for you that we never share mainstream.


And how long has the PC-ICCN been formalized and under the PHSA umbrella as well as under the radar of all BC’s regional health authorities? Well, as it turns out, they were all formally tasked with overseeing the PC-ICCN back on July, 26th, 2021. And no, that is not a random date pulled out of a hat, but rather an indisputable date on multiple mandate letters for the 2021-22 fiscal year.


This from Minister Dix’s 2021-22 mandate letter to PHSA: “As a board of the PHSA, you will ensure that you focus on the following areas for health service improvement: Provide oversight to the PC-ICCN through collaborative efforts with regional and academic partners as a time limited Health Improvement Network.”


And this from Minister Dix’s 2021-22 mandate letter to Penny Ballem, VCH Chair (with carbon copies of this same letter to all other Health Authorities): “As a board of a Regional Health Authority, you will ensure that you work with the Ministry to focus on the following areas for health service improvement: Provide oversight to the PC-ICCN through collaborative efforts with regional and academic partners as a time limited Health Improvement Network.”


While on the subject of mandates, perhaps you are wondering where Dr. Henry fits into all this? Well, according to the BC government and the Public Health Act regarding the Office of the Provincial Health Officer, in addition to playing an independent advisory role, part the duties of of our appointed PHO include working with “the BC Centre for Disease Control and Prevention, and BC’s Medical Health Officers to fulfill their legislated mandates on disease control and health protection.”


So, just to reiterate, the PHSA, their programs including the BCCDC and PICNet, the MHOs in all regional health authorities with help from the PHO as part of her duties, have all had and continue to have mandated directives from Minister Dix to “provide oversight” to the PC-ICCN since July 2021.


But when did they actually all know about long COVID? And what did they know? Well, as it turns out they all had access to real time and ever expanding evidenced based knowledge as far back as *May 2020, and yet have been and continue to be complicit in downplaying life-altering Covid-19 infection impacts through their policies and public health messaging..


Yes, you read that right, since *May, 2020! It’s all laid bare two years later in this May 25th, 2022 BC PC-ICCN journal article, titled: Creating a provincial post COVID‐19 interdisciplinary clinical care network as a learning health system during the pandemic: Integrating clinical care and research.


First, regarding when they knew, according to the article’s introduction, “the PC‐ICCN was conceived in May 2020 in recognition of an emerging need for specialized coordinated care for a subset of post Covid‐19 patients with persistent symptoms (now recognized as long‐haul COVID, long COVID, or Post Acute Sequelae of COVID‐19, PASC).”


Next, as for what they’ve known, the article’s introduction states that “international estimates indicate that 10% to 20% of individuals recovering from COVID‐19 experience long‐term complications” and “given the multiplicity of organ systems affected and the susceptibility of individuals with substantial comorbidity to the infection, impacts are likely significant.” The article’s overview and objectives section expands on this even further, disclosing that “based on the known physiology of the whole‐body distribution of the angiotensin converting enzyme‐2 receptor and the virus binding to the receptor, the possibility of multisystem involvement became apparent early in the pandemic, fostering an urgent need for interdisciplinary collaboration. The PC‐ICCN emerged through “collaboration among over 60 clinical specialists, researchers, patients, and health administrators.”


Okay, now who’s been funding it all? Well, according to the article’s abstract, the PC-ICCN “is a provincially funded resource that is modeled as a Learning Health System (LHS), focused on those people with persistent symptoms post COVID‐19 infection.”


So, now might be a good time to circle back to PHSA Board Chair, Tim Manning’s words at the conclusion of the April 2022 Open Board Meeting, that “we will all benefit from the data gathered by our researchers to address this in the future.” His words are echoed in this published article too in that a main objective of the PC-ICCN is “to embed research infrastructure within clinical care to facilitate learning and evidence generation to support patient care, advance clinical guideline development, and support healthcare policy.”


Hey, that all sounds great, right? I mean, as long as the embedded real-time research is actually supporting long Covid patient care, clinical guidelines and informing healthcare policy in BC. Let’s explore all that, shall we?


So, a perfect example of real-time local, national and international Post Covid-19 research data and patient case studies being used as an educational tool to inform better clinical practice is best demonstrated by PC-ICCN’s own professional development virtual learning community series, namely the BC ECHO for Post-Covid-19 Recovery. This twelve-session curriculum ran from July 2021-July 2022 and “was designed to help family practitioners support their patients who are struggling in their COVID-19 recovery.”


For example, this May 10th, 2022 virtual session An Overview of Long-Haulers with Dr. Arseneau, Clinical Professor of Complex Diseases, presents a comprehensive summary of long Covid symptomatology including debilitating post exertional malaise (PEM), postural tachycardia syndrome (PoTS) as well as a review about multi-system complications, namely lung disease, thrombosis, heart damage, stroke, neurological disease and kidney disease.


The notion that this knowledge was at least helping family practitioners identify and properly refer patients to Post COVID‐19 Recovery Clinics (PCRCs) and for further testing is encouraging, yes? And since this was already the tenth session in a twelve-session series, surely most frontline healthcare providers were already being armed with this information, right?


Wrong. As it turns out, as of this session date, according to Dr. Arseneau, medical gaslighting was still alive and well, as he affirms in his own words, “given all the information that’s out there about long Covid, the vast majority of patients still report being dismissed, being told to push through symptoms, that it’s due to anxiety.”


Regarding evidence-based research helping identify Post Covid-19 cardiac manifestations, this June 14, 2022 A Cardiology Perspective by Dr, Ramanathan, Medical Director of Cardiac Intensive Care provides a complete overview to help practitioners better assess, treat and advise patients. This whole session needs amplification but three statements, particularly. The first being that “three months after a Covid-19 infection, it was predominantly young people, complaining of common cardiac symptoms, including shortness of breath, chest pain and palpitations,” the second, that “overall across the board the symptoms tended to be more reported by females than males” and finally, that “predominantly these symptoms came from non-hospitalized versus hospitalized patients” (35 minute mark).


These last two disclosures, of course - the predominance of symptoms in females and non-hospitalized patients - echo those from Dr. Levin’s April 2022 PHSA long Covid presentation.


Now for the final session. This July 12, 2022, A Respiratory Perspective presented by Dr. Shah, Clinical Assistant Professor of Respirology is jam-packed with world-wide as well as local evidence-based research findings. Many studies cited further confirm the predominance of young people affected and the impact on non-hospitalized patients too.


But if you watch any of it at all, fast forward to the 50 minute mark and try not to cry. This session, like the rest in the series, was intended for heath-care providers, to help them learn about and care for long COVID patients. But patients themselves, suffering from long-term life-altering conditions are also in attendance and asking for help. A distressing sign that all this essential information was not successfully getting through and that long COVID care is insufficient.


Now might be the perfect time to mention that this whole ECHO virtual learning series is posted on the PHSA website and was “fully funded by the Shared Care Committee, one of the Joint Collaborative Committees of Doctors of BC and the B.C. Government.”


Okay, now we have to address the elephant in the room, our B.C. Covid-19 public health policies. While all this ever expanding knowledge about the long term effects of Covid-19, is, at best, trickling down to a few primary care providers, the vast majority of the general public remain entirely in the dark - especially, about the fact that the data concludes that the majority of young people, even those having had “mild” acute infection are at high risk for negative outcomes. It’s not just being omitted either, it’s being written over.


Case in point, the BCCDC’s Priority Populations - meaning those most at risk for “increased chance of developing severe illness or complications from COVID-19” - still states, “older people and those with chronic health conditions.” But we now know that the evidence proves that no one in the population is without risk and there’s research that even proves that young, non-hospitalized people have reportedly been the most affected by Post Covid cardiac issues.


The public health messaging is overwhelmingly consistent though as per this March 31st, 2022 rebuttal letter from our PHO, Dr. Henry to human rights commissioner, Kasari Govender to justify rescinding the mask mandate. In it she states, “thankfully the data tells us the risk is no longer elevated in most people, even in people with underlying medical conditions, who are fully vaccinated” and that “the leading risk factor for serious outcomes continues to be older age.”


No mention about long COVID risks still inherent in young people after vaccines were available.


Suffice to say, all BC’s other decision-makers are also either overtly or silently complicit in the public health narrative, from the health ministry, the PHSA, it’s BCCDC program to all the regional health authorities and medical health officers despite the fact that they have all been involved in the PC-ICCN and have had first hand knowledge of long Covid research data, or at the very least, it’s always been at their fingertips.


So, if not to ramp up better long COVID patient care by opening up the communication channels in the healthcare system, or if not to shout from the rooftops research findings and patient case data to inform the population about the risks - that we are all at risk- what is the main focus of the PC-ICCN? Well, homegrown research is one of its main pillars. In fact, the PHSA has a whole section informing long COVID patients about BC's research participant opportunities.


But when the majority of British Columbians are still largely uninformed about the debilitating long-term consequences of repeated Covid-19 infections and public health safety policies are non-existent, this reads more like: “Hey, now that you’re suffering after being misled and unprotected, we would love to study you to get out in front of other jurisdictions with some ground-breaking research.


Because in BC, it always comes back to the research, doesn’t it?


*Due to the recently revealed F.O.I documents (see docs.google.com/document/d/19nHNA1m9hFHtkJdMTncNU4vuRwMWAD6YgWAyxpRDAXI/edit) the timeline of knowledge about post-COVID complications is now confirmed to be a month earlier - in April 2020. And let’s remember it was considered serious enough to warrant a need to establish a post Covid-19 Clinical program aka the post-Covid Interdisciplinary Clinical Care Network. The fact that this network was the one first one its kind in Canada also means that B.C government and public health officials were ahead of the pack in learning all there was to know about long COVID and multi-system organ damage in real time. And still they did not educate or inform the public.


Addendum:

If there was ever any doubt that it was always about the behind the scenes research:

A Learning Health System for Long Covid Care and Research in British Columbia | NEJM Catalyst