Myeloma Survival–How much better? and can we afford it?

Jane Brody in today’s Times talks of the improvement in survival in multiple myeloma.

She notes there has been marked improvments in survival.

My guarded optimism stems from the progress made in devising treatments for several less well-known malignancies. For many patients with cancers like chronic lymphoma, chronic myelocytic leukemia and now multiple myeloma, longevity lies in the ability of science to remain one step ahead of the malignancy by unraveling its genetic and molecular underpinnings and producing treatments tailored to counter them.

How good is good?

The analyses found a definitive overall increase in the survival of MM patients over the past decade. In particular, five-year survival increased from 28.8 to 34.7 percent, and 10-year survival increased from 11.1 to 17.4 percent. Importantly, survival increased most dramatically in the youngest age group — more than half (56.7 percent) of patients younger than 50 survived at least five years, and more than 40 percent (41.3 percent) survived at least 10 years. In real years, the average relative survival increased from four years after diagnosis in 1990-1992 to almost seven years after diagnosis in 2002-2004.

Patients age 50-59 also fared well, with approximately half (48.2 percent) surviving at least five years, and nearly a third (28.6 percent) surviving at least 10 years. However, only modest increases were seen in the age group 60-69, and virtually no improvement was seen in patients older than 70. Since about half of MM patients are diagnosed when they are 60 or older, the lack of improvement in the eldest groups is a critical finding of the research.

Medicynical note: There are two problems with Brody’s analysis. First as noted in the latter review of progress there has been “modest” improvement for those age 60-69 and no improvement in patients older than 70. FYI the median age of myeloma patients is 66 with just 2%, thankfully, under age 40. Secondly, the cost of new treatments is excessive. The treatments recommended are in the range of $50,000-$100,000/year or more for the drugs alone and multiples of $100,000 for the transplants. This in a disease in which 5 year survival has “improved” to 34%.

Yes, there has been progress but it’s been mainly limited to younger patients and is at tremendous cost. We need to find a way to be more efficient and provide better value.

20 responses to “Myeloma Survival–How much better? and can we afford it?

  1. I like your approach! An outsider could be skeptical–and the cost of treatment is very high. The good news is more progress has been made than is reflected in this article. Several novel therapy agents (Thalomid, Velcade, Revlimid) are extending median life expectancies by far more than 28%. The problem (if that is the right word) is since these drugs are so new, docs don’t have updated mortality stats–patients are living too long! Pat

    • Thanks for the comment. I agree the improvement is great, but only 34% of myeloma patients survive 5 years. The majority of patient get little or no benefit (they are aged over 60). More needs to be done and we do need to be conscious of cost.

  2. Geoff McLaughlin

    Costly, yes – but too costly? If you have the illness, 100,000 or more a year is well worth it for more living. My question as an MM patient is how we allow companies like Celgene to abuse the patient community with gross overcharging for drugs like Thalidomide (thalomid now) – their own CEO made the statement publicly that they do it because they can get away with it (essentially saying cancer patients are too quiet) ….that’s what’s really sick, and the government should absolutely step in.

    • I totally agree. Consider that that $100,000/year applies to the 60-70% of patients that don’t benefit as well and you understand the profits of these companies.

      We need patent reform as well as health care reform. Companies should be rewarded with the full patent length if they price their drug reasonably but penalized if the over price with a shortened patent length. What they are doing to health care is criminal. As I’ve noted previously it’s you money or you die. Often, sadly it’s both.

  3. As a Myeloma Warrior…I believe we need to be conscious of LIFE!!!! Myeloma patients do not sit back and wait to die…we fight and fight and we also go out and advocate and lobby for our when you are talking at what cost…to us it is any and all costs…each day , each month each miniute we get to live linger is most precious!!
    Gentle Hugs…
    Carol Westberg
    5 year plus Warrior

    • The question is how can we do sustain care in a system in which a single drug costs more than the yearly income of the average citizen.

  4. Too costly? Is it too costly if it is MY family member? Is it too costly if it is YOUR family member?
    Great advances have been made to fight this horrible disease only in the last five years. Let’s keep fighting ! My loved one is worth the cost. How about yours ?

    • There has been progress but I don’t think one would say it’s great progress when survival is just 34% at 5 years and those over 60, the majority of patients have yet to “benefit.” What’s been done is great but too costly if you don’t have insurance or $100,000 lying around or if as is often the case your insurance is inadequate.

      These expenditures are bankrupting our non-system. We spend almost twice as much as other countries per capita on health care with out twice the benefit. We need better control of costs and some concept of value. Don’t give up on medical progress but make that progress more affordable through efficiency.

  5. Michael Stephan

    Sounds like you are proposing driving a bus over MM patients. Survival rate of many cancers were once low but due to research several cancers are no longer a death sentence. Heck I can now buy a pink bucket of chicken to support a popular cancer that is highly curable than it once was. Yet money still comes in for it because it is hip to be pink.

    My 42 year old wife of two elementary age kids has been surfing the survival curve for 5 years now. Younger and younger patients are getting diagnosed. Even into their early 20’s and late teens. Are they less valuable because they lucked out with a rare cancer that is not popular to support?

    Dangerous waters we tread as a society when we socialize medicine and prioritize treatments by costs and ROI. How l;long will it be before a “Logans Run” program is initiated and Jack Kevorkian programs are legalized?

    • Regarding your wife and kids, sorry to hear of their problem, I presume we’re not talking about myeloma?

      Clearly progress has been made in cancer but when you analyze the patterns of cancer mortality the improvement has been slight and incremental. The greatest benefit has come from early diagnosis and prevention (smoking cessation). A few rare processes have had extraordinary benefit from treatment, but sadly the most common cancers–extensive colon cancer, metastatic breast cancer and metastatic lung cancer and myeloma– remain highly fatal illnesses with modest survival improvement with the current modalities of treatment.

      Insurers FYI already prioritize treatments.

      We should do everything we can for patients with disease but should the business of medicine and the profits of suppliers take priority?

      Right now insurers are denying coverage to people with cancer, raising the rates of individual policy holder with cancer to remove them from their system. Health reform corrects this–FYI this is not socialized medicine.

      • Michael Stephan

        Good debate.

        Actually yes my wife does have MM. At diagnosis survival rate was 3 yrs. @ 3 yrs it had risen to 5 yrs. Now at 5 yrs it is at 7 yrs. (Most recent stats).

        Perhaps the younger cases are also increasing the curve but Rev and Val have been a major influence. New drugs are also coming down the pike.

        She participated in Rev/Dex study (High arm), 1-SCT, Val/Dex. Now Rex/Dex again. Private insurance paid for all except the most recent treatment no questions asked. Medicare is covering the last treatment after arm wrestling her Onc.

        Going from 3 to 7 years survival rate in 5 years is pretty good in my book for MM especially on a smaller research dime compared to more popular cancers.

        Prostate cancer will hopefully advance with treatments like Electron and Proton treatments. Less invasive. Worked for my Father (Proton). Hopefully those numbers come down as these treatments become more readily available in the US.

        As a biologist, I find these advances quite exciting for mankind. Looking at where we have gone in the past 100 years, imagine what the next 100 hold for us;)

      • Your’re right this is a great discussion

        I also hope you are right and there will be great progress in the future in management of myeloma.

        This from Haematologica: “Projected 5-year relative survival for patients diagnosed in 2006–2010 below 45 years of age is 68.0%, which exceeds the most up-to-date estimates obtained from traditional cohort and period analysis by 15.5 and 7.0 percent units respectively. Ten-year relative survival projection for patients in this age group is 55.3%, exceeding the most up-to-date estimates from traditional cohort and period analysis by 19.7 and 7.4 percent units respectively. By contrast, survival projections remain much lower and hardly exceed estimates from traditional survival analysis for older patients. Patients diagnosed with multiple myeloma in 2006–2010, especially those diagnosed at younger ages, are expected to have much higher long-term survival perspectives than suggested by previously available survival statistics.”

        And this from the Leukemia and lymphoma Society: “An estimated 20,580 new cases of myeloma (11,680 men and 8,900 women) are expected to be diagnosed in the United States in 2009.” * The median age at diagnosis is 70 years of age, and it rarely occurs in people under age 45.

        If you are in this younger group you indeed have a better outlook but understand that this applies to only a tiny proportion of patients with myeloma.

        In regard to prostate cancer you should be aware that the great majority of disease is non aggressive which accounts for the exceptionally low rate of spread and fatality. If the disease is localized at diagnosis and lower grade than there is a zero fatality rate regardless of treatment modality. If it has spread and/or is high grade, the situation in a small minority of cases, local treatment with proton or electron therapy will fail as it will with surgery.

  6. If you got the fraud out of the insurance market as well as medicare, they could afford to keep people alive as long as possible. You’d be surprised how quickly doctors would stop overbilling medicare, medicaid, and ins. companies if they lost their right to ever practice medicine in this country again when caught.

  7. Cynic- While I do certainly understand your questioning of spending so much on elderly MM patients, please realize that younger and younger people are being diagnosed. The first oncologist I saw for my MM told me that he usually hoped that MM patients would just die of something else before the MM got them, but that wouldn’t work with me as I was 35 and otherwise very healthy at diagnosis.

    It is very likely the toxins in our environment are helping create more cases of MM, and at younger ages. Are you aware that MM is one of the afflictions that 9/11 responders are being diagnosed with as a result of their toxin exposure? Are their lives are worth the price?

    On another note, many of the breakthroughs in MM research and treatment that have recently been made have been via the work of the MMRF, which (I believe) is entirely privately funded. (Though I do admit they get tax breaks as a non-profit entity). In addition, the research and treatment breakthroughs they have made are rarely contained to just MM – these discoveries have been applied to patients of many other cancers.

    One last note, you correctly quote that treatments for MM cost $50,000 – $100,000 and more. However, as these treatments have become more refined, they very often lead to many years of treatment-free survival. Years, where the only medical costs for these patients are a few blood tests.

    Luckily, my MM is not bad enough to need any treatment yet, but thanks to research, I know that there are options, and I also know what I can do now, regarding my lifestyle, so that I can hopefully avoid treatment for as long as possible.

    • Thanks for the note and I’m glad you are doing so well. Myeloma is devastating disease which as you note can occur in younger patients and these patients do seem to get great benefit from treatment. This however, is not a new phenomenon, as the course of the disease ranges from indolent to very aggressive and this has always has been so. If you are fortunate you’ll have the better behaved disease for which therapy, even old line approaches, work. I wish you continued success.

      Many people however, have disease that is not so well behaved and are treated sequentially with several lines of therapy often with little respite from the inexorable course of the disease. Unfortunately this is the situation for the majority of elderly patients.

  8. I’m 68 and have passed the five year survival rate for MM. So now lets just kill off the elderly? Yet billions are being spent on Breast Cancer and everytime you turn around someone is shoving a pink bucket or cause in your face for a cancer that is highly curable. It is only the ignorant that die from Breast Cancer. Too many people make assumptions for which they know nothing about. I do agree the drug companies like Celgene are taking advantage of seriously ill patients and making their stockholders rich by robbing these unfortunate people.

    • Nice to hear you are doing well.

      Celgene isn’t the only company or the worst. PHarma companies price drugs not by the cost of development but by the seriousness of the illness. These companies spend more on marketing, TV ads, doctors advertising etc than on research. Their profits put them near the top of Fortune 500 companies. They seem to figure the sicker you are the more they can charge.

      the U.S. leads the world in bankruptcy related to medical debt. Yes I know companies need an incentive to search for new drugs but health care needs to be different and there needs to be a countervailing force to hold pricing in line.

  9. “We need to find a way to be more efficient and provide better value.”

    I find your view to be intriguing. How do you define “value” in this instance?

    • I’m not sure to what instance you refer.

      In our country health costs including insurance premiums have increased at a rate several times that of incomes. Actually over the last 10 years incomes have declined while health costs increased 130%. Something has gone wrong with health care, there is no superego governing expenses. Certainly, part of the problem is that insurance has been a double edges sword, facilitating access to care but also buffering patients from costs. Something is obviously wrong. Compared with other countries we pay 1 and a half to two times as much per capita for health care. Our outcomes are fine but our costs out of line.

      Conservative and liberals all agree we spend too much on care and that the trend can’t continue. More here:

      • You have a great blog here. Been looking for something such as this for a while.

        The LA Times comparison re: healthcare costs as a percentage of GDP is meaningful only if we are comparing the identical outcomes of those costs or the “value” received.

        Value is a term easily used, but it has many meanings. For example, financial cost is one. So is quality of life. So is longevity. Which is used in the Times article? Wasn’t clear to me.

        For example, the “Percentage of GDP” between Sweden and the US compares a society with roughly 8 million people in a realtively geographically concentrated area versus nearly 300 million in a much larger geography. Can Sweden supply healthcare with a much lower amount of capital infrastructure? Would this reduce a given level of GDP required to deliver concommitant level of servic? I can make an argument that it will. So the comparison would be irrelevant.

        Re: efficiency. Let’s assume efficiency is the achievement of the greatest value for a given percentage of dollars and value is longevity of the patient’s life. Set aside quality of life at this time.

        To assume that a centrally-planned government bureaucracy will deliver more efficiency than a free-market organization defies objective study.

        Neither will central planning address the cost issues in the US healthcare industry. There are several price-control powers enacted in the new bill. Not just drugs, but many more subtle ones. Never have price contols reduced prices over time. They increase the price of a given product or remove it from the open market, driving trade underground or to other more open markets. The Canadian governor who recently came to FL for a heart procedure is one example. Prior to Roe vs. Wade, illegal abortion procedure were a second.

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