The heated discussions about a report on the value of myeloma drugs issued by the Institute of Clinical and Economic Review (ICER) have brought into focus the pricing of a year of life. New York Times blogger Susan Gubar, diagnosed with cancer in 2008, has faced the challenges of paying for her treatments and care. Despite an excellent job and good benefits, she learned the hard way about the “financial toxicity of cancer treatments.” She was shocked to discover that the value of one year of her life was between $50,000 and $150,000, as discussed in a New England Journal of Medicine article, “Updating Cost-Effectiveness.” This is the value of a QALY: quality adjusted life-year.

But where do such numbers come from? In the UK, the review body NICE (the National Institute for Health and Care Excellence) looks at the ability of someone to recover from treatments, get back to work, and contribute to the British economy. The idea is that treatment is worthwhile if you can return to work! But what if you are the typical retired myeloma patient? What calculations are valid in that situation? At this point, it is clear the methods are crazy!

Limitations of insurance coverage

As pointed out by Susan Gubar, if you have a good job and health insurance, you should be fine – but you are not! The costs are too high and insurance does not cover the costs. Average out-of-pocket costs can run into thousands of dollars.

This reminds me of buying my first house. It was a stretch, and initially, the payments were difficult. But a few years later, we had a house which we were able to sell and move on. With healthcare, you pay insurance your whole life, you get sick, and the insurance does not cover the costs. What kind of a system is that?

So why doesn't health insurance work like a home mortgage? Why don't you have full coverage after a lifetime of premiums? The main reason is that all those years when you were NOT sick, the premiums were used to cover costs for people who were sick! By the time you get sick, your premiums are long gone, prices have skyrocketed, and now you have a flood of bills and co-pays. The current health care system can survive only if young and healthy people are included to provide premiums for sick people. As more people get sick, and prices keep going up, the system is overwhelmed and broken.

Even with supplemental coverage and/or substantial wealth, the costs are challenging, and, at the other end of the scale, there is what is called “material hardship” and even financial ruin. And that is not to mention the emotional distress, as Susan Gubar points out.

Cost-effective therapies

In the ICER report, all the therapies cited cost more than the magical commonly-cited “$50,000 - $150,000” threshold per QALY. The most cost-effective, according to the report, is panobinostat/bortezomib/dexamethasone, which can work well, but was initially rejected by the US Food and Drug Administration’s Oncologic Drugs Advisory Committee (ODAC) because of toxicity concerns in the face of modest efficacy. More widely used and clearly more effective therapies cost more, with the most expensive three-drug combination listed at $434,000 per QALY.

So, all therapies are above the artificial cap level based upon speculations about being a wage earner or perhaps contributing to the economy as a retiree. All therapies are also more than insurance companies are willing to pay and more than Medicare can or will cover.

What doctors and patients can do

Can myeloma doctors and patients do anything? The IMF’s International Myeloma Working Group (IMWG) is conducting a new session at this year’s IMWG Summit meeting in Copenhagen to address cost concerns in a new way. The best therapies will be identified for each phase of the disease, from frontline therapy to refractory relapse. In each situation, if a cheaper option provides an equal outcome, this will be recommended as the choice for use a majority (say 70-80%) of the time. However, there will always be other choices which can be needed or preferred based upon disease characteristics (such as high risk), co-morbidities and age, or patient/treating physician preferences.

These are only stop-gap measures. True solutions will take time. Patients should look for every opportunity to advocate for change. With each passing day, month, and year, patients are increasingly facing the enormous challenges of becoming sick in America. They face both financial difficulties and the enormous stress of gaining access to drugs/testing/treatments that they desperately need.

There must be true compassion to help those in need, knowing that each one of us may face the same challenges in coming years. At the level of regulators and government agencies, the compassion must translate into actions which can start to save lives. We are all waiting.

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

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