Another part of my new reality of living life as a laryngectomee

GregP_WN

I have this little tube that goes in my stoma, it's called a "larytube". Its purpose is to hold my stoma open so it doesn't heal shut, or at least shrink. But its main purpose is to hold a little filter device called a Heat and Moisture Exchanger (HME) The idea is that with your nasal cavity your air comes in and out of it on its way to your lungs. It retains heat and moisture while making this trip through your neck and head. With a laryngectomee this air goes straight from the lungs right outside, so to help retain heat and moisture a small plastic filter is placed over the stoma that mimics your nasal cavity.
These little plastic dog dads are anywhere from 3.00 to 9.00 apiece and they only last one day, can't be reused. I found a place online Global Medical Supply to get them for less. After waiting for 2 weeks I was told that their new supply is in but the price has gone up now. Order canceled and now I have to re-order. Another case of price gouging. I'm getting low.

Bengal

Holy crap! And your insurance doesn't cover them? That's just wrong! Sure hope you can figure something out. Sorry you're feeling low. That 's not what we like to hear from our Greg who is usually the one bolstering up the rest of us. Keep on truckin' my friend.

GregP_WN

There are two types of these filters. A normal daily wear filter that was 76.00 for a 30 day supply, it is now 365,00 for the same 30 day supply.

The second type is a larger electrostatic filter that will filter out dust pollen and most anything in the air.....including viruses. That type went from 210 to 589. They claim the manufacturer raised pricing.

This should be illegal.

Bengal

Yes, it should! Greed is rampant theses days. Back in the day they taught something called ETHICS in school. Now days I think most people would have no idea what that word means. This SUCKS.

GregP_WN

Part of this is probably just like people buying up all the toilet paper. One of these will filter out viruses, so I assume lots of people with stomas are buying them up. I am looking into whether the manufacturer actually had a price increase or if it's just the supplier who is price gouging.

JaneA

I order my ostomy supplies from Edpark.com. I have Medicare Advantage as my only insurance, and my copays are very reasonable. I have always used Edgepark and have never had an issue. It is a shame when patients suffer from a supplier.

GregP_WN

I have spent a good part of the morning seeing how much gas I can throw on the fire I've started with Global Supply. As I've learned from many people online so far, there is no price increase. I reported them to the manufacturer and I've heard from the Manufacturer's rep for TN. He has reported them to the home office. And he offered to send me some to get me through until an order is sent.

Carool

Greg, that someone would do this disgusts me but doesn’t surprise me. Your action will help many others. Good luck with this.

Bengal

Good for you Greg! Goes to show we need to be proactive to make the system move for us (and others). Hope that distributor gets booted.

MarcieB

I can't get my mind around this...who can pay 365,00 a month for anything? Your doctor must be aware of this situation for you - for everyone in your circumstance, can he help you at all? I have recently heard of a local GP who has a supplier in Canada and can write a script for his patients to have their meds sent from there. There has got to be something, nobody can be expected to do this.

Bug

People should be ashamed. My father used to make a business deal and seal it with a handshake. I miss those days. Hang in there, Greg.

beachbum5817

This is atrocious and makes me so angry. I will never understand. I know companies need to make a profit, but to price gouge is criminal. I am glad that you reported them. They have no idea who they are up against.

GregP_WN

My local manufacturer's rep has contacted me about this and let me know that I can buy direct from them. There are only 2 manufacturers of these filters and related supplies that laryngectomees use. That alone is amazing to me!

They sent me a welcome home kit and some samples of their different filters (HME) Still, I would like to shine as much light on this Global Medical Supply company that is price gouging people as we can.

GregP_WN

My local manufacturer's rep has contacted me about this and let me know that I can buy direct from them. There are only 2 manufacturers of these filters and related supplies that laryngectomees use. That alone is amazing to me!

They sent me a welcome home kit and some samples of their different filters (HME) Still, I would like to shine as much light on this Global Medical Supply company that is price gouging people as we can.

BoiseB

Greg. Contact your Congresspeople (all of them) Hey and post this on Facebook. I am going to talk to my brother, the lawyer one, about this. His son is terribly handicapped by cerebral palsy and uses such a device. Have you gone to the American Cancer Society and the LiveStrong Foundation about this?

BoiseB

I subscribe to a newsletter called Cancer Support Community I have only been reading it infrequently as I am currently dealing with other health issues. Here is their website https://www.cancersupportcommunity.org/