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Questions about RT and U.S. Insurance Coverage
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09/24/2012 11:48
myrightfoot 
09/24/2012 11:48
myrightfoot 
Questions about RT and U.S. Insurance Coverage

Hello! I am quite new to this issue of plantar fibromatosis. I have posted this on the Dupuytren Board, because there seems to be much more attention paid to DD over LD.

Naturally, I am concerned about finding appropriate treatment and insurance support in the U.S. I see on the forum that some U.S. patients are being turned-down by insurers for reasons such as: "We have reviewed the documentation provided. The requested service is not covered for the following reason: Radiation for Dupuytren's Contracture is considered experimental and investigational. Evidence comes from observational studies, or from randomized, prospective controlled trials."

I am hoping someone here can address these questions concerning supporting insurance appeals:

(1) I have purchased the book of conference proceedings (at $200), but I am wondering how I might get copies of those 2 articles only, in the event I need to forward to insurance company. I see Dr. Seegenschmiedt's chapters available at Springerlink for about $25 each, but I'm not sure how the articles are delivered - online only???

(2) Does anyone know if Dr. S has made his findings available otherwise? I think they are available on ResearchGate, but I'm not a scientist/researcher and can't get access, although perhaps the insurance reviewers would be able to get free access (?) The 2010 case study “Radiotherapy in Early-Stage Dupuytren’s Contracture” by Betz et.al. also seems to be available there.

(3) I found another reference on PubMed that I think would be considered an observational study:
Int J Radiat Oncol Biol Phys. 1998 Feb 1;40(3):637-45. Individualizing management of aggressive fibromatoses. Spear MA, Jennings LC, Mankin HJ, Spiro IJ, Springfield DS, Gebhardt MC, Rosenberg AE, Efird JT, Suit HD. Source: Department of Radiation Oncology, Massachusetts General Hospital , Harvard University Medical School , Boston 02114 , USA .

(4) Does anyone know of their U.S. physician collecting follow-ups and planning to publish? I assume U.S. insurers are reluctant to cover RT without seeing more diversity of independent published results.

(5) How else might we promote data collection to support our cause?

09/25/2012 01:41
flojo 
09/25/2012 01:41
flojo 
Re: Questions about RT and U.S. Insurance Coverage

You ask good questions and I don't know the answers. I think the best thing we can do is support this website. It is the Grand Central Station for all things Dupuytren's. There is a wealth of information if/when some graduate student needs a topic for a thesis or dissertation.

I talked with Anthem Blue Cross, my Supplement to Medicare provider, and they cover RT for Dupuytren's, BUT since Medicare is my primary, they only pay what Medicare approves. I didn't ask about Ledderhose because I don't have it.

09/25/2012 02:13
callie 
09/25/2012 02:13
callie 
Re: Questions about RT and U.S. Insurance Coverage

myrightfoot,

I think your above quote came from my experience with my insurance company. It will be interesting to see how this turns out for me. My insurance company (the quote above) just turned me down cold and would not accept studies/data from outside the U.S. that support radiation for Dupuytren's. But, I called the office of Christine Cha (mentioned today in another posting) and they ran the procedure through my same insurance company and they gave preliminary approval for the radiation. So I am hoping that with a change in codes and the experience of Dr. Cha at a large institution might change the feelings of my insurance company. We'll see.

In our area, they said Medicare would not cover the procedure.

Edited 09/25/12 05:14

09/25/2012 02:20
callie 
09/25/2012 02:20
callie 
Re: Questions about RT and U.S. Insurance Coverage

Additionally, I have LD in both arches. Ten years ago the nodules were like marble size and really affected activities. During the last decade the size has diminished and flattened. The nodules now do not affect my activities, but I have to be careful not to put pressure on the arches. I notice if I walk barefooted, especially up stairs, or walking barefooted in the sand. Shoe type has been important.

09/25/2012 04:44
flojo 
09/25/2012 04:44
flojo 
Re: Questions about RT and U.S. Insurance Coverage

I know, Callie. It's maddening! I would think San Diego/Scripps and Loma Linda UMC are in the same Medicare area. At least they have the EOB's form Scripps to use as justification if needed.

09/27/2012 22:10
myrightfoot 
09/27/2012 22:10
myrightfoot 
Re: Questions about RT and U.S. Insurance Coverage

Thank you, callie and flojo. For callie, I hope Dr. Cha's submission is approved by your insurance. It's disturbing that Medicare doesn't approve (which ones of the six? all of them?). I just found my nodule in July, and it already seems to have flattened, but I wouldn't say it's smaller. At first I didn't feel it, now it feels like a bruise, especially when I'm barefoot. It's hard to accept doing nothing - seems like something you'd (I'd) want to nip in the bud...

09/27/2012 23:19
callie 
09/27/2012 23:19
callie 
Re: Questions about RT and U.S. Insurance Coverage

Personally, I think the less you do about LD, the better. I would not have surgery unless I couldn't walk with the LD. I have been thoughtful about what I do so I won't make the condition worse. I always know when I have over done it because I get a burning sensation in the arch. It feels like I have torn the tissue. My arches are considerably better now than ten years ago. I never think about them anymore.

10/03/2012 03:15
callie 
10/03/2012 03:15
callie 
Re: Questions about RT and U.S. Insurance Coverage

This is the significant persuasion for coverage of RT by insurance companies in the U.S.

http://www.aetna.com/cpb/medical/data/800_899/0800.html

Policy

Aetna considers collagenase clostridium histolyticum (Xiaflex) injections medically necessary for the treatment of adults with Dupuytren's contracture with a palpable cord.

Aetna considers collagenase clostridium histolyticum injections experimental and investigational for all other indications (e.g., Peyronie's disease) because its effectiveness other than the one listed above has not been established.

Aetna considers percutaneous needle aponeurotomy (also known as percutaneous needle fasciotomy) medically necessary for the treatment of adults with Dupuytren's contracture with a palpable cord.

Aetna considers ortho-voltage radiation medically necessary for the treatment of early-stage Dupuytren's contracture (stage N, N/I). (Note: stage N: nodules/cords, no extension deficit = flexion deformity; stage N/I: less than or equal to 10 degrees deficit).

Aetna considers extracorporeal shock wave therapy for prevention of the progression as well as for treatment of Dupuytren's contracture experimental and investigational because its effectiveness for this indication has not been established.

Aetna considers night-time splinting for all individuals after fasciectomy or dermofasciectomy for Dupuytren's contracture experimental and investigational (unless extension deficits re-occur) because its effectiveness for this indication has not been established.

Notes: Injections of Xiaflex may be administered up to 3 times per cord at approximately 4-week intervals. Only 1 cord should be injected at a time. If patients have other cords with contractures of MCP or PIP joints, these cords should be injected in sequential order.

Prophylactic external beam radiation therapy (RT) has been reported to prevent disease progression in early-stage DC.

Keilholz et al (1996) evaluated initial response, long-term outcome, as well as treatment toxicity of RT for the prevention of disease progression in early-stage DC. A total of 96 patients (142 hands) received ortho-voltage RT, which consisted of 2 courses with daily fractionation of 5 x 3 Gy (total dose of 30 Gy) separated by a 6-week interval. The extent of disease was staged according to the Tubiana's classification. Initial evaluation was performed 3 months after completion of RT; long-term outcome was analyzed at last follow-up. The mean follow-up was 6 +/- 2 (range of 1 to 12) years. Fifty-seven patients with a minimum follow-up of 5 (median 7.5; mean of 9.5 to 12) years were separately evaluated for long-term outcome (i.e., prevention of disease progression). Acute and late treatment toxicity was assessed using the Radiation Therapy Oncology Group/EORTC criteria. According to stage, 130 cases (92 %) remained stable at 3 months follow-up, 10 improved (7 %), and 2 progressed (1 %). An objective reduction of symptomatic cords and nodules was achieved in 107 cases (75 %) at 3 months follow-up. Moreover, 87 % of the patients reported a subjective relief of symptoms. In long-term follow-up, only 16 of 142 cases (11 %) had progressed according to stage. In the group with minimum follow-up 5 years (n = 57), 44 patients (77 %) experienced no disease progression, whereas 13 progressed (23 %) inside [8 cases (14 %)] or outside [5 cases (9 %)] of the RT field. Most failures could have been avoided with appropriate choice of larger safety margins included in the treated portals; however, the failures outside were still amenable for another RT course. The authors concluded that RT is effective to prevent disease progression for early-stage DC, which helps to avoid an otherwise necessary surgical procedure that is performed in advanced stages of DC.

Seegenschmiedt et al (2001) presented the 1-year results of a prospective randomized trial that compared two different RT dose concepts for early-stage DC. A total of 129 patients (62 females; 67 males) were entered in this study: 69 had bilateral and 60 unilateral involvement of DC accounting for 198 irradiated hands. According to Tubiana's classification, 73 hands had Stage N (nodules/cords, no extension deficit = flexion deformity), 61 had Stage N/I (less than or equal to 10 degrees deficit), 59 had Stage I (11 to 45 degrees deficit), and 5 had Stage II (46 to 90 degrees deficit) DC. Prophylactic RT was randomly delivered; in Group A, 63 patients (95 hands) received 10 x 3 Gy (total dose of 30 Gy) in 2 series (5 x 3 Gy) separated by 8 weeks; in Group B, 66 patients (103 hands) received 7 x 3 Gy (total dose of 21 Gy) in 1 series within 2 weeks. Ortho-voltage RT (120 kV) was applied using standard cones and individual shielding of un-involved areas of the palm. Relevant patient and disease parameters were equally distributed in both groups.

Edited 10/03/12 06:17

10/03/2012 04:19
flojo 
10/03/2012 04:19
flojo 
Re: Questions about RT and U.S. Insurance Coverage

Good info, Callie! Thanks! I'm going to make sure LLUMC is prepared to use this if Medicare denies my RT

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