I am fortunate to have very good insurance coverage from my long-term employer. The employer is also very involved when annual coverage is renegotiated to be sure employees will not lose benefits they are already receiving, or be moved from providers they with whom they already have treatment established. In my nearly three-year run with multiple myeloma, I've paid only the minimal expected amounts and never had a treatment or test denied.
Until now.
In September 2016 I began an aggressive maintenance treatment of Kyprolis, Pomalyst, and dexamethasone (KPD). At the time I started, my insurance was administered by "Company #1" (I'm anonymizing company names). The treatment was approved and paid for for at least two cycles before the administrator was changed to Company #2. Treatment continued monthly through 2017.
I should mention that my disease progressed while on the initial treatment of Revlimid, Velcade, and dexamethasone (RVD) and immediately responded when I was switched to Kyprolis, Pomalyst, and dexamethasone as treatment. After an autologous stem cell transplant (ASCT) and Kyprolis, Pomalyst, and dexamethasone maintenance, I've achieved a complete response.
In September 2107, a year after maintenance started, insurance administrator #2 sent a letter denying triplet maintenance coverage, particularly for Kyprolis, “based on Medical Necessity, Experimental Treatment, or Similar Exclusion/Limit that involves scientific judgement.” They contend Kyprolis in combination with Pomalyst is not a maintenance therapy approved per the NCCN guidelines, which support only single-agent maintenance.
My doctors will be writing to appeal this decision. I’ve written a letter as well. To date it appears I will miss at least one complete cycle of Kyprolis. My employer is self-insured and we have a broker that negotiates for us. There is a chance they will convince Company #2 my treatment should be grandfathered.
Do any of you have other advice for steps I should take to have the denial reversed?
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8 posts
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: How to appeal insurance denial of myeloma treatment?
It may take a while for NCCN guidelines to be revised to reflecting contemporary research results. So, it might it be helpful to provide the specific peer-reviewed scientific articles reflecting the effectiveness of your doctor's treatment recommendation.
I am so sorry you have to go through this!
I am so sorry you have to go through this!
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WholeNotherWorld - Who do you know with myeloma?: my husband
- When were you/they diagnosed?: Dec. 2016
- Age at diagnosis: 67
Re: How to appeal insurance denial of myeloma treatment?
Hello Mark,
It might be that the key point is that your employer is "self-insured". Talk to the broker and your company's insurance specialist, but in this situation the company may have more control over payment authorization than if the company was not self-insured. If you or the company pays for insurance, the insurer can take the position that the treatment is not standard or experimental, etc. and refuse to pay out THEIR money. If in this case the insurer is only following guidelines in an attempt to administer your company's program (and money) according to standard procedures, then your company might be persuaded to cover the treatment. It would be setting a precedent for others, if true, but ...
SDC
It might be that the key point is that your employer is "self-insured". Talk to the broker and your company's insurance specialist, but in this situation the company may have more control over payment authorization than if the company was not self-insured. If you or the company pays for insurance, the insurer can take the position that the treatment is not standard or experimental, etc. and refuse to pay out THEIR money. If in this case the insurer is only following guidelines in an attempt to administer your company's program (and money) according to standard procedures, then your company might be persuaded to cover the treatment. It would be setting a precedent for others, if true, but ...
SDC
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Foundry738 - Name: Biclonal
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2016
- Age at diagnosis: 67
Re: How to appeal insurance denial of myeloma treatment?
Hi Mark,
Have some faith that your doctor's letter will reverse your insurance company's decision. My insurance company initially denied two PET/CTs that my oncologist was then able to get approved based on him writing them letters. So, the appeal process can be successful at times.
Note that the current NCCN guidelines are fairly up-to-date and CPD (KPD) is approved by the NCCN for previously treated multiple myeloma patients in the primary treatment phase. You have probably already looked at the 2018 NCCN patient guidelines. But in case you haven't, they are posted here. In particular, note the discussions on pp. 48- 52. To me as a layman, there has always been a somewhat fuzzy line between the maintenance and the primary treatment phases.
https://www.nccn.org/patients/guidelines/myeloma/
Have some faith that your doctor's letter will reverse your insurance company's decision. My insurance company initially denied two PET/CTs that my oncologist was then able to get approved based on him writing them letters. So, the appeal process can be successful at times.
Note that the current NCCN guidelines are fairly up-to-date and CPD (KPD) is approved by the NCCN for previously treated multiple myeloma patients in the primary treatment phase. You have probably already looked at the 2018 NCCN patient guidelines. But in case you haven't, they are posted here. In particular, note the discussions on pp. 48- 52. To me as a layman, there has always been a somewhat fuzzy line between the maintenance and the primary treatment phases.
https://www.nccn.org/patients/guidelines/myeloma/
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: How to appeal insurance denial of myeloma treatment?
Thank you Multibilly. I had not seen this and had no idea where to look.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: How to appeal insurance denial of myeloma treatment?
Hello Mark,
You may want to include the U.S. Food and Drug Administration’s approval (and supporting documentation) of the combination therapy of Kyprolis, Pomalyst, and dexamethasone for the treatment of patients with relapsed or refractory multiple myeloma. Being an administrative agency of the US government, this information will be relevant in the appeal process.
On lines of what Foundry738 mentions, a self-insured corporation will have a stop loss policy that will limit the company’s exposure for a single large claim, or, numerous claims in a certain time period. Being self-insured, a company is looking at what is in their best interest, by paying the claims themselves. Hence, the Third Party Administrator (TPA) is acting on behalf of the company’s best interest.
Best,
ZZ
You may want to include the U.S. Food and Drug Administration’s approval (and supporting documentation) of the combination therapy of Kyprolis, Pomalyst, and dexamethasone for the treatment of patients with relapsed or refractory multiple myeloma. Being an administrative agency of the US government, this information will be relevant in the appeal process.
On lines of what Foundry738 mentions, a self-insured corporation will have a stop loss policy that will limit the company’s exposure for a single large claim, or, numerous claims in a certain time period. Being self-insured, a company is looking at what is in their best interest, by paying the claims themselves. Hence, the Third Party Administrator (TPA) is acting on behalf of the company’s best interest.
Best,
ZZ
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ZippyZelda - Name: ZippyZelda
- Who do you know with myeloma?: Spouse
Re: How to appeal insurance denial of myeloma treatment?
Thank you Zippy. I will look into the Kyprolis information you mentioned.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: How to appeal insurance denial of myeloma treatment?
Update: My appeal was granted and I will be returning to treatment this afternoon. I hope to share more about my experience later. Thanks to everyone that chipped in support.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
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