I sometimes focus on the emotional toll of this disease, but the financial toll can be just as heavy. I have, so far, been remarkably lucky in that my insurance has covered nearly everything I've needed. But this isn't always the case. I've read story after story of women who have been turned down for even the most basic treatments.
My MLD, or physical therapy, was completely covered, and because it was performed at an in-network provider, I only had to pay a small copayment. The amount billed? $2,968.
The Flexitouch is considered durable medical equipment. It was billed at $12,809.17. My copayment/coinsurance was $3,716.68. The Flexitouch company further reduced that cost to just $2,000.
There are no medications, but many women use supplements to combat the inflammation, venous insufficiency, swelling and other associated symptoms. These include selenium, Butcher's broom, vitamin D, fish oil, probiotics and turmeric, just to name a few. This can also get costly. Insurance does not cover supplements.
Compression can vary wildly in cost and usually isn't covered unless you have lymphedema as well. I use Bioflect, which is definitely a more affordable brand. The Bioflect Pro leggings (which cover from foot to ribcage) cost $105 per pair (and you definitely want more than one pair unless you want to be stinky and gross) and then add in some arm sleeves for about $50 per pair.
For women with no insurance or whose insurance refuse coverage, these costs can be impossible to manage.
There's also a heavy time commitment to treatment. The Flexitouch treatment takes two hours a day, two hours when I have to sit still while the machine does its work. The MLD appointments last about an hour and took place twice a week. There are all the other little time-takers during the day, too, like wrestling myself into and out of compression (this is not an easy job), and I have to do it before and after any treatment, after bathing, whenever I use the bathroom ... it's burdensome.
Dieting and exercise would be a breeze compared to this. This is where I am right now. Denial, desperation, resignation. I'm slowly moving towards acceptance.
And on that note -- I have my surgical consult in about two weeks. Hopefully, I'll find out where I stand when it comes to insurance coverage. I am so afraid my luck is going to run out soon.
Things I have going for me? My surgeon is an assistant professor at a top tier medical university that is associated with the hospital through which my insurance is provided. He is the only lipedema surgeon in the country that actually accepts insurance. He fights tooth and nail to get his patients' surgeries covered because he believes we all have a right to treatment. (This also means he's getting a smaller paycheck since he's getting the negotiated cost from the insurer). As of April, when the FDRS conference took place, he was getting more than half of his patients approved for coverage. Finally, I'm at a late stage, which may help push things forward since the possibility of me needing more serious interventions (like knee replacement surgery or mobility aids) is becoming a very real possibility.
But things going against me? Most insurers deny lipedema patients surgery on the grounds that the procedure is cosmetic or experimental (fact: Recent studies have shown that the surgery has excellent long-term success rates not only in terms of aesthetics but also in terms of functional improvement, symptom reduction and recurrence rates).
My MLD, or physical therapy, was completely covered, and because it was performed at an in-network provider, I only had to pay a small copayment. The amount billed? $2,968.
The Flexitouch is considered durable medical equipment. It was billed at $12,809.17. My copayment/coinsurance was $3,716.68. The Flexitouch company further reduced that cost to just $2,000.
There are no medications, but many women use supplements to combat the inflammation, venous insufficiency, swelling and other associated symptoms. These include selenium, Butcher's broom, vitamin D, fish oil, probiotics and turmeric, just to name a few. This can also get costly. Insurance does not cover supplements.
Compression can vary wildly in cost and usually isn't covered unless you have lymphedema as well. I use Bioflect, which is definitely a more affordable brand. The Bioflect Pro leggings (which cover from foot to ribcage) cost $105 per pair (and you definitely want more than one pair unless you want to be stinky and gross) and then add in some arm sleeves for about $50 per pair.
For women with no insurance or whose insurance refuse coverage, these costs can be impossible to manage.
There's also a heavy time commitment to treatment. The Flexitouch treatment takes two hours a day, two hours when I have to sit still while the machine does its work. The MLD appointments last about an hour and took place twice a week. There are all the other little time-takers during the day, too, like wrestling myself into and out of compression (this is not an easy job), and I have to do it before and after any treatment, after bathing, whenever I use the bathroom ... it's burdensome.
Dieting and exercise would be a breeze compared to this. This is where I am right now. Denial, desperation, resignation. I'm slowly moving towards acceptance.
And on that note -- I have my surgical consult in about two weeks. Hopefully, I'll find out where I stand when it comes to insurance coverage. I am so afraid my luck is going to run out soon.
Things I have going for me? My surgeon is an assistant professor at a top tier medical university that is associated with the hospital through which my insurance is provided. He is the only lipedema surgeon in the country that actually accepts insurance. He fights tooth and nail to get his patients' surgeries covered because he believes we all have a right to treatment. (This also means he's getting a smaller paycheck since he's getting the negotiated cost from the insurer). As of April, when the FDRS conference took place, he was getting more than half of his patients approved for coverage. Finally, I'm at a late stage, which may help push things forward since the possibility of me needing more serious interventions (like knee replacement surgery or mobility aids) is becoming a very real possibility.
Who could have imagined that being at late stage three lipedema could ever be considered a good thing? Well, in this case, I think it might be! I'm actually worried I might be more like an early stage four since my therapist said I have lymphedema in my calves, but it's still at an early, reversible stage, so I'm sticking with stage three until someone tells me differently!
But things going against me? Most insurers deny lipedema patients surgery on the grounds that the procedure is cosmetic or experimental (fact: Recent studies have shown that the surgery has excellent long-term success rates not only in terms of aesthetics but also in terms of functional improvement, symptom reduction and recurrence rates).
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