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.


Anonymous said...

This fighting with insurance companies is nothing new. I was an RN from 1969 to 1989ish working in hospitals, and this is an age-old story. The insurance companies are in business to make a profit, not help their customers, and that sucks!

I've been fortunate with insurance companies in my cancer journey; the only fight I have had is with a hospital for a procedure that both I and my insurance company paid for. I finally got my money back after I called the hospital's PR person - amazing how bad publicity or the threat thereof will get more results!

jamenta said...

What bothers me about this - is we Americans seem to think this ought to be the norm - i.e. there is nothing new and this is what we should put up with.

I think the huge fallacy is our assumption that a for-profit health care system for our country is by fiat - a better system, and therefore we should accept insurance companies doing whatever they can to avoid paying bills - because they want to make more money.

If we even look outside our American bubble of Rah-Rah-Rah nationality we're the best etc. We will find that we're the only advanced country in the world that doesn't provide universal and affordable health care for all our citizens.

In a country where wealth inequality has now reached 1920s robber baron gilded age levels - when are we Americans going to wake up - and realize that we can do better for ourselves as a country by pooling our resources (at least on some things such as health care). That allowing our health care system to be run by a relatively few huge corporations that are in it for profit, and have a repeated record of attempting to get out of their obligations and/or denying coverage etc - that we too, as a country, would be far better off if we ditch these corporations ad adopted a Single Payer plan for our entire country and for all Americans. It would help all of us - we wouldn't be saddled with disastrous medical bills or the additional stress of insurance companies fucking with us - and we would probably all end up a lot healthier.

Perhaps the only group of Americans that might not benefit as much from Single Payer would be the ultra-wealthy, who god forbid, might have to pay some extra taxes and/or the corporations they own might have to be profitable in other businesses other than human health.

Inga said...

I am so glad I found this blog! I have Stage 4 adenocarcinoma with a head full of brain mets. I was diagnosed in March, and was found ALK positive. I am on Crizotinib and have been for about a month. The radiation on my brain has shrunk those tumours and the drug is working on my one lung tumour and the lymph nodes. The side effects have been minimal. I am Canadian, so the drug is available through the public system. Normally one has to two a few rounds of traditional chemo and then apply to get the targeted drug. In my case (age 47 health mother) I got it right off the bat, which was so great. I have no idea how long my tumours were forming,I didn't have so much as a common cold for years.. and suddenly my head filled with water from tumours. I had headaches for a week then my doc sent me for a scan... and there they were. Silent little deadly killers. I am very interested in following the stories of people in my situation, because it is a brand new world for treating folks like us... and we should know what others are going through. Thank you for writing this blog!!!

Lil-Lytnin said...

Inga, I am so sorry to hear you have joined our lung cancer family, but I'm am happy that this blog has been helpful to you. I hope Xalkori proves to be a wonderful drug for you. If you haven't already, check you Kim's blog, She is ALK and has written about her treatment including info about other ALK trials. Best of luck to you, and please reach out if you have any questions!

Lil-Lytnin said...

Thanks for your comment, Ruth. It just seems so wrong that insurance companies are in this to make a quick buck at the expense if the very people they are supposed to be helping. I hope your treatment continues to go well, with no insurance challenges!

Linda said...

Your post made me so glad - once again - that I don't live in America! When are you guys going to wake up and adopt a decent public health system? I hope it's soon because here in Australia our idiot politicians are pushing us further and further towards your godawful private system.

My 86-year-old mum died recently from lung cancer with multiple metastases. The bill for all her scans, tests, treatments and final hospitalisation was zero. She paid for it all during her working life by paying tax. What exactly do your taxes pay for?