Dear Congress: Please Consider Lifetime Caps and Pre-Existing Conditions Carefully

Dear Congress:
Some voters say they don’t want the government or insurance companies to spend THEIR money on other people’s healthcare.  They think repealing the Affordable Care Act will fix all their healthcare problems.
They probably are not aware that “other people” will likely include them or someone they love at some point.  All of us risk the ravages of accidents, illness, and age, and 39% of US citizens will get cancer in their lifetimes (per the NCI’s current SEER data).
Before the ACA was implemented, cancer was a “pre-existing” condition that prevented anyone who’d had it from obtaining health insurance, and most healthcare plans had “lifetime caps” on how much they would spend on individuals.  My exceptionally great employer-provided health plan’s lifetime cap was $250,000 before the ACA.
My insurance company was billed more than $250,000 during my very first year of advanced lung cancer (I was diagnosed May 2011).
If the lifetime cap and pre-existing conditions clauses were in place last year, I would have lost my health insurance, and likely would have no option to buy more. I would have been responsible for paying about $98,000 in 2016 alone in billed healthcare services and treatments (assuming I could still get my targeted therapy cancer drug free through a clinical trial). That’s despite not having other major health issues last year, like hospitalization for pneumonia or cancer treatment side effects.

I know the ACA is not perfect. I applaud any effort that will improve healthcare coverage in the US.  But repealing the ACA without a suitable replacement is not going to solve our health care crisis.

If you allow pre-existing conditions and lifetime caps to be reinstated, you will be forcing an estimated 14,140,254 cancer patients to choose between bankrupting their families, or foregoing treatment (and probably dying).

One of those people will be your constituent … or even someone you love.
Please consider your healthcare options carefully.  The life you save may be your own.  A six-figure salary is peanuts compared to cancer treatment.

Pondering Resources for Affordable Healthcare

I’ve been thinking about the US healthcare system thanks to a fascinating Facebook discussion with other Stanford Medicine X epatients.  Each of us are too familiar with the strengths and weaknesses of the US healthcare system and its mix of insurers: Medicare, employers, and private insurance companies.

My focus is this:  whatever healthcare system we decide to have in the US, we need to be able to pay for it.  The reality is that healthcare resources are not unlimited.

Whether or not a healthcare system is government run and/or devoted to serving the good of all people, the resources required to operate the healthcare system are driven by a free market.  Governments and nonprofits fund only a small percentage of healthcare research and development.  Healthcare providers still choose what type of work they want to do and where they want to live in order to enjoy life and perhaps support a family.  For-profit companies still choose when and how to develop and manufacture drugs and technology, which are required to provide treatment and services. The government can’t afford to fund and/or control all these resources completely (even if some think it should).

Even if healthcare were universally acknowledged (and it isn’t) to be a basic human right, any comprehensive healthcare system will still have to ration healthcare services such as time with providers, technology, and treatments.  As a metastatic cancer patient, I am acutely aware of the rising cost of cancer care.  The drug keeping me alive would cost about $10,000 per month if I weren’t getting it free in a clinical trial.  Even if we acknowledge that everyone deserves to receive the treatments they need, we simply can’t afford to treat everyone with leading edge medical care at those prices.

A good example of this quandary is the new drug Sovaldi, which offers a breakthrough and long-awaited cure for Hepatitis C.    More than 3.2 million people are chronically infected with hepatitis C virus in the US.  A cure with Sovaldi currently costs about $84,000 per person.  A little math shows curing all the US patients would cost around $270 billion–and the cure is not permanent (people can get reinfected with the virus). Having health insurance cover that $270 billion could break the healthcare system and put premiums out of reach for many, no matter whether the system is structured as private pay, single payer (government health system), or a mixture of the two. So who gets the treatment?

Other countries with single payer, government-funded health plans solve this problem by limiting services they cover.  For instance, the National Health Service in the UK will not pay for the lung cancer drug, crizotinib (approximately $10k/mo), even though the drug can give a small population of lung cancer patients years of quality time.  When the government must consider how to use its resources to provide the best care for the nation as a whole, they decided the cost to keep that small group of cancer patients alive for only a year or two is too high.  So people who can afford crizotinib in the UK pay privately, creating a two-tiered health system.

You can’t duck the issue by simply saying, “Get rid of the gatekeeper insurance companies.”  Because healthcare resources are limited, and provided by a market economy, SOMEONE or SOMETHING is going to be the gatekeeper.  Who should it be?  Insurance companies? Government?  Healthcare providers?  Medical societies? Pharmaceutical companies?  Companies that manufacture generic drugs?  Research institutions?  Individuals?

To me, the most important questions are these:

1. What guidelines should our healthcare system use to determine who gets healthcare, so that everyone is treated in the same fair and ethical manner?

2. Who gets to make and enforce those decisions?

You might want to learn more about these questions.  The next person who declares bankruptcy due to a health crisis such as a heart attack or metastatic cancer may be you.  Or your child.

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?