Thread by @jenbrea

Anyone who wants to reduce #COVID19 DEATHS should be talking about #disability, #longCOVID, and methods for reducing transmission in each and every prevention message.

The “vaccinate so you don’t die”-only message is clearly not working.

Right now 95% of the public health messaging (formal, informal, mass media, social media, expert, lay) is focused on “get vaccinated and boosted so we can reduce hospitalizations and deaths.”

In reality, vaccination alone is not proving to be effective at controlling #COVID19 spread, and while the % of people unvaccinated contribute to this, it is not the sole or ultimate reason.

https://twitter.com/danaparish/status/1471721400972939264?s=20

Realizing this, many public health messengers emphasize the role of vaccination in reducing infection severity. This is important, but is reassuring only if we don’t care about or don’t consider the risk of long-term, post-acute COVID disability.

https://twitter.com/itsbodypolitic/status/1471245657629470725?s=20

Your chance of #longCOVID is something like 10-70%.

50% is a reasonable estimate based on this JAMA meta-study.

In the US, the case fatality rate is 1.6%.

Yet nearly ALL of the focus is going toward warning people about the least probable outcome.

jamanetwork.com/journals/jaman…

Nearly ALL of the focus is going toward

– warning people about the least probable outcomes (death, hospitalization)
– promoting vaccination, which is most effective at preventing what is least probable

To the disproportionate exclusion of this truth:

https://twitter.com/jenbrea/status/1470975455188557827?s=20

Some possible reasons:

First, many PH messengers are officials. Vaccination is viewed as more politically viable than asking people to do the “annoying” things required to further reduce transmission, like wearing masks or avoiding social gatherings. The public is weary.

Second, many “front line” PH messengers on Twitter, in the media are ER doctors, intensivists, people who work in hospitals. Their day-to-day reality is treating the tip of the iceberg of this pandemic. That is what they see.

Even during normal times, they would never have seen a patient like me. (Well, the ER docs did, but they always kicked me out😜.) So did infectious disease doctors, neurologists, and essentially the whole of medicine, but I’ll get to why that matters later.

Their main focus (with good reason) are saving lives and keeping ERs and hospitals running and viable, so that they can keep saving lives. Many of them developed mega-followings (100k+) in early 2020, went on TV, started writing op-eds.

I cannot overstress how important their work is, but it is not the whole story. It’s not even most of the story.

The other experts, those directly experiencing the mass of the pandemic’s health effects (family doctors, internists, patients, the disabled) their messages have simply not broken through the day one narrative.

Although trust me, we tried:

https://twitter.com/jenbrea/status/1238988538844033024?s=20

Third, whether you are a public health official (many of them are MDs) or a media spokesperson (many of whom are MDs), you probably have very little direct experience of post-infectious illnesses or how severe they can be. ted.com/talks/jennifer…

Cultural narratives and your own medical training have probably taught you to wildly underestimate their effects on the whole of a person’s life.

Fourth, our culture is an ableist one. It is one that often excludes disabled people, renders them invisible, abstract (“the immuno-compromised”), alien, or disposable. The lack of discussion about COVID’s disabling effects is simply another iteration of a deep problem.

As I’ve tried to raise these concerns, notably in this thread, I’ve received a number of responses from MDs. Some have been, “you’re right, I’ll do better.” Many have been 1) we’re too busy 2) we already are or 3) we’re trying to save lives.

https://twitter.com/jenbrea/status/1470975455188557827

To that I would say thank you. I stand with you and hold you in love and compassion because you are weary. Of course you are. It’s been too many people ill. Too many people not listening. Too little of everything. For too long. And all of it could have been prevented.

At the same time, the ask is small. It will (in the big picture) save time and lives. It will support your mission, the work you are already doing.

Quite simply: in whatever forms you are *already* talking about prevention *also* talk about #longCOVID and #disability.

https://twitter.com/itsbodypolitic/status/1471242593312907268?s=20

In whatever forms you are *already* talking about vaccination *also* talk about transmission reduction.

Whether your primary way of communicating these messages is via Twitter, in your service on private advisory councils, in one-on-one’s with patients, or on grand CNN scale, it’s often a question of using a few additional words, adding one more tweet to that 10 tweet thread.

And while no, I don’t have any data on what public health messages are most effective (is that really driving the way we communicate these messages?), and while talking about disability may not change everyone’s behavior…

…and while yes, we’re more afraid of plane crashes and natural disasters than what will actually kill us, and yes we fear the inevitability of death more than we value our own lives, I am not convinced it has to be this way.

There is a reason people are so confused and distrust officials and expert opinion. Not everyone is unpersuadable. Not everyone is disinterested in the truth. Not all of the responsibility lies with the misinfo/disinfo machinery.

I think some people are genuinely tired of being jerked around by half-truths and failed predictions. I think more people than we give credit can see through strategems that don’t make sense. (Even if they don’t completely know why or replace them with worse ideas or beliefs.)

The biggest reason to talk more about disability, #longCOVID, the limits of vaccines, and the importance of transmission prevention is that it is the truth.

The reason to tell the truth is because it is the truth.

*PS on the #longCOVID rate. The 50% rate in the JAMA meta-study tracks hospitalized patients. According to @ahandvanish, strongest current estimates are:

Non-hospitalized patients: 15-30%
Hospitalized patients: 50-70%

https://twitter.com/ahandvanish/status/1471738067379757057?s=20

*PPS The point is not that vaccination doesn’t reduce the risk of #longCOVID (it does, at least if you are “fully vaccinated,” although I don’t think we know what that means now with respect to LC. It may well mean “boosted.”) The point is not to stop vaccine messaging.

It’s that congratulating ourselves on reducing the severity of infection (and thus death, hospitalization, (and the oft unmentioned LC)) is valid, but it is not enough. Debates on whether Omicron is “mild” miss much of the point.

Mild infection can still cause #longCOVID, regardless of vaccination status, regardless of strain, and that is (one) reason why reducing transmission is important.

Also, it saves lives.

If it were possible to TL;DR this thread, it would be with this tweet:

https://twitter.com/babyrelentless/status/1471919157809541123?s=20