This NYT story caught my eye yesterday, because my nephew is actually a recruiter for the company being investigated:
Okay, I can see the problem with gathering DNA samples without bothering to tell people that it’s costing their insurance $4,300 (in New Hampshire, insurance companies are required to pay for this procedure, but it’s supposed to cost much less according to the story). Maybe there’s some kind of insurance scam going on here, although that’s not clear from the story.
But the article makes a big deal about the company hiring pretty, flirtatious models to solicit people to get their DNA tested for the bone marrow donor database. I fail to see the problem with that, specifically, yet the NYT seems to be clicking its tongue. If the procedure was only $100, wouldn’t using models to attract potential donors be seen as brilliant marketing?
This is a pretty week article for the Times that leaves a lot of questions unanswered and seems to be focusing on a pretty unimportant aspect of the story.
That is brilliant marketing, and I, at least, see no problem with it. The practice of NOT telling people that their insurance would be billed $4300 per test, OTOH, is pretty damn slimy (though not outright criminal, IIUC).
Yeah, the article doesn’t spell it out, but I wonder if the tongue-clucking was more “using attractive people to hook folks who might not otherwise be inclined to participate in what amounts to a shady insurance scam,” rather than just using attractive people in general.
Sure, except they’re jacking up the cost to ridiculous levels, getting a high volume of tests from people who don’t have any particular reason to actually go through with a very invasive donation, on the off chance they match a needy person.
From the National Cancer Institute
These people are vultures, taking advantage of a law that wasn’t crafted smartly enough to limit the cost of these tests while requiring that insurance companies pay for it. They are also going to inevitably cause heartache to folks who “found a match” and realize it was some dopey frat boy who wanted to chat up a hottie in the mall, who has absolutely no intention of going through the procedure.
Cheesesteak, I agree that this seems to be an insurance cheat. The registry company claims that the prices are not set by them, but by the lab… but there seems to be a lot of money flowing back to the registry (which allows them to spend the money on models).
But a lot of the criticism seems to be aimed at the use of the models itself, which I don’t think would be a problem if the company was charging, say, $100 for the tests.
Also, now I know why my nephew loved his job so much despite the low pay. He got to travel around New England hanging out with pretty models in short skirts and heels. Although I don’t know how they got skirts and heels in his size.
If the potential donor’s insurance were charged $100, this would still be slimy, and here’s why.
Signing up to be a potential donor of bone marrow should not be done on a whim. You should only sign up if you are truly committed to donating, and not because some model flirted with you.
Thousands of patients with leukemia and other blood and marrow diseases are searching registries every day for a matching donor who could save their life by donating marrow.
How devastating must it be for a patient to be told that a matching donor has been found on a registry, only to be subsequently told that that donor wasn’t really interested in donating.
The problem is the models have no intention of putting out for the the potential donors. It’s not like the pharmaceutical reps who do put out for the big sale.
I’d need to see actual statistics on how many people back out of donating once they’re identified, and if the rate of refusal is greater when volunteers are solicited this way.
This is another thing I wish I’d known before I didn’t go to medical school.
I’m with the National Marrow Donor Program, and we have been operating the congressionally authorized national registry in the U.S. since 1986. We now have more than 8 million volunteer donors listed, and we’ve done more than 40,000 transplants.
So … we have reams and reams of the type of data you’re interested in, and they show that there are very significant differences in donation rates based on where and how a person is recruited.
For example, volunteer donors recruited at patient-specific donor drives have actual donation rates 20-30% lower than volunteer donors recruited at other types of drives, such as campus drives.
Why would that be? Well, a patient-specific drive is one where a family organizes a donor drive for their child who will die without a transplant. The families are supposed to emphasize, over and over, that when you join the registry, you have to be willing to donate to any patient in need if you are matched.
But, as one can imagine, there’s a lot of peer pressure at such events, and many people sign up just to show that they are concerned about the sick child. They never really commit to the idea that if they are matched, they will be asked to donate to a complete stranger, anywhere in the world.
So anyway, we don’t have donation rate data on volunteer donors recruited by models, as we are a reputable organization. But we certainly have over the years put a magnifying glass to this topic, and have a pretty firm grasp of donor motivation. I think it’s safe to say that volunteer donors recruited by models would have below average donation rates. Sorry, I can’t give you an exact percentage.
Thanks Spiff. I can’t quite get my head around someone who’s offered the chance to save someone’s life (even a stranger) and says “Nah, I changed my mind.” But I’m sure it happens more than I would think.
I mean, I can understand being reluctant to give up a kidney or lung, but bone marrow? I know it’s not pleasant but good grief, it’ll grow back.
Spiff, thanks for what you and the NMDP do! I signed up as a donor at a patient-specific drive in 1989, and I’ve been in the registry since. I’m sorry that more people don’t stay in the registry after such events. How can you not help someone who’s dying?!! My registration pre-dates cheek swab, by the way, I had to have a blood draw. The doesn’t bother me - I have great veins. But now getting in the registry doesn’t even break the skin. Please sing up, folks.
They billed up to $4300?? The registration fee for the national bone marrow database is less than $100, and that includes the DNA test. Spiff also has a good point, because when I registered, it warns you several times that you’re going to be considered a possible donor until your 61st birthday, which in my case is almost 3 decades away. It’s definitely not a choice I made lightly, nor should anyone else.
I am so confused. When I joined the Marrow Donor registry, I was in the process of donating Platelets at the Red Cross. They asked if I wanted to be added to the marrow registry and I said yes. I was never charged for anything and neither was my insurance.
Why are people being charged to join a marrow registry? Should I have been charged? Or, have things changed a whole lot in the last 8 years or so.
There is no need to involve your insurance, and you might have been asked during one of the free registration periods that happen at least once a year. Why do they charge? Dunno, maybe to weed out people who do it impulsively?
Someone has to pay to do the testing, and pay to get the testing booth set up, handle and ship the samples, etc. If there is a charitable organization paying for (or donating) those things, then neither the donor nor his insurance get charged.
If there is no organization paying for it, then the donor, or his insurance, has to. In this case, Mass. law states that insurance MUST pay for it, so these folks can solicit people for a “no obilgation” cheek swab and charge the insurance companies $4,000+ more than the normal rate to process the test.
I fell for the Caitlin Raymond scam. They were collecting samples at a Red Cross blood drive, so that lent some credibility to the organization. They do a hard sell and I broke my normal rule of not donating, signing, or participating in anything when approached or phoned (I say “I will research this on my own and will decide then”). I was pissed when I found out that they charged my insurance $3,500 for the testing.
I don’t recall whether the person who hooked me was hot.