Cure Alveolar Soft Part Sarcoma International (iCureASPS)

We just found out today that our insurance Premera is willing to make an exception for coverage of our daughter's laser lung surgery with Dr. Rolle this past summer. Yippee! (PTL!) Thank you Olga for sending me your appeal in Canada (Canada was willing to reimburse laser surgeries #2 and #3, but not #1 which was deemed experimental).

I was so surprised they had approved it at the Level 1 of an appeal. I think this means it is more likely that future surgeries will also be covered too. This is a huge financial relief for us. Especially as we have a high deductible plan and here we are again facing the beginning of the year. We would be happy to share our appeal letters, documentation, and accompanying reports by email by any who are interested. Because it is medical information we do not want to post it on the Internet. Please do contact us if you will pursue this.

I had looked up the statistics on appealing insurance denials and Premera and the % success rates are fairly encouraging (25-75% approved, all types of treatments and procedures), so think about it. The nice thing about the process through Premera is that they must answer the Level 1 appeal within 30 days of submission. There is also a Level 2 appeal which a patient can request meeting in person with the committee. If it went to Level 2, we would have had to have more doctors letters and also the state would become involved (as would external consultants).

We only submitted the Hospital and Surgery bills (removed the costs for staying in the hospital, flights etc.), and the total with their calculations of US dollars to Euros came to about $17,000.

Because our daughter had had a previous conventional thoracotomy on the left, we could see how much more lung was removed with conventional (ie stapling) vs. laser thoracotomy. Rolle also uses a muscle sparing technique so her recovery was quicker (easier on her golf swing).

Blessings to you, 'F'

'F', hi, we are just recently back from the vacation and I just saw your message that 'K''s laser surgery in Germany was covered by the insurance. I suggest you to post here a plan/check list for your initial application and the Level 1 of an appeal that you made for Premera coverage - what documents did you provide with the appeals.
I have to comment and correct you on the Canadian situation here too:
You are saying that

'F' wrote:Canada was willing to reimburse laser surgeries #2 and #3, but not #1 which was deemed experimental

. It was not exactly like that.
When Ivan was denied the surgery for his multiple lung metastases initially here in Vancouver, Canada they stated that they can not resect all metastases so his situation is unresectable and since only complete resection of all metastases is generally admitted to have a benefit for survival then there is no benefit in the incomplete surgery. When we contacted Dr.Rolle he stated that with his technology the situation is resectable. I submitted a written appeal to our oncologist and surgeon here to have Ivan officially referred for Dr.Rolle surgery. They refused and we left to have Ivan's first surgery on our own with no insurance approval and paid for it out of pocket. So their initial denial was not on the ground that the laser surgery is experimental although they tried this route too but it was relatively easy to deal with - it generally is not experimental as this type of laser is in use as a surgical tool for about 10 years now and there are some publications and FDA approval documents for the previous modifications of this laser (the latest modification that Dr.Rolle created is not approved yet but as a class these lasers are approved). When this first surgery was done Dr.Rolle wrote a report stating that the surgery was indeed the complete so all the expected benefits would apply and we filled the application to be paid for the second lung surgery that was expected to be in a few month by ourselves (although it had to be signed by anyone of Ivan's involved physicians but the only one who did sign it was his family Dr). We went for the second lung surgery still having no answer but when we came back we found out that the payment for the second surgery was approved (I think that the approval was based on a ground that the first surgery was complete but actually there was no reason stated for the approval, the letter was very short and it was said done on a non-precedent basis). Then we asked if the first surgery could be also paid for because the second surgery is paid for in the similar circumstances and they very unexpectedly agreed (that was clearly the good will step on their part as they didn't have to - in our rules when you go without a pre-approval you do not get money). So we got paid for the surgery #1 and #2 (right and left lung separately) and also claimed our travel expenses as tax deductible - going for the medical treatment for the patient and one caregiver.
After that Ivan had something very small but multiple (suspicious for recurrent or new metastases) found on his CT scans again but they were stable for a long period of the time - more then two years, so it was unclear what it was, we were hoping the spots after the laser burning of the smaller mets. Then they started to grow again and this was the point that they (our oncologist and thoracic surgeon) firmly refused to fill the application for the surgery #3 (start of the second round of the surgeries for the right and left lung), their statement was that the first surgery was obviously not a complete resection and there is no proof that partial metastasectomy prolongs survival. They were also weakly mentioning the point of the Dr.Rolle's modification of the laser surgical toll being experimental in US/Canada but it was not the main point (we've been there before so they knew that I would claim the modification being unique and advantageous based on the ground of improved survival statistics by Dr.Rolle's data and his hospital being a center of excellence that justifies an overseas travel). So generally speaking their denial now is based on their belief that the second round surgery in Ivan's circumstances would not have been a complete resection. So we paid for it ourselves again - I kept money they returned to us for the surgeries #1 and #2 sitting in a savings account specifically for the this use, this time we did not submit any application for the insurance as we really have no good argument to rely on and they also changed the rules for the applications and do not accept anything that is not signed by the local supervising oncologist/surgeon.
'F' - if you have found an approval for the previous laser that is in use as a surgical tool in the US now can you please post its number/link here.

Olga, I would think you could appeal the most recent. If a conventional thoractomy misses tumor, the insurance does not deny the procedure. Also there is a literature suggesting that redo thoracotomies are worthwhile if surgery can wait at least one year between procedures (more rapid means rapidly progressive disease).

Sorry, no link. I actually thought our letter was fairly vague, but I was mentally preparing for the level 2 appeal which involves outside experts. Our case was certainly helped by a letter from Seattle childrens surgeon saying that we should investigate the German laser because conventional resection would require too much lung loss.

If anyone is considering doing this, please contact me by email and I would be happy to send you pdfs of our cover letter.

Checklist in our letter of appeal:

1. Short summary of medical course - included primary removed with negative margins. Conventional thoracotomy on one side.
2. Letter from surgeon saying thoracotomy on other side not indicated because involvement of several lobes..
3. Surgery with Dr. Rolle because he felt he could remove them all with lung sparing.
4. Our statement: We proceeded with laser resection because they were her only chances for cure and best chance for long term remission.
5. Not experimental - established procedure in Europe, Laser resection approved by FDA in 1990s after LoCicero pubilshed paper
Quote "Twelve lesions were deep seated, could not have been removed by wedge resection or segmentectomy, and would have necessitated lobectomy without this tecnique. With the laser, the lesion could be precisely excised with minimal loss of lung parenchyma."
Excerpt from NCI website
6. References to support aggressive metastasectomy.
7. References to support Axel Rolle
8. Closing comments included: "This was the only possible option available for saving her life, and the surgery was a tremendous success."
9. Enclosures: Clinic report from surgeon, Path report 1st thoracotomy, Articles (Pumonary metastases from soft tissue...Pulonary metastasectomy for osteosarcomas and soft tissue sarcomas, Surgery for multiple lung, Clinical presentation, treatment, Alveoalr soft part sarcoma, Laser resection, Is surgery for...), Hospital discharge summary from Germany, Path report from Germany

To appeal we have to apply for the coverage first and be denied. The we would need to provide something to support the rationale for the redo-surgery in our case. But they changed the requirements for the initial application - it has to be initiated and signed by one of the oncology team and they will not. Probably in US you guys can apply independently but in Canada it is not a private insurance but the government funded and this is their way to save money as people are ready to fly to the moon chasing their hopes.

The article that the redo thoracotomies are worthwhile specifically mentions that it only applies if the consecutive surgery is expected to be a completed resection as well (the longer time between the surgeries is also a factor as it allows the lung to recover but not the only one).
Their argument was that they have all reason to not expect it to be a complete resection this time as in the same situation 3 years ago they agreed with Dr.Rolle's opinion that the resection will be complete and it wasn't. Probably the number of the recurrent mets is of significance. How can I apply for the coverage now if the very first scan after the last surgery #3 shows the signs of the multiple recurrence in the just resected lung - they told me that the surgery will not be complete and it obviously wasn't - and as they said "the advantage of the partial metastasectomy can not be demonstrated", they even had a tumor board review before to deny our idea to go for the surgery. We knew that there is no support and no money when we went for the third surgery but my idea is that in ASPS even the partial metastasectomy can have a survival advantage if the disease is a slow one and it can allow the consecutive surgeries with the goal ether achieve the surgical clearance at some point or hang around long enough for the systemic cure.
I think that your checklist in the letter of appeal is great. We should find the FDA approval doc for the old laser to put it somewhere on this board.