The High Cost of Terminal Illness: Big Pharma Cashes In on Hope

As Obamacare continues to implode, issues with our healthcare system continue to expand.  We are fortunate in the United States to have access to the best technologies in the world.  We also spend more of our GDP on healthcare than any other industrialized nation in the world.  Although the ACA does address insurance costs (by passing on high prices to the young and healthy) as well as access (by providing access to care for all Americans even with pre existing conditions) it does NOT address the escalating cost of drugs and medical devices.  I believe that the lack of regulation of the pharmaceutical industry and the prices that they are allowed to set on newly developed drugs is yet another (in the very long list) of major flaws in the legislation.

This week in the New York Times, I was troubled by a story touting the release and FDA approval of a new drug for the treatment of a particular type of aggressive blood cancer known as mantle cell lymphoma.  Mantle cell carcinoma has a very poor prognosis and is very difficult to treat.  This new drug has been shown to help treat the disease but offers no cure.  Most patient who start therapy with the drug see 1.5 years of good results but then no longer respond.  For cancer patients time is everything–however the issue with this particular drug is the shiny new price tag–$120K annually.  According to analysts the drug could be worth nearly 6 billion in annual sales for Johnson & Johnson and their drug-making partners Pharmacyclics Inc.  The drug is expected to also be approved to treat a common cancer in elderly people known as CLL or chronic lymphocytic leukemia which will expand its indications to an even more common and larger group of patients.

 Doctors who specialize in the treatment of cancers are concerned about the astronomical prices.  Certainly, they are excited to have another treatment option (especially a new one that comes in pill form) but they are surprised at the cost of therapy.  The new therapy has been shown to be superior to current therapy in clinical trials–however the new drug does not offer a cure.  The company supplying the product argues that the cost of the new therapy “is in line with other new drugs for cancer”.  It seems to me that for pharmaceutical makers the cost is based on what the market will bear–given no limits for cost, they are free to charge whatever they like.  It is disturbing that those that make potentially life changing (and potentially life extending) therapies profit from the hopelessness and desperation of those suffering with a terminal illness such as rare and advanced cancers.  To me, it is reminiscent of the carpetbaggers after the Civil War. 

Why is it that physician payments are dictated by bureaucrats–Medicare, Medicaid, CMS and the insurance companies?  Why is it that hospital reimbursement  is dictated by the same?   In the same breath, politicians and others allow pharmaceutical makers to dictate their own terms as to the cost of their product.  Are there hands reaching into deep pockets?

At some point as providers of healthcare we must step in and advocate for our patients and loudly exclaim… “ENOUGH”.

As evidenced by a recent change in the law in the state of Maine, medical consumers are beginning to take matters into their own hands.  In landmark legislation, Maine recently legalized the import of prescription drugs from pharmacies outside the US.  As I discussed on Fox Business recently with Melissa Francis, there are inherent risks with obtaining prescription drugs from pharmacies outside of the FDA’s jurisdiction–there may be impurities and the quantities of the active compound may vary.  However, I believe that competition from outside the US is the only thing that will ultimately bring drug prices in the US back within sight.  Big pharma will argue that the cost of research and development requires a high price tag–however, I do not believe that the US consumer must foot the entire bill.

We MUST continue to innovate and produce novel, more effective therapies.  It is essential that we support our pharmaceutical industry colleagues in the research and development of new technologies through participating in clinical trials and examination of outcomes data.  However, we must stop short of providing big pharma with  a blank check to charge whatever they like for newly developed drugs.  I am opposed to big government and more regulation in general–but something must be done to control drug cost.  Maybe the answer lies in the beauty of the great state of Maine.  Maybe if we allow a little competition from the outside, prices may fall and ultimately more patients will have access to potentially life saving drug therapy and hope will not cost a life’s savings anymore.

800px-A_beach_in_maine_on_a_clear_day

20 responses to “The High Cost of Terminal Illness: Big Pharma Cashes In on Hope

  1. Very well stated Dr. Campbell. Hope this is widely circulated.

    Paul Berlin

  2. Thank you for the great article and for standing up against the big pharm companies!!

  3. I would remind the good doctor that in the 90’s Pfizer stopped developing new antibiotics that would overcome the increasing resistance to existing antibiotics. The result – infections that we cannot cure. The National Institute of Health Hospital was, at one point, close to closing down as patient after patient acquired an infection that was incurable using known antibiotics. Some people survived the infection; some did not. Pfizer made a business decision to stop developing new antibiotics because of the limited market for them.. We need to be careful how we approach price controls lest we lose the very technologies we are so proud of.

    • Ms Whitbeck
      Thanks so much for reading my blog and for your thoughtful response. I certainly recognize the importance of developing new technologies such as life saving cancer drugs and antibiotics but we cannot continue to elevate the price tag–it is unsustainable. At some point there must be some cap. The US cannot single handedly fund the R and D efforts of pharma and the medical device industry forever. Profits are important–I get that–but profits with compassion for the very patients we strive to help are paramount.
      Best
      Kevin

  4. This is an excellent synthesis of some of the key issues that contribute to the ever-increasing cost of healthcare in the US. The most urgent change we need to resuscitate our healthcare system is to remove insurance companies, pharmaceutical companies, and attorneys from the clinician’s exam room.

    • Ms Chrvala
      Thanks so much for taking the time to both read and comment on my blog. Your points concerning our healthcare system are spot on! Unfortunately, the ACA does NOTHING to address these issues.
      Best
      Kevin

  5. To put it in perspective, oncology hospital stays cost $20B per year, and oncologists collectively cost the system $3B+. Yet neither of these are creating new avenues for cancer patients, only maintaining status quo. Why pin all the blame on pharma? Allowing imports like Maine is simply stupidly risky – that’s why FDA is there.

    The better point to be made is that the elasticity of lifespan with these new oncology treatments is marginal for the price, and those health care dollars are much better spent on prevention for the young and health maintenance in the 40 – 60 y.o. set. At some point you have to say goodbye to an 80+ year-old grandpa with prostate cancer and let him go in peace. A young 35 y.o. woman with breast cancer, young kids, and a long life ahead of her – by all means let’s take extraordinary measures. Mantle cell carcinoma patient presenting in their 60’s? Let’s talk about the benefit that warrants the expense.

    • Mr Grant
      Thanks so much for taking the time to respond to my blog. You make some very valid points in your commentary–specifically allocation of resources. I agree that using expensive drugs in elderly patients or in cases with very rare cancers makes little financial sense. However, when we begin rationing care, we open up another Pandora’s box. I certainly do believe that Pharma bears a great deal of the responsibility for the high prices of healthcare but I do agree with you that there are many other factors involved as well. As for the FDA, the agency is not always consistent in the way in which they approve or disapprove drugs and devices. Boards of “Physician Experts” are frequently convened to review new drugs for the FDA and many times the FDA will move in the opposite way in which the Expert panel recommends. I think that for the FDA to become more effective there must be more science and less politics involved.

      I think that unless Pharma regulates themselves competition from non US producers will be commonplace in 5 years.

      Best
      Kevin

    • Thank you Mr. Grant!
      The better point to be made is that the elasticity of lifespan with these new oncology treatments is marginal for the price, and those health care dollars are much better spent on prevention for the young and health maintenance in the 40 – 60 y.o. set. At some point you have to say goodbye to an 80+ year-old grandpa with prostate cancer and let him go in peace – Exactly!

      As an almost 70 year old with indolent lobular breast cancer who has refused standard treatments and spent the three years since dx ENJOYING life instead of becoming a professional patient, I think each of us has responsibility to make this decision SOONER than later in our lives. I have always said that I wanted a natural death without medical intervention other than palliative care, but I have had to fight the cultural and medical biases that push for more aggressive treatment and even label those of us who refuse to engage in the cancer “battle” as cowards!
      The problem is greed on the part of big pharma AND patients who demand treatment to extend their lives without considering the quality or cost! Medicare enables this behavior by paying for aggressive treatments while not even covering most palliative care! They will pay for a double mastectomy, chemo and radiation but won’t pay for a once a month
      massage@#$%

  6. Thank you for another well targeted discussion on health care. While I agree that externally imposed rationing is a bad direction to take, personal rationing is another matter. I am 70 years old. I am in good health and expect many more years to come. I recently had a operation to remove a runaway parathyroid gland. I am on medicare (Not by choice) with a secondary insurance policy. I have not nor will I ever know the cost of that operation unless I specifically request and pay for a copy of the bill from the doctor, hospital, etc. Without this knowledge, I have no way to value the services rendered. The same is true for many, if most, older people. They never see the bill so, to them, there is no cost for treatment. If there is no cost for treatment then there is no reason not to go forward with whatever the doctor says might offer another 3 months, etc. I for one would and have refused treatment based on lack of benefit, and I would never agree to pay $120,000 per year for a treatment that might extend my life a painful 3 months or so. I think many others feel this same way, but until everyone gets to see the price and the benefits/side effects of treatment before the fact, there is no way for that decision process to take place. I think if the prices were available in a meaningful way at the time the decision to proceed was made, there would be a lot less profit in the mega cancer drugs like the one you describe.

    • Mr Segers
      Thanks so much for commenting on my blog. I think that you are spot on. Doctors need to have realistic discussions with families and patients and allow them to make informed decisions about treatments and end of life care. Transparency of cost is a critical factor that needs to be included.
      Best
      Kevin

    • Jerry Segers, You are “spot on” – if individual patients do not have the information to do a cost/benefit analysis they will continue to follow “Doctor’s orders” that are often self serving recommendations for expensive and profitable (for doctors and pharma) treatments.

  7. W.T. "Bill" McKibben

    The elephant in the room is the Congressional restriction preventing Medicare/Medicaid from negotiating pricing with Pharma. Maine’s legislation was not triggered by some far off entity, they want to be able to import from Canada. Canada (a nation with about the same number of people as California) negotiates with Pharma and they get significantly lower prices.

    But even that doesn’t tell the story, The Pharma claim that it costs $1.2 billion on average to bring a new product to market is pure fiction. A recent study makes it more like $100 million. The rest is fluff and marketing costs.

    While the ACA is far from perfect, it’s good to note that it is miles better than what we have. All the lies and distortions put forth by its opponents are not likely to succeed. In time it can be improved.

    None of this addresses the issue of end-of-life costs. The horrors people go through to add a few years, months, days to their lives are the worst way to die. Shame on Pharma, shame on clinicians who are unwilling to offer their patients the realistic choices: “A few months to say goodbye or twice that many living a preview of hell.”

    • Mr McKibben
      Thanks for taking time out of your day to read and thoughtfully respond to my blog. Your comments concerning end of life costs are a critical piece of the new healthcare reform puzzle. Doctors need to do more to educate patients about the implications of their treatment choices.
      Best
      Kevin

  8. The immense problem(s) are based on capitalism, weak government regulation, and lack of common sense welfare for citizens. The FDA is no longer the depository of citizens’ trust. The US is in no-man’s land where affordable and accountable healthcare is concerned. What happened to “do no harm”?

  9. Pingback: Morning Break: Murthy for Surgeon General, VA Malpractice $$ | Medical Device Articles

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