My last blog on the costs of drugs for the treatment of myeloma raised a number of issues for discussion, none more so than the heartfelt comment by Robert Fowler, who communicated to us his concerns about costs and the impact those costs may have on insurance for his fellow employees. Questions were also raised about the applicability of the “Value Framework” proposed by the American Society of Clinical Oncology (ASCO) to the assessment of myeloma. Can myeloma be evaluated in the same way as, let’s say, pancreatic cancer or other types of cancer? And what about the model proposed by Dr. Peter Bach at Memorial Sloan Kettering Cancer Center (MSKCC)? Is it reasonable to apply such models in a relatively simplistic and broad fashion?

A fundamental question emerged: will these systems end up harming myeloma patients by mandating suboptimal care and eliminating access to needed drugs? Individual patient value must be considered. But how do we do that?

The starting point is illustrated by a very helpful paper published in the journal Current Medical Research & Opinion, which looks at patterns of total costs for newly diagnosed and relapsed patients with myeloma. This analysis includes both out-of-pocket costs for patients, plus costs that insurers and/or medicare must pay for the drugs, diagnostic and monitoring testing, plus other costs of ongoing care.

A number of important points emerge. The initial cost of treating myeloma is $10,000 to $15,000 per month, which falls steadily in the next 18 months. The average monthly cost is around $7,000 per month for Revlimid®-based regimens and a little higher, around $10,000 per month, for bortezomib-based regimens. Only part of that is the drug costs. The monthly out-of-pocket costs for drugs that patients actually pay tends to be much lower, from $50 to a few hundred dollars. For example, one study showed that 86% of patients paid $50 to $100 per month for Revlimid as a co-pay. This pattern was confirmed and illustrated by a survey taken at the IMF’s Annual Support Group Leader (SGL) Summit in 2014.

The sobering point, however, is that this is only true in the US. Outside of the US, increasingly, the costs are incurred by the local health authority or central government, which often cannot pay, and costs are passed on to the patient. These are costs which are truly unsustainable and impact treatment selection, care, and outcomes.

A second key point for myeloma patients is that it is economically beneficial to stay in remission, despite ongoing costs of maintenance. Relapse boosts the costs back up to the starting level or maybe even higher. On the medical side, Dr. Antonio Palumbo has been making the same case for the value of continuous therapy, which prolongs both the first and second remissions (PFS1 and PFS2), as well as overall survival. Although it is obviously cheaper to be off maintenance, this appears to be a false savings. But, again outside the US, patients frequently cannot afford the costs of ongoing maintenance.

So, in the US model, why are the costs of cancer care unsustainable? Because more people are developing myeloma and other forms of cancer, and because costs of novel diagnostics and treatments are high. Quite frankly, it is hard to see how the total costs can go down, certainly in the short term. The most crucial problem is that insurers/payers are faced with too many sick people!

As NPR has reported, 5% of patients contribute to 50% of healthcare costs—and these are not myeloma patients nor even cancer drug costs, which make up only about 1% of the total healthcare budget. The bulk of costs is coming from intensive care for critically ill patients, and from chronic diseases linked to the epidemic of obesity, diabetes, and cardiovascular diseases. Autoimmune and neurologic diseases, such as Alzheimer’s, autism, depression, and neuro-psychiatric conditions are also on the rise.

The problem is—as I mentioned in my last blog—too many “ships in distress.” Very hard to insure. The answer: reduce the burden of disease. Keep Americans and people everywhere healthy! Interestingly, within the Medicare/ CMS model, where total costs are paid for, there is a motivation to have prevention strategies.

As many of you know, I am interested in longevity and staying healthy. Today my daughter Annabel gave birth to a healthy new daughter, Nola. As a result, I am very interested in ways to keep Nola, and all children, healthy and happy over the years. With this in mind, I recommend the recent book, “Brain Maker,” by neurologist Dr. David Perlmutter, who approaches disease in a whole new way and has specific recommendations about diet and activity. I am sure that attempting to stay healthy is an important part of staying in remission longer. What applies to the brain definitely applies to the body overall, and especially, as you will read in the book, to the immune system.

So what is the bottom line for myeloma patients with regard to costs? The key first step is to be aware and advocate for the best diagnostics and treatment.  The International Myeloma Working Group (IMWG) is now working on a tool to help patients do just that—a new set of guidelines that will outline recommended treatments in frontline and at relapse in terms that insurers and payers will understand. These guidelines will not be complex formulae, but simply a listing of the top options based on current levels of evidence and data. These will not be pathways based simply on upfront costs, which can result in false savings. Neither will these listings exclude recommendations based simply on costs. Having myeloma is undeniably expensive. Nonetheless, it will be clearly stated if a less expensive and perhaps more broadly accessible regimen has equivalent, or at least very good, outcomes.

The larger goal is to have fewer patients developing myeloma! Wouldn’t that be great? Maybe we can prevent patients from transitioning from MGUS to active myeloma. That is a discussion for another day.

In the meantime, stay tuned as always. 

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 am concerned that outlining 'definitive' treatment guidelines for patients and insurers might result in restricting the treatment options insurers will cover. Myeloma treatment often involves a lot of experimentation among the available options to find what works best for an individual. If RVD or RCarfilD are presented as a preferred frontline treatments, for example, for those who cannot tolerate Rev or Pomalidamide or the entire combo (there is a recent Smartpatient discussion on Rev intolerance) what will insurers pay for in that case? In the relapsed/refractory setting unusual drug combos and experimentation is especially critical as patients respond to fewer and fewer drugs.

How can you be sure that the IMWG guidelines will not, as you put it, "end up harming myeloma patients by mandating suboptimal care and eliminating access to needed drugs" by rigidifying care options that insurance companies and Medicare will cover?

Guidelines can be helpful for non-myeloma specialists and patients but to also put them out for insurance companies seems a risky proposition.

In any case, congratulations on the new granddaughter and thanks always for everything that you do for us.

Dear Nancy,

Thank you for raising this concern! It is extremely important to prioritize options, but as you emphasize to not exclude options which can be appropriate for certain patients and/or under particular circumstances. It is essential to keep all options on the table for use as needed.

Thank you for your great information of myeloma costs and drugs, for sure is very expensive to treat a patient with myeloma. At the moment we are stuck with our mother, she is detained in hospital because of bill of three hundred and thirty thousand shilling (Ksh), and we need 1.5 millions for her to continue with treatment, please help. Thank you and have good day.

Dear Sabina,

So sorry to hear about your mother’s situation. We definitely need contingency plans for these situations.

I've always been torn about the high cost of myeloma drugs. On the one hand I don't like greed. But on the other, I want there to be a huge incentive for drug companies to produce more and better myeloma drugs. By the way, Big Pharma, a cure would be worth all my worldly goods.

Dear Vicki,

Thank you for your comment. Completely agree that we do not want to stifle innovation. Also, all patients will agree that a cure will indeed be priceless!

I am so grateful that my friend Pike Reynolds who survived 18 years under the wise care of Dr S. Vincent Rajkumar introduced me to your organization and to the Fairfax, VA MM Life w Cancer Support group. You each and all are wonderful. I was diagnosed in 2011. Unfortunately IT has comeback next to the last lesion same upper arm.KEEP UP THE GOOD WORK. BLESSINGS, cddcm

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