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07-05-2009, 07:44 AM
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#1
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Senior Member
Join Date: Sep 2006
Location: Chicago, IL
Posts: 105
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Help for a friend - Insurance question
Hi everyone. Hope you are enjoying the 4th of July weekend. I need some advice for a friend who has leukemia. Her insurance company is fighting her on paying for the chemo drug she is taking. They consider it "experimental." (Unfortunately it is her second line of defense as the first one was damaging her liver.) Do any of you have advice on how she should negotiate with her insurance company? Thanks!
Lisa
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07-05-2009, 12:06 PM
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#2
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Senior Member
Join Date: May 2006
Posts: 3,142
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Help for a friend - Insurance question
Can the drug company that makes the chemo be of any help? Some drug companies have programs to help with the cost of medicine.
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07-05-2009, 05:56 PM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Alice is right about access programs. Definitely check into that as well!
Is the chemo she is getting truly experimental? Is it approved by the FDA as a standard treatment? Her doctor and/or the business office where she gets treatment should be able to shed some light on it for her. Or, better yet, is there a patient advocate nurse at her treatment center who can help her truly figure out why they are denying it. One question to ask is if it is a treatment that medicare covers. If so, most insurance companies follow medicare mandates (which can occasionally work in favor, and can often work against...). If she truly finds out that she has a basis for appeal, the most important thing to do when filing the appeal is to immediately cc: the state board of insurance, and make sure the insurance company knows that they have been cc:ed. (Call the state board and ask who you send the copy of appeal to). This tends to light a fire under insurance companies to straighten up and fly right. Also, it could just be that they need a letter of medical necessity from her doctor in order for her treatment to be covered under the mandates of her policy...
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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07-06-2009, 07:44 AM
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#4
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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I would suggest that she contact the Disability Rights Legal Center
Regarfs
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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07-06-2009, 11:16 AM
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#5
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Senior Member
Join Date: May 2006
Posts: 3,142
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Help for a friend - Insurance question
Good ideas Brenda and Joe. I am also thinking that if all else fails she might be able to get some referrals to financial help from the American Cancer Society. Partnership for Prescription Assistance might be able to offer some advice or help too.
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07-07-2009, 07:28 AM
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#6
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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You've got some good advice already, but I think the doc needs to go to bat. Sometimes just a little push is more than enough. She can't take the first line because it is damaging her liver. The insurance company needs to know it will cost them more money to fix her liver down the line that it would just to give her the second line drug (believe me). the doc should have social workers looking in to this along with the insurance staff. This is really not something your friend should be stressing over. My doc would just give me the treatment and let the rest of the staff get the approval. Do you know which drugs are under consideration?? Maybe I can find some info from my leukemia doc??
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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07-07-2009, 10:25 AM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Also - call the Lance Armstrong Foundation patient support hotline:
866.673.7205
I believe they have advocates who can help you deal with insurance. They are more likely to help with these questions than the ACS, I think.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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