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Comment by hyperman1 | Hacker News Reader

Not only the governements. Some kid in Belgium with a horrible rare disease was cut off from the healthcare system because the medication was insanely expensive and the system just could not bear it. A grassroots protest formed to pressure the relevant politicians.

Then it leaked how the big farma corp selling the medication had ordered a marketing company to create more demand. The kid was deemed a cute enough case to sway public opinion, and tailor made news was generated to cause the formation of the grassroots cause.

The kid, the parents, the supporting grassroots protesters were all unknowing pawns, misused as succers in an extremely cynical marketing ploy.

I've since heard about companies existing just to create databases of cute poor victims for just about anything, to support creating grassroots movements for big corporations on demand.

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At the risk of oversharing too much personal information, similar stuff happens in the UK. I have a hereditary condition that can be treated with a specific drug (quality of life changing impact). My sister shares the same condition. She has access to the drug because she lives in Wales, UK which has degree of autonomy from England, UK's health service. I don't have access to the same drug, with the same condition because I live in England. The drug concerned is also incredibly cheap to manufacture, and is widely available elsewhere, but big pharma has chosen to place a ridiculous premium on it despite the fact it's long paid back the R&D costs. It is scandalous, and it needs government policy-level intervention. There are MANY similar examples of this kind of market abuse.

PS. I'm not looking for suggestions to resolve this issue - I'm confident every avenue has been exhausted and am resigned to the situation. I make this post this to explain how abusive some market operators are, and how arbitrary access to medication can be even in fully developed nations.

I'm not making any suggestions about your case. I'm just curious based on your experience, would it be plausible for someone in England to just sign up with a GP in Wales if they wanted to if the treatment offered was different than England (or the reverse)?

I'm not suggesting that anyone commits fraud or suggesting that this was a practical solution in your case. I'm just curious if that is illegal or how that is enforced.

All I could find was this: https://www.england.nhs.uk/ourwork/part-rel/x-border-health/...

Theoretically it could work for someone living on the border I think, but the funding process is discretionary and I guess that might increase the likelihood of NHS Wales refusing the application.

I wonder about this. You see I'm trying to think this through. This was a (very) "long-tail" medicine. There aren't many people who have this disease. So it's kind of tough, splitting this up, seeing who is at fault here ...

1) it's great that this medicine was made. Without that, the kid would have died, slowly, through suffocation

2) the company does need to recoup costs + profit (and it's not making excessive profits). The margin on the medicine is something like 10% to 15%. This is not price gouging. Curing this kid really is that expensive (AND, one might add, a very significant part of the cost is government mandated safety checking, which effectively gets paid to higher ups in hospitals and government)

3) the government is in fact the party that has (through the use of force, ie. legislation) taken responsibility for the health of children in Belgium. So you can't blame the parents for not taking extra insurance for this case.

4) Given that they have responsibility for the health of the child, and that it's a solvable problem, obviously it's a good thing their hand gets forced. That they're forced to cure this child.

5) Obviously the parents did the right thing (plus the only alternative is limiting which parents get to have natural kids, which is definitely a step too far)

6) Spreading the use of this medicine, ie. the marketing ... saves the lives of children. Tough to say that's a bad thing.

I mean ... where is the bad? Where does this go "evil" exactly?

Not OP but I will give it my take, the evil comes in the sowing of doubt which on a widespread scale leads to a loss of agency for everyone because no one can be sure what is real and what is manufactured. “When you tell a lie, you steal someone’s right to the truth”.

This all makes sense piecewise, but it doesn't make sense on the whole

I won't blame the company for trying to recoup the costs of developing the drug. At the same time, their profit on this medicine shouldn't make the treatment prohibitive

At the same time part of these costs no doubt come from the rarity of the disease. It's "easy" to run a study for something that a lot of people has, but at the point you have trouble even finding people for a double-blind study this gets tricky (it might be that a control group makes no sense here)

Something like a tax advantage for working on such drugs (and more streamlined testing) might be a better solution than the current situations

It’s not about recouping the costs unfortunately. That’s an industry talking point.

For a brief overview of just how messed up the system has become in the US (where quite a few of the drugs come from) check out this Rogan clip. You don’t have to like Rogan; his guest is amazing.

https://youtu.be/nloxR3XpgaE?si=VCdtEB2w3aK3YIth

This guy is hawking supplements, IV hydration, and "stem cell therapy for general health and longevity," among other things, on his personal website. A website that has an entire section dedicated to JRE links. Getting some strong 'Dr Oz but for JoeBros' vibes.

Can't wait to see what other fun new things creep into my youtube suggestions after watching this...

Didn’t look that deep. I just thought his summary on the drug market was interesting. Thanks for the heads up.

It’s never fun to find yourself accidentally promoting a charlatan selling snake oil. :(

1. They knew the child was in danger and capitalized on it instead of focusing on the child themselves

2. Dehumanizing the child, their parents, and basically everyone else

3. Not directly involving the child in their marketing, just using their likeness

> 4) Given that they have responsibility for the health of the child, and that it's a solvable problem, obviously it's a good thing their hand gets forced. That they're forced to cure this child.

Health budgets are finite, whether you fund them privately or publicly, and for the marginal long-tail cases those hard decisions need to be made. Personally a cutoff at some democratically determined level of long tail expense feels fairer to me than the US system where you get better treatment if your capitalism credit score is high enough and none at all if it's too low, but I appreciate that there are differing views here.

But in any case, if we accept that whether this medicine should be paid for out of public funds is a political decision that the public should be making democratically, then obviously a company with a financial stake in that decision organising a campaign to secretly manipulate the decision-making process is evil. Advertising honestly that your company can save x lives at y cost is one thing, posing as a concerned citizen is another.

I cannot find this story online, what is the name of the child or parents?

Probably this case...

https://pharmaphorum.com/news/novartis-in-political-row-afte...

https://www.brusselstimes.com/all-news/belgium-all-news/heal...

https://edition.cnn.com/2019/08/07/health/zolgensma-data-man...

https://www.lalibre.be/economie/entreprises-startup/2022/01/...

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