Donating money for "alternative" therapies

[havregryn]

There is something that has been bothering me for a long time and I would like to hear some Mustachian views on this.

We live in Europe. One thing that all of the countries that I have ever lived in have in common are good public healthcare systems that insure more or less everybody. All of these systems, even the ones in the poorest of EU countries, are well known to be more than willing to cover costs of treatment when you have a condition that cannot be effectively treated in country X, but it is well known and medically accepted that it can be treated in country Y. This especially applies to children and our public health systems have been known to pay outrageous amounts of money for treatment in the US when children present with super rare life threatening conditions that have only ever been successfully treated in the US. I have never, ever heard of a case where such coverage was denied and usually, if there is money to be collected, it is to help parents and carers with living expenses while the patient is receiving treatment.

However, lately I am almost constantly bombarded with gofundme campaigns asking me to donate money to help some child with a rare illness get some kind of expensive treatment that is the "only thing that works" but the national insurance refused to cover it. The problem : every single time I go and do more research into it, it becomes obvious that the therapy that is being collected for is some alternative, holistic mumbojumbo with no proof that it actually does anything, which is why the parents cannot get the insuring institutions to even consider it.

I honestly find it sickening that all these witch doctors would go after parents with seriously ill children and I hope that there is a special circle of hell out there for these people. But I am finding it hard to respond to such calls when they come from someone I am acquainted with. I feel it is cruel to openly say that I will, on principle, not donate money for some hocus pocus, as I feel empathy for these parents and understand that they just want to feel they're doing everything they can. But if there is one thing I don't want to give money to, it's the people who have the nerve to charge 30-40 000$ to desperate parents for some crap they made up.

So what do you think, what is the correct way to act in these cases? How to show empathy without funding quacks?

[Catbert]

So are these close friends/family?  Hard to imagine that you'd have that many close friends with serious ill hard to treat children.  Or are these just friend-of-a-facebook-friend mass pleas?

If these are casual acquaintances just ignore the whole thing (i.e., the request for money or discussion of alternative therapies.)  If close family or friends be empathetic but offer other things than money for crap medical things. 

[SunnyDays]

Tell them you would be happy to donate to a treatment that has had scientifically documented results and not just testimonials, because the latter are usually all that's offered by the treatment source.  Then ask if there is anything else you can do for them.

[Imma]

Yes, this annoys me too. There's no polite way to refuse to donate especially when it's a life threatening illness.

Sometimes those appeals are justified though - in my community we raised money for a little boy who was accepted into an experimental program for a rare cancer in the US that required him to stay in the US for a couple of months. While insurance covered the medical and travel costs, they didn't cover the living costs in the US or the missed income of the parent who went with him or the additional costs that the parent who was staying home with the other kids was likely going to have. The parents were going to sell the family home but the community raised the funds they needed in a very short period of time. This is the kind of fundraising I support.

But those fundraisers for life threatening illnesses are quite rare. The kind of fundraisers I see are more like 'donate money so my kid with autism can go swim with dolphins'. It's easier to ignore those or, if someone asked you directly, to say you just can't afford to donate. One I saw recently was for a woman with cancer who was going to lose her hair and wanted a wig made from her own hair. While I can totally understand her wanting that I don't feel that's the kind of thing I'd want to fund for someone I barely know.

[Frankies Girl]

Are these people literally in person or calling you directly and begging you for your money? If they are directly asking for you to give them LARGE sums of money to pay for something you don't believe will help or feel weird about... just tell them you can't because it's not possible for you to come up with large sums like that, and offer them what you CAN stomach giving (if you want to give anything). Or offer your time, help them drive to appointments, make meals, grocery shop, babysit or help clean their house.

If you have people in your life you know and care about going through something - offering them a money for ~anything~ is nice and you don't have to have the where is the money going conversation. Just give them a bit of cash or a check or transfer money directly to them. Don't do GFM as they skim off the top at least 5-8% last I checked into it. You can also give them gift cards to food/grocery or some other nice gesture if you want them to know you care and want to help.


If it is just posts online or emailed to all type of solicitations to donate... I wouldn't even waste time clicking on the links or researching. Ignore.

[havregryn]

It's friends who approach me, but it's not directly for their own kids. It's more like friend of a friend (or even further removed) who starts the campaign but it is people who are fairly close to me who approach me because they expect us to have money (and they know I love giving to charity, it's really not the giving part that bothers me).It doesn't happen daily, but it happens a few times a year and I can definitely see it is picking up pace (more people know about gofundme, more ridiculous alternative therapies pop up etc). It also seems to be getting increasingly ridiculous. Yes, experimental treatment, that is probably the only "grey" zone in this, where the treatment can be legit but the insurance will not go for it, that is actually something I don't have a problem with. But most of the recent ones I got were for some really suspicious stuff...molecular reprogramming, neural awareness, all kinds of hocus pocus.

I think this really bothers me on a higher level, I guess I can always ignore these requests, but to see how strong this market is and how they rely on desperation of parents and kindness of strangers to get rich....I can't believe all that shit is even legal (some of it is probably not, a recent such campaign was for the kid to go get some cutting edge treatment in Turkey that sounded very much like something that the EU would have legislated against so that's why they had to run their business from there).

[Linea_Norway]

In Norway, they don't pay for everything. They think there must be a good chance of getting better after treatment (the cost/benefit calculation should pay off). And sometimes the best and most expensive treatment for a small disease is too expensive for the chances of survival. There is a committy that defines which treatment can get covered. And especially for some very rare diseases, where Norway doesn't have the best treatment, people are not always paid to be treated abroad. Some people take up a mortgage of their home to have themselves treated abroad. This is at real hospitals. There have also been cases where the Norwegian hospital has given up a person, but one foreign clinic promises treatment than helps. In some cases the hospital gives a doubtful (not fully documented) treatment and that is not covered.

I think you shouldn't feel the pressure from your friend to give money to something they feel is important, only because you have money. Saying that you don't believe in alternative treatment should be a good enough reason. They other is that your friends in general should not dictate you what charity you should donate to.

[elliha]

I have a family close to me that suffered greatly after a poor decision by a doctor at the birth of their son and he now has significant disabilities due to that. They are desperately trying treatments for him and have raised lots of money to do so. They themselves are convinced that the therapy is working, I am less convinced, I think it is more due to him being baby and still having a chance to develop skills despite having suffered such hardships. I really want to help and support them but I think that them searching for alternative therapies is misguided energy and if they do want to pay for something maybe extra occupational therapy or things like that might be money and energy better spent. They have other kids too and to be frank I would rather give his siblings a fun day out for them than paying for therapies I don't think are helping. I haven't donated anything to them but I would if it was a therapy I thought would actually help which wasn't provided by the tax funded health care. It is true that some therapies are not paid for not just because they are considered woo but sometimes also because they are not considered cost effective. It is sad for an individual but sometimes it might be necessary.

[Catbert]

It's friends who approach me, but it's not directly for their own kids. It's more like friend of a friend (or even further removed) who starts the campaign but it is people who are fairly close to me who approach me because they expect us to have money (and they know I love giving to charity, it's really not the giving part that bothers me).It doesn't happen daily, but it happens a few times a year and I can definitely see it is picking up pace (more people know about gofundme, more ridiculous alternative therapies pop up etc). It also seems to be getting increasingly ridiculous. Yes, experimental treatment, that is probably the only "grey" zone in this, where the treatment can be legit but the insurance will not go for it, that is actually something I don't have a problem with. But most of the recent ones I got were for some really suspicious stuff...molecular reprogramming, neural awareness, all kinds of hocus pocus.

Yep, sounds like you've put yourself on the suckers list.  This is much easier to deal with than a close relative who asks for their own child.  You could try to the noncommittal "oh, that's too bad." and just not gofundme.  Would your friends really follow to see if you've donated and say something when they see you haven't?  That would be pretty nervy.  Or tell everyone when they ask that you are now just giving to actual charity organizations and not individuals.  It'll take awhile but you'll slowly get fewer requests.

[GuitarStv]

Here in Ontario, our government gives legitimacy to the frauds and charlatans that make up the holistic health care industry.  Quack practitioners completely unsupported by research and devoid of supporting evidence like homeothapy, naturopathy, and Chinese traditional medicine are called 'health care professionals'.  It's pretty disgusting that the government is conspiring to mislead the ignorant in this way.

[slappy]

It's friends who approach me, but it's not directly for their own kids. It's more like friend of a friend (or even further removed) who starts the campaign but it is people who are fairly close to me who approach me because they expect us to have money (and they know I love giving to charity, it's really not the giving part that bothers me).It doesn't happen daily, but it happens a few times a year and I can definitely see it is picking up pace (more people know about gofundme, more ridiculous alternative therapies pop up etc). It also seems to be getting increasingly ridiculous. Yes, experimental treatment, that is probably the only "grey" zone in this, where the treatment can be legit but the insurance will not go for it, that is actually something I don't have a problem with. But most of the recent ones I got were for some really suspicious stuff...molecular reprogramming, neural awareness, all kinds of hocus pocus.

Yep, sounds like you've put yourself on the suckers list.  This is much easier to deal with than a close relative who asks for their own child.  You could try to the noncommittal "oh, that's too bad." and just not gofundme.  Would your friends really follow to see if you've donated and say something when they see you haven't?  That would be pretty nervy.  Or tell everyone when they ask that you are now just giving to actual charity organizations and not individuals.  It'll take awhile but you'll slowly get fewer requests.

This makes the most sense to me. After a few times of saying no, people will likely stop asking you.

[havregryn]

Thanks everyone. I guess I just wanted to hear some affirmation because I do always decline to participate in such stuff, and then always get the vibe that people think I am being a scrooge or a snob or a little bit of both.  I know they target me because I sometimes donate to something and share it hoping someone else would too, but I always do my homework and focus on stuff that I feel are legitimate (both based on research into what is being asked for and what is realistic to expect that the existing system will offer) but also not very social media worthy so will never get as much attention as some little kid with cancer.For example, teenagers with ugly looking physical disabilities being cared for by their semi-literate parents or grandparents (so not the kind of people with access to the kind of PR machinery it takes to launch a massive crowdfunding campaign etc).Or I tend to donate money to young people who run animal charities in some godforsaken parts of Croatia where everyone is chronically broke and miserable and I feel I want to support their struggle to show empathy for animals amidst all that poverty.
But I really, really can't bring myself to donate even 10 bucks for someone to go do "molecular reprogramming."
But yeah, I think in the future I won't even try to discuss what it is that is being asked, I will just say I'll look into it and then, when looking into it reveals it's crap, be annoyed but move on without really engaging with it at all.

[Sibley]

I have a policy of not donating money over the phone, not donating money to anything on GoFundMe or similar, and I have a list of charities that I donate to. If you have a problem with that, that's YOUR problem, not mine.

[Catbert]

Well, if you share with people things you think they should donate to it's not surprising they return the favor.  So, either stop suggesting what they should donate to or continue and expect to get their recommendations also.

[havregryn]

I didn't mean I go after people, I just share it on Facebook, but I think it signals willingness to donate. As said, it's not really the donating part that bothers me, it is the fact it is clearly for something that is not medically legit. I am less annoyed with people who ask than with people who sell this service to begin with. Since it's their pockets that get lined with donations, that's where the issue is. I think what ultimately bothers me most is that it feels incredibly difficultnto question and discuss this stuff. Like, people instantly attack you if you dare to question the legitimacy of the fundraiser. Because there is a sick kid and a promise of cure and how dare you come in with science and arguments. It just makes it easier for ruthless quacks to get rich. This crowd funding phenomenon is mostly working for them.

[Raenia]

I would probably go with "What a great cause, I should donate to [legit charity that helps children with diseases/funds research on this disease] so that any child in this situation can have great support and treatment.  Thanks for reminding me!"  In my location, it would probably be Ronald McDonald House and St Jude, if there's no specific charity for the disease, but I'm sure there are similar organizations in your country.

[hops]

It just makes it easier for ruthless quacks to get rich. This crowd funding phenomenon is mostly working for them.

Related reading:

https://sciencebasedmedicine.org/crowdfunding-the-fuel-for-cancer-quackery/

[freya]

This is an excellent reason never to discuss your personal finances to anyone - not even family members, if there isn't a good reason for them to know.  If it's a work colleague who has some idea of how much you're paid, you could head off such requests by occasionally griping about how hard it is to make ends meet.  That will be very believable because it's kind of the norm no matter what your salary level.

In response to a direct request, I suggest making generally sympathetic noises and then changing the subject to ask how the child is doing or something similar.   Then do what you please without discussing it further.  It's your money and you absolutely should not spend it on anything you aren't 100% behind.

The link between GoFundMe and quackery is unfortunately true.  It's very sad but there are doctors who have figured out that the easiest way to make bundles of money is to cater to desperate, deluded people willing to pay cash for to anyone promising a miracle cure.  I know of a couple of local doctors like this.  They charge almost double that of even the highest priced legitimate medical centers in this area, and of course they want it in cash.  What's more, there are risks associated with some of these therapies. Nerve injury or infection from invasive procedures, permanent neurological damage from long-term antibiotic use for "chronic Lyme", adverse effects from multiple psychoactive medications, renal failure from ozone therapy or IVIG, etc.  Sounds like you don't need convincing, but if it helps ... not funding these things may actually help prevent these things from happening. 

[Cranky]

We have people in our extended family who suffer from the "chronic lyme" thing, and always have some sort of fundraiser going. I just ignore the whole thing and figure I'm being nice by not telling them I think it's total woo.