Friday, June 06, 2014

Fighting the Wrong Fight

I've been following musician Zoe Keating's struggles with their insurance company after her husband's recent diagnosis of stage IV lung cancer with mets to the brain, and it occurred to me how many people in my lung cancer family have fought that same battle. When diagnosed with advanced lung cancer - one of the deadliest cancers out there - we should be focusing on fighting for our lives, and enjoying time with loved ones. Instead, so many of us have to expend our energy fighting with insurance companies.

  • Example #1: Zoe Keating's (@zoecello) husband
Zoe has been wonderfully public about this fight, posting images of their bills and transcripts of phone conversations with their insurance company. Thanks to the power of social media, Anthem Blue Cross had agreed to cover his initial hospital stay. Here's hoping they continue to cooperate throughout his treatment.
To Read More:
"Read the fine print"- tumbler post that includes photos of the actual bill with denied charges
"As if this isn't hard enough" - tumbler post with initial denial of the claim, along with media's response

Choice quote: 
"Coverage for the requested service is denied because the service does not meet the criteria for “medical necessity” under your description of benefits."
Not medically necessary to hospitalize someone who cannot breathe? 

Status: Resolved (for now)

In her post, "Insuring the Terminal Patient" Janet explains how her insurance company denied her biopsy when her cancer spread to a new location, and the doctors needed confirmation that it was malignant before they determined the best course of treatment. Thanks to her blog post going viral on twitter, the company decided to pay the claim.

Choice quote:
"… in this case the member is already known to have progressive Stage IV Bronchogenic carcinoma even after therapy. Specifically identifying the histopathology of this right upper lobe lesion is not going to affect long-term health outcomes."
Anyone who has been following current lung cancer research (heck, anyone who has been following my blog) knows that taking a biopsy and examining the tumor can have an enormous impact on the course of treatment and life of the patient.

Status: Resolved
Stage IV NSCLC Survivor: 3 years and counting, taking targeted med Xalkori for her ROS1 mutation, currently NED (No Evidence of Disease).

Blog post "Breaking up with Blue Cross Blue Shield" tells Samantha's infuriating tale of denial by Blue Cross Blue Shield of Atlanta. She was responding remarkably well to the targeted med Tarceva, and had only a portion of her primary tumor left, so her oncologist thought it would be best to radiate that area (with SBRT) to reduce the risk of it spreading. She continues to file appeals, but currently is stuck with a $116,000 bill, despite, as she said in her appeal to BCBS, "Your radiation oncologist AGREED with mine during the peer to peer review.  He agreed the SBRT was the right course of action to save my life."

Choice quote:
“We understand an appeal was requested because your doctor feels this treatment is medically necessary for you. Based on the information we have, the previous coverage decision can’t be changed. The services are considered not medically necessary….”
So the insurance company understands her medical needs better than her oncologist?

Status: Not Resolved
Stage IV NSCLC Survivor: 18 months and counting, taking targeted med Tarceva for her EGFR mutation, currently has no active cancer (thanks to the radiation that BCBS refuses to pay for).

Kim had been on Xalkori for her ALK mutation for over two years when suddenly her insurance company said she owed $7,000 for her refill. In "Boiling Point" she recounts a day of phone calls that finally got them to reverse this and give her the medicine for the normal price.

Status: Resolved
Stage IV NSCLC Survivor: 3 years and counting, currently on a clinical trial of alectinib for her ALK mutation. Her brain mets are shrinking and her lung tumor is stable.

  • Example #5: Me!
You may recall that when I first started on Xalkori, my insurance denied it (I told the story in "Stage IV is No Time to be Timid"). Thanks to blogging and the twitterverse, BCBS called me to let me know they would pay for the medicine. 

Status: Resolved
Stage IV NSCLC Survivor: 1 year and counting, taking Xalkori for ROS1 mutation. 

As you can see, insurance company battles are far from rare. Yes, medical treatment is expensive, but as Zoe points out, 
"Anthem is owned by WellPoint. Did you know Wellpoint CEO Joseph Swedish earned almost $17 million during his first year on the job? Now you know how they can afford to pay him."
$17 million could buy a lot of Xalkori.