Insuring the Terminal Patient

When I returned home from my recent road trip, a letter from Blue Cross Blue Shield of Illinois (my health insurance company, also known as BCBSIL) was waiting for me. Even though I already knew they denied my appeal for last September’s biopsy, I was amazed at how quickly I transitioned from tired but happy traveler to enraged cancer patient.

The upshot of their message was this:

“You already have metastatic lung cancer. A biopsy won’t change the fact that you’re going to die from cancer.”

The statement probably came from the independent “physician who specializes in Internal Medicine/Pulmonary Disease” who reviewed my appeal. You can judge for yourself whether I’m overreacting from this excerpt. I bolded some words for emphasis.

” … 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.”

Boy, do I feel special.

A Bit of Background

Up till now, I really couldn’t complain about my insurance coverage. I’m fortunate enough to have Boeing Traditional Retiree medical insurance through my husband, and it’s paid for almost everything related to my cancer diagnosis and treatment (except for 10 cents of each carbo-taxol chemotherapy — go figure). I thought I had the gold standard of enlightened coverage.

After my first recurrence of cancer, which gave me my stage IV determination in October 2011, a large ugly tumor grew fast above my right collarbone. It was 3 inches long after about 2 months. In January 2012 I started second line chemo — 6 rounds of Alimta-Avastin which shrunk the tumor almost 90% — followed by radiation.

Six weeks after this second line treatment, a PET-CT scan showed the little sucker was dead. However, two new nodules had formed in my formerly-clear right lung. The nodules glowed hot enough on the PET scan to make them highly suspicious for cancer, but only a biopsy could determine whether the nodules were cancer, radiation pneumonitis (lung inflammation) or BOOP. BOOP stands for Bronchiolitis Obliterans with Organizing Pneumonia, a pneumonia-like condition that sometimes occurs in lung tissue after radiation in nearby tissue. If one or both nodules were cancer, I needed to go back on chemo — probably Alimta, which was effective against my cancer but eventually made me feel like I had the flu for three weeks out of every month. If one or both were pneumonitis or BOOP, I needed to go back on prednisone, an oral steroid with unpleasant side effects. We weren’t looking for lung cancer histology, although that would have been interesting info to have. Histology can determine whether a new cancer tumor is the same type of cancer as the patient’s previous tumor. A different tumor type might indicate a different type of treatment would be useful.

One of my nodules was too small to biopsy. The larger nodule was not accessible by more common biopsy methods of needle biopsy through the chest wall or endobronchial ultrasound. My pulmonologist recommended using the newer electromagnetic navigation bronchoscopy (EMN) to determine if the nodule were cancer or something else. We knew BCBSIL would probably not pay for the procedure because they have a policy stating EMN is “experimental” for all situations (despite the fact that Medicare pays for EMN and 2013 treatment guidelines list EMN as an acceptable diagnostic). BCBSIL had denied all EMN claims made to date by my hospital.

When BCBSIL denied the claim, I appealed. I explained my treatment history, including that my cancer is aggressive, and we needed to know if the nodule were BOOP or cancer to give me appropriate treatment. My doctor reviewed my letter and wrote a letter of his own to stick in the packet. I included scan CDs and appropriate medical reports.

Evidently that wasn’t enough. Because, well, I’m gonna die anyway.

FYI, the biopsy showed inflammation, but no cancer cells. The tumor board thought it was radiation pneumonitis; my pulmonologist wasn’t so sure. We tried prednisone for a month, but it had no effect. A follow-up CT one month after the biopsy showed the biopsied nodule was unchanged, while the other nodule had grown by 50%. My pulmonologist and oncologist agreed I needed to restart chemotherapy.

Misinterpreting Long-Term Health Outcomes

What frosts me about this letter is that a “specialist” decided there was no urgency to get a biopsy because it wouldn’t change my “long-term health outcome.” Did he expect me to go on steroids AND chemo (both of which have a significant impact on quality of life) in case one of them MIGHT work? Or do nothing, since I’m going to die anyway? Well, here’s a news flash: we’re ALL going to die! The purpose of medicine is to keep us as healthy as possible while delaying that inevitable long-term outcome as long as possible.

Unfortunately, such statements from doctors are not an uncommon occurrence for lung cancer patients. Many members of Inspire’s Lung Cancer Support Forum who’ve been diagnosed with metastatic lung cancer have been told, “There’s nothing more I can do.”

My biggest frustration is that in my case – and for an increasing number of lung cancer patients — the doomsday doctor is WRONG. I’m a perfect example of a stage IV patient who has a good prospect for years of a reasonably active life despite my disease.

I was lucky to have enough slides from a 2011 biopsy to have the University of Colorado test my tumor for the relatively new ROS1 genetic mutation in my tumor tissue. Because I tested positive for ROS1, I was able to enter a clinical trial for the targeted therapy crizotinib, a drug which inhibits my ROS1-driven cancer. The trial treatment eliminated both nodules and has given me No Evidence of Disease Status for five months. I am once again able to enjoy traveling, writing, and doing things with my family. If I had not had leftover biopsy slides, an EMN biopsy would have been my only opportunity to obtain enough tissue to test for ROS1. Without that ROS1 trial and crizotinib, I might be dead by now.

Doctors who don’t keep current on new treatment options and then decide a biopsy “is not going to affect long-term health outcomes” for metastatic lung cancer patients are insuring those patients will die sooner rather than later.

That’s not the kind of health insurance I want. Do you?

34 comments

  1. Lori PJ · · Reply

    You raise so many excellent points, Janet. I’m glad you’re writing this so we’re all more aware. This is not a “cancer patient” issue; this is a health care system issue that affects everyone.

  2. Diane Grisdale · · Reply

    I am so angry after reading your blog. It makes no sense at all no matter how a person looks at it, except of course to save the insurance company money. I am so very sorry you are dealing with people of this mentality and hope you can find another way.
    Thank you for telling us. Diane

  3. Call the fire department – I am flaming hot after reading this!!!!! I also am stave IV and have BCBSIL. I have not run into this situation yet but wow, I am almost speechless. This has got to change!

    Thank you for sharing, even if I didn’t like what it said.

  4. Felicia · · Reply

    Nearly two years ago, one of my early (not my first diagnostic, but perhaps my second see how the chemo is doing) scans was rejected by insurance. I received a letter that stated that essentially said that I had tumors all over my body and was going to die anyway. I remember crying when I first saw the letter especially as other than my pericarditis and something that was going on in my lung (wasn’t quite a tumor, more of an infiltrate), I did not know of any other “tumors” in my body.

    At this point, I chalk up a lot to insurance company stupidity. Every time my doctor asks to scan or do something with me, they pretty much turn it down. This is my third insurance policy since the disease started (due to changes made by my husband’s work). Now I don’t even blink and barely ever read the letters I’m sent. Unlike you, I’ve yet to have to do a formal appeal. Once insurance turns it down, my doctors office does a peer to peer review and so far always gets the decision reversed.

    My biggest advice to a new cancer patient is to grow a thick skin quickly. You are not only going through the difficulty of fighting a tough disease, you are still fighting it at a time where you have to justify your very existence.

  5. An excellent (and chilling) post. As Lori wrote above, the issue involves more than cancer patients — it affects all of us!

  6. I would be enraged, too, Janet. Helplessness in the face of injustice and stupid bureaucracy is one of the worst emotional states in my experience. There ought to be a higher court of appeal!

  7. I’m sending this on to my universal healthcare colleagues – this is criminal.
    Our sick-care non-system never fails to infuriate me!

  8. Marj Hause · · Reply

    outrage! Actually my son and many patients with Lyme Disease are facing “treatment by insurance company”. They turn down the meds that would cure him, but will fill him with opiates to treat the pain…….medical care isn’t anymore.

  9. While the conservatives rave about “death panels,” Janet has reminded us all that the true death panels are private insurance companies.

    I believe that people with chronic diseases are entitled to try any reasonable, even experimental, treatments for as long as their bodies can tolerate the treatment. If there’s a chance for people to get some relief from their diseases, they should be allowed to try. Flip side, I also believe patients have the right to move to palliative/hospice care when they feel they need it. I’m sorry your insurance company has gone clueless.

  10. Alas, there are no guarantees that single-payer government-run health insurance will improve outcomes for those who have health conditions with poor survival statistics. Inspire members who have metastatic lung cancer in other countries such as Canada and the UK have also been told they have no options. Maintenance chemotherapy drugs such as Alimta, which have been demonstrated to extend life in clinical trials, are not approved by those countries’ national health plans because the drugs are too expensive.

    1. Hello from the UK · · Reply

      Best of luck with your treatment and health.

      Just mentioning that the NHS does provide Alimta both as a first line and a maintenance drug, however it decided not to include a specific recently approved maintenance treatment in draft guidance. However this is draft guidance and it is constantly under review, which also means that this treatment will be in clinical trials in the UK, so if your doctor thinks you might respond well they can get you on them. The NHS does tend to wait a bit after a new treatment is approved before deciding to recommend it for general use and this is as much to do with a cautious approach to the results of trials as it is to the costs involved.

      Even if there were infinite money, there are always limits on resources, so some form of triage is necessary and I would rather it was calculated on available resources, available evidence and quality of life, rather than celebrity, wealth and media pressure.

      http://www.nhs.uk/medicine-guides/pages/MedicineOverview.aspx?condition=Lung%20cancers&medicine=Alimta&preparation=Alimta%20500mg%20powder%20for%20concentrate%20for%20solution%20for%20infusion%20vials

      http://www.pmlive.com/pharma_news/nice_knocks_back_lillys_alimta_in_new_setting_482934

      1. I’m so glad to hear that Alimta is available from the NHS! Do you know if crizotinib (also known as Xalkori) is available in the UK for those testing positive for the ALK translocation?

    2. It’d certainly change health outcomes for people with less complex medical situations. It’s criminal the way people go from “reasonable sickness situation that we can fix” to “you have six months to live” (I’m probably exaggerating but not by much) because regular doctor visits would have caught it and they couldn’t swing the visits.

      At least we’d be doing *something*. I dunno.

  11. I am sorry that you have had to go through this experience. As a patient with terminal brain cancer, I am always upset that in addition to battling tough diseases patients must also battle multiple systems.

    If you have already exhausted the complete appeal process at BCBSIL, you can request an independent review at the state level. Here is a link with information on those next steps:

    http://insurance.illinois.gov/ExternalReview/default.asp

    Good luck and thanks for helping make people aware of the trials and tribulations of our health care system.

  12. I’m sorry.

    I wish I had something more profound or helpful to say, but this is all I’ve got right now. I’m sorry this is happening to you. It sucks and it’s not fair.

  13. Unfortunately, the priority for insurance companies is the bottom line, not the patient. A friend told me a truly horrifying story from her brief time with an insurance carrier: her manager would congratulate her if a preemie baby died, because they wouldn’t have to pay out any more for its care. These people should have their decisions revisited on themselves, ten-fold.

  14. This painful experience is why patients are fearful of “death panels” This is certainly outrageous and counter to the new mantra “patient centered medicine”. Happy your outcome was favorable.

  15. Infuriating. This is completely unacceptable, and even worse for the people who don’t have the education, resources or doctor support to fight the decision. Thank you for giving those people a voice.

  16. Angela Squires · · Reply

    Insurance companies are right up there with the gangster banksters.

  17. […] What frosts me about this letter is that a “specialist” decided there was no urgency to get a biopsy because it wouldn’t change my “long-term health outcome.” Did he expect me to go on steroids AND chemo (both of which have a significant impact on quality of life) in case one of them MIGHT work? Or do nothing, since I’m going to die anyway? Well, here’s a news flash: we’re ALL going to die! The purpose of medicine is to keep us as healthy as possible while delaying that inevitable long-term outcome as long as possible.  read more […]

  18. Go go go! I’ve been Stage 4 — and am now cancer free — and am in a clinical trial. Grateful for doctors who remember to keep treating patients and don’t write us off. So much admiration for your for advocating for yourself. You’re in my thoughts.

  19. Hi there, as another stage iv thriver, I couldn’t agree more. I’m dealing with breast cancer and similarly might one day in the future do a bone biopsy (my Drs recommend it) to determine if the characteristics of my bone metastises have changed. In my case it’s to see if they are what’s called “Her2+”, which like you is an amplification. If I were Her2+ there are well-known medications that I could take (Herceptin being an example) that could prolong my life). And yes…it is a misnomer to call. stage Iv “terminal”. Yes, it is in the sense that we know it will likely be what takes our lives eventually, but many of us can lead fairly fully lives, work on things, travel, as you said — in fact some people dealing with stage IV breast cancer can end up living an additional 10-12 (although of course with some it’s a lot less, more like 3-5 or less–as you know, it’s complicated. Some diseases are too aggressive and unresponsive to treatment — and it’s not a matter of how much a given person ‘fights’ or whatever either. ;-) ). Anyway… I just wanted to add my support. For people in the stage iv community this “tidbit” that the “specialist” isn’t aware of is in fact everyday basic knowledge. Hehhehhe…. probably because, well, that’s why we’re here, alive, writing about it! ;-)
    Sending all my best and congrats on having NED status. Woohoo! (I’m not NED but am stable and on some helpful treatment. Just about to take a trip!).
    ….Mind you, I should note that my treatment is not currently covered by Canada’s usually great healthcare system. I had to fight tooth and nail to get it covered by my insurance, because it’s new. It’s very helpful though because it is pill form so allows more freedom in life — and it’s what has made me finally stable. If I didn’t have it I’d be on IV chemo infusions, probably weekly. It would be no fun and possibly one of my last ‘lines’ of treatment. So as another poster mentioned, many governments and insurers have not yet caught up with this new reality, that — not unlike people dealing with HIV/AIDS, many advanced cancers are becoming “chronic” diseases — but improving the quality of life or survival outcomes of people dealing with stage iv cancer is a concept that some people have not yet caught up with mentally! (although actually, the standard of care seems to be higher now for people living with HIV/AIDS, they will likely outlive people with stage IV cancer. Makes me happy, at least for them though. :-))

  20. Randall · · Reply

    I would be enraged too, Janet.

    Have you thought of creating a petition? Dozens of people have used petitions on Change.org to successfully pressure their health insurance company to cover their treatment. Here’s a couple of examples:

    https://www.change.org/petitions/united-healthcare-i-want-them-to-cover-my-husband-s-cancer-treatments

    https://www.change.org/petitions/bluecross-blueshield-north-carolina-keep-your-end-of-the-deal-and-pay-the-claims

    https://www.change.org/petitions/blue-cross-blue-shield-henry-young-needs-rehab-to-live

    1. Thanks for the idea, Randall. I’ll check out Change.org.

  21. I received a call today from BCBSIL. They have decided to overturn their denial of my appeal for this procedure. Woohoo!

  22. Judy Nill · · Reply

    That’s GREAT, Janet! Congratulations for hanging in there and fighting the system–successfully!

  23. I’m sorry for what you’re having to go through. I’m glad to see you finally got a sensible answer on this one, though you shouldn’t have had to go through the hassle and worry. One of the big problems, though, is that the US insists on calling health care funding “insurance”. It’s not insurance. Insurance is when you pay in, in advance, to a pool of similar people with the expectation that some but not all of them will experience a loss (such as from theft) and that the pool pays out to cover that loss, so that it’s spread over both time and more people rather than being concentrated on one person all at once. Health care funding is not insurance, it’s completely different, and particularly so for cancer patients with all we can do with modern techniques (up to and including ordinary lifespans for many with many conditions). No other industrialised country has a system like the US, and no other country pays so much for its healthcare with no appreciable benefits in outcomes (so far as we can tell – there’s a lot o confounds such as the worse US general lifestyle issues than most of the industrialised world). There’s lots of other ways of doing it, but none of them screw up.

  24. I suggest communication with the President to understand if these type of decisions will be made under “Obamacare”…

  25. kirsten · · Reply

    As a former Virginia Bureau of Insurance employee as well as a former LINC volunteer-I was wondering if you have tried Contacting the Illinois Department of Insurance and access their External Appeals process??? All Insurance Departments have them and anytime you are denied coverage, you can contact your local Insuarnce Department of assistance. The insurance laws and regulation however would pertain to where the policy was issued for delivery. In your case, It was issued to an employer in Illinoise hence why Illinois Insurance Department would have jurisdiction. Virginia Bureau of Insurance has External Appeals and it works great-it is a third party hired by the Bureau to review information from the treating physcian and the insursance company-a decision is made and usually it is in favor of the patinet. I supplied the link below for you-hope it helps!

    http://insurance.illinois.gov/ExternalReview/default.asp

  26. Lisa Guitron · · Reply

    Made me sick to read this ! How dare anyone put some one through this. You keep fighting, to get the treatment that you deserve. I think these insurance companies need to remember they are human too. May God Bless your ever step !

  27. Welp… I do have a giant stack of bills from both UCH and Kaiser, my insurer. I have full Medicare and full Kaiser. I don’t understand why I should have anything but a co-pay. My blood pressure goes up and I become so stressed out that I’ve not been able to tackle the tower of envelopes. My husband won’t even look at them. So maybe I’ll just let the debt collectors call until I die. Then my executor can deal with the bills!

    I feel your pain and hope this gets sorted somehow. Regardless of how healthy or energetic you (we) are right now, it’s monstrous we have to fight to get the care we deserve…

    Very best,
    Jazz

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