Hepatitis C kills more Americans than all other infectious diseases combined | Hacker News Reader

Hepatitis C kills more Americans than all other infectious diseases combined

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266 pointsvo2maxer259 comments

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... ). 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 ). 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.

Nice.

It would be really great if you guys were to partner with other helping infrastructure, such as recovery centers, salvation army, homeless shelters etc...

Getting more people tested for treatments on all levels is a good thing, IMO

Absolutely - but inexpensive testing may not help much when the cost of treatment is in the tens of thousands of dollars[1].

1: https://www.medicalnewstoday.com/articles/323767.php#drug-ty...

> the cost of treatment is in the tens of thousands of dollars[1].

It really isn't. That's like walking in to a car dealership, asking how much the car is, and then accepting the salesman's first offer at face value.

In reality, insurance will typically cover HCV treatment in the US. Because there's so much competition between HCV drugs, the insurers are able to negotiate deals that are less than a tenth of what the sticker price is.

The parent comment was replying to a suggestion they partner with organizations who typically help low income and homeless people. I doubt most of them have insurance.

most dont - but you'd be surprised at how many actually do. For example, there are a TON of Vets with PTSD and have coverage through the VA, and MANY are addicts and homeless and low income - but still covered through the VA.

Edit:

Source, experience in this area and my brother is director of the VA health system for the state of Alaska.

> 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.

  That's not much of a problem

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

> 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.

> On top of that, some countries (such as Germany) refuse to treat acute infections with antivirals

Well, that's one way to save money…

> Well, that's one way to save money…

In the short term, yes. In the long term, it means far more people to treat overall, because more people get infected.

That is obviously not "full STD screening". Missing:

human papilloma virus (HPV), mycoplasma genitalium, trichomoniasis, chancroid (haemophilus ducreyi), Lymphogranuloma venereum (LGV), Methicillin-resistant Staphylococcus aureus (MRSA), molluscum contagiosum, scabies, crabs

MRSA is an STD?

I also wouldn't call scabies an STD. Just as likely to pick up scabies shaking someone's hands then someones........

No, scabies transmission requires sustained skin-to-skin contact. You can't get it by shaking hands unless it's some kind of publicity stunt where you shake hands without stopping for fifteen minutes.

Skin to skin contact

So the flu is also an std.

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.

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?

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.

There are quite a few adults today who might not realize or remember receiving blood transfusions as young children. It's worth asking your parents, and when in doubt get tested.

> 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.

This wording is a little ambiguous because "catch" can mean both diagnoses and the point of infection. So I read that as you were infected by hep c during a cosmetic medical procedure.

Sorry, English isn't my first language. To clarify, I signed up for an elective cosmetic medical procedure. The doctor ordered pretty much every available lab test there is to check for any possible complications. One of the test revealed that I had elevated liver enzymes. A couple of follow-on tests later confirmed Hep C. I never went to through with the original cosmetic procedure because I'm no longer in the mood for it.

Completely out of curiosity: why did you need a blood transfusion as a child?

I have this genetic disorder called G6PD [0]. It's pretty common, with about 5% of human beings having it. Most people who have it go through life without ever finding out they have it, because it has almost no symptoms.

One of the symptoms though is that eating fava beans can kill you. I basically ate a bunch of these beans and soon went into shock. I was rushed to the hospital but the doctors couldn't make an accurate diagnoses. It was kinda like an episode of House, except with just regular doctors. They knew I had acute hemolysis but didn't know what was causing it. Then a nurse suggested that a blood transfusion can fight the hemolysis even without knowing the root cause; that blood transfusion saved my life. It was much later that the doctors found the G6PD; turns out my great-grandmother had it too.

That's another thing: your doctor should be informed of every major medical issue that your genetically-related family members has, since it could potentially help their diagnoses. From genetic conditions, to even common stuff like high blood pressure and diabetes.

[0] https://en.wikipedia.org/wiki/Glucose-6-phosphate_dehydrogen...

I'm so glad I asked. That was fascinating to read and further research. Thanks for sharing.

Pretty common condition in Israel among Iraqi descendant Jews. Babies regularly get screened at birth

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.

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

Hepatitis C is transmitted through blood and body fluids.

So what do they conjecture was the means of contracting it? Excellent write-up, btw, and thanks for it. Totally agree with use-what's-been-paid-for regarding checkups, as it's a win-win all around, for everyone.

If I tell this to my doc he'll just explain me the risks of preventive screening.

I think the risk of a blood draw has to be just about as close to zero as one can reasonably get.

It's not the blood draw, it's false positives resulting in unnecessary expensive and frequently invasive procedures done. A quick Google search for too much screening provides many results on the topic.

I think that's hyperbole at best.

Tell your hypothetical idiot doctor about the new guidance coming from the CDC and watch how fast he shuts his stupid hypothetical mouth.

Do you have any theory about how you caught hep-c?

What's your experience with treatment? Did your insurance cover it?

I got it from a blood transfusion when I was a child.

I got diagnosed back in 2016, and the available treatments back then wasn't great. As an alternative, my doctor signed me up for the clinical trials for the drug now known as Harvoni. I figured that it's a moonshot and didn't pay it any mind. (Having read Stephen King's Firestarter didn't help either.) I also moved to a different city for a job. Months later the drug company called and told me I qualified. The drug trial would have been free and would have cured my hep C, but alas I can't afford to quit my job and fly back to the old city for 3 months. (In hindsight I probably should have.)

Around 2018 when generic Harvoni became available from Indian manufacturers, I got serious about curing my hep C once and for all. I found a doctor that's willing to work with foreign-sourced Harvoni and ordered it online for $1300 (all out of pocket). I started the treatment under my doctor's directions and it went smoothly.

I used to do HCV research in British Columbia. Something that might be useful for you if you haven't yet started treatment is to see if you qualify for a settlement. In BC in particular there was a class action lawsuit the compensated people infected from blood products (between 1986 and 1990) [1]

[1] https://www.callkleinlawyers.com/class-actions/settled/hepat...

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.

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.

"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...

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.

High prevalence of hcv isn't just due to lifestyle factors. Baby boomer age group for example have a very high prevalence primarily due to spread by unsafe medical practices before the medical community knew about hcv:

https://www.healthline.com/health/hepatitis-c/why-do-baby-bo...

Detection/treatment/control of infectious diseases has an additional intrinsically social dimension beyond the individual.

On the subject of shared costs/benefits: The wealth that allows us modern healthcare is not so much the wealth we are producing today, but overwhelmingly more the wealth that the countless generations before us have created. That one person should benefit disproportionately from this wealth, just because by some narrow financial measure their small contribution is slightly less small than another's, is surely against natural justice. Healthcare is our birthright, part of the Universal Basic Stake that we each inherit simply by being born.

And the moral one. You could have gotten any conceivable illness while having had optimal healthy habits forever.

The US pays around 2x the cost compared to any other country, and just as much as the others from taxes, presumably just to be able to say 'F YOU' to those who can't afford care.

This is a gross mischaracterization of the position I and mamy others hold. Fundamentally, I will pay twice as much to avoid the state dipping its slimy fingers into another aspect of my life. More practically, our screwed-up healthcare system resulted from state involvement (FDA bureaucracy, wage & price controls, etc.), so I don't think more state involvement will fix a thing.

Well, it's what happens in practice to real people. So go you.

Edit: It also doesn't make sense. You are giving the government just as much money as people do in northern europe, and the government gets to play around with it and decide JUST AS MUCH about you and your care.

You know what really screwed things up? The ability for people to pay (two times, ten times, whatever) to get whatever they want and not give a f about how this affects society, and in particular the people without the ability to pay $$$ to get their will.

What on earth are you dreaming that could give you the right to pay for the ability to deny health care to the rest of society??

Because without that society, you too, are nothing.

I am not paying to deny any one any thing; rather I am simply not paying for them to receive it. What is wrong with paying to get what I want? How does my purchase of medical treatment harm another?

> Because without that society, you too, are nothing.

This reflects a profound ideological difference between you and me. I believe the individual's value is a unique, personal thing that exists independent of society; you seem to think individuals are without value on their own. You are evidently a much more collectivist person. That's fine, go form your collective, but don't force others to enter at gunpoint.

But you said you would rather pay twice as much for healthcare if it avoids that money would also be spent to help others. Sounds to me like you'd be paying extra so others don't receive it.

I'm probably misunderstanding something you said here, because even accounting for that profound ideological difference, that still seems really weird.

And speaking of that, well first let me deny that I think individuals are without value on their own. Indeed I am apparently much more of a collectivist person; but it is because I believe in every individual's value that we all should take care of each other, in order for that value to prosper. What I meant was, without a society, you are just some weirdo without a bank account, knocking on a doctor's door, twice. Which was probably a bit hyperbolic.

I was going to argue my side of this ideological divide, but I should really be spending my energy elsewhere (what I had half-written was getting way too long) ... so I'm gonna leave it at that.

> But you said you would rather pay twice as much for healthcare if it avoids that money would also be spent to help others. Sounds to me like you'd be paying extra so others don't receive it.

No, I said that I'd pay more for a private vs a cheaper _government_ alternative. My objection is to government involvement, not to helping out my fellow man. I give to private charities because I believe they are more effective and more moral.

> 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.

Then you'll be happy to know the morbid truth: smokers and alcoholics have lower healthcare costs over their lifetimes because they tend to die earlier. If everyone smoke and drank to excess, your insurance costs would be lower.

However, this truth ignores another morbid truth: some people you love, maybe one of your kids, a relative or even perhaps even yourself, are statistically likely to smoke, drink or do drugs to excess.

> 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.

I mean, at least you recognize the irony. Empathy is learned, and perhaps you could learn to be empathetic towards others.

You should try some compassion--they say it's also a healthy life choice.

And, that must be pretty convenient, how the legality of drugs just happens to line up exactly with how you judge people on whether they're worthy and deserve health or not.

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.

Sure, some portion of people in distress contribute overall very disproportionately to health care cost. This includes people who make poor health choices (over-consumption of sugary beverages, unhealthy drug and similar things), people who are homeless and people who chronic health problems (through work-related injuries, random chance or actual poor decisions).

There seem to be two reaction: "OK, then just don't allow them health care, problem solved" or "we need to prevent people from getting into that position in the first place."

I would say the first reaction is counter-productive, poorly thought-through and morally indefensible. Obviously, I think the second approach is crucial (obviously requiring quite a bit of effort). The first position is very common, however and it's kind of sad, for both the people who think this way but much more for the consequence.

I think the only reason people jump to the first position is: A. The situation is presented in isolation and these people aren't considering the consequences. B. There's a human tendency to jump to a belief without fully exploring the evidence. C. Defending a belief often just makes the defender more defensive, especially since changing would make them admit they holding a fairly cruel and immoral position.

I think the article from a couple days ago about human belief formation is very relevant for this discussion.

see: https://www.youtube.com/watch?v=bvebjL48f-w&feature=youtu.be

> 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.

The question is not which subpopulations the patient may belong to, but which ones they may have had contact with. It doesn't matter how well-off you are if you ate dinner last night in a restaurant where the staff cannot afford to be screened and treated for hepatitis. That particular transmission vector is more relevant to Hep A than Hep C, but the general point for public health policy at a high level is sound: you cannot ignore under-served populations that live amongst you, because people you don't care about can still get you sick. Yes, there are some nasty diseases that for now appear to be limited to only sexual and needle transmission, but we shouldn't shape our entire approach to public health around blaming the victims of those particular diseases.

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...

Jesus how much did these drugs cost to develop? Are these numbers justified?

It’s priced based on ability to pay. US it will be 100,000 other countries it will be less.

It isn't priced on the customer's ability to pay: it's priced on the companies' ability to gouge.

Well, it is discriminatory pricing. If someone isn’t saying it is too expensive you haven’t priced the product aggressively enough. In the US market the profit was maximized at 100k, in other markets the profit is maximized at a lower price level because almost no one can afford 100k.

Yup, the generic version of the drug is price at $384 per bottle of 28 pills in India

Here's an article on how the patent did not affect it's price in India: https://m.economictimes.com/industry/healthcare/biotech/phar...

Ability to pay? Is that a joke?

Considering that 40% of Americans can't cover a $400 emergency expense[0], what makes you think they can pay $84,000 for a 12-week treatment?

[0]: https://money.cnn.com/2018/05/22/pf/emergency-expenses-house...

Maximized for the total bottom line it isn't a joke. That some people die is not a consideration for those that control access to these drugs, the question is how many people should die in order for them to make the most money of the ones that stay alive. Think of the ones that die as marketing.

This is the only sincere appraisal of the healthcare industry in the US I’ve seen on HN in months. Thank you for your clarity.

As with most commercial goods there's a market identified and the goods priced accordingly to maximize profit.

This means that somebody is priced out no matter what. Given the state of American healthcare it's easier to reconcile if you remove the emotional part and view a drug treatment as, say, a television. If I make a 50" television and price it at $500, I accept that some people will not buy it and target my television to my intended market.

What I'm saying is the drug companies are probably fine saying "ok, some people can't afford it, but we maximize profit by selling at a premium to those that can."

All that said, if it's life saving you might be surprised what people can and will do, savings notwithstanding.

> All that said, if it's life saving you might be surprised what people can and will do, savings notwithstanding.

Withholding a life-saving treatment has to be criminal in some way.

I just can't imagine a hospital sending people home to die because they can't pay.

Closest thing is called EMTALA:

https://en.wikipedia.org/wiki/Emergency_Medical_Treatment_an...

Except it isn't. You can debate the moral questions behind drug pricing. But it's entirely legal for pharma companies to set the price for the drugs to maximize their profits. It's logical.

What exactly is logical about letting someone who figuratively has you by the balls decide the price for a drug?

The logical thing would be having your insurance negotiating on your behalf ahead of time.

Also "but it's legal!" is not a valid argument in a debate about whether something should be legal.

You'd be looking to criminalize rational behavior - a difficult and quite often counter-productive endeavour.

First, there's survivorship bias. The hospitals that eat the costs of saving lives eventually go under or can't compete with the ones that invest in better doctors, equipment and so on. What you see in the end is lots more hospitals who are willing to withhold life-saving treatments than ones that will treat anyone no matter what. We may in theory want everyone to be treated, but in practice, our market behavior of seeking cheaper treatments and better doctors sways hospital behavior as well.

Second, there's unintended consequences. A hospital going under to save some lives can have disastrous consequences on the rest of the community - non-life-threatening issues turn into fatalities with the hospital gone, leading to more lives lost than if the hospital was "cold-hearted" and "calculating". Hospitals are faced with this moral dilemma every time they do their budgeting.

Third, there's utilitarianism. Is saving one life no matter how costly the way to go? What if you can save two lives for the same price? Is saving an old person's life the same worth as saving a young one's? What about "saving" someone's life but leaving them functionally crippled, vs dealing with non-fatal conditions in people which might bring them back to full function? How should a hospital spend its finite resources?

When you mix in all these concerns with the practicalities of the situation(noone is working with perfect information, and hospital staff often has to make snap judgements), you're bound to get different outcomes, including sending people home to die, depending on how the hospital lands on this balancing act.

It's difficult enough to craft a law to deal with the moral issues, but then you also need to think of the legal issues in enforcing it, and how the enforcement could lead to further unwanted consequences. Then, purely from a utilitarian POV, think about funnelling all the costs of enforcement into a charity - which one is more effective?

Taking the television example a bit far - one can imagine that one company makes radio, other makes ~telephones~ cellphones, oven, etc. These are all electronic gadgets that are used for different purposes.

However, most if not the entirety of drugs is to cure disease and save lives (or significantly improve the quality of live). There is one market as opposed to a market each for the types of gadgets.

Which is why something as trivial as say a surgical equipment gets priced exorbitantly because without that there’s no “whole functioning gadget” (surgery).

The free market economy doesn’t work in this case.

> The free market economy doesn’t work in this case.

While I think this is self evident, it depends on your definition of "working."

If we - a I personally think we should - attach a social caveat to capitalism that requires we do what we can for people less fortunate, it fails miserably because we lack a mechanism for fostering unfettered profit while ensuring healthcare is available to all in a reasonable form. No such mechanism may exist, but I think the problem is we keep trying to shoehorn half measures into the current system and expecting a miracle.

>If we - a I personally think we should - attach a social caveat to capitalism that requires we do what we can for people less fortunate, it fails miserably because we lack a mechanism for fostering unfettered profit

In the case of intellectual property/technology you are mistaken. Patents have an expiration. Capitalists are provided a time limited monopoly for the sake of extracting rent in exchange for development of that technology. But after the expiration, it becomes public domain.

In this case, all of the drugs mentioned will eventually run off patent and be available in generic form for very little cost. Future generations will benefit considerably. This is where the moral argument becomes most powerful. Think of the potentially tens to hundreds of billions of people that will benefit from this in the future. Should we stop the pipeline of drug development because some people can't afford it today?

You're operating on a false dichotomy, though. Why is this the only environment you can envision wherein drugs can be developed?

Because the only alternative economic system, Communism, was a total failure at drug development compared to the system we have. We have an example of a working system and another, much less productive defunct competitor.

Because it's the only system shown through out history to work?

If there are better alternatives, why aren't other countries uses such a model? Why is the US _THE_ powerhouse, followed on by other highly market driven economies?

People "envision" schemes all the time. I prefer to live in a world where my drugs are real, not envisioned.

Most Americans wouldn't end up paying the 84k. Their insurance would pay for most of that, and negotiate it down further - the other day I was picking up a drug that without insurance would cost over $1,000. I paid $34.

That’s garbage. People without insurance are utterly fucked. The uninsured are sacrificed as a negotiating point against insurers. “List price is $5000. We’ll cut you a deal at only $2000!”

Yep, that's all true. It's worse, actually - the government sets reimbursement rates as well, so when they tell a hospital 'we are only going to pay you 60% of what you charge' what do you think a hospital is going to do in response?

This is a valid thing to be concerned about, but it appears to be false. Gilead has programs that help uninsured people get their drugs, including Harvoni. https://www.gilead.com/purpose/medication-access/us-patient-...

It depends on your plan. If you’re on a HDHP, chances are that prescriptions are not covered until you hit your deductible.

Even if that's the case, unless your deductible is $40k, which I have never seen before, the insurance would still cover the majority of the cost. Plus if you have chronic Hep C, you're likely spending thousands a year as it is and will continue to do so indefinitely.

Out of pocket maximum is the relevant figure, and that's $8k for individuals and $16k for families:

https://www.healthcare.gov/glossary/out-of-pocket-maximum-li...

Insurance is something you pay on all year long, you will eventually pay the 84k and more.

sure - let's say you pay your own insurance, which most people do not do - let's also say you pay an average of $5,500 a year for it, and have insurance from age 26 to 72 - that's 46 years. So you have now spent $253,000 over your lifetime, which is definitely above the 84k.

If you only have one disease or hospitalization in your life, however, you're rare - this is also extremely unlikely given your chronic Hep C. As an example, the average cost per person in the US, including healthy people, is $10,000 a year, 4,500 more than your insurance cost.

In all health insurance, the healthy are subsidizing the sick. If you have Hep C you are costing your insurer a lot more than you're paying them. If you're a very healthy individual and rarely have any issues, you're overpaying by a lot.

The vast majority of Americans have some form of medical insurance so a patient's out of pocket expense would typically be far lower.

Insurance increases net costs via added overhead. So, it’s ~80k * ~1.30 * (number receiving treatment) / (people paying insurance). Aka, it’s both more expensive and more affordable.

Health insurance in the US has overhead capped at a maximum of 20%, or 15% in large employer groups.

https://www.healthcare.gov/health-care-law-protections/rate-...

What percentage of the recepients costs are insurance related overhead as well? (Yes, that includes the time doctors spend arguing with insurers).

Surely, there is room for optimization, but in the alternative case of taxpayer funded healthcare, I'm sure the government is going to ask doctors for justifications for the same reasons insurers do. Someone needs to provide a second opinion on whether or not procedures and medications are appropriate for accountability purposes.

Governments add far less overhead in this area because they have more data and can thus use random inspection of bills for validation. Further, when setting rates every insurer has a separate negotiation involving even more overhead.

The government hires health insurance companies to do the inspections. I don't know of any US government that doesn't contract implementation of Medicaid/Medicare to UHG/Anthem/Humana/etc. So all the insurers have all the data anyway, and they are not inspecting each and every bill, they are also using heuristics.

Using heuristics on smaller sample sizes is inherently less efficient. You can get reasonable polling data on 50 million voters using 10,000 samples. That’s 1 sample per 5,000 voters. Drop the election down to a local election with 10,000 voters and the same ratio provides 2 samples telling you almost nothing.

Thus, if 5 insurance companies send patients to the same doctor you simply have more overhead.

Fraud in government programs have much harsher criminal penalties and are more aggressively pursued.

https://www.propublica.org/article/health-insurers-make-it-e...

https://www.propublica.org/article/we-asked-prosecutors-if-h...

https://www.propublica.org/article/how-to-make-health-insure...

Spending 80% of your premium on direct heathcare cost means ( 1 / .8 - 1) = 25% cost increase, but that’s on top of the heathcare providers insurance related overhead. Insurance only adding 30% to total heathcare costs is a reasonable ballpark though likely an underestimation.

That really should be an argument for collective payment so the mean ability to pay counts and nobody is priced out. I'll never understand how people can support the US health care system.

Americans tend to go into massive medical debt, still they can have that credit extended to them because over their careers they’ll make more than 84,000 and probably pay it off if they live.

Collecting part of that amount is still profitable because there’s no basis in the actual cost of treatment rendered.

Compare to someone in (poor country) who is lucky to collect a few hundred dollars a year, no one will ever extend that person 84,000 in debt, because they don’t have any chance of making that amount over the course of their entire career.

Ability to pay is significantly different from “savings.”

The $400 emergency expense number is about having savings (extra money in the bank) which is really a complicated issue relating to financial literacy and debt to income ratios. You could have someone making 6 figures living in an expensive house, driving a nice car, who can’t come up with $400 because he’s overextended himself. It’s a question of liquidity rather than ability to pay. If his wages get garnished, maybe he loses the house and has to sell the car, but the medicine still gets paid for.

In many other countries getting treated for hepatitis C won't cost you a dime besides your regular health insurance payment.

Prices are often negotiated by health insurers and are pretty much guaranteed to be lower for that reason. Depending on what system you are in, you might never even learn what your treatment cost. Not that you should care.

That depends on the treatment and politicians’ willingness to pay for it. Take cystic fibrosis in England: Until this year, modern, highly effective (and, yes, expensive) treatments available for years in the US—covered at low out-of-pocket cost by insurers there—were unavailable through the NHS.

The exception or the rule?

The same was true of hepatitis C in England - even though NICE, the body responsible for assessing what drugs should be available on the NHS, found that the new treatments were cost effective at the price they were being sold for, the NHS balked due to the total cost of curing everyone and refused to offer it to anyone except a handful of patients who already had severe liver damage.

This is true. The new HCV drugs, even at the outrage inducing price of $90k, easily met the NICE cost effectiveness threshold.

The issue was really volume. There wasn’t enough money to treat everyone.

Drug R&D includes failures - not saying they aren't for profit companies but there is significant cost (in the billions yearly) and risk in running a pharmaceutical research company

These drugs are priced this high for the sake of health insurance and the screwy pricing market based around it.

When you get the final bill with the “adjustments” and “discounts” it will be far less.

If you signaled to the provider you are paying cash it’s far less.

My physical therapy was $1200 a visit to my insurance provider, and magically $40 out of pocket once my insurance cut off my covered trips.

Drug development is incredibly costly. It's also something of a long term gamble. It can take 10-20 years to develop a new drug. A lot of that time is spent testing safety and waiting for approval. As a drug company, you need to have several new drugs in your pipeline at any given point, or you'll be seriously fucked if one (or more) of your products don't pan out. It's basically a high-risk-high-reward type of gambling situation.

Imagine having thousands of people on payroll, some working on drug design, some designing experiments to test the drugs, some doing the legal paperwork to get drugs approved etc, and suddenly the patent for your best selling drug expires and your latest drug doesn't work. You're pretty much boned.

The development costs per a Forbes analysis are as follows:

> "The median per-drug R&D spending of companies that developed more than six drugs – that’s only 8 companies – was $5.8 billion."

...so that is $5-6B USD per drug DEVELOPED in large companies.

Gilead - maker of Sovaldi/Harvoni for HepC treatment - has been on a development tear of late, and almost certainly falls into that range IMO [2].

For companies that produce fewer drugs - the estimates are between $700M-$1B per drug.

Note these are prices for drug R&D only ("development") - there is no guarantee those drugs developed make it to market ("approval") - Over 90% do not.

edit: source links

1 - https://www.forbes.com/sites/matthewherper/2017/10/16/the-co...

2 - https://en.wikipedia.org/wiki/Gilead_Sciences#2010_to_2019

I imagine those numbers wouldn't be all that reliable for a bunch of reasons - companies would have vested interests in over or under reporting costs for various reasons, technology progressions mean previously expensive to develop drugs may be cheaper if they were to be redeveloped now, and sample size probably wouldn't be large enough for the raw data to be used when bankrolling pharma research ventures.

Edit: I should contextualise this by noting I have basically no experience with pharma so grain of salt blah blah

I dont think you should be downvoted because thats valid, yet hard to use as an argument, paranoia.

The basic assummption in cryptography is “assume the target system is already compromised” so i would wager you are partially correct. Its just that its not the whole story, especially if u think that private persons get massssive discounts if they try to privately pay (from reading below comments about quotes to insurance companies vs private people).

Its a sad dynamic thats probably ruining more loves than it should.

I think your points are fair. Sample size for their analysis was about 100 drugs. FDA approves about 25 per year.

My main point is that drug development is more expensive than most realize. Beyond R&D, a lot of that cost is in postmarketing (after approval) safety studies and surveillance- to catch side effects not observed in clinical trials. This process can be made somewhat more efficient as you suggested, but at the end of the day a human is reviewing every side effect report and reporting those back to regulatory agencies etc.

I am not qualified to discuss the economics re: your point on pharma r&d - drug discovery is it’s own thing aside from actual drug development.

It cost exactly 11 billion for Gilead to "develop" Sofosbuvir

(they bought Pharmasset who discovered the drug [1])

[1] https://en.wikipedia.org/wiki/Sofosbuvir#History

They didn’t buy an approved drug, they bought a clinical lead. They still spent a ton getting it approved.

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.

I would hope that as more people test and get treated and the drug production gets ramped up, the price should go down significantly. A couple of decades ago only people like Magic Johnson could afford HIV drugs, for example.

>there’s absolutely no reason a 12 week treatment should cost around the mean annual US income.

What if it was synthesized in 5,000 steps from pure gold or something?

But is it though?

I can't find any references that say the cost of manufacturing it or inventing it, so the only indication we have that it is expensive is the high price. Interferon is an entire protien so it can't be that cheap.

I’m not trying to disregard the need for cheap treatment, but by preventing pharma from developing drugs that they profit from kills all R&D.

I’d be open on a success based public funding where IP becomes public domain, but I doubt big pharma would ever pull that trigger.

I’m thankful for modern day drugs, like PReP and PEP (pre and post hiv exposure drugs), vaccines and cancer treatments to name a few, it just sucks that those less fortunate don’t have access yet.

Did you complain this much about the transplant surgeon's bill?

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.

It's straight up price gouging though these companies are doing.

As usual the answer probably lies somewhere in the middle.

How do you define gouging? Because a number looks big?

Is Google/Apple/MS/FB price gouging? Their net incomes are massive.

I'd be hard pressed to classify a situation were a company introduces a new product 80% cheaper than the alternative, and still be guilty of price gouging.

> It's straight up price gouging though these companies are doing.

I'm not sure the margins support that allegation. Sovaldi is manufactured by Gilead (which also makes a Harvoni generic). They don't break out drug-specific margin, but http://truecostofhealthcare.org/wp-content/uploads/2014/12/G... and https://www.investors.com/news/technology/can-gilead-withsta... have some food for thought.

A couple things stand out:

1. Their profit margin varies year to year, but in the peak period from 2012-2019 it was 35-55%, averaging ~40-45%. While that's industry-leading for pharma, it's nowhere near high enough to say that their products could be, say, 75% (or even 50%) cheaper. A 20% reduction (very roughly cutting margins in half) wouldn't make it meaningfully more affordable and I don't think most people would describe that as gouging.

2. Apparently it actually cures the disease for many people, so this is a once-and-done treatment. Compared to nearly all other healthcare interventions, curing a life-threating chronic degenerative condition at this price is cheap. (Cost per death prevented of other interventions: https://journalofscientificinnovationinmedicine.org/articles..., https://twitter.com/troyd/status/1195811217056485377)

3. After they cured so many people, there was a much smaller market (success!). Revenue and margin both dropped a lot: https://www.macrotrends.net/stocks/charts/GILD/gilead-scienc...

4. "Gilead Sciences was also unique in that it was the only pharmaceutical company I examined that spent less money on marketing than they spent on research. Gilead’s marketing budget was only 15% of their total revenue."

> 3. After they cured so many people, there was a much smaller market (success!). Revenue and margin both dropped a lot: https://www.macrotrends.net/stocks/charts/GILD/gilead-scienc....

This seems like a pretty clear example of why looking at revenue and margin like this is not a good way to manage this. Our goal here is clearly to eliminate the market for this product, and everyone ought to chip in to make that happen, not just the people who currently are at risk. The whole funding model is fundamentally broken.

> The whole funding model is fundamentally broken.

That's a totally reasonable point (and perhaps worth starting a separate top-level reply about), but it's not at all what the GP comment was arguing.

It depends on your definition of price gouging. You're defining price gouging as having the price reflect the marginal cost of the drug. I (and I think GP as well) would define price gouging a little more broadly and say simply that it's setting the price unreasonably high. Since marginal cost is not a reasonable pricing mechanism to achieve the desired goal, It's not a good basis for an argument that the price is reasonable and not gouging.

I think the term for what you're describing is "Supracompetitive pricing": https://en.wikipedia.org/wiki/Supracompetitive_pricing

(I'm not sure whether the evidence justifies that claim either, but the claim is a lot stronger than gouging)

I wonder how many people that complain about healthcare costs would be willing to pay higher taxes for taxpayer funded research for medications and education to increase supply of doctors.

Presumably, R&D costs should be shared across all countries rather than individual countries footing the bills. Alternatively a cost benefit from such R&D spending such that US R&D subsidies resulted in free drugs for the US market would be acceptable.

Instead, the US both has the largest R&D subsides and the largest drug prices.

This requires some IP protection. Even if it's weaker than in America, at least some. Many nations adopt the stance that if it wasn't invented in their nation, screw the other guy, they're taking the IP. Many first-world nations, including Europe and Canada, do this and use the threat thereof to force down prices because their socialized medicine does not provide sufficient funds.

Well, they should use a GPL3 license on their drugs then. ;)

IP protection isn't a big deal for countries sort out to give equal ownership for split funding. We even have every major country from the US,Canada,Europe,India,China, and Russia all working the first full-scale cold fusion reactor via the multi-billion dollar ITER project built in France.

Basically any other country than US is a better alternative for the patient financially.

How many of these “miracle cures” are developed in the US?

All of them. Then they're sold in the developing world at cut rates, subsidized by the US rates.

And how much of that miracle cure development is on the backs of tax-payer funded research? The US would be better off having a fully nationalized and internationally collaborative drug research system.

"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/ranking-members-news/wyden-gr...

> Pricing after that was just how much profit they wanted to make.

While that's by definition true of any pricing decision, there's a lot more to the story: https://news.ycombinator.com/item?id=21883254#21884030

Wrong. Gilead made Harvoni. Pharmasset made Sovaldi.

Is there something that’s supposed to be inherently evil in acquiring a company anyway?

Because pharmasset, the smaller company, had forecasted a price of 36000$ for Solvadi. With Gilead buying it out, it was able to reach a third of that price point and that’s a win to me.

Harvoni is a combination of Sofosbuvir (Sovaldi) and Ledipasvir.

Pharmasset discovered Sofosbuvir (Sovaldi), Gilead acquired them in 2011.

Gilead developed Ledipasvir some time after that.

I was contesting the phrase "literally made a cure for a previously uncureable disease". Which is why I called out the acquisition. They literally bought it, not made it.

Here in Canada there is some debate over sofosbuvir and velpatasvir their cost. A person may be cured of hepatitis C in just a few months. That would be fantastic for them since done soon enough may prevent liver fibrosis. And really for the tax payers here in socialized medical land it saves money by not treating infected people for decades.

> Is there something that’s supposed to be inherently evil in acquiring a company anyway?

See the fable the little red hen. It's work ethics.

https://en.wikipedia.org/wiki/The_Little_Red_Hen

> 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.

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.

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?

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.

Presumably at least some of the seed funding for these research facilities is from the majors, who likely in turn lease research capacity to them. Interesting model

What gets tiresome is this tactic of declaring that since one does not have a fully documented 5-year plan in a binder, one is not allowed to bullshit bullshit.

That's bullshit.

It is perfectly acceptable to know something is wrong without wishing to extemporaneously perform for you.

It's not perfectly acceptable to "know something is wrong" when one does not understand the parameters of the problem at hand. Stating that you "know something" doesn't mean you know something.

I hear many people "know something" about health insurance premiums rising too much, blaming ACA for what they "know" are unnecessary increases in premiums to line the pockets of the fat cat insurance company executives.

Except they don't "know" that the ACA provided a mechanism for far more people to get healthcare for far more health issues. And since you don't get more of something for free, obviously the costs have to be paid somehow. And if they looked at the numbers, they would see that healthcare cost increases have slowed dramatically since ACA was effected.

Have you wondered why, with so many potential customers, no one developed such a drug before if it were cheap and easy?

> Can’t imagine having to decide to risk my entire financial future to deal with Hep C.

You'll be glad then to hear that very few people actually are.

Those prices that are cited are meaningless - most insurance plans these days will cover the drugs, and even the insurance companies aren't paying those prices to the pharmaceutical companies, because there's such fierce competition among the companies producing HCV drugs that they'll cut deals with the insurer for a tiny fraction of those sticker prices.

  US pharma companies are completely out of control

You are free to choose not to use any meds or therapies developed by US pharma companies. Fight the Power!

There’s a $300 treatment on the way: https://www.dndi.org/2018/media-centre/press-releases/new-af...

or go to India now and be treated for $1k [1]?

[1] https://www.medicaltourismmag.com/article/hepatitis-c-treatm...

It’s basically to the point where it’s:

> Go to <any country outside the US> and be treated for <fractional amounts>

As an American, how does that work in practice? I know I can go to Vietnam and be treated for a small amount (I was in a Vietnamese hospital for a couple of days due to a really bad strep infection and dehydration as I was unable/unwilling to swallow, and in a separate incident, also had a round of rabies shots after being bitten by a dog there). I figured it was cheap because everything is cheap there and no one there could afford it otherwise, not because of government insurance. But if I go to Australia, Canada, UK, or any other country, how do I get access to this cheap healthcare without becoming a citizen or paying taxes? Do I qualify just by nature of being there with a valid visa?

> But if I go to Australia, Canada, UK, or any other country, how do I get access to this cheap healthcare without becoming a citizen or paying taxes?

You'd likely pay more than a resident/citizen who may not pay or may a token amount. But this full price will still be very small in comparison to US (eg full price of doctor's consultation in France is like 25 EUR).

Even Switzerland which is expensive for Europe in terms of healthcare is cheap comparatively (a simple ER visit might be a few hundreds, not thousands).

I work in a Canadian hospital. We have OOC patients all the time...Out of Country. During their stay, they or their family get told to visit the business office to set up payment. The business office is a tiny, one person desk in the hospital. They will take payment directly or will correspond with your insurance provider. This is mostly for people with emergency and unplanned admissions. I'm not sure how it would work for elective procedures or med purchasing. You could probably walk into a walk in clinic and pay out of pocket as almost all with have debit/credit machines since some things aren't covered in Canada (travel vaccines for example).

> It’s basically to the point where it’s:

> > Go to <any country outside the US> and be treated for <fractional amounts>

For Hepatitis C? Absolutely not. It's way easier for US citizens to access the drugs to cure HCV in the US than it is for, say, British citizens to access it in the UK.

If you want to talk about other conditions, fine, but for Hepatitis C, this statements is patently false.

Given that the NHS lists most of the meds discussed so far as approved treatments [https://www.nsh.uk/conditions/hepatitis-c/treatment] and Hep C is been a target for increased treatment by the NHS for the past two years I am wondering what you base your claim that it is easier for US citizens to get access to the drugs than it is in the UK?

> Given that the NHS lists most of the meds discussed so far as approved treatments [https://www.nsh.uk/conditions/hepatitis-c/treatment] and Hep C is been a target for increased treatment by the NHS for the past two years I am wondering what you base your claim that it is easier for US citizens to get access to the drugs than it is in the UK?

"Approved treatments" just means "there exists a circumstance under which the NHS will cover them". For starters, the NHS almost never treats patients in acute stages of infection, whereas insurers in the US don't distinguish between acute and chronic infections. The NHS also tries to force patients to use interferon-based treatment first before covering the newer medications. There are ways around that, but it's not simple or easy.

Go to <any country that allows ripoffs of other countries' IP and doesn't contribute to its research> and be treated for <fractional amounts>

FTFY

Go to <any country that doesn't allow publicly-funded research and discoveries to be privatized and then farmed by a rentier-class of pharma investors> and be treated for <fractional amounts>

FTFY a bit more honestly.

Except that any of your countries in that list don't actually generate any worthwhile drug.

Actually, the cost of HCV drugs is less in the US than in many EU countries due to the aggressive competition.

At least a couple of years ago there were so many treatments on the pipeline that it was probably doable to find a phase 3 trial that would take you in.

They're priced this way because they're 80-90% cheaper than the previous treatment.

Previously, with no cure, HepC patients would have eventually had a liver transplant. Liver transplants cost between $500K-$1M. Of course, it also requires a liver, so many would die waiting for a liver.

As you noted, the drugs have become much cheaper. Mavyret is ~1/2 the cost of Sovaldi, the first drug on the market (replaced by Harvoni). Mavyret actually only has an 8 week treatment, which is an improvement over the 12 weeks of Harvoni.

The competition within these drugs became so fierce that, despite these prices, no new ones are planned (last I read). In fact, one you listed here has been off the market for over a year

https://www.empr.com/home/news/two-hepatitis-c-virus-infecti...

>> They're priced this way because they're 80-90% cheaper than the previous treatment.

Your statement is true. But it also hints at another problem, which is that the default is to price life saving treatments as high as the market will bear. It's a pricing model in line with extortion, the only exception being that the extortionist doesnt have to threaten to kill you - the virus or whatever condition is already making the threat for them.

I was about to summarize by saying "sometimes a free market can mimick evil" but I just remembered it's not a free market at all. These treatments have government granted monopoly status via patents. That's why they are priced so high.

With new drugs you can make the argument that development costs need to be recovered while they are still under patent protection. Time and cost of development is high, 10 - 15 years and several billions, and a successful outcome is not guaranteed. This is the order of magnitude of a flagship space program of a large nation.

Where you really have no excuse is the price for old drugs that get bought up by venture capital. Wilson's disease is treated with triethylenetetramine. The price had always been ~ USD 600 for 100 pills until the manufacturer became bought out by Valeant, who then raised it to 20 kUSD for 100 pills. There was the usual protestations by Hillary Clinton and other politicians, but the price is still where it is. Where is the revolution?

Do development costs really need to be recovered through sales? I thought most of this research was done on federal grants.

The early research is done on federal grants. What costs real money is late-stage development and especially clinical research, startups and universities are not at all equipped for that.

The financing model is problematic. Return on investment is much higher and faster in IT, besides there is a mismatch between what the market favours and where future clinical needs are (the antibiotic crisis, neglected tropical diseases).

Isn’t the solution then to build a national infrastructure for late stage trials as opposed to putting life-saving drugs behind a ludicrous paywall, whose price is determined by the opaque malfeasance of the healthcare system in the US?

Late-stage trials are enormously costly and negative results are common. To publicly fund them, we'd have to be ok with governments spending billions and getting nothing for it. And after the fact there'd be a long line of people saying how $treatment was obviously never going to work and only an idiot would ever have let it go forward for stage 3 trials.

I'm not opposed to the idea, but I think you'd struggle to make it politically achievable.

The government mostly funds basic research, but then there is a lot of work to turn promising leads into products. Googling a bit, in 2017 the pharma companies spent $70 billion on research while the NIH spent $38 billion.

> I thought most of this research was done on federal grants

And if not, why not? There may be folks who think public research grants shouldn't exist, but since they do, what else would be worthy of such support if not public health research?

I think it's the "right" price, you want to incentivize companies to try to develop drugs that will do the maximal amount of good.

Like, you could imagine a system where you don't have a free market at all, the government would directly fund both medical treatment (like in Europe) and medical research (like nowhere right now, but you could imagine nationalizing the drug companies). So then, before the hepatitis-c drug exists, you are paying $500k for each liver transplant, and you try to figure out how much money should be allocated to that drug research program. You'd want to fund it at roughly the expected cost saving, multiplied by the probability that the drug development is successful.

In the actual system, if the drug companies try to develop the drugs, and then charge about the same price as the cost of the previous treatment during the time they hold the patent, then their expected payoff (so how much money they will put into research) is the cost of the previous treatment times the probability that they will be successful---so this high price is basically what we would want to allocate anyway. And if the drugs are paid for by the government, their expected spending over all the drugs is similar to optimal amount of direct research funding.

> I think it's the "right" price, you want to incentivize companies to try to develop drugs that will do the maximal amount of good.

So the only incentive to do maximal good is more money. And people wonder why I laugh when it's claimed that we live in a civilized society.

How much drug research have you personally done? Is your time more valuable than that of others?

Well, the only financial incentive to do good is money. But that is a tautology, not an observation. There could potentially also be other types of incentives, but I don’t see how they are supposed to apply here.

You have to make a distinction between a person and a corporation. Now I feel I should say, I'm not in favor of the "Citizens United" ruling before I start down this path.

The mandated motivation for a corporation is to maximize share value for it's shareholders. That's it, as creepy as it is. CEO's (well "good" sociopathic ones) compartmentalize everyone's jobs so they only do the little bit of bad that they are comfortable with and can distance themselves from the corporate wrongdoings, as a whole.

A singular person, or even a small group of people, have entirely different dynamics and motivations and would, normally, never make these type of decisions themselves. Singularly, they wouldn't be able to run successful multinational, billion dollar corporations either.

It's somewhat unfair to look at a single person who works at one of these companies and say that they are the downfall of society anymore than you could point to a singular person in Roman history and say, "There. That guy. He caused the downfall."

> The mandated motivation for a corporation is to maximize share value for it's shareholders.

That's actually not the case. It became dogma in the 1980s but there is no legal mandate for this.

I’m not sure that assertion is borne out by the data: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2866602/

I think two big missing factors in your analysis are (1) profit — US drug companies pocketed something around $30 billion dollars this year, and (2) inefficiency - something like $20 billion dollars went into deg marketing in the US for example, which seems to me like almost a complete waste.

Just measuring profit ignores all the companies who went under because their drug didn’t work. You’re just counting the winners.

And marketing includes things like paying a sales rep to answer doctors questions. Are you saying they shouldn’t do that.

I was under the impression that the biggest driver of marketing costs for drugs was providing free samples of the drug to doctors, with training doctors coming second and advertisements a distant third.

Depends on the drug and the market. Not all drug have a free sample program, but yes, it can add up since they account for the full price, not cost of goods.

Personnel can be a big chunk as well, since the fully loaded cost of a sales rep can be $400k per year and for primary care drugs, it’s not unusual to have 1,000 reps.

  It's a pricing model in line with extortion

This common attitude is why I fear that we won't see true cures for anything, except perhaps from government labs.

This class of HepC drugs (Solvaldi et al) are cures. Not chronic treatments, but cures. The developer only has that one course of treatment to make all the revenue they ever will on that patient.

So what happens when they are told that they can't charge prices commensurate with the result? They'll abandon a cure model for treatments that have ongoing chronic purchases to provide revenue streams over time.

Imagine this category of HepC drugs being marketed as a $999/month regimen for life rather than $50K for a one time cure. They would face far less friction. Happy now, consumers?

This is why new antibiotic research was abandoned, by and large.

If everyone in the United States with Hepatitis C was treated at a cost of $50K it would be $150 billion dollars.

That's over 8 times what Viagra pulled in over the past 20 years.

I'm not sure where the line between reasonable profit-taking and extortion lies, but it's probably somewhere south of the GDP of Kuwait.

$150B would be the same as the lifetime sales of Lipitor, which was not even a cure.[1]

[1] https://www.kiplinger.com/slideshow/investing/T027-S001-the-...

And the cure they "created" was in reality from a university or government lab. Paid for by the citizens.

Ain't regulatory capture and 'release' great?

I used to do research on HCV. HCV was curable for at least 10 years prior to Sovaldi, the issue was that the Ribavarin and peg-interferon treatment typically took 48 weeks, had a cure rate around 50% at best if you had the right HCV genotype, and had many adverse effects. The epidemic is currently being driven (at least in western countries) by active drug users, treating them with that regime was simply not possible.

Contrast that with 8 weeks or less of 1 pill per day (and possibly less), with no side effects, pangenotypic and >95% efficacy for all (including cirrhotic individuals, HIV co-infected, etc)

The adverse effects for interferon were brutal. It has a boxed warning about suicide.

I’ve talked to people who took it and it was like having the flu for months.

That's not true. A third of infected people spontaneously clear the virus (no chronic infection develops), and before antivirals, interferon-based treatment could cure about 50% of patients. Interferon wasn't fun - it's literally cancer treatment and has similar side effects to chemotherapy, but it's not true that people would necessarily need a liver transplant eventually.

"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"

I assume that your healthcare covers this. Otherwise cheap imports are available from India, e.g. https://roidgear.net/hepatitis-c

These are the list prices. Due to competition, net prices came down considerably as the different company try and get market share.

Current prices are closer to $30,000 or less per dosing regimen.

If you go to Egypt it's much cheaper http://www.tourncure.com/en/

If you are talking about a virus only affect small amount of population, I can understand this marketing strategy.

But Hepatitis C. is a virus infects 143 million, which means it even with a $10k profit margin for one in ten here should be at least $1 Trillion profits. A company like BMS do expanding like $20 billion annually. For me all most like they could afford to operate like half of century for just one drug. No way it is sold for almost $100k price for just breaking even.

Correct: Sorry it was Gilead Science developed Harvoni. So $22B revenue minus $8 operating incoming.

No, Gilead didn't develop Harvoni/Sovaldi/Sofosbuvir, it was originally discovered by Pharmasset, and then Gilead bought them for 11 billion [1]

[1] https://en.wikipedia.org/wiki/Sofosbuvir#History

Oh, thanks.

That simplified R&D cost calculation. $11B for $3.5 m persons in U.S. and 90% successful rate means R&D cost(merge cost) definitely less than $4k per person.

In some EU countries treatment for hepatitis C is already included in the government sponsored healthcare program.

> 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.

It's worth noting that, in the US, almost nobody is actually paying those prices. Most insurance plans these days cover HCV treatment, and even insurance companies aren't paying those sticker prices to the pharmaceutical companies when they cover these drugs.

Can't they be covered by Health Insurance companies?

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.

> 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.

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"?

Also blood transfusions, which could be a wide variety of folks that have had routine surgeries, including, for example, c-sections.

I imagine a fair amount is also from unprotected sex with high risk partners.

"Sexual transmission of hepatitis C is uncommon."

https://en.wikipedia.org/wiki/Hepatitis_C#Sexual_intercourse

Seconded. I have zero risk factors: no tattoos, sex, drugs, cuts on suspicious objects, etc. There is no reason for me to get tested to avoid someone else being uncomfortable. The value of the comfortability of a random stranger to any one is near-zero.

The U.S. Preventive Services Task Force doesn't roll out any screening programs, their job is simply to make clinical recommendations.

So they are saying to clinicians "if you have a patient between 18 and 80 then current evidence suggests that screening for Hep C is more beneficial than harmful on a large scale, even if the patient has no symptoms." Plus governments would likely use recommendations to base laws around this stuff, something like passing a law that says "insurance companies must cover the cost of Hep C testing even in the absence of symptoms" and military officials may make Hep C screening as a part of a standard military physical.

Of course, I've found most clinicians ignore evidence based recommendations, but that's a different topic entirely....

I didn’t read this as advocating for everyone to run to get tested immediately. This is more a call to healthcare professionals to advocate for this testing.

One way this can roll out is when sexually active adults who are considered low risk for HepC hopefully do their regular STI screening, either they or their healthcare provider can request a HepC test.

Are "regular STI screenings" common in the general population (not sex workers) in absence of symptoms?

I'm not sure about the general population, but this seems to be quite common in the homosexual population, especially among males. The big risk there continues to be HIV, but if you're going to get screened regularly anyway, might as well check for everything else.

(Source: I am a homosexual male.)

I'm not sure there should be all that much stigma attached to it honestly. There are enough non-STI ways to contract some of these diseases that I think it makes sense for even married, faithful, and generally low risk partners to get a round of testing every once in a while.

> There are enough non-STI ways to contract some of these diseases that I think it makes sense for even married, faithful, and generally low risk partners to get a round of testing every once in a while.

Really? Chlamydia, gonorrhea, syphilis? How can you get those without having sex?

I'm not a doctor, so take this with a grain of salt, but generally something classified as an STI has difficulty surviving outside the human body. It's not impossible, and anything that allows that pathogen to get into the bloodstream is a risk factor for the infection to spread. Things like blood transfusions, or unclean practices like needle sharing, could all contribute. Sex is by far the most common means of transmission, but it isn't the only way. It couldn't possibly be; otherwise how would the first human have become infected?

Bad news on chlamydia: it can infect the eye and spread through personal contact.

Some people won’t have unprotected sex with a new partner unless they’ve both been tested. Some people know they’re in a non sex worker risk group and get tested without symptoms.

There are more details than merely having injected drugs. Blood transfusions have spread Hep C in hospital settings before widespread knowledge of the disease. Infected mothers can pass it to children through childbirth. The disease wasn't even identified until, what, late 1980s? Meaning that there are people who contracted it before then who may not know.

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?

>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

[2] http://testinfo.kaiserpermanente.org/info_assets/cpp_ga/pdfs...

[3] https://www.dynacare.ca/DYN/media/DYN/Pdf/Print%20a%20Form/G...

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

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?

The blocker is generally the cost associated with false positives. If you are low risk for hep C and you get a positive test result it is more likely than not a false positive

This associated cost is what, the price of another, perhaps more expensive, test? That doesn't seem like a big deal...

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.

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.

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.

WebMD (https://www.webmd.com/hepatitis/digestive-diseases-hepatitis...) 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/ 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?

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.

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

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

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

In Western countries?!

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.

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.

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.

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. :-/

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.

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.

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.

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).

That's a great question. In this case, the drugs are small-molecules (https://en.wikipedia.org/wiki/Ledipasvir/sofosbuvir) and they're complicated ones at that. So trying to make that at home would be impractical.

But you're on to something I've been personally interested in for a while. You can make proteins at home in cells, but to get them pure enough for injection is near impossible without expensive manufacturing equipment and testing equipment. I think the real win is going to be using mRNA coding for the protein of interest formulated in lipid nanoparticles. This type of idea would be easier to make sterile and have basically no risk of endotoxin/virus issues recombinant proteins have. I give it 10 years before garage biohackers start really getting this idea to work.

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

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

Why only in the US?

That was the scope of the report. From the first paragraph of the submission:

> "The hepatitis C virus now kills more Americans than all other reportable infectious diseases combined -- including HIV. Acute cases of HCV have increased 3.5-fold over the last decade, particularly among young, white, injection drug users."

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.

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

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.

Thanks a lot, that explains the struggle.

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