Good Morning Hank, it’s Tuesday.
So, last week I made a video about the company Cepheid
and their parent company Danaher’s amazing, but expensive tuberculosis tests.
And, like minutes ago, as I’m recording this, USAID, The Global Fund,
and the Stop TB Partnership issued a joint statement
saying that Danaher’s standard TB cartridge would reduce in price from $10 dollars
to $7.90, which isn’t the 50% reduction we hoped for,
but is extremely, extremely, significant.
And it’s significant in part because Danaher has committed to making no profit
in poor countries from their standard TB cartridge,
also I’ve heard that Danaher is committed to allowing a third party to come in and verify
their at-cost pricing and to do so on a regular basis so that
if the cost of manufacturing goes down, the cost of the test will too.
Also, Danaher just agreed to improve maintenance conditions
making it easier to fix the GeneXpert tests when they break.
All of this is um... amazing news. Just to state the obvious,
this is really important progress for those living with and fighting TB.
And it’s a big win for our community as well as the folks we’ve worked
in deep partnership with many of whom have been involved in
this fight for years– Doctors without Borders,
The Treatment Action Group and Partners in Health among others.
Here’s why it’s a big deal.
Let’s say Cepheid sells 10 million of these cartridges per year at the reduced price.
Over a decade, that will save the world’s most impoverished communities 200 million dollars.
But I know it’s easy to think about this stuff in terms of numbers or dollars.
But I also want to think about it in terms of people’s individual experiences.
Like last week on Vlogbrothers we hosted a livestream that included
one of my heroes,
the TB survivor and activist Phumeza Tisile, whose TB took over a month to diagnose.
Phumeza: Because this situation was, I was in my lowest weight 32kg.
I don’t know what it is in pounds, in American, I don’t know–”
John: That's 70lbs.
Phumeza: It’s very thin. So they said I must do a chest x-ray
and I went to another clinic to get a chest e-ray and then
I was diagnosed through the chest x-ray.
John: And because she was only diagnosed by a chest x-ray,
her doctors didn’t know that she had drug resistant TB and so she was
put on the wrong drug regimen at first and eventually she was in continuous treatment
for over three and a half years, during which,
she had to take over 20 thousand pills.
And if Phumeza had been diagnosed immediately and accurately with a GeneXpert test
she would have been spared so much suffering. She might not have lost her hearing
or had to go through years of disabling illness.
That’s the kind of change an individual lives less expensive GeneXpert tests
can bring and so when we talk about millions more tests being available,
we’re really talking about the opportunity
to help transform millions of lives for the better.
Now, despite all this,
I do still have some mixed feelings. Like, I take Danaher at their word that $7.90
is their cost, but I look at the cost of the XDR,
the extensively drug resistant test and I just wish that had also reduced in price.
And I do hope that eventually Cepheid and Danaher take a similar approach
with their XDR cartridges
as they have with their standard ones because I just think it would be
such good news for patients and also for the world
because it would help us to prevent the most dangerous strains of TB.
Also, I’ve heard that some folks involved in this,
including potentially people in our community have resorted to name calling
and even threats toward people who work at these companies,
and I want to be very clear, that is unacceptable.
It is a total violation of our community's guidelines
for activism, and also it makes everything worse,
so please, and I realize I’m talking to a tiny minority
of people here, but please don’t do that, ever.
I’ve experienced those threats and all
they make me feel is resentment and fear and anger,
which makes mutual understanding and compromise vastly more difficult.
So yeah, there are definitely some complicated feelings here,
and I do think we should continue to advocate for lower cost diagnostics,
especially for those XDR TB cartridges, but we need to do that in a way
that is polite and respectful and also reflects the reality that these companies have made choices
that expand access to diagnostics for the people who need them most.
So yeah, the work is definitely not finished. Really it’s just the beginning.
This week I’m gonna be in New York to continue conversations about tuberculosis
at the United Nations, which is a weird thing to say.
Also, on Friday I’m gonna be part of an author event
at NYU with some of my heroes and it’s free.
You should come. LInk in the dooblydoo.
Hank, the last thing I want to say is this:
Early in 2007 way back when we were just beginning
Brotherhood 2.0, I was hospitalized for an infection between my eye and my brain.
And Hank, you asked people in our community
to take pictures of themselves with stuff on their head to cheer me up.
And out of the 400 or so people who regularly watched those videos,
about 350 people sent in pictures
and this was before it was easy to send digital pictures.
This is before the iphone. And when I was in this hospital bed
watching that video, seeing all of these people
with ridiculous stuff on their heads, it was the first time when I thought,
my God, this community has a lot of energy in it.
They want to do interesting stuff together. I just remember thinking this feels like
it could be really special, and so it has proven to be.
I mean, the idea that 16 and a half years later the organizational and creative talents
of Nerdfighteria would be harnessed together, not to cheer up one guy in a hospital,
but to expand TB treatment and diagnostics to millions,
that is awesome.
I am genuinely in awe of you and you are truly made of awesome.
Hank, I just wanna leave you with three words that I’ve had to learn over and over again
these last seventeen years, never underestimate Nerdfighteria
I’ll see you on Friday.