
Hepatitis C kills more Americans than all other infectious diseases combined - vo2maxer
https://scopeblog.stanford.edu/2019/09/03/hepatitis-c-all-adults-in-u-s-under-80-should-be-tested/
======
oleg_k
I’m working on direct-to-consumer STD testing in JasonHealth.com . Some
thoughts on Hep C testing:

Hep C Antibody is a very inexpensive test. We charge $25 for it.

It takes a long time for the body to produce the antibodies after infection.
This test is only 90% sensitive after 12 weeks (
[https://www.hepatitisc.uw.edu/go/screening-
diagnosis/acute-d...](https://www.hepatitisc.uw.edu/go/screening-
diagnosis/acute-diagnosis/core-concept/all) ). Testing shortly after possible
infection with this test is not effective.

The best early detection test is Hepatitis C Viral RNA, Quantitative, Real-
Time PCR. It’s able to detect infection 2 weeks after.

The absolute best testing protocol after suspected infection is what doctors
use for needle-stick. Test the person who may be spreading the infection
immediately using the RNA test. If RNA is detectable start the short course of
Hep C drugs on the person who might be infected. This will avoid acute Hep C
infection altogether.

Hep C testing is very popular direct-to-consumer. For us, patients usually get
it as part of full STD screening ( [https://www.jasonhealth.com/l/std-
testing](https://www.jasonhealth.com/l/std-testing) ). About 80% of Hep C
tests are ordered as part of that.

Anecdotally, it’s not usually ordered by MDs as part of STD screening.
Hopefully, these new guidelines will change that.

~~~
chimeracoder
> It takes a long time for the body to produce the antibodies after infection.
> This test is only 90% sensitive after 12 weeks

That's not much of a problem except for people worried about infection after a
single known exposure (e.g. needlestick in a medical setting).

About a third of patients spontaneously clear the acute infection within six
months. On top of that, some countries (such as Germany) refuse to treat acute
infections with antivirals - so patients have to wait 6 months for the
infection to develop into a chronic infection before they can take the
medicine which cures it.

~~~
masonic

      That's not much of a problem
    

It certainly _is_ a problem if they can infect others during that interval.

~~~
chimeracoder
> It certainly is a problem if they can infect others during that interval.

Tell that to Europe! The NHS, as well as private insurers in Germany and the
Netherlands, _refuse_ to treat patients until they've been infected for at
least six months. In the US, insurers don't make this distinction.

------
hep_c_throwaway
Using a throwaway for obvious reasons.

Like many of you, I'm a young and healthy guy. I haven't taken a sick day in
years. Since I'm young and healthy, I didn't see the need to take an annual
physical exam. Scheduling doctor's appointments is such a hassle. I'm sure
many of you feel the same.

So when I was diagnosed with Hepatitis C, it came as a complete shock to me.
The shock was due to two reasons:

1\. I wasn't involved in any of the "high risk" activities associated with
Hepatitis C, which are intravenous drug use and tattoos.

2\. I regularly went to the doctor's when I was a child, so there was at least
20 blood tests done back then. None of tests caught the Hepatitis C back then.

Since Hepatitis C is a chronic condition for most people, if I didn't catch
mine early, it would have been found much later in life when all of the
damaged has been done. I only caught my Hepatitis C because I wanted to an
elective cosmetic medical procedure. It was my own vanity, plus pure luck,
that caught it.

When I was a child, I was covered under the government's and my parents'
health care plans. When I entered college, I was enrolled under the mandatory
student health care plan. After I entered the work force, I was covered under
my employer's health care plan. All this health care was fully paid for,
either through tax dollars, or my parent's contributions, or my own
contributions, and I stupidly chose not to utilize it, because I was young and
healthy.

If you don't want to end up like me, then please heed my advice: all of you
are under-utilizing the medical services that you have already paid for. You
should research what kind of screening and preventive care is included in the
health care plan that you purchased and then take full advantage of them. It's
better for you since you live longer. It's better for your insurance company
since screening and preventive care is much cheaper than paying for treatments
down the road. It's better for your government since they get to collect more
tax dollars over your longer lifespan. And it's better for me since I make a
living using the software and services that you guys provide.

I can stick around and do a AMA if you guys have any questions for me.

~~~
crobertsbmw
Did you ever figure out why you got HepC? Did you conclude that you had it
from birth, or did you remember that you stepped on a nail while traveling in
Vietnam?

~~~
hep_c_throwaway
Yes, I got it from a blood transfusion when I was a child. The Hepatitis C
virus wasn't identified until 1989, and blood bank wasn't wide spread until
early 1990s, so anyone who received a blood transfusion before then is at
risk.

~~~
redis_mlc
For those reading, you're not going to believe this but ...

From the 70's to the 80's the medical community thought it was a good idea to
mix blood from hundreds of donors and then use in transfusions.

That ended up killing nearly all of the hemophiliacs of that era, plus a good
percentage of moms giving birth. Add in Hep C, and hospitals were basically
butcher shops.

I followed the AIDS and hemophilia crisis in the press in real-time from the
first one-column-inch Kapsoi Sarcoma stories. Boy, it wasn't pretty how the
medical community reacted in slow motion.

There's an utterly horrifying Canadian movie about this.

~~~
refurb
Blood products are still pooled. They often have to be since one single
donation doesn’t give enough blood product for a single patient.

------
jxramos
Here's the crux point...

""" ...clinicians are now able to successfully cure at least 95% of patients
with the chronic condition with oral medications that have little or no side
effects.

"With such an effective means for cure, it only makes sense to universally
screen patients," Cheung said. "Implementation of universal screening will
also decrease the likelihood of primary care physicians forgetting who does or
does not need screening -- and it avoids the sometimes uncomfortable
discussion with the patient about why they have been labeled as high risk and
needing further screening." """

I think the fact that high risk populations rock the medical boat so globally
already makes medicine awkward regardless of avoiding uncomfortable
discussions. All these blanket treatments and tests just paper over the fact
that there are wide impacting subpopulations with poor health in our populous
driving the need for these things in the first place. It's the next immediate
question that gets raised when you evaluate 'why do I need another HIV test'
or whatever other blood test it is that medicine pushes on you. Eventually it
dawned on me that these blind blanket decisions are simply because these
doctors don't know anything about a patient's personal life and what risky
subpopulations they may or may not belong to. But from the patient who knows
what virtue they live or don't live some of these tests just come off as
absurd knowing your own life history and the absolute absence of risks you
deliberately avoid in life. One step of indirection is not much to jump over
for one who naturally asks the next immediate question.

~~~
DoofusOfDeath
This seems related to the political question of how much healthcare costs
should be socialized, i.e. spread across a group rather than shouldered by
individuals.

As someone who doesn't smoke, barely drinks alcohol, doesn't take illegal
drugs, and (I hope) is in a lifelong-monogamous relationship, I hate having to
cover healthcare costs specific to those problems.

On the other hand, as someone with chronic mild obesity, I'm grateful for
government-funded research for treatments of hypertension, stroke, idiopathic
cancer, etc. And to some extent I could, if motivated enough, keep my
bodyweight down.

I guess there are two issues then. The politics of shared costs/benefits, and
attending my personal struggles with only being empathetic to problems that I
myself experience.

~~~
sorokod
"This seems related to the political question of how much healthcare costs
should be socialized, i.e. spread across a group rather than shouldered by
individuals"

It's a moral question, not a political one. Food for thought: "Rough sleeper
gives birth to twins outside wealthiest Cambridge college" \-
[https://www.theguardian.com/society/2019/dec/26/rough-
sleepe...](https://www.theguardian.com/society/2019/dec/26/rough-sleeper-
gives-birth-to-twins-outside-cambridge-university)

~~~
timthorn
But that story isn't about costs of healthcare - the NHS will treat her for
free precisely because the costs are socialised. The social care system will
also ramp up rapidly given she's a vulnerable new mother who has now been
admitted to the local maternity hospital.

------
yakz
_Antiviral drugs for hepatitis C are very effective, but they come at a steep
cost. Just one Sovaldi pill costs $1,000. A full 12-week course of treatment
with this drug costs $84,000.

The price of other hepatitis C drugs is also high:

Harvoni costs $94,500 for a 12-week treatment Mavyret costs $39,600 for a
12-week treatment Zepatier costs $54,600 for a 12-week treatment Technivie
costs $76,653 for a 12-week treatment_

[https://www.healthline.com/health/hepatitis-c/treatment-
cost...](https://www.healthline.com/health/hepatitis-c/treatment-costs#2)

~~~
save_ferris
That is so depressing to read.

US pharma companies are completely out of control, there’s absolutely no
reason a 12 week treatment should cost around the mean annual US income. Can’t
imagine having to decide to risk my entire financial future to deal with Hep
C.

~~~
georgeplusplus
What’s the alternative? This gets tiresome asking because the typically
argument is to say “This is crAzYyyy!!!! “ without offering any real solution
or input.

gilead the makers of Harvoni literally made a cure for a previously uncureable
disease, You literally have no respect on a tech site of all places, for all
the RnD that went into doing that.

~~~
tyingq
_" gilead the makers of Harvoni literally made a cure for a previously
uncureable disease"_

No, they acquired Pharmasset, the company that made the cure, for $11.2B. That
was a pretty low-risk move. It was already an obvious money maker.

 _" for all the RnD that went into doing that"_

In the 18 months following Sovaldi’s approval, Medicare alone spent $8.2
billion on the drugs...that doesn't include private insurance payments. I
imagine the acquisition was paid off quite quickly. Pricing after that was
just how much profit they wanted to make.

See these for more detail:

[https://www.finance.senate.gov/imo/media/doc/Wyden-
Grassley%...](https://www.finance.senate.gov/imo/media/doc/Wyden-
Grassley%20Document%20Request%20to%20Gilead%207-11-141.pdf)

[https://www.finance.senate.gov/ranking-members-news/wyden-
gr...](https://www.finance.senate.gov/ranking-members-news/wyden-grassley-
sovaldi-investigation-finds-revenue-driven-pricing-strategy-
behind-84-000-hepatitis-drug)

~~~
losvedir
> _No, they acquired Pharmasset, the company that made the cure, for $11.2B.
> That was a pretty low-risk move. It was already an obvious money maker._

Before I was a software developer I was in equity research, and one of the
companies that we covered was Pharmasset. The whole _point_ of these research
companies is to find a winner and be acquired.

I get that it's low risk for the acquirer, but without that big payout the
research and trials won't get done by the small companies, who won't be able
to raise funding, etc.

~~~
tyingq
I pointed it out because it brings some clarity to what the R&D actual costs
are, and thus some clarity to whether gouging is happening.

~~~
vilhelm_s
Isn't this evidence in the other direction: if the drug already existed and
was acquired for $11 billion, then that suggests that they expect the profit
to be about $11 billion. Otherwise, wouldn't they bid up the price more?

~~~
tyingq
In the 18 months following Sovaldi’s approval, Medicare alone spent $8.2
billion on the drug.

I know that's revenue and not profit, but that doesn't even include private
insurance, self pay, or sales outside the US.

------
ZoomStop
My dad passed away in August due to Hep C complications. Very true that anyone
who has done anything that can put you at risk should be tested. The treatment
is criminally expensive but it is curable with it. Sadly my dad, the a-typical
medically procrastinating male, didn't start on Sovaldi until it was too late
and he died before he could complete treatment.

------
thex10
_> 70% to 90% of older injection-drug users are infected._

If you have the unique misfortune of being born to one of those older users,
do get tested. I was asymptomatic when I tested positive a few years ago, at
the age of 25. It was a surprise to the medical professionals involved, as I
have no drug using history, no tattoos, in otherwise perfectly good health.

I did get the super expensive pills, and they cured me in eight weeks (and I'm
extremely grateful my insurance at the time covered the cost).

My liver's doing OK, but who knows whether the disease contributed to my
chronic depression. Still, I consider myself lucky to have caught it when I
did.

------
shaftoe
I get their point about stigma, but as someone who has never injected drugs,
I'm having a hard time caring about getting screened for this.

How do they intend to actually roll out a massive testing operation (everyone
under 80) when likely most people hear the details and respond with "meh, not
me"?

~~~
ethbro
From a public health perspective, recommendations and guidelines like this
drive insurance company policies and government funding priorities. Or in
other words, the things that actually move the needle when you're trying to
get something done for an appreciable percentage of citizens.

There's no ability and need to test everyone today, but this is a sign that we
should move to more regular screening of higher percentages of the population.

Honestly, I'm kind of curious from those involved in the field: What's the
blocker to rolling out extremely broad, minimal-cost testing? Manual
processes? Too few companies in the testing market? Requires expensive prep /
reagents?

~~~
hep_c_throwaway
>There's no ability and need to test everyone today, but this is a sign that
we should move to more regular screening of higher percentages of the
population.

Signs of Hepatitis C, along with most liver diseases, can be caught with the
standard liver enzyme tests that's available in pretty much every lab in the
developed world.

To be specific, if you see your doctor and it's been more than 6 month since
your last visit, then it's standard procedure to take a blood test. Your
doctor will take out a pre-printed form that's commonly called "laboratory
requisition form" or "assay requisition form", fill out the patient
information and tick a few boxes. If they ticked the "ALT" box, then they have
ordered the necessary liver enzyme tests. Quoting Wikipedia: "Significantly
elevated levels of ALT (SGPT) often suggest the existence of other medical
problems such as viral hepatitis, diabetes, congestive heart failure, liver
damage, bile duct problems, infectious mononucleosis, or myopathy, so ALT is
commonly used as a way of screening for liver problems."[1]

Here's a Kaiser Permanente laboratory requisition form[2] with the ALT
checkbox. Here's a Quebec health provider that include ALT in their general
profile test #1 through #4 [3].

Testing for Hepatitis C directly is also widely available. Since it's a public
health hazard, most state and national governments in the developed world has
setup free testing programs. For example, I Googled "california hep c testing"
and this page[4] is the third result. They offer _free_ Hepatitis C tests with
the results available in 20 minutes.

[1]
[https://en.wikipedia.org/wiki/Alanine_transaminase](https://en.wikipedia.org/wiki/Alanine_transaminase)

[2]
[http://testinfo.kaiserpermanente.org/info_assets/cpp_ga/pdfs...](http://testinfo.kaiserpermanente.org/info_assets/cpp_ga/pdfs/Laboratory_Req_2016_Front.pdf)

[3]
[https://www.dynacare.ca/DYN/media/DYN/Pdf/Print%20a%20Form/G...](https://www.dynacare.ca/DYN/media/DYN/Pdf/Print%20a%20Form/Generic-
Dynacare-EN_V1_28NOV2018.pdf)

[4] [https://www.sfaf.org/services/sexual-health-and-
testing/hiv-...](https://www.sfaf.org/services/sexual-health-and-testing/hiv-
sti-testing/)

~~~
ethbro
Forgive a non-bio major, but these tests can generally be segregated into
cultured (pcr) / non-cultured, no? And I'm guessing as an enzyme test, this
would fall into the later category?

------
ken
It looks like the standard blood "Donor Battery" includes anti-HCV, so regular
donors are already being screened.

Of course, you shouldn't donate blood for the purpose of getting tested for a
disease.

~~~
koheripbal
There is a question on the blood donation form that asks if you are donating
for the purposes of testing yourself.

If you answer yes, then your donation is discarded.

~~~
ken
There's no one universal questionnaire. No such question exists at any blood
center I've donated at.

If you answer any question in a way that would lead to the blood being
unusable, they wouldn't go to the effort of taking a donation just to discard
it. At least, my local blood center doesn't.

------
kwhitefoot
WebMD ([https://www.webmd.com/hepatitis/digestive-diseases-
hepatitis...](https://www.webmd.com/hepatitis/digestive-diseases-hepatitis-c))
says that 3.9 million people in the US have this disease, more than 1 in 100
of the population. And [https://hepatitisc.net/what-
is/statistics/](https://hepatitisc.net/what-is/statistics/) says that
worldwide abou 70 million, again roughly 1 per 100. This seems rather a lot.
What is missing from the statistics I have been able to find is any breakdown
by location, lifestyle, diet, etc. The only hint is that the majority of
injection-drug users are infected and that poor blood screening in the past
has contributed.

If this disease is so widespread it seems to me that public health measures
that prevent or reduce the risk of infection must, in the long run at least,
be necessary.

What measures might they be and is there anything that an individual can do to
reduce their risk?

------
ineedasername
The "reportable disease" qualifier must be an important distinction here. The
article doesn't say how many Hep C deaths there are, but a search showed about
19,000 annually. That's a far cry from 50,000 estimated pneumonia deaths, and
still just under the estimated 20,000 MRSA deaths.

------
jp57
The article says nothing about the false positive and false negative rates of
the test, and proceeds as if the screening is infallible.

Even given what was said in the article, one has to assume that the incidence
of the infection in the general population is quite low—probably measured in
basis points—which means that the false positive rate of the test would have
to be very low to get a high positive predictive value. It may well be so, but
we'd need to know that (and the costs of treating the uninfected) to
understand whether universal testing is really warranted

~~~
inasio
The two key groups in western countries are baby-boomers (likely acquired the
infection from dentists/doctors reusing needles), and intravenous drug users.
The best bang for your buck is in testing and treating this last population,
but you have to be careful and try to do followups to prevent reinfection.
It's worthwhile to test the baby boomer population as many of them could
require liver transplants soon if not detected

~~~
masonic

       (likely acquired the infection from dentists / doctors reusing needles)
    

In _Western_ countries?!

~~~
klyrs
My aunt is such a boomer. She got hvc in the military from a pneumatic vaccine
injector. The DoD apparently discontinued this practice in the late 90s.

------
hypewatch
Hep C is a curable disease that doesn’t have any symptoms. It also tends to
infect the most vulnerable among us - heroin addicts.

So the root cause of this issue is not the disease itself but our society and
health system. These victims are not receiving the testing and treatment they
need because they choose not to or (more likely) can’t afford to go to the
doctor.

~~~
inasio
From a purely epidemic control point of view the most rational path is to test
this population as often as possible (every 6 months or less) and treat them
immediately if testing positive. If you find people that reinfect rather than
a bad thing this means you are being able to reach a core at-risk group.

------
findyoucef
My mom is a physician who has treated hepc for years. But the problem these
days is convincing insurance companies to pay for the treatment. Unfortunately
having the disease isn't enough for them pay. :-/

------
LinuxBender
This is likely going to be an unpopular question and maybe I m just really
naive, but is the protein really so complex to synthesize that a kit could not
be made to make a small batch at home? I ask this because I have recently been
studying what is required to produce non naturally occurring amino acids and
while not trivial, it can be done. Are there not biohackers that figure these
things out as a hobby? I know, totally unsafe, but if your only other option
is death, then I think such discussions should be on the table. Derivative
works so to speak.

~~~
hep_c_throwaway
I paid $1300 for a 12 weeks course of generic Harvoni from India. I paid using
credit card and it arrived within a week. Normally I'm a law-abiding citizen,
but as you said, if it comes down to choosing between violating intellectual
property laws and death, it's an easy choice to make.

~~~
chmod775
Considering even a 12 week vacation in India while you undergo treatment is
cheaper than the alternative and also legal, the pricing of the US drugs is
very... interesting.

There's probably plenty of other countries where you could get treatment for
cheap too.

~~~
greenyoda
Hardly anyone with a regular job can just decide to take a 12 week vacation.
You'd either have to convince your employer to let you take an unpaid medical
leave (and you'd need to have enough savings to survive for 3 months), or
you'd need to quit your job and hope to find another when you get back (not
that easy for those outside the tech industry).

------
inasio
I worked for 5 years doing epidemic modeling for HCV, from right around when
the first generation of the modern treatments became available (Sofosbuvir,
etc). When I started working it was immediately clear that Sofosbuvir et al
were a total game changer, and for a while my research was based on figuring
out who to treat first: people very sick but that were not spreading the
disease, or people with few symptoms that were actively spreading the disease

Here are a few interesting things (in my opinion) that are not so well known
about HCV:

\- Prior to 2015 you could cure HCV, the standard of care was ribavirin with
pegylated interferon. If you were lucky and had the right HCV genotype you
would take a whole bunch of pills and injections for 48 weeks, with a 50%
chance of cure. The side effects were pretty bad though, people I met that
took it compared it to chemo.

\- Currently there are treatments available that will cure any HCV genotype,
on people with advanced liver disease (cirrhotic), coinfected with HIV, with
>95% success rate. One pill per day with basically no side effects.

\- In western countries there are a whole bunch of HCV positive baby boomers,
in many cases unaware that they are infected. Epidemically they are not
transmitting the disease, but they have been chronic for many years and are
having liver issues

\- Again in western countries, the epidemic is being driven mostly by active
intravenous drug users, typically young, and often with other co-morbidities
(mental health issues, HIV, etc). Re-infection is possible, so HCV eradication
will be tough

\- There is controversy as to whether you can transmit HCV sexually, at the
least it is much harder than transmitting HIV. Conversely active intravenous
drug users that share needles will almost certainly have HCV, with HIV being
harder to transmit this way

\- In other countries the situation can be very different. Egypt in particular
has around 20% HCV prevalence, the story goes that the UN funded a program to
eliminate schistosomiasis in the 1980s via vaccination, but the campaign did a
lot of shared needles

AMA I guess

------
ineedasername
The HN headline should be changed to match the article. The current one does
not encompass the content nearly as well.

------
_ink_
Why only in the US?

~~~
astura
The recommendation was issued by the U.S. Preventive Services Task Force who
is funded by the American government whose job it is to issue evidence based
preventive medical recommendations for only the American population based on
data relevant to the American population. The U.S. Preventive Services Task
Force has neither the authority nor the funding to make Hep C testing
recommendations for other countries.

Other countries may have similar issues and their medical task forces may
issue similar recommendations, or Hep C might be extremely uncommon in other
countries and their medical task force may make different recommendations.

------
xvilka
Does anyone know what research is being done on creating the vaccine and what
are the causes that prevented creating one?

~~~
at_a_remove
Wikipedia has a brief summary, but it is a similar issue as we see with colds
and HIV: a highly variable exterior shell for the virus. About six years back,
scientists found one region that is mostly "conserved," the docking station
that latches onto a particular receptor in liver cells.

Hepatitis C, like HIV, comes in different groups, and it has six to target.

~~~
xvilka
Thanks a lot, that explains the struggle.

