pharmaceutical company abuses sick child for media attention

[Deleted]

http://www.deredactie.be/cm/vrtnieuw...ctor_follow-up

This is currently a hot topic in Belgium.

Basically, a 7 year old child named Viktor has a rare disease that requires medication worth 18,000 EUR per month, medication which is not refunded by the National Health Service. The parents were referred to a communications agency by a patient interest group to bring public attention to this topic. the news made all the headlines and even the federal government got involved: the health minister is now talking to Alexion, the company that makes the medication, to strike a deal. discussions were already underway before the press got involved.

however, today, it turned out that the agency that the parents got referred to was contacted and paid for by Alexion, in order to put extra pressure on the minister. the parents did not know this, and furthermore it was found out that the company deliberately chose Viktor due to mediagenic profile.

This just becomes absurd...

what's your opinion on this?

[Spectral]

I don't really see the ethical problem. The company's trying to simultaneously generate publicity for their products and help a family get the medicine they need. I suppose they could just give the kid the treatment, but that doesn't really solve the problem going forward for the other people that need the treatment.

[sharpy]

I don't really see the ethical problem. There trying to help the kid and trying to get there medication covered by the National Health Service so when other people get this rare disease it will have a better chance to be treated. There really doing the kid a favor paying for his 18,000 EUR per month medication regardless of it getting passed or not..

[tutti]

What, exactly, is the abuse? Alexion is pointing out a child that needs the medication they produce as an example of why that medicine should be covered. And according to your link, "Victor's parents took their story to the press". Even if you consider the way they make their case dishonest (I wouldn't), none of that comes close to abusing the child.

[Gheld]

I don't really see the ethical problem. The company's trying to simultaneously generate publicity for their products and help a family get the medicine they need. I suppose they could just give the kid the treatment, but that doesn't really solve the problem going forward for the other people that need the treatment.

This exactly. The health minister is a dick head for refusing to cover the medication. Obviously it's profitable for Alexion if the medication becomes covered, but that's the way the world works. (And this is why a lot of people are afraid of public health care by the way)

The fact is even if Alexion just gave away the medication to that one boy for free, the media attention would die down and it would probably never end up being covered. The medication would become unprofitable for the company to continue to manufacture as well. So it's better for the government to hash out a deal with Alexion to have the medication covered.

Apparently that's what was happening, and then suddenly the media was like "LOOK ALEXION IS PAYING TO TRY AND HAVE THEIR OWN MEDICATION COVERED, THEY ARE EXPLOITING THIS POOR LITTLE BOY." and people are idiots, and don't think about the thousands of poor little boys that the Health Minister has left hanging by previously refusing to meet with Alexion about the issue.

[Akylios]

... and people are idiots, and don't think about the thousands of poor little boys that the Health Minister has left hanging by previously refusing to meet with Alexion about the issue.

Depending on how rare the disease is, he might be the only one in Belgium currently suffering from the disease. There almost certainly aren't thousands of others, or the drug would have been covered long ago (assuming it's the perfect treatment for the disease).

You also can't just cover every drug on the market willy-nilly. I can only assume there are some strict regulations on what the NHS will and will not cover. If a new drug hits the market, there is usually only a limited amount of data on the actual effectiveness of the drug, as well as its side effects. This is most likely especially true in the case of very rare diseases. In those cases it might actually be dangerous to decide to cover the drug before you get good enough data.

But what about cases where people come down with a rare disease and might die without treatment? In those cases I think it would probably be in the drug company's favor to give the patients a hefty discount, for if it works out, it can only help their case when they ask the NHS to cover the drug. (manufacturing a drug is dirt cheap after you've actually researched, developed and tested it)

Preferably (or alternatively), the government could also help out in those cases, on a case by case basis. Then who knows, at some point there will be enough data on the drug for the NHS to decide they can safely cover it.

[Deleted]

This exactly. The health minister is a dick head for refusing to cover the medication. Obviously it's profitable for Alexion if the medication becomes covered, but that's the way the world works. (And this is why a lot of people are afraid of public health care by the way)

I might be wrong, but aren't you against government funding healthcare? Also people over here are in no way scared of public health care

The fact is even if Alexion just gave away the medication to that one boy for free, the media attention would die down and it would probably never end up being covered. The medication would become unprofitable for the company to continue to manufacture as well. So it's better for the government to hash out a deal with Alexion to have the medication covered.

Apparently that's what was happening, and then suddenly the media was like "LOOK ALEXION IS PAYING TO TRY AND HAVE THEIR OWN MEDICATION COVERED, THEY ARE EXPLOITING THIS POOR LITTLE BOY." and people are idiots, and don't think about the thousands of poor little boys that the Health Minister has left hanging by previously refusing to meet with Alexion about the issue.

Basicly the problem is this, Alexion denied to lower the price for the medicine in return for government refunds and in the meanwhile they create a petition for the boy so they can make the ministry look like douches for not paying the very high price (for wich they gave a reasonable alternative)
. And over here the mentality is that someones health is more important then some big multinational corporations profit.

Is there a health crisis going on with thousands of little children in my country? Last time I checked it was quite the opposite.

[Spectral]

And over here the mentality is that someones health is more important then some big multinational corporations profit.

It seems like what's happening in this particular case is that the mentality is that it's better to ignore someone's health than it is to allow a corporation to make a profit...

[Gheld]

I might be wrong, but aren't you against government funding healthcare? Also people over here are in no way scared of public health care

I'm in support of government funded healthcare. But I understand the concerns some opponents have about it.
and

. And over here the mentality is that someones health is more important then some big multinational corporations profit.

It seems like what's happening in this particular case is that the mentality is that it's better to ignore someone's health than it is to allow a corporation to make a profit...

You just got served.

[Akylios]

It seems like what's happening in this particular case is that the mentality is that it's better to ignore someone's health than it is to allow a corporation to make a profit...

After reading through this thread, that is honestly your interpretation of the whole thing? Is this honestly how you comprehend this whole issue? To the absolute best of your ability, you see this whole case is an obvious example of how Belgians don't really care whether a kid suffers from a disease or not, so long as it means a drug company will make less of a profit?

[Spectral]

After reading through this thread, that is honestly your interpretation of the whole thing? Is this honestly how you comprehend this whole issue? To the absolute best of your ability, you see this whole case is an obvious example of how Belgians don't really care whether a kid suffers from a disease or not, so long as it means a drug company will make less of a profit?

I doubt that's what the average Belgian wants. I think the company's trying to leverage the general goodness of the Belgian people against a crummy government policy. It is, however, my reading of JfmC's particular post.

[Gheld]

After reading through this thread, that is honestly your interpretation of the whole thing? Is this honestly how you comprehend this whole issue? To the absolute best of your ability, you see this whole case is an obvious example of how Belgians don't really care whether a kid suffers from a disease or not, so long as it means a drug company will make less of a profit?

No I think he's just pointing out the irony about how the media is trying to demonize the drug company for trying to lobby to have a potentially life saving drug covered by health care, and spending their own money to have the case of somebody who would benefit from it heard. That nothing unethical or even unusual was actually going on on either side of the debate and that it has now been hijacked by ideologues who will make sure that doesn't remain the case.

[Annapolis]

If that's abuse, I just hope they start abusing more children.

[Akylios]

I think the company's trying to leverage the general goodness of the Belgian people against a crummy government policy.

It might not be a crummy policy. They might have actual valid reasons for not having covered this particular drug before. It might even be a bad idea to force their hand on this issue, for it might actually not be a good thing to have this particular drug covered at this point.

Heck if I know though. I honestly don't know their policies on drug coverage. I'm just assuming it's not a case of the Belgian government simply trying to be evil, but instead them having certain rules in place when it comes to covering drugs, and this particular drug may not have passed these limitations yet. I also have no clue whether or not those rules and limitations are well structured. As such, I don't even know whether or not it's a good thing that the drug company in question is trying to force a coverage.

I do feel for the kid though.

[Redmage]

If that's abuse, I just hope they start abusing more children.

I know right.

[yurano]

I doubt that's what the average Belgian wants. I think the company's trying to leverage the general goodness of the Belgian people against a crummy government policy. It is, however, my reading of JfmC's particular post.

I'm not quite sure that Belgian's national healthcare is even "crummy" at all.

$18,000 a month isn't pocket change. If the Belgian government was to cover these costs (and all other medical interventions of the same financial cost) then they're taking money away from something else (or raising taxes dramatically).

The biggest problem I see with the healthcare debate is that people of today believe they're entitled to the best medical care possible, regardless of cost and affordability."

I'd like to point out that there are many safety features in the automobile industry that has the ability to dramatically affect health and wellbeing: ABS, seat belts, electronic traction control, adaptive cruise control, lane departure warnings, etc. All of these safety features were originally only found on luxury vehicles, but people don't feel like they're entitled to these luxury safety features, regardless of cost.

[Garnier Fructis]

How is this abuse by any stretch of the imagination?

[Spectral]

I'm not quite sure that Belgian's national healthcare is even "crummy" at all.

It's not. It's quite good and I didn't say otherwise.

[Gheld]

I do feel for the kid though.

I don't know the full circumstances of the case, but I do have a decent understanding of how a lot of these situations go; his illness was likely not responding to any of the treatments that are covered. His practitioner probably wanted to try something else (i.e. the drug in question but it wasn't covered.) The family can't afford it without coverage, so they probably sent an application (or many) to the minister of health for an exception and received nothing but pre-formatted rejection letters in return. They probably then went to the awareness group; who then went to the drug manufacturer and said "Hey, listen!"

The manufacturer then decided that the best course of action would be to lobby the health minister, and then gave money to the awareness group in order to help do so. This then finally lead to meetings between the Health Minister and the representative for the drug company and subsequent negotiations in order to get the patient funded for the treatment. Why? Because this is how it happens constantly all over the world.

Then ideologues working for the media found out about the funding, and then started trying to turn the kid into a pariah.

The fact is it happens in Canada too; where patients along with pharmaceutical companies lobby to have experimental treatments funded by health care. The fact is that provincial health officials like any bureaucrats have a habit of spinning around on their chair with their thumbs in their asses while patients are suffering (possibly without need). Sometimes these experimental treatments turn out to be useless, sometimes they turn out to be effective, but the fact is you can't know until they get off their asses and fund the trials.

[Deleted]

The biggest problem I see with the healthcare debate is that people of today believe they're entitled to the best medical care possible, regardless of cost and affordability."

Over here its viewed as a right, we don't let our sick die, if someone is sick then he should be cured. And believe me, the healthcare system is far from free, we still pay part of the medication & for example 1 person rooms/other luxuries.

But as you mentioned the money has to come from somewhere, luckely there aren't a lot of people who need 18.000€ each month to stay alive (5-20 people max), so it should be affordable.