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I got some good news today. In the mail was a notice from United Healthcare stating that the custom compression is medically necessary and they will cover it. That’s kind of a no-brainer for anyone informed about this condition, not fitting into off the shelf garments due to limb size disparity is kind of the definition of medical necessity.

The not so good news is the reason this notice came in the first place.

That story is a bit more involved. 

As I noted in my last post, we have been down this road of trying to get my compression before. What we figured out while arguing with Cigna and their in-network providers is the providers can’t charge for measuring or fitting, and they get reimbursed roughly half for the more expensive forms of compression necessary for someone with more advanced lipedema or in the treatment phase. So actually getting an in-network provider to provide it has been a problem of epic proportions. 

Shortly after our policy with UHC kicked in on March 1st, I started searching for a new in-network provider to obtain said compression.

It took some calling around. There wasn’t anyone in my local area, but Wright and Filippis in Grand Rapids, about an hour and twenty minutes south is in-network and provides the garments we were planning to order. I made an appointment, and my husband and I drove down with our prescription in hand. 

We met with Nora. She asked what we were there for, and I explained my history and what we were looking for. I then handed her my doctor’s prescription, which contained very detailed descriptions of the required full body compression.

After reading the prescription Nora said, oh, so we won’t be doing the compression that is like nylons then. I said no. She said well insurance only covers those. I said actually they cover all the products listed in my prescription, I know several people who have them. She said oh.

The prescription specifies Biacare for the limbs, so she tried showing me non-adjustable compression. I said no, the prescription specifies adjustable compression because I respond so rapidly to compression. She said oh.

She said “it’s nice to have such a wonderfully informed patient”. I said something to the effect of this isn’t my first rodeo.

She said she had only worked with the typical arm and leg stockings, and had not fit patients with other garments, and said she would make an appointment for me to come back when the reps from the two companies we would be using could come back and fit me. I said of course. So we agreed she would call to schedule a time.

When we came back again it was only to see the Biacare rep, not the Jobst rep. Early on in the appointment the Biacare rep says “I thought I was here to teach, not for a fitting, had I known it was a fitting I would have brought other things with me”. Nora looks like a deer in the headlights, says nothing, and then says “there must have been a miscommunication”.

The Biacare rep does a great job fitting me, took minutes, not the 2+ hours of my last fitting, and was way more accurate. Once she was done Nora talked to us about what she found out from Jobst and we agreed we would set another appointment. 

Meanwhile, before that second fitting appointment, Nora calls me and asks if I have time to talk. She says that my upper right arm is so much larger than my lower arm, that I can’t fit in Biacare’s standard garment. She said the rep from Biacare suggested I see a therapist for MLD to reduce limb size and then they can fit me in a standard garment. I’ll leave aside the whole practicing medicine without a license issue, in part because I have a hard time believing the rep from Biacare would do it, she is a professional who knows her business and deferred to the treatment plan of my therapist extensively during the fitting. I reminded Nora that we had been through the whole MLD before compression issue before, and without compression the fluid re-accumulates, which is why MLD + compression is the standard of care. She said oh.

I said Biacare also provides custom compression for just this reason as noted in their catalog. We just need to order that. She said oh.

Nora then replied they don’t typically cover custom compression. I said actually they do. You just need to follow the procedures and submit the claims with the appropriate documentation and we will handle the rest. She said oh.

Then she went back to the rep from Biacare thought if you did MLD it would reduce limb size. I said but we’ve tried that, it didn’t work, which is why MLD + compression is the standard of care. She said oh.

She said okay, I’ll try and submit it for pre-authorization but I’m not sure we’ll have any luck.

I said that’s all I’m asking for. If they deny it, we will figure out what to do next.

The insurance company has officially deemed it medically necessary. Now the rest is on Wright and Filippis.

We will see where we go from here.

Hopefully, to me, finally, after all these years, wearing the appropriate compression. And no longer bedridden and getting sicker by the minute.

Wish me luck. 🙂

Sending spoons for all my spoonies…