The Supreme Court decision issued today means that the Affordable Care Act (ACA) is not derailed, and 6.5 million Americans do not drop off the benefit rolls. This is certainly good and helpful news, but does not alter the fact that our healthcare system is still in crisis mode. The continued rising costs of cancer drugs—the focus of several recent publications—one by the American Society of Clinical Oncology (ASCO,) commented upon in the New York Times by Andrew Pollack, and the other by a team from the University of Texas MD Anderson Cancer Center, which have been critically evaluating the justification for higher drug costs. Complex formulae are being used to create a “value framework,” which serves only to make it harder and harder to both understand what is going on and to come up with sensible answers.

One number that keeps coming up in the calculations is the dollar value of human life for one year: currently listed at $50 – $100,000, with $50,000 being the number listed in most studies. So what does this very harsh statistic mean? It is the focus of the review system called “NICE” in the UK (National Institute for Care and Excellence), in which the cost of a cancer treatment is weighed against the idea that cancer patients could get back to work with quality of life sufficient to contribute $50,000 annually to the economy. For me, this is truly extraordinary! Is our moral compass completely shattered? Do you need to have the ability to go back to work to be worthy of treatment?

I feel like we need to have “Mr. Smith Goes Back to Washington” and do some simple math. If, as indicated by ASCO, Velcade costs approximately $7,000/month as part of a triple therapy (VMP was used as a model versus MP, which costs $279/month), how does that fit into the family budget? The simple answer is that an extra $5,000 - $10,000/month expenditure does not fit into anyone’s family budget. It is “covered by insurance” is the pat answer. But, health insurance is starting to look like Lloyd’s of London which insure ships at sea. When all the ships go down, it is a problem!

The cost of medical care is no longer an episodic thing. It is an ongoing cost. And there are all kinds of rising costs, ranging from establishing electronic record systems (hugely expensive, costing billions of dollars) to diagnostics such as new scans and imaging (MRI, PET/CT, etc.) to the costs of novel therapies and stem cell transplants. I could go on.

The issue is that ultimately the costs have to be realistic or the system just breaks, as it has broken right now. Money has to come from somewhere. Mr. Smith needs to be able to add up the family budget on the back side of an envelope and still be on the positive side.

Bringing everyone to the table is the only way forward. My requirement is that we put the moral compass back in the center of the table. Health is not a luxury. It is what is provided to citizens in a civilized society. We have the ability to do research, come up with new treatments, and have patients get the treatment they need and leave the table happy – but with everyone giving something so that the budget on the back of the envelope can be balanced.

Will this be easy? No! I realize that these days Mr. Smith would have to juggle quite a few envelopes. One envelope would say “healthcare,” but others would say perhaps “climate change costs” or “the costs of taking trans fats out of the diet,” which, according to New York Times editorial writer Mark Bittman, will cost the “food industry” $6 billion per year. So the “food industry” is given a three-year reprieve. There are so many issues to grapple with.

But the IMF and the International Myeloma Working Group (IMWG) are committed to moving forward on this issue. The topic was the focus of several discussions at the recent IMWG Summit in Vienna and follow-up meetings are planned for this year.

So stay tuned! We are committed to making progress in this area.

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.

 

Comments

I was diagnosed with multiple myeloma in October, 2003. I became a participant of the SWAG clinical trial that included induction therapy with Thal & Dex followed by two tandem autologous transplants and maintenance therapy with Thalidomide. During the induction therapy the daily dose of thalidomide was increasing and even reached 400 mg a day. During the maintenance therapy I was taking 50 mg every other day and currently I am taking 50 mg every day. From the beginning Thalidomide worked very well for me. After the transplants I am in a good partial remission. The reason I decided to mention all this is that Thalidomide became a real miracle drug for me. But one thing about it bothers me. In 2003 when I started taking it price of one 50 mg capsule was $20, now in 2015 it is more than $180. Fortunately I am employed and have a good health insurance through my employer and it covers a big portion of the drug cost, which now reaches $60,000 a year. And this is not for a new drug! I hope the discussion we have here will bring a real change to the situation of practically uncontrollable rise of prices for drugs that are vital for patients.

When I discovered this blog post by Dr. Durie today, I had just spent a number of hours over the last few days trying to imagine what my Multiple Myeloma treatments might cost me when I retire in 2-3 years and go on Medicare Part D drug coverage. I have taken Revlimid for the past six years, and currently the medical insurance provided by my employer is paying $10,000 for this drug every 28 days. Over the course of twelve months this works out to be about $130,000. Over six years, my insurance company has probably paid over $600,000 for Revlimid, easily. This does not include the cost of a stem cell transplant in 2009, the cost of expensive lab tests every three months, the occasional X-ray, CT Scan or MRI, etc. Surely no one would deny that this is an obscene amount of money!

A lot will surely change in the treatment of Myeloma and in the operation of insurance companies over the next 2-3 years, so I know there's no way to anticipate precisely what expenses I will face when I retire and plunge into Medicare Part D, but I'm deeply concerned. I am heartened to know that Dr. Durie and the IMF are facing this issue squarely. Please continue to do so!

Thank you, and best wishes,

Bob Fowler

Thank you so much for your detailed comment. Your personal story really emphasizes the reality of the current financial situation and the concerns of so many patients.

Dear Dr. Durie,

Thank YOU for taking on the matter of costs so directly. For sure, my situation with the expense of six+ years of Revlimid is a classic case of how MM treatment can quickly soar in cost to astronomical heights, so I felt I had to share my circumstances. Then I opened your latest blog entry tonight and saw my name in the first few lines! I will confess to being a little nervous about 'going public' with this information, but the reality of the situation must be made known if it is ever to be improved.

I received my MM diagnosis in March 2006, and I have received excellent care at the Cleveland Clinic. I shared these last two blog entries of yours with my MM team: Dr Frederic Reu, and my two nurse practitioners, Beth Faiman and Kim Hamilton. I am lucky to live within 40 minutes of the Cleveland Clinic, so when I do retire and go on Medicare Part D, I will no doubt have their assistance in navigating the Medicare system. We are blessed to have excellent medical and other support services available here in northeast Ohio.

Thanks and all the best to you in your work!

Bob Fowler

Dear Dr. Durie,

I am very thankful to you for this article. I really appreciate your insight into balancing the system with reasonable priced cancer drugs. I myself being a MM patient am very fortunate to have a good insurance from my work but I certainly feel for my fellow patients who have difficulty or other challenges financially. I hope this effort goes successfully and hope that the system gets some balanced results to benefit everyone.

Sincerely
Mohammed Siddiqui

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