Expensive Colostomy Bags: The High Cost of Essential Medical Supplies

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JohnNotKen

Recently
I've received high demand from fellow ostomates for more blog entries. I
couldn't think of anything to write so I haven't posted one for a while. I
thought I'd give this one a serious message with my usual comedy
undertones.

Recently it
has come to my attention that colostomy bags are very expensive. I was chatting to this very nice (flirty) American girl who told me that in her
country she has to pay for her colostomy bags and her bags cost $60, which in
real money is £40. I said £40 that seems reasonable for a big box with about 8
small boxes of 10 bags in it. That works out at about 50p per bag. Then she
told me that I was wrong and that it wasn't £40 per big box, it was £40 per
little box. "Oh my god" I thought that's £4 per bag. You could get a carvery
meal with 1 bag; I could talk to this girl on the phone for
40 minutes for 1 bag: I could buy 2 students cinema tickets on a Wednesday for
1 bag plus 50p. Then I looked up my bags on the internet. £65!!!!!!!! You can
go on a budget holiday to Europe, buy an old games console or a small TV for
that kind of money. That works out at £6.50 per bag.

Six hundred
and fifty of the Queen's English pence for a piece of disposable plastic that's
going to end up in a landfill!!!!! I'm
sorry but to me that doesn't seem right. How are people supposed to afford that!!!!! In the UK as long as you have a valid medical
exemption certificate which costs about £200 per year and a prescription from
your doctor, you can have as many colostomy bags and prescribed medication as you
want (within reason). My initial reaction to this new information was "oh well
I suppose your insurance covers it". "No" said the flirty girl "My insurance
doesn't cover it because it's part of a condition I've had since I was born."
Apparently even if her insurance did cover it she would only get 2 small boxes per month and under the new
healthcare thing that would be knocked down to 1 small box per month which is
nowhere near enough (at least not for me and my stoma don't even work properly).

Anyway regardless
of the political issues (Governments of the world should do something to help
people to pay for these expensive things) or the moral issues (How do the
manufacturers and the marketing people sleep at night?) stoma bags are very
expensive and a lot of people (particularly in developing countries) can't
afford them. Now having said that I'm going to tell the story of how I wasted 2
boxes. Before I start I just want to make it clear that apart from the odd 1 or
2 I have never wasted any of the stoma bags I wear every day. The bags I'm
talking about are from when I originally had my operation. And by that I don't
mean used bags as some people have thought when I told them about it. After I
started wearing the bags I wear today I had 3 boxes left over.

What usually
happens when you have bags left over is that when the (tattooed) man comes with
a delivery you give the bags to him and he takes them away to be incinerated
(which is also a waste). Instead of doing this I kept the 3 boxes to use in
case I ever ran out of bags before the next delivery. 6 months went by and I still
had the bags. I opened the box and noticed that some of them had gone a bit mouldy.
At that point I thought "let's have some fun!" So I went to the kitchen where
my Turkish flatmate was making a Christmas tree out of beer cans. I should say
at this point that he's an art student and not just some nutter with a knife (Osat the Dare Devil). So I gave him the stoma bags. I really wish I'd
taken a picture of this. The only reason I didn't was because he took them off
as soon as it was completed because it wasn't what the project was about plus
it didn't look very Christmas tree like. He put 1 bag on the bottom to use as a
base and also stick the tree down, and 1 bag on the top to use like a star,
then we dismantled 2 bags and used them as decorations. At this point 4 bags have
been wasted, which means 26 bags left. A few months later my Spanish flatmate
invited some of his friends over to have a party. As the drinks flowed I suddenly
remembered "I have a colostomy" then I thought "more people should have these".
So I went to my room and got the box and the Spanish guys immediately decided
to put them on and fill them with beer. There is a picture of this on my
profile. Yes it is funny to look at but just remember that picture shows £25 of
waste. Anyway after that we went downstairs to get the girls to drink from the
bags. This didn't go according to plan so we returned to the flat and I'm
ashamed to say we went a bit mad with the bags. We made things like door
knockers and stuck 2 bags to a Cyberman mask. I took a picture of the mask I might
post that later if I remember. The rest
of the bags I gave to my Spanish flatmate to take home and fill with beer for
the girls. So that's 20 bags (approximately £100) wasted.

The remaining box of
10 bags I still have and I promise on my life I will try not waste them. But what
can I do with them? I can't (don't need) to wear them myself. I can't send them
back because they will be destroyed. I can't send them to the flirty girl because
not only is that illegal but the postage would cost more than the bags are
worth. I can only hope that I meet some poor ostomate in the near future that could
use them. I can't keep them for very much longer because they'll go moldy like
the precut ones in the first box. If they do go moldy I'll try and make them
into some kind of useful or decorative object which won't just be a waste
because I'll know that I've done my best to make the most of these very expensive
objects.

Anyway
back to the serious message. When you read this blog or look at the pictures I've
posted just think of the money that those bags cost and think of how hard and
long people have to work just to afford 1 box and don't laugh or try to copy
what I did. If you can't wear them yourself just find someone who needs them
and just give the bags to them. If this blog convinces just 1 person to not do
what I did then those bags have not been wasted. In America, the richest
country in the world some ostomates have
to spend nearly 1 day's wages on just 1 box (I can't even imagine what it must
be like in third world countries) and that's not right.

That's all
for now JNK.

lottagelady

Yeah, we whinge about the NHS, (and rightly so at times as they are providing a service that at times falls very short of expectations - see John's previous blogs!) but at least we do not have to worry about where our next bag comes from, that must be dreadful, and if you are unable to work, very stressful. How awful, especially in the richest country in the world ...........

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Past Member

John, you really should be writing for the papers, you have a most excellent turn of phrase, and you are of course absolutely right!

Having spent the last 6 months in the USA as an Australian, I am horrified at the American "health-care" system. I can see why the USA is no longer the richest country in the world due to the global economic downturn that "they" created!

Australians pay a small annual fee (about $45 AUD) and all supplies are free (and you can order way more than you actually need too).
Thanks to you lovely English peeps for colonizing us and making Australia "the lucky country"!

Keep up the writing, young John. Seriously, are you thinking of this as a career? Because I'm sure you would excel at it!

Cheers, Jo x

Pinky

Hear, hear - thank you friends in the UK. It is absolutely criminal how expensive ostomy supplies are here in the US. And it is not possible to buy directly from the manufacturers - an ostomate has to go through a distributor or medical supply company which I'm sure tacks on lots of extra $. This is because the medical device and supply market, unlike pharmaceuticals, is not regulated. I have Medicare, which pays for my supplies, but have seen the "charges" which are ridiculous - a box of 20 Eakins seals - over $200! Of course, neither Medicare nor private insurances pay that much, but cash payers might have to. The recent charges for 3 months of my supplies was nearly $1,000. For me, the only way to not exceed the amount of supplies paid for is to irrigate. I don't know how people who don't irrigate possibly make it on the number of supplies insurance covers.
Yes, I think most fair-minded people here agree with you that this state of affairs is horrendous. The recent health care "reform" is a joke. There are many Americans who don't care if anyone besides their own family has access to health care. I'm ashamed to say the people in this nation have become greedy, selfish, self-absorbed reactionaries - and I'm especially ashamed to say this on the eve of our Independence Day. Only when someone loses their health insurance, usually because they've lost the job that provided it at a stiff premium, do Americans begin to realize how low we allowed our beloved nation to become under the last administration. And like most other problems, the cost of health care gets blamed on "illegal aliens"! :(

jenepooh

I actually have found an easier way to deal with this. My hubby's company he works with has insurance that does not cover DME, so we had to look further to see what we could do about it, since when I need supplies every 3-4 months or so, it's costing us... or my parents rather around $200 or a little above that. So, after doing our own research, we realized that we really can go through the company itself who makes them... the brand that I use, and I get free supplies every 3 months. We're eligible due to how much he's actually not making and the fact that I'm not working... All we did was go to their website, and the forms were PDFs, we printed them out, sent them to my primary surgeon after we filled in my info and they, in turn, faxed it to the company. I called them back the week before last to check and they had just got the fax the day before and said I was approved. That was music to our ears and finally we can breathe again. Now, right before I run out... we send in the necessary paperwork and such and we keep going. It was easier than we thought and I'm so glad we did it. Now, if and when I finally go back to work, then we'll deal with that. Until then, this works for us. I hope you all can find the answers you need. I strongly agree with what's been said here about the supplies costing way too much. It's ridiculous. :( I wish you all the best! Good luck! If anyone has any questions, please feel free to ask. :)

 
Living with Your Ostomy | Hollister
Pinky

Thank you, Jenepooh - that is really good info. However, the companies won't work with people who don't have insurance (same with pharmaceuticals) - I guess otherwise they'd be inundated. So I end up scavenging supplies for people I hear of through UOAA or American Cancer Society who have no coverage. It's rough. Well, Happy Independence Day to us here in the US. :)

JohnNotKen

Blog of the month! Oh my God, I am so honored. Thanks, everybody:))

Faith4Today

Here in the US, providers of all medical services and products raise all their billing prices because insurance companies only pay them a % of their fees. They think insurance companies can afford the raises and forget that we have to pay them what the insurance doesn't. So the increase is really passed on to us. Manufacturers and doctors continue to get rich and what insurance doesn't pay we do. However, don't feel sorry for insurance because they just pass on their cost by raising our rates. Recently I had an X-ray they charged Medicare $80 and a second X-ray (different X-ray place, same bone.) they charged Medicare $400. Medicare paid both, it is no wonder they are broke, common sense tells you they are being ripped off, but the computers generate the payment. Someone is asleep at the wheel. Everyone is out for themselves and passing on more inflated cost and it goes around and around you are so right. Soon we will all be forced to wear zip lock baggies. But praise God we were born in a time they could do the surgery or we would all suffer a painful slow death.

Past Member

Isn't the term "pouch" less derogatory?

Pinky

We call them pouches in the US - I've also heard pouching system, appliance, and now even prosthetic rectum. All having to do with reimbursement or TSA travel issues. There has been some concern that if technical terms aren't used then Medicare won't pay for supplies, and therefore the private insurances won't either. I wonder what our friends Down Under think of pouch? :D

bikerboy

Bags are also flammable. Don't stand near the stove.

Pinky

I'm sure there is an interesting story behind that comment, Bikerboy Greg! :D

Girl19

Thank you for your comment on my blog.

In the Netherlands, the costs are even higher for 1 box. Someone told me that it costs about 90 euros (80 pounds) for a box.

Past Member

Hey, you. How are you feeling today? Hopefully better than yesterday.

Past Member

Hey, you. How are you feeling today? Hopefully better than yesterday.

Past Member

Hey John, it's Kevin. I can't get in the chat room. Write back and tell me what to do.

JohnNotKen

No idea, mate.

mosaic

Hey JNK, looks like we got a few things in common, at least one that we are going for the same degree. It would be cool to talk about tech stuff sometimes. (Future job or grad school etc.) I rarely use this site, so I ain't really a full member yet. Can you create a blog where we could communicate sometimes.



And hang in there, bro. Like Churchill said, "If you're going through hell, keep going..." I know I am.

Peace out!
lealea25

Hello, I thought bags are only expensive if it's a temporary one. I seem to be lucky that I don't pay for my bags as I got it permanently. Which I'm not that happy about.

JohnNotKen

I'm usually in the chatroom for a few hours, roughly between 6pm and 12, if anybody wants to chat.

lealea25

Hello, I thought bags are only expensive if it's a temporary one. I seem to be lucky that I don't pay for my bags as I got it permanently. Which I'm not that happy about.

mark

That's pretty cool. :)

Past Member

Hey you, how are you? Well, since I don't understand the money conversion, I can tell you what I pay here in good old Ontario, Canada. I have 100% coverage through my company insurance. I pay $150.00 per month for coverage. That includes everything. But... I spend a lot. A 20-box of bags costs $150.00, 10 flange runs $220.00, and then the extras to keep it together. The paste and such. I spend on average close to $1000.00 per month. I have sensitive skin and get a rash easily, so I have to change the flange daily... sometimes twice. The government gives a $600.00 grant per year. Yup... per year. I just picked up a box of flanges, sprays, powder, seals, paste, and such... and paid over $400.00 when I was done. So now imagine the people that don't have insurance here and have to pay???????????? Not a nice picture.



Take care
Past Member

I am from Canada and I do get a grant from the government of $800 a year. I spend up to $700 of my own money a month on ostomy supplies and yes, I used to spend 3/4 of that when I was young! Now that my skin is not the greatest anymore, it takes a toll on the family finances!

bikerboy

I guess I won't complain about how much I pay. I'm retired Navy, so my supplies cost me about $50 for six months.