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Topic: Our Experience with COBRA and Breast Cancer

Forum: Employment, Insurance, and Other Financial Issues —

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Posted on: Jan 13, 2020 09:41AM

BLMike wrote:

My wife has Stage IV BC and is currently on Ibrance/Letrozole. Ibrance is quite expensive and I cross-posted this response to the Ibrance thread. I previously asked others in that thread if they had experience going through the COBRA insurance process. Unfortunately, apparently no one did. As a result, I thought I'd provide an update of what we're going through. It's not been fun especially given the high cost of Ibrance!

Obviously, her old company has to send her the COBRA application in order for her to start COBRA. We tried to expedite this, but they said they can't send her the application until after her termination from the company. Although she retired at the end of the year, she still hasn't received the COBRA application. After she fills that out, she'll have to wait for approval from the 3rd party who implements COBRA for the insurance company. This will likely take weeks. Once approved, her insurance will be retroactive to her last day of work (along with our premiums), but in the meantime, it appears to medical providers as though we have no insurance.

So far, it's been quite difficult and costly. We ordered her next cycle of Ibrance, but had to pay out of pocket for that. The cost was also $3,000 more than what the insurance company has been paying. Once she's approved and on COBRA, we can submit a claim for it, but it's not clear to me if we'll be reimbursed for the difference between what the insurance company has been paying and what we had to pay (the $3,000).

Then today we had an oncologist appointment to verify her blood work was OK to start the next cycle. Their initial position was that since we don't have insurance (yet), we have to delay the blood work and exam, which, of course, would delay her next cycle indefinitely. We pushed back on this and finally, they agreed to charge us for the visit (and the blood work), and we'll just have to fight it out with the insurance company once eventually COBRA kicks in retroactively to January 1, 2020.

All of this is requiring an awful lot of out of pocket expenses with no guarantee that the difference between what the insurance has negotiated and normally pays and what we have to pay will be reimbursed. We tried unsuccessfully to coordinate all this ahead of time with her former employer, the insurance company, the 3rd party COBRA administrator, and her Ibrance pharmacy, but simply got the run-around. This seems like a huge problem especially for expensive life-critical drugs such as Ibrance. I just thought I'd let folks know what we're going through. I'll provide a separate update when we have to submit all of these out of pocket expenses to the insurance company. Regardless, all of this just can't be in the spirit or intent of the COBRA process.

A member to gather information for my wife Dx 2009, DCIS, Stage 0, ER+/PR+, HER2- Dx 2016, IDC, Stage IA, 0/5 nodes, ER+/PR+, HER2- Dx 4/20/2019, IDC, Stage IV, metastasized to lungs, ER+/PR+, HER2- Targeted Therapy Piqray (alpelisib) Hormonal Therapy Faslodex (fulvestrant) Surgery Lumpectomy; Lymph node removal: Underarm/Axillary Radiation Therapy Breast Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Jan 13, 2020 09:57AM ctmbsikia wrote:

I'm so sorry. COBRA is very expensive. Did you not try a different plan in the open enrollment period last year? I am not 100% certain but losing health coverage is a qualifying life event so you could still buy a health plan that's less expensive than COBRA.

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/30/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/10/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Jan 13, 2020 09:58AM - edited Jan 13, 2020 01:46PM by WC3

I'm sorry you and your wife have to deal with this on top of the cancer. My European friends have expressed to me that the cost of, and lack of universal accessibility to the American health care system horrifies them and I agree. It makes me sick to hear about these struggles and to think this is happening in my country. I really hope the insurance company reimburses you in full for the cost.

Pathologic complete response (pCR) to chemotherapy. Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jan 13, 2020 11:53AM MargaritaMS wrote:

BLMike, so sorry to hear what you and your wife are going through. It's horribly unfair. I'm no expert on COBRA but I did go through the process myself a few years ago and what you are describing does not sound right. COBRA is supposed to be "continuation of coverage" not a reinstatement after cancellation. When I went through the process, I really had to stay on top of my company HR department in order to make them timely do what they are obliged to do but in the end, I never had to pay out-of-pocket for services that would rightfully be covered by the insurance plan. I'm sure you have scoured the web for information already but I found the below linked PDF on frequently asked questions put out by the US Department of Labor to be a very helpful guidance.

My best advice to you is to be a major pest to these people: bug your wife's company for the COBRA election paperwork, contact the third-party benefits admin company (if there is one) and contact the health insurance company directly. Inform all of these entities of your wife's intention to exercise her right to COBRA and do this IN WRITING. You must document every thing you do including following up phone calls with an email or letter summarizing your understanding of the conversation. This will help protect you in case deadlines are missed and this all goes FUBAR etc as they may then try to claim that you somehow didn't do what you were supposed to do. And finally, try to get someone to provide you with the actual cost of the premium that your wife will be responsible for - it's generally about 102% of the employer's cost (they are allowed to charge a small administration fee). Then, as soon as you have that figure, send a check to the employer clearly marked in the memo "elect COBRA". Once they cash the check - which businesses are usually quick to do - then you're in!

The "process" of electing COBRA should really not be complex but companies seem to make it so - it's infuriating as COBRA is a right not a gift. Hope this helps. Good luck! -M.

https://www.dol.gov/sites/dolgov/files/ebsa/about-ebsa/our-activities/resource-center/faqs/cobra-continuation-health-coverage-consumer.pdf

Dx 5/2000, IDC, Left, Stage IIB, ER+ Dx 4/2015, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER-/PR-, HER2+
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Jan 13, 2020 12:14PM BLMike wrote:

MargaritaMS -- Thanks for the info, but just to be clear, our insurance is not cancelled but rather, we're in this weird period between the processing of the COBRA paperwork and payment of premium. Coverage will be retroactive to January 1, 2020, her first day out of work. We previously contacted her HR Benefits Department, in writing, and they've identified, in writing, that they will expedite the COBRA application paperwork (still not received though). My wife followed up today and they indicated they are still working on it (whatever that means). They are supposed to provide her with a link through which she can apply for COBRA and through which we can make a payment (which we'll do ASAP).

We also called both the 3rd party administrator and the insurance company both of whom assured us that, upon approval and payment of premium, coverage would be retroactive to January 1, 2020 as long as we elect COBRA within 60 days (which is consistent with your link). Following up in writing to both is a good idea though.

Unfortunately, our experience with out of pocket expenses reimbursed later is consistent with what several other people who had to apply for COBRA have told us when they were in this same time period between processing of paperwork and payment. My brother indicated he had to wait 4-5 weeks just to get his COBRA application paperwork from one of his prior employers. I'm not sure whey this is so hard, but with expensive, life-critical drugs, it certainly shouldn't be IMO.

A member to gather information for my wife Dx 2009, DCIS, Stage 0, ER+/PR+, HER2- Dx 2016, IDC, Stage IA, 0/5 nodes, ER+/PR+, HER2- Dx 4/20/2019, IDC, Stage IV, metastasized to lungs, ER+/PR+, HER2- Targeted Therapy Piqray (alpelisib) Hormonal Therapy Faslodex (fulvestrant) Surgery Lumpectomy; Lymph node removal: Underarm/Axillary Radiation Therapy Breast Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Jan 14, 2020 10:52AM MargaritaMS wrote:

BLMike, it sounds like you are keeping on them so hopefully it will work out for you in terms of reimbursements etc. it’s so fundamentally unfair that your wife will both assume full financial responsibility for the insurance premiums yet not receive the full benefit of the insurance coverage. I agree with you that this cannot be consistent with the spirit of the COBRA legislation! Keep up the good fight!
Dx 5/2000, IDC, Left, Stage IIB, ER+ Dx 4/2015, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER-/PR-, HER2+
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Jan 14, 2020 01:14PM Yogatyme wrote:

BL Mike, so sorry you are fighting the insurance battle. Since your wife has a stage IV dx, she should qualify for Medicare and often it is fast tracked. However, there are some limits for those under 65 yo. I’m not very clear about it but if you go to the stage IV thread, someone can probably clarify. I hope this gets straightened out. Dealing w cancer is stressful enough wo fighting insurance co’s. Best wishes for you and your wife.

Yogatyme Surgery 3/2/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right
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Jan 14, 2020 03:30PM BLMike wrote:

Just a quick update: My wife's old company contacted her today with the COBRA application. This is apparently an indication she's now been approved for COBRA. All she has to do now is fill out the application and send in the premium. After that, the real battle will begin to get reimbursed for her IBRANCE prescription, Friday's MO appointment, and Fridays blood work all of which we've paid out of pocket. This is certainly moving faster than I anticipated (not fast enough but stillfaster than I thought).

A member to gather information for my wife Dx 2009, DCIS, Stage 0, ER+/PR+, HER2- Dx 2016, IDC, Stage IA, 0/5 nodes, ER+/PR+, HER2- Dx 4/20/2019, IDC, Stage IV, metastasized to lungs, ER+/PR+, HER2- Targeted Therapy Piqray (alpelisib) Hormonal Therapy Faslodex (fulvestrant) Surgery Lumpectomy; Lymph node removal: Underarm/Axillary Radiation Therapy Breast Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Jan 14, 2020 10:32PM MargaritaMS wrote:

That’s great news, BLMike

Dx 5/2000, IDC, Left, Stage IIB, ER+ Dx 4/2015, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER-/PR-, HER2+
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Feb 8, 2020 01:22PM BLMike wrote:

COBRA Update: Relieved to report that we received notification today from my wife's specialty pharmacy that we're going to be reimbursed for the full amount we paid out of pocket for her Ibrance (less a $25 co-pay). This is obviously a huge relief for us.

A member to gather information for my wife Dx 2009, DCIS, Stage 0, ER+/PR+, HER2- Dx 2016, IDC, Stage IA, 0/5 nodes, ER+/PR+, HER2- Dx 4/20/2019, IDC, Stage IV, metastasized to lungs, ER+/PR+, HER2- Targeted Therapy Piqray (alpelisib) Hormonal Therapy Faslodex (fulvestrant) Surgery Lumpectomy; Lymph node removal: Underarm/Axillary Radiation Therapy Breast Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Feb 8, 2020 02:25PM Yogatyme wrote:

BLMike, great news and what a relief!!

Yogatyme Surgery 3/2/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right
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Feb 8, 2020 09:46PM MinusTwo wrote:

Mike - great news. Glad the issue is resolved.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014

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