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Monday, July 22, 2013

Durable Medical Goods Rip Off: A Series of Posts

I am going to start a regular series of posts about how people with a disability are getting screwed over by the cost of durable medical goods. This is an issue that has bothered me for thirty years and thanks to my good friend Rebecca Garden I am going to start to address the cost of being disabled in a series of blog posts. A bit of background is required. Within months of using a wheelchair I quickly came to two conclusions: first, anything remotely associated with disability was obscenely overpriced, uniformly ugly, and poorly designed.  Second, the experts, those charged with prescribing, selling and repairing durable medical goods, were at best incompetent and at worst crooks. For many years I had no choice; Everest & Jennings had a monopoly on the wheelchair market. However in the early 1980s rigid frame wheelchairs were invented. A critical mass of angry wheelchair users alienated by E&J began making and selling rigid frame wheelchairs. Dozens of wheelchair companies popped up and an equal number went out of business. Luckily I found a rigid frame wheelchair and quickly decided to opt out of the system. I have not bought a wheelchair in over 30 years. My only ties to the durable medical goods industry is through my ass. I purchase and replace Roho cushions on a regular basis.

I have a renewed interest in the durable medical goods industry because I am getting older. My wheelchair is indestructible but heavy. I am also not as rough on a wheelchair, and can envision a time when I will need a light-weight wheelchair to preserve my shoulders. I found a wheelchair that I think is revolutionary, a Panthera, made of carbon fiber. It is the lightest practical manual wheelchair manufactured in the world. I tested it and was blown away. It is a revolutionary design. The problem is the Panthera sells for more $10,000.  Put this price tag in perspective: I can buy a good used car for $10,000. 

So how over priced are disability related items you may ask?  I want to start out small. I will discuss mundane items on a wheelchair that will over time break down.  I am operating on the assumption the person replacing parts is somewhat na├»ve, relatively new to disability, and unaware of alternative (cheaper) resources. The costs I will list are generalizations. I have based my price estimates on different disability related websites. There is a degree of guess work involved. I must stress the following: I am not particularly interested in the details of price variation. Instead, I am looking at the bigger picture of how lives are profoundly impacted by the durable goods industry. The savvy buyer, likely a person paralyzed long ago, will know the industry well and find good bargains. Regardless, the price disparity remains startling.

Wheelchair tires and inner tubes.  At multiple bike stores on line I can order a pair of tires for $13.99.  Inner tubes are $4.95 each. In short for $25 I can buy tires and tubes and get them shipped to my home for free. A person new to paralysis will likely think I need to buy my tires and tubes from the wheelchair manufacturer. Big mistake. Order tires and tubes through Quickie, the dominant wheelchair manufacturer in the USA and one will pay dearly. Tires are $17 each, hence two tires are $34. Inner tubes are $8.  Shipping is not free. So cost went from $25 to over $50.

Paint. Few wheelchairs will ever need to be re-painted because they are not designed to last. So let’s say a person went on a trip and the airline chipped the pretty paint job on your wheelchair in a highly visible place. Quickie will be happy to sell you an ounce, yes one ounce, of touch up paint for $75. I scoured the Quickie website and could not find out how much it would cost to paint a frame. Again, it is my contention wheelchairs produced by Quickie are not designed to last hence there is never a need for a new paint job. In sharp contrast, my wheelchair frame was designed to last a life-time. I had three frames made about 25 years ago. One frame has been retired and the other two are in great shape. Every five years or so my wheelchair frame needs to be repainted as do the rims on my rear wheels and the footrest.  I bring my frame, rims, and footrest to a powder coater and the entire job takes two days and costs $125. More than an ounce of paint is used.

Wheelchair upholstery: I replace my wheelchair upholstery through a car or boat detailer. This costs about $50. The cost of wheelchair upholstery ranges widely from wheelchair manufacturers but one should expect to pay $100 a piece.  A set, back and seat, will cost about $200.

I have begun with the least expensive items and will work my way up the price scale. It is my belief that items deemed durable medical goods will be grossly over priced: the mark up extreme. In the future I will discuss high tickets items such as wheels, manual wheelchairs, lift systems such as hoyer and ceiling tracks, power chairs, portable wheelchair ramps, hand controls, van conversions, beds, home elevators and wheelchair lifts. For each item discussed I will offer an alternative. I will repurpose every day items that one could purchase at a hefty discount. The potential savings are staggering.  I will end with one example to wet the readers appetite. A hoyer lift costs at minimum $1,500 and ranges up to over $4,000.  The slings for a hoyer lift cost over $150. I have a friend whose hoyer lift broke. Insurance would not pay for a new lift. A rider was added to this person’s health insurance coverage and omitted certain durable medical goods. Such riders are now commonplace (my insurance added a rider last year eliminating coverage for organ transplants). My friend could not afford to spend thousands on a new hoyer lift and instead scoured the automotive section on ebay. This person bought a used engine lift for $125 (it was a cool fire engine red). He made his own sling made of a tarp and a cotton sheet for less than $20. It is the best and most reliable lift my friend has ever owned. It cost less than $150.


jessikazoo said...

Excellent! Keep going!

A said...

Yes, this whole system needs to be busted. I've been furious for decades
over the lack of innovation, the ugliness, the poor quality and selection of wheelchairs and other equipment, not to mention the absurd costs of anything really good (or even crap). I'd love to see a well-informed consumer movement take some power to change things for the better.

william Peace said...

A and jessikazoo, This is so easy to write. The industry has been screwing people with a disability for decades. I get capitalism. Corporations need to turn a profit. But this goes way beyond ethical conduct on the part of corporations. Worse yet, as A pointed out innovation is smothered. For example, manual wheelchair designs have remained static since the early 1980s. Quickie is the modern day equivalent of E&J that knowingly suppressed any change in the wheelchair industry for decades.

Nessie Siler said...

Thank you, William! :) I look forward to more posts about this. When I disclose to some of my TAB friends what the costs are for the items my family uses daily, I get murmurs of disbelief.
Added to this the fact that items used by the disability community are so overpriced that it is impossible for most folks on SSI to save for the needed items privately, due to draconian income restrictions. Which forces the individual to rely on Voc. Rehab, or Medicaid to deign to supply one. (And they usually don't after reams of paperwork, doctors visits, phone calls , and more headaches than anyone should have to stand.) Can you tell I'm peeved about this? TY for calling this racket to account. My best to you, and keep writing. We need you!

Nessie :)

Lynn said...

Agreed - there's something downright rotten about the whole US DME industry. There are valid justifications to be made about how economies of scale and the cost of liability insurance impede the process of getting high quality, affordable products to consumers. But fundamentally, it seems that these barriers are not so much an *impediment* to the corporate players as they are a valued *tool* that they use, very effectively, to keep innovators and small businesses out of the market.

Furthermore, there's another angle on this that has long perplexed me. If I want some non-medical gadget that's only sold in Europe or Asia, it normally wouldn't be that difficult to get my hands on one. I'd just have to go to eBay, or an overseas Amazon site, or directly to a foreign vendor, pay a little extra shipping, and voila, my foreign-market toy shows up at my door a couple weeks later. There's a lot of very spiffy-looking DME being designed and sold overseas - particularly in the Scandinavian countries - but good luck getting it into the US. Whatever the US DME industry is doing to keep these products out is disturbingly effective. How does this work, exactly? Somebody really needs to start a DME-smuggling cartel...

william Peace said...

Lynn, I often wonder how the durable medical industry will change next year when more health care reforms are enacted. I suspect it will put many durable medical goods distributors out of business. Not sure if this is good or bad.

Lynn said...

Yes, a lot of major changes are already underway. (Though I'm not sure how many of them are truly attributable to health care *reform* per se, as opposed to just the continuation of the same cost-containment chess game that Medicare has been playing with providers and vendors all along, with all other third party payors calibrating to the standard Medicare sets.) It is definitely getting to the point where a lot of existing business models will be threatened with extinction.

Of course, a certain amount of "pruning" in a competitive economy is a good thing. But I fear that the impact is going to go well beyond just culling what deserves to be culled. We seem to be moving in the direction of making it so difficult to get equipment through insurance that it's going to become a "pay out of pocket or do without" scenario for many, many consumers. Probably good news for Amazon, but for vendors whose business has been reimbursement-based, things look bleak.

In Home Health, our ability to get equipment for patients has been dramatically curtailed. When it's possible at all, the hoops that need to be jumped through to make it happen have moved from onerous to ludicrous.

Example: A year ago, if I had a patient who couldn't maintain 90%+ oxygenation with exertion - i.e. getting from bedroom to bathroom and back - I could document the readings I got with a pulse oximeter, get a doctor's order, and get them supplemental oxygen. Now, first of all, a PT can't do this at all - it has to be a nurse. (Though the nurse often isn't comfortable facilitating the necessary mobility to do the assessment.) And secondly, documenting that the person is desaturating with activity is no longer enough; we also have to re-test *with* supplemental oxygen, and prove that use of the oxygen solves the problem, before we can get the oxygen approved. Where, you might ask, would the oxygen equipment for this testing then come from? Good question! Nobody knows. That's not even all, but you get the idea.

I can no longer get a rental wheelchair for a patient just because he/she cannot manage without it outside of the home, i.e. to get to doctor's appointments, etc. The person must be literally unable to function *inside* the home without the wheelchair. And if that's the case, and I get them the wheelchair, then I can't get them a walker. Never mind that my whole job is to get people from one level of function to another, and that this process inevitably involves overlap between said levels of function. The new rule is, "Wheelchair or walker. Make up your damned mind, and stick with it." It makes no sense, but the goal isn't to make sense. The goal is simple: to no longer pay for the equipment people need. They are on their own. In our society, where people are not only thrown into poverty by medical expenses, but also held hostage in poverty by the constructs around disability benefits, this is really a frightening development. I'm quite worried about where it will lead.

Manish Batra said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Wheelchairs Lightweight

Keep Posting:)

Dux B said...

I need a lift for my 89lb paralysed dog to help me get him into his wheelchair. I have looked at the Hoyer lift, way too expensive. I did see a couple on Craigslist for $150.00, used. I didn't get a chance to get them, as I was just thinking about it at the time. I have also considered the engine hoist but it seems like overkill. I had even (cringe) looked at a deer hoist but they lack a suitable base. Has anyone tried making a hoist stand out of furniture grade PVC? I'm thinking of buying the hoist and attaching it to frame with caster's so I can move it as needed. I am also disabled, so lifting him above the cart is no longer possible now that his front legs are beginning to weaken. He is no longer be able support his front end weight as his paralysis has progressed. He has Degenerative Mylopathyand his back legs are completely flaccid. His core strenght has weakened quite a bit in the last 9 months. He used a two wheel cart happily for over a year. But now he needs a Quad. I need some advice or suggestions from others who are also looking for lifting alternaties on a limited budget. I hope I am not offending anyone by asking for help with my dog. I apologize in advance if this is inappropriate, however, so far I've received the best advise about mobility aids from those who use them daily. I made my dogs cart, and made a few for other handicapped pets. Dog wheelchairs are extremely expensive as well
Thanks for this blog! Your points are very valid!