Mighty Well was created when Emily Levy, our co-founder, was instructed to cover her new PICC line with a cut sock. She set out to find a better option and – when that failed – created the PICCPerfectⓇ PICC line cover! This has been our mission from day one: to create the products we wish we’d had so that future patients can have the style, safety, and confidence they deserve.
And we are not alone – adaptive wear and medical product innovations have risen to fill the needs of patients who have come out of the woodwork to break down the stigma and barriers that kept our experiences in the shadows for so long! There are so many products out there now that can make life with chronic illness smoother. Many of them are even covered by health insurance. But getting these products can come with red tape and barriers galore. Now with Covid’s disruptions to supply chains and longer wait times for providers, these products have become even harder to obtain.
I recently experienced this when my thumb began subluxing. I have Ehlers-Danlos Syndrome, so unstable joints are just a fact of life; but when my thumb was out of place, I couldn’t even lift a small book or plate of food. My physical therapist, who specializes in EDS, prescribed me a special thumb splint. I tried hers on and it was a miracle! My insurance would cover the cost, but I needed a script from my PCP (who isn’t knowledgeable about EDS). My PT faxed the information to my PCP who then mailed me what I thought was the same prescription (and stupidly I didn’t look). I then researched which medical supply stores had it and found three stores in my general area (one being a couple of hours away). I called the closest store — they didn’t carry it. I called the second store and they said yes, so I drove ~45 minutes… only to find they didn’t have it. They asked to see my prescription to see if they had anything similar and when I opened the envelope it literally just said “wrist splint” — no brand, no specifications, not even accurate anatomy, since it was my THUMB, not wrist! I didn’t even bother trying the third store. I just bought it on amazon and gave up on having insurance cover it. Fifty dollars and weeks later, I tried it on and it fit totally differently than the one my PT had loaned me. It makes my thumb go numb and causes pain in my arm, so I never wear it.
Let’s face it, chronic illness requires a sense of humor sometimes, and this was one of those moments! The number of ridiculous barriers and mishaps was simply laughable. Thankfully, I was able to find exercises that keep my thumb in place better, but the more I told other patients, the more I found that my experience was far too common! We asked our Friends in the Fight to share their experiences to bring light to this issue:
Julie
I recently enrolled in a state program to get help with housework because I just physically can’t do it on my own. Although one has nothing to do with the other, it caused my state health insurance to drop my HMO. That just means the state is handling my insurance instead of a 3rd party now. For most people this isn’t an issue, but no one ever actually told me about this change! I found out when I tried to order supplies for my feeding tube and it wouldn’t go through.
The other reason it hurts me is because the occupational therapist I see doesn’t take state insurance. Because I have so many rare conditions, finding another OT who would help me (or even just not hurt me) is like finding a needle in a stack of needles! She has special training and experience that makes her uniquely qualified to treat me.
I spent at least 10 hours over 3 days on the phone trying to sort out this nightmare. That doesn’t include the hours I’ve spent sobbing because I’m in an impossible situation of choosing the health care I need or the home care I need. And it is still not fixed.
No disabled person should ever be in this position. I am only allowed to get whatever care the government allows even if they know both are necessary. I spend hours every week on the phone, sending messages, traveling to find the few specialists who can treat me, and researching new providers when old ones leave or stop helping.
I have been so physically and mentally drained from fighting so much just to survive in a world not made for me.
**Update: since writing this, Julie reached out with some good news! “I finally got home care AND occupational therapy covered through the state program! It’s been an exhausting fight, but I finally see my OT again this Friday!”
Anneliese
Brand ambassador Anneliese reached out via video because, let’s face it, many brains prefer video format! Watch above to hear her story about managing pain symptoms through red tape.
Mary Kathryn Rivera
I have gastroparesis and malabsorption so I generally need IV versions of medications for the best chance of it working. When I need to get simple things like antibiotics some doctors will say ohhh I can’t do that, you have to be admitted… My primary has no issues ordering the stuff. It’s just hard when I can’t get in.
These stories are far too common. What these systems (and the healthy folks around us) often don’t understand, is that we don’t have extra time and energy to spend on overcoming these obstacles. We are already so short on brain space and spoons that spending half an hour on the phone with insurance agencies might mean we don’t have the energy to do our physical therapy that day. The stress of not knowing if we will have access to the products we need could mean that we spiral into another flare. We may not have the money to pay out of pocket when we’re too sick to work full time. Sometimes the costs of attempting these feats of bureaucratic acrobatics don’t feel worth the benefit of maybe getting a product that could help.
At Mighty Well, we’re starting to think about a broader mission – could we not only create new products but also help patients access the wide range of products they need? Our gears are spinning, so stay tuned, but in the meantime feel free to check out our favorite vascular access products (and where to find them) here!
Do you have medical supply product go-to’s, or tips for getting your hands on them? We’d love to know! Email listenup@mightywell.com or join our Friends in the Fight facebook group and share your story.