Why I Care

As most people who have read this site for more than three seconds will know, I have directed a lot of my time and energy to tracking down and outing scammers.  My ultimate goal is to shut these guys down, which is proving a lot more difficult than it should.

Why is it so hard?

Multiple reasons. For one, the Internet isn't a place. So who has jurisdiction on the Internet?

No-one.

Different countries have jurisdiction over their own "bit" of the Internet (and their own rules regarding it). There is some international co-operation regarding Internet use for very serious stuff, such as child pornography rings or human / human organ trafficking.  However, something as relatively "minor" as healthcare scams is way down the list of priorities for these guys.

So we look at the local enforcers.  Let's imagine a hypothetical situation:

Say you live in New Jersey and buy a product from a company that claims to be based in Norway. The product never arrives or doesn't work. Who do you contact?  The company. If they don't respond, to whom do you then turn? The FDA?  They won't get you your money back and they don't regulate supplements. Also, the company was based in Norway, right?  So the FDA will probably tell you to contact whoever in Norway regulates these guys.

Buy you don't happen speak or write Norwegian.

Nonetheless, you persevere and contact the Norwegian peeps, who do have English speakers on hand. They do a pretty rudimentary investigation on your missing $90, which is small potatoes to them, tell you that no such company as Oslo Health Solutions is registered in Norway, regardless what the internet says. But a search they did on the domain registration points to a US Domain site. You need to contact the US authorities.

You contact the US authorities with the domain information you got from the Norwegian folks. The US people check and they say the the US domain registration is a holding site, masking the real domain (many registration sites will offer this service). However, because the company who scammed you is based in Norway (or maybe Pakistan, from whence the dodgy product arrived), but not in the US, they have no grounds on which to investigate the real domain information. You need to go back to the Norwegians.

So you contact the Norwegians (again) and they insist that the domain company is a US one, and they have no jurisdiction. You need to contact the US authorities.

And so you are stuck.  You just went in a great big circle to end up precisely nowhere. For someone with a chronic health condition, this is probably familiar territory after dealing with the medical world.  But "familiar" does not mean "good".

So to whom do you turn?  Your credit card company. They are global too, and they will fight to get you back your money.

And so you eventually get back your money and you go on your way. 

However, no complaint has been registered that stuck, so the scammers are free to defraud indefinitely. 

But OSM. I hear you say  The imaginary person got their money back. So why do you care about all of this?

I care because the primary issue here isn't about the money. It's about the exploitation and mistreatment of sick people.

I care because people have their hopes raised (and you know how I feel about hope) and then dashed by callous predatory subhumans.

I care because if I don't care, and don't try to do something, it won't stop. More and more people will have their hopes raised and dashed.

I care because someone is profiting from their pain and desperation.

I care because the longer I do this, the less these medical conditions are lists of unpronounceable words, and the more they are associated with real people with real lives and families. Like:

• My friend, whose son has Muscular Dystrophy
• My stepmother, who has Rheumatoid Arthritis
• Stephen Deal, who also has MD
• Elizabeth, who has MSA
• Blake, who has SMA
• Janice who suffers very badly with Syringomyelia
• My friend Betsy who had Pseudotumor Cerebri
• The woman from whom we bought this house, who had Parkinson's Disease
• My friend's ex, who had Bell's Palsy
• Another friend's child, who was born with severe Cerebral Palsy and requires 24/7 care
• Another friend who has alopcea, which has impacted his self-esteem for years
• My great-aunt Nora, who went blind from Glaucoma

...and then all the people who have contacted me because they were scammed or almost scammed:

• A lady  in England with painful ganglion
• A man whose girlfriend has been blinded by Retinitis Pigmentosa
• A woman in Australia who has Melasma
• A man in Europe whose girlfriend has narcolepsy, and who has bad side effects from the conventional drugs used to treat it
• A man with Myasthenia Gravis in the States
• a very nice person -not sure wherefrom, who e-mailed me to ask me if I had any information on Scleroderma treatment, as the one product which had seemed to show promise had been outed as a scam by me.

There are many, many more.

So to me now, when I see these scams operating, I don't see words on a screen. I see my stepmother's hands, Or Elizabeth's vivid imagery. I see my friend pushing her son in a wheelchair, turning away from the Memorial Day parade because she cannot look at so many able-bodied kids parading down the main drag, while hers is the only one in town in a wheelchair.

I see evil, money-grubbing, bastards preying on and playing with my friends.

Behind these long disease names and behind every one of the links, there are real people with real challenges, who have to face each day and carry on. I care about that. I care about them, which is why I won't rest until the scammers are shut down,

The really sad thing is this: 

I seem to be the only one who cares this much.

Comments

[Mary Beth]

No, OSM, I have two girls with EDS. I care too. I read every day and I pray for you everday. You are the one fighting for all of us......

[yanub]

OSM, I don't think you are the only one to care so much about medical frauds. Orac at Respectful Insolence, for instance, devotes a large part of his blog to fighting quacks and frauds.

Now, do you care more than me? Well, I'm not doing the research and blogging on the issue that you are, so you must. But we all can't care about the same thing to the same degree all the time. The good part is that you are doing this research, and as people read what you have come up with, some will come up with ideas for taking action that even more people can assist with. So, please, don't let frustration stop your important research.

[fridawrites]

It's wonderful that people who have loooked for information about these scams have arrived at your blog--that's saved them from these fraudsters. I hope many more will find you and that word will get out.

I wrote about a different kind of scam yesterday--a cancer email. I don't tackle products but the myths that lead people to self blame or to abandon treatment (like "the Secret" and Louise Hay's book--well, I guess those are products, though less immediately harmful). I was also delighted that some people have found the blog by looking for more information on it.

Maybe we should develop some kind of links or event, for disability bloggers for truth in health claims?

Even if we've not been victims of this particular scam, I'll wager that almost all of us have been affected at one point by a health fad/fraud.

[One Sick Mother]

Guys, thanks for the support.

In that last line: The frustration wasn't directed at you. I had spent a huge part of the day (and quite some time in the early hours of the morning) on the phone and on-line to various government and LE agencies, trying to get someone in authority to listen or to care.

But apparently, that's not their job. I spent over an hour on hold with one agency, only to be told they were he wrong department, and then given another number.

I didn't mean it to sound like I was frustrated at you. Not at all.

OSM

[queen-slug]

& when I read those post I see someone who gives a shit about people who have medical situations that make us feel so hopeless we'd fall for these scams. I know my EDS, Poland's & scoliosis are never going anywhere, but my migraines, neuropathy & chronic pain issues? I have days where I would buy from those snake oil salesmen & if they said they had something that would help.