In a bit of a twist of events this week, I wanted my latest blog to highlight one of the most frustrating and dehumanizing aspects of the healthcare system: the fight to receive durable medical equipment.
Now, I am in patient advocacy for a living. I literally received a degree in healthcare policy. My day job has me working 40 hours a week on behalf of other rare disease patients, and my side job, blogging and podcasting for the Patient’s Rising community, has me engaging with patients in need of an advocate across the country. You would think that by now, I might know the secret of conflict resolution when it comes to our providers, insurers, or in this case, equipment dealers. Nope.
Trouble with my own Durable Medical Equipment
The system isn’t set up in a way that makes it easy for patients to receive the equipment they need. My case will resonate with so many of you, whether you are an advocate for yourself or your child. The fight over durable medical equipment will test your warrior status.
I’ve been having trouble with an assistive attachment device to my wheelchair since February. We were in Disneyland in California, thousands of miles away from my house in Massachusetts, when the device suddenly stopped working. This device is what allows me to push myself in my manual wheelchair independently. It is essentially my legs. Without it, I am at the mercy of my friends and family to get from point A to point B.
I was fortunate in this case to be traveling with my family, who were certainly willing to give me a push and finish out our vacation. It wasn’t how I would have wanted the situation to go, but we made the best of it. Luckily, I able to quickly work out a situation with the manufacturer to have a repair completed by the time I came home.
Equipment problem gets much more serious
A few months later, the same thing happened again. The device wouldn’t turn on, or when it would, the power would cut out randomly while I was out and about. It was a truly frustrating situation, considering I thought this problem had been fixed just a few weeks prior.
But nonetheless, I still tried to work out a solution with the manufacturer, shipping it out for another weeklong repair at the only facility in the country that is able to manage repairs on this fairly common device.
Helpless delays
Two weeks pass, and I’m sure you can tell where this is going, I get the device back and it is STILL broken. My patience has reached a boiling point, and I once again contact the manufacturer with a video of the problem, clear evidence that the issue was not resolved, and ask for a replacement to be granted for this device, as the repairs are not sufficient.
Here’s where the situation gets a bit tricky, but I’m sure this audience will be able to keep up.
Dealers, Manufacturers, Insurers oh my
To be able to get a device replacement, I have to have permission from my durable medical equipment (DME) dealer. The device is currently covered under warranty, but once that warranty expires, the dealer needs to have the correct serial number to be able to bill for any out of warranty repairs.
Now, DME dealers are the middlemen between a patient, their doctor or therapist, the insurer, and the patient’s access to the medical equipment they require. No equipment, no fullfilling of the activities of daily living. This includes wheelchairs, walkers, car modifications, shower or bathing systems, home ramps, and really anything to improve mobility.
Problem with Durable Medical Equipment Providers
DME providers don’t have a large market share in the healthcare space, but still, they serve nearly everyone with a mobility impairment at one point or another. And better yet, they often carve out regional dynasties, meaning that patients don’t typically have a choice about their DME dealership and the products they offer, either based on geographic or insurance coverage.
Durable Medical Equipment providers are notoriously bureaucratic, taking weeks to send for approvals from all parties involved in the transaction. Many people are surprised to learn that it takes around three months for a DME to just process orders and submit claims to insurers for new wheelchairs, and take even longer for the patient to receive the wheelchair. Right now, I’ve been waiting over four months for new wheelchair armrests from my current DME provider – that’s right, just for the replaceable armrests.
#DurableMedicalEquipment providers are notoriously bureaucratic. It takes around three months for a #DME just to process orders and submit claims to insurers for new wheelchairs. Even longer for the patient to receive the… Click To TweetTerrible Customer Service
So, as a logical next step, I reach out to the DME dealer from which I received the device.
I’m sent to voicemail, disconnected, hung up on, put on hold and forgotten about, and spend days waiting for a response by phone or email. I finally got hold of someone. In the politest way possible, I explain the history of repairs, and how the manufacturer is simply asking the dealer to provide me a shipping label to send the device out for replacement.
After nearly 3 hours on the phone, I learn that the DME dealer will require a service technician to come out to my house to verify that the device is in fact broken, and to hand deliver me a shipping label to send the device out for repair. And the earliest he can come is late next week.
Drumming up charges at my expense
Um, NO! I have already worked out a plan for replacement with the manufacturer, and the device is covered under warranty and can only be fixed by the manufacturer. The need for them to send a technician to my house is one of the most notorious tactics of DME companies to rack up service bills for insurance companies.
People with disabilities deserve better than this.
While I have a fair sense of when I am being taken advantage of, other patients in this situation may not have that benefit, and would have likely seen a hefty service bill come their way through their DME provider.
Perspective
For those who still don’t understand the reason why these issues are so stressful, so frustrating, and so belittling to people with disabilities, I encourage you to change your framework with this scenario:
My iPhone retails for around $900. It’s high price, but it’s a device I need constantly. It’s covered by a limited warranty and has options for service when it proves to be faulty. Tomorrow, if my iPhone broke, I could simply waltz into my nearest Apple store (the manufacturer), or my T-Mobile store (the dealer). By the end of the day, I guarantee that the highly complex system of an iPhone could be repaired or replaced with minimal headache on my end.
Now compare that to the experience of my assistive device. A device that costs nearly $7,000, has a limited warranty, and no local options for service. Each time a problem occurs, I have to send it across the country to the one place authorized to repair it. If the problem is more severe, I have to wait for my DME dealer to schedule a technician to review the device in person, have my insurance approve the repair, send it out across the country, and wait for it to be returned to the dealer, and then hand delivered to me.
It is the most inefficient system I have witnessed in my entire experience in the medical system.
No able-bodied person would blindly accept waiting weeks, or in many cases, months for their legs to work again, why should wheelchair users be asked to do so?
from the editor:
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Kate Pecora is a graduate of the University of Massachusetts Amherst where she studied Healthcare Policy and 
Political Science. She is an advocate for rare diseases, primarily in the neuromuscular space. Kate is diagnosed with Spinal Muscular Atrophy Type III. She is currently (e)traveling across the country in search of the most compelling stories of patient access, affordability, and quality. Ultimately this will become a book that will educate students on the importance of patient perspective. Instagram Facebook Twitter