Insurance denied husband’s genomic testing

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jep
Posts: 238
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Insurance denied husband’s genomic testing

Postby jep » Mon Sep 16, 2019 7:29 pm

Got a letter from our insurance company saying that they will not pay for the genomic testing....has anyone written an appeal before? That’s where we’re headed...
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -

Rock_Robster
Posts: 495
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Insurance denied husband’s genomic testing

Postby Rock_Robster » Mon Sep 16, 2019 8:39 pm

Very strange decision at Stage IV - can your oncologist perhaps schedule a “peer-to-peer” call with the insurer’s medicos to explain why genomic testing is necessary to inform the chemo regime? (I’m sure they’d rather not pay for drugs that won’t work...)

Cheers
Rob
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9.
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic VMAT radiation; complete metabolic response
07/19 ULAR (robot), temp ileo, 1/27 LN
08/19 Missed a liver spot
08-11/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileostomy reversed
03/20 PET & MRI = NED!

Amarie123
Posts: 47
Joined: Wed Nov 14, 2018 6:46 am

Re: Insurance denied husband’s genomic testing

Postby Amarie123 » Mon Sep 16, 2019 9:15 pm

My testing was denied by my insurance company as well and my oncologist appealed. They actually denied the appeal and the hospital paid. He said MGH has a “fund” for such situations. I would ask if they can appeal and what, if any, other options exist for payment.

WarriorSpouse
Posts: 217
Joined: Tue Aug 16, 2016 9:02 pm

Re: Insurance denied husband’s genomic testing

Postby WarriorSpouse » Mon Sep 16, 2019 10:30 pm

Many Oncology sections have Nurse advocates that can help mitigate such insurance road blocks. Keep asking, appealing and getting professional referrals. Nothing is easy in this fight, but so many treatment options can opened-up for patients with special genetic profiles. Genetic testing is the key to better understanding of what you and your family are confronting. Maybe a major cancer center in your area will have a better approach, keep calling and asking until you get the answers that satisfy you. Best wishes!
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: Insurance denied husband’s genomic testing

Postby NHMike » Tue Sep 17, 2019 8:16 am

My coworker with lung cancer has had it a few times as he's had mutations. He goes to Dana Farber. Our insurance doesn't cover it either but I suspect that his oncologist at DFCI convinced the insurance company to cover it.

I asked my oncologist at my local hospital to do it and he ignored me (laughed it off). I think that he was surprised when I got it without his help.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: Insurance denied husband’s genomic testing

Postby NHMike » Tue Sep 17, 2019 8:20 am

Amarie123 wrote:My testing was denied by my insurance company as well and my oncologist appealed. They actually denied the appeal and the hospital paid. He said MGH has a “fund” for such situations. I would ask if they can appeal and what, if any, other options exist for payment.


MGH does the testing on-site - they don't send it out. So they may have more flexibility. They did mine for free too.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

User avatar
Jack&KatiesMommy
Posts: 613
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Insurance denied husband’s genomic testing

Postby Jack&KatiesMommy » Tue Sep 17, 2019 12:42 pm

My insurer denied the Foundation1 Testing that my oncologist ordered, stating that it was still experimental. My oncologist appealed (it was denied) and I appealed with lots of research and my appeal was likewise denied. However, my insurance DID approve off-label treatment with Keytruda even though I was MSS, so I cannot complain.

Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: Insurance denied husband’s genomic testing

Postby NHMike » Tue Sep 17, 2019 12:59 pm

Jack&KatiesMommy wrote:My insurer denied the Foundation1 Testing that my oncologist ordered, stating that it was still experimental. My oncologist appealed (it was denied) and I appealed with lots of research and my appeal was likewise denied. However, my insurance DID approve off-label treatment with Keytruda even though I was MSS, so I cannot complain.

Cynthia


I was looking at two of the papers on the new BRAF treatment and was wondering how insurance companies don't do Genomic testing given that the choice of chemo used can affect the cancer.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

jep
Posts: 238
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Insurance denied husband’s genomic testing

Postby jep » Tue Sep 17, 2019 1:19 pm

Thank you all for sharing your experiences and well wishes! My husband called his oncologist yesterday, and his doc is calling to appeal. The testing is being done at Yale, so I'm not sure how they might handle a situation like this, but we will ask at our appointment next week. Yes, we will keep pushing until my husband gets the care that he needs and deserves . . . it was kind of a blow, but just another battle along the way. We're headed to MSK tomorrow, so stay tuned . . . I hope to have some promising options to share :)
jep
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -

Amarie123
Posts: 47
Joined: Wed Nov 14, 2018 6:46 am

Re: Insurance denied husband’s genomic testing

Postby Amarie123 » Tue Sep 17, 2019 3:23 pm

NHMike wrote:
Amarie123 wrote:My testing was denied by my insurance company as well and my oncologist appealed. They actually denied the appeal and the hospital paid. He said MGH has a “fund” for such situations. I would ask if they can appeal and what, if any, other options exist for payment.


MGH does the testing on-site - they don't send it out. So they may have more flexibility. They did mine for free too.


I did see results that were processed at MGH (which identified the KRAS mutation) but there was also Guardant360 genomic testing done which took about 3 weeks to come back. My onc warned me that the claim would likely be denied but said that they would handle it on their end if needed.

Either way, a larger hospital should have an obudsman (I think that’s what it’s called) to help advocate with insurance if the oncologist and their team don’t do this. It doesn’t make any sense for insurance to deny these claims.

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: Insurance denied husband’s genomic testing

Postby NHMike » Tue Sep 17, 2019 4:57 pm

Amarie123 wrote:
NHMike wrote:
Amarie123 wrote:My testing was denied by my insurance company as well and my oncologist appealed. They actually denied the appeal and the hospital paid. He said MGH has a “fund” for such situations. I would ask if they can appeal and what, if any, other options exist for payment.


MGH does the testing on-site - they don't send it out. So they may have more flexibility. They did mine for free too.


I did see results that were processed at MGH (which identified the KRAS mutation) but there was also Guardant360 genomic testing done which took about 3 weeks to come back. My onc warned me that the claim would likely be denied but said that they would handle it on their end if needed.

Either way, a larger hospital should have an obudsman (I think that’s what it’s called) to help advocate with insurance if the oncologist and their team don’t do this. It doesn’t make any sense for insurance to deny these claims.


The Guardant360 testing appears to be genetic testing for genes related to a variety of mutations. That would have been a blood test I think.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Amarie123
Posts: 47
Joined: Wed Nov 14, 2018 6:46 am

Re: Insurance denied husband’s genomic testing

Postby Amarie123 » Tue Sep 17, 2019 5:13 pm

NHMike wrote:
MGH does the testing on-site - they don't send it out. So they may have more flexibility. They did mine for free too.


[/quote]

The Guardant360 testing appears to be genetic testing for genes related to a variety of mutations. That would have been a blood test I think.[/quote]

Yes, it was a blood test.

jep
Posts: 238
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Insurance denied husband’s genomic testing

Postby jep » Wed Sep 18, 2019 4:04 pm

Great news!! Apparently Yale went forward with the Oncomine testing despite the insurance denial!! They have the results and have shared them with my husband’s local oncologist....we meet with him Friday to discuss....we also head to Yale in 1 week to meet with the Phase 1 director there....Yale will deal with the insurance company! Yay! So happy right now....
Thank you everyone :)
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -

Amarie123
Posts: 47
Joined: Wed Nov 14, 2018 6:46 am

Re: Insurance denied husband’s genomic testing

Postby Amarie123 » Wed Sep 18, 2019 4:53 pm

jep wrote:Great news!! Apparently Yale went forward with the Oncomine testing despite the insurance denial!! They have the results and have shared them with my husband’s local oncologist....we meet with him Friday to discuss....we also head to Yale in 1 week to meet with the Phase 1 director there....Yale will deal with the insurance company! Yay! So happy right now....
Thank you everyone :)


Great news!!

Brearmstrong
Posts: 93
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Insurance denied husband’s genomic testing

Postby Brearmstrong » Wed Sep 18, 2019 5:42 pm

Great news! I started to read your chain and was getting upset because as you know, I am being treated at Yale but also work there so I know they would never not do the testing and I was about to get angry for you :D. Hope the results help!
Brenda
48 F Jan 17 2 sons
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT Jul 2017, oct 17, CEA 3.4, nov 17 8.1. May 18 2.3,1.0,1.3, 1.3, 1.0, 2.3, 2.2, 2.1,2.2,1.6,1.4,1.5,2.8,2.2
Oct 2017 clean CT
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive xeloda continues
Aug 18-CT NED Clear CT's Nov 18, Feb 19, May 19, Aug 19,Nov19, May 20


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