cancer treatment

The "Middle Stage" of Cancer

 

The following excerpt is from: After You Hear It's Cancer: A Guide to Navigating the Difficult Journey Ahead, John Leifer and Lori Leifer. Rowman & Littlefield (July 2015). 

 

The Middle-Stage of Cancer:

Many patients enter a midpoint in their journey with cancer. It is what author and ovarian cancer survivor Susan Gubar defines as the “middle stage.” Writing in a June 5, 2014 article in the New York Times, Gubar stated:

For some of us, there is a middle stage in this journey. Because of advances in cancer research and the efforts of dedicated oncologists, a large population today deals with disease kept in abeyance. The cancer has returned and has been controlled, but it will never go away completely. Like me, these people cope with cancer that is treatable for some unforeseeable amount of time. Chronic cancer means you will die from it—unless you are first hit by the proverbial bus—but not now, not necessarily soon.

Allowing for disappointment while not relinquishing hope

When you hit these milestones, it is time to be kind to yourself: a time to express your disappointment without relinquishing your hope. You will be traversing a new path on your journey, but first, you must understand how the additional knowledge acquired to date about your condition impacts your staging, prognosis, and recommended treatment options. Your physician should provide this information, as well as recommended modifications to the treatment plan.

Now’s the time to take out your compass and reassess the direction you are headed. It is essential that you go through an appropriate level of due diligence with your doctor regarding the next phase(s) of treatment. Just as you inquired about efficacy, side effects, treatment duration, and other factors prior to your first course of treatment, you need to repeat the process again now. Three very important questions to consider are:

1. what are the goals of this treatment;

2. what is the likelihood it will be successful; and

3. what short-term and long-term effects may the treatment have on my quality of life? Only once you’ve completed this process can you truly provide your physician with informed consent to proceed.

Expanding the range of clinical resources

Additional physicians may join the team to help you on your journey, depending upon the type of treatment(s) being recommended. Whereas you may initially have been treated only by a surgeon, you may now want to consult with a radiation oncologist, medical oncologist, or other specialists. These physicians may be providing simultaneous interventions. It is essential that they be functioning as a well-coordinated team, since the administration of one therapeutic regimen may affect the timing, dose, or even usage of another treatment modality. For example, patients undergoing chemotherapy may have to carefully sequence their radiation treatments so they do not overwhelm their bodies and increase the probability of adverse effects.

The stakes are higher now because the first line of medical defense has failed. The chances of having a sustained response to treatment diminish, while the level of risks, side effects, and long-term consequences of therapy may be increase.

Due diligence déjà vu

Just as you asked many questions about your initial treatment, so, too, must you feel fully informed about the next steps in your journey. In addition to understanding the fundamental nature of the recommended treatment, you may also wish to ask your physicians the following questions:

  • Why might this treatment be effective when others have failed?
  • Are there other options for treatment that we should discuss?
  • What are the side effects or after-effects of treatment that I may experience?
  • Who will perform this treatment, and what are his or her qualifications for doing so?
  • Will my insurance cover the cost of this treatment?
  • Where I can learn more about this treatment before agreeing to it?

It may be helpful to then take a few days, do your own research, talk with your caregiver, and then come to the most informed decision possible. Regardless of the outcome, you will feel as though you entered this phase of treatment with a solid understanding of its probable outcome, side effects, and costs.

Five Essential Steps When First Diagnosed With Cancer

“When you hear the word ‘cancer,’ it’s as if someone took the game of Life and tossed it in the air. All the pieces go flying. The pieces land on a new board. Everything has shifted. You don’t know where to start.”  —Regina Brett[i]

A diagnosis of cancer can be overwhelming, but knowing a few basic things can help make the journey ahead far more manageable. Here are five key things you should know if you or a loved one has recently been diagnosed with cancer:

1.      It is normal to feel completely overwhelmed when you hear the word cancer. Despite the anxiety, and accompanying sense of urgency to begin treatment, you must slow down and be methodical about the next steps.

2.      Identify a caregiver who can be at your side throughout the journey ahead. Your caregiver will fill a number of important roles, including:

·         Serve as a scribe during your doctor appointments so that you have an accurate record of what transpires. This person can also be helpful in keeping other family members or loved ones informed.

·         Request copies of your records from all physicians seen related to your cancer. Be certain that the records include all imaging studies and pathology reports.

·         Help you navigate the complex health care system, while coordinating your care, as needed, across multiple physicians and treatment sites.

·         Provide essential emotional support.

·         Help you address basic functional needs at a time when many of your resources are consumed simply fighting your disease.

3.      Before you can proceed, it is essential that you understand your diagnosis, the goals of treatment, and treatment options based upon objective information presented by knowledgeable physicians.

·         Oftentimes this requires visiting multiple specialists – including surgeons, as well as medical and radiation oncologists. Since there often numerous methods for treating a disease, these specialists may render differing opinions regarding what is best for you.

·         It is important to keep in mind that specialists have an understandable predilection for the types of interventions they deliver – a surgeon may be biased towards surgical procedures just as a radiation oncologist is biased towards radiation therapy.

·         Such differing opinions can be confusing for the patient…particularly since you are now navigating in unfamiliar territory. Before making a decision about treatment, there are three things that you must know:

o   As a general rule, the treatment should be based upon a “standard of care” – meaning that there is a consensus in the medical community regarding the best method(s) for managing your disease. The National Comprehensive Cancer Network, or NCCN, publishes such standards of care, or evidence-based pathways, for many types of cancer. Consumer-friendly versions of such pathways are available for free on their web-site (www.nccn.org). You would be well-advised to review the NCCN recommendations for your disease (and stage of disease). If your doctor is recommending a treatment that appears to deviate from the standards of care, ask him or her why.

o   There are pros and cons for every treatment – both in terms of the relative effectiveness of the treatment, as well as the short-term and long-term potential side-effects. Only by understanding these nuances of treatment can you make a truly informed decision about what is right for you.

o   There may be substantial differences in the costs associated with different interventions. While we all want and deserve the best treatment available, two treatments may be virtually identical in terms of the outcomes produced, but vary dramatically in costs. Before your out-of-pocket expenses grow astronomically, you may wish to discuss the projected cost of care with your doctors. Your physician should also inform you if he or she has a financial conflict of interest whereby they will profit more from the delivery of certain types of treatment. A  urologist, for example who treats prostate cancer with a linear accelerator owned by the group has an ethical obligation to disclose this conflict to the patient.

4.      Now that you are armed with far more information about the best course of treatment for your condition, you need to decide who will deliver your care and where you will receive it. Before you put blind trust in your doctors, you need to know that not all physicians (or facilities) are created equal – in fact, there’s tremendous variance in the relative quality of care delivered by different doctors at different hospitals/clinics. Unfortunately, sorting out the good apples is not the easiest task. Here are three suggestions for improving the odds of having a highly competent medical team:

·         Learn as much as you can about your physicians’ training, and experience treating your particular disease. There’s nothing wrong with interviewing your physicians! You should be sizing up your doctor, not only in terms of clinical training/experience/competency, but also how you feel at a gut-level about having them lead you through this difficult journey.

o   Keep in mind that practice does not make perfect, but when combined with the right training and certain inherent skills, it can make a huge difference. For instance, an oncologic surgeon who, after completing a fellowship in breast cancer surgery, has been practicing for ten years at a premier facility may produce different results than a general surgeon whose most frequent procedure is repairing a hernia. Unfortunately, there is no readily available data that allows us to compare the relative competency of our physicians.

·         Consider the depth and breadth of the cancer treatment resources available at your facility of choice. Do your best to separate out the marketing hyperbole from the cold, hard facts regarding the facility’s capabilities. It’s relatively easy to go to the hospitals’ websites within your community and compare capabilities. If there is an NCI-designated Comprehensive Cancer Center in your community (which differs from an NCI-designated Community Cancer Center), and have not selected it as your provider of choice, you may wish to get a second opinion at this facility. If you have an early stage, easily treated disease, this may be less of a concern than with more advanced or difficult to treat tumors.

·         Be careful about listening to the advice of your backdoor neighbor or cousin Martha about who the best doctor in town is for your cancer. Their intentions will undoubtedly be spot on, but their knowledge may be highly flawed. Author Marty Makary, M.D., a Johns Hopkins physician, talks about Dr. Hodad – a popular physician with a wonderful bedside manner whose patients think he walks on water (HODAD turns out to be an acronym for hands of death and destruction).

 

5.      Never under-estimate the power of hope in helping get you through the journey. Though no one welcomes cancer into their life, a great many people experience tremendous growth as a result. Hope can be the force that helps you emerge on the other side…stronger, more resilient, and with a unique appreciation for the wonderful life you’ve been given.

There are many more steps to transforming an arduous journey into a manageable one. What I’ve outlined here are five of the most basic. If you would like to read more, I would strongly encourage you to read: After You Hear It’s Cancer: A Guide to Navigating the Difficult Journey Ahead.

The book is available at Amazon.com (http://www.amazon.com/After-You-Hear-Its-Cancer/dp/1442246251/ref=sr_1_3?ie=UTF8&qid=1423064996&sr=8-3&keywords=john+leifer#)  or through the publisher – Rowman & Littlefiel (https://rowman.com/ISBN/9781442246263).

 

 

I would welcome your questions or comments. Please post them by clicking on the headline of article.

 

 

 

 

[i] Regina Brett, BrainyQuote, http://www.brainyquote.com/quotes/quotes/r/reginabret586752.html.

When Cancer Drugs Are Priced Beyond the Reach of Patients

The blog post below was originally entitled, "Profits vs. Patients in the Escalating War on Cancer," and was targeted to health care professionals.  But the issue of costs -- egregiously high costs -- is having such a profound impact on cancer patients that I felt it appropriate to address it here -- where people struggling to navigate the difficult journey through cancer can read and dialogue about vitally important issues.

Something must be done to address the pharmaceutical industry's relentless profiteering on the backs of cancer patients. People must speak up and call for change.  

Please read the article below and then let me hear your thoughts about how we can address this profound issue.  

Thanks!  

John

 

Beyond the caring rhetoric carefully crafted by providers of cancer treatment and therapeutics, there exists a motivation every bit as powerful as saving lives -- reaping billions of dollars in profit. That's what is at stake in the ongoing war on cancer -- a war in which important battles have been won, but at a tremendous cost.

As the number of cancer patients grows and their treatments become increasingly expensive, we will find ourselves locked in an unwinnable war of attrition…unless reining-in costs becomes as much of a priority as expanding our medical armamentarium.  

 How the battlefield changed:

 Despite the fact that cancer incidence rates have declined for the most frequently occurring types of the disease, cancer continues to impact 40 percent of all Americans, and it is responsible for 20 percent of all deaths. That translates into 1.66 million newly diagnosed patients annually and nearly 600,000 deaths, according to the National Cancer Institute. Incidence tells only part of the story, however. More importantly, the majority of cancer patients are surviving longer.

 There are currently more than 14 million Americans who have survived cancer—a dramatic increase from the 3 million survivors in 1971. While much of this increase is attributable to population growth, improvements in cancer therapies have also played an essential role. As a result, for many patients, cancer has been transformed from a death sentence into a chronic disease that perhaps cannot be cured, but can be controlled for an extended period of time.

 The soaring costs of care:

 Fifty years ago, direct spending on cancer care equaled $1.3 billion. By 1995, spending had soared to $41.2 billion, and by 2010, it was an estimated $125 billion. That’s an almost 10,000 percent increase in direct spending over fifty years. Add in the indirect costs of care, such as lost productivity, and the numbers almost triple.

 Cancer care was not the only part of the nation’s health care bill that rose dramatically over time. In 1950, total health care costs for the U.S. equaled $12.7 billion. By 2012, those costs had risen to $2.6 trillion – a 20,000 percent increase in the span of three generations

 Such costs have taken quite a toll. Today, the single greatest cause of personal bankruptcy in America is medical bills. In fact, “The percentage of personal bankruptcies in the United States attributed to health care costs rose from 46.2% in 2001 to 69.1% in 2007.” Such statistics come as no surprise, since patients are bearing an increasing proportion of the cost burden associated with expensive treatments. Medicare beneficiaries who are often on a limited, fixed income are particularly hard hit.

 What Lies Ahead:

The estimated cost burden for the coming decades is fuzzy at best. The NIH guesstimates that the direct costs of cancer care could range anywhere from $158 billion to $207 billion. A number of factors are contributing not only to cost escalation, but also to the complexity of forecasting. 

 We know that the projected level of growth in the 65+ segment of our population—which is the segment most affected by cancer—will result in a virtual tsunami of cancer patients. What we don’t know is how these patients will be treated, or the costs of emerging therapeutic modalities.

 Furthermore, with the number of cancer survivors forecast to grow to 19 million by 2024, there will presumably be a dramatic increase in the long-term costs of controlling their disease and maintaining their well-being.

 History demonstrates that the cost of cancer does not increase linearly, but rather in a manner reminiscent of Moore’s law—a factor that proves beneficial when describing the growing power of computers, but not the growing costs of care. Nowhere is this more apparent than in the skyrocketing costs of pharmaceutical products.

 A Pharmaceutical Gold Rush

 The pharmaceutical industry has doubled-down on its investment in cancer therapeutics—a wise move, considering the increased market demand reported by industry monitor, IMS:  “The global market for oncology drugs, including those used in supportive care, reached $91 billion in 2013…this compares with $71 billion in 2008 and $37 billion a decade ago.”

 With demand soaring and sales burgeoning, much of pharmaceutical research now centers on beating cancer. IMS concluded that, “cancer therapies account for more than 30 percent of all preclinical and phase I clinical development products…”   

 It’s not just demand that is driving the soaring sales of cancer drug. It’s the manner in which drugs are priced. In the U.S., which accounts for 40 percent of all cancer drug sales, there are no governing rules regarding pricing, beyond what the market will bear. While most consumer products are priced based upon comparative value, the price of cancer therapeutics appears to be plucked from the ether with no relationship to the drug’s relative efficacy or toxicity.

 Don’t take my word for it, look at the numbers: According to an article in the Journal of Clinical Oncology, “Of the 12 anticancer drugs approved by the FDA in 2012, only three prolonged survival, two of them by less than 2 months…yet nine were priced at more than $10,000 per month.” One drug, approved for the treatment of pancreatic cancer, was shown to extend survival by a mere 10 days.

 According to an article published by the Mayo Clinic, “Last year, ipilimumab (Yervoy; Bristol-Myers Squibb, New York, NY) was approved by the Food and Drug Administration (FDA) for the treatment of metastatic melanoma. The benefit in survival over and above standard treatment was 3.7 months in previously treated patients and 2.1 months in previously untreated patients. The cost: $120,000 for 4 doses.”

 It appears that $100,000 per year has been set as the minimum threshold for introducing new cancer therapies.  But it is not just the introductory pricing of drugs that is problematic. It is also the price inflation of cancer drugs that is raising costs astronomically. The price of imatinib, a drug used to treat CML (chronic myeloid leukemia) increased from $30,000 to approximately $90,000 over a ten-year period.

 Lies, Damn Lies, and Statistics:

 The pharmaceutical industry justifies what appears to be morally egregious behavior by explaining that drug costs are primarily driven by research costs. In fact, stating that the cost of bringing a drug to market now exceeds $1 billion has become almost a mantra—but it is patently invalid.

 Pharma’s argument regarding the tremendous costs of research was effectively eviscerated in a November 15, 2013 article in the prestigious journal Cancer.  Authors Donald Light, Ph.D., and Hagop Kantarjian, M.D., demonstrated that the actual cost probably approaches $125 million or one-eighth of what has been claimed.

 You Don’t Have to Sell Drugs to Profit from Cancer:

 It’s not just pharma that is profiting from this gold rush.  Cash-strapped hospitals and health systems are lining up to ensure that cancer provides a rosy bottom line for their institutions.

 Not only are facilities expanding the depth and breadth of cancer services offered, but they are now employing oncologists at an unprecedented rate. Such employment accomplishes multiple objectives: 1) It locks in the physicians who control patient flow in the market, thus locking in market share; 2) it allows the hospitals to increase the costs of the oncologists’ services by billing them as hospital outpatient services; 3) it allows hospitals to capture all the procedural revenue—imaging, radiation, and surgery—associated with these patients; 4) it allows hospitals to increase profits on the resales of cancer drugs using what is known as “340b” pricing.

 Numerous other parties stand to profit handsomely from the growth of cancer—including, but not limited to health information technology companies that seek to capitalize on the tremendous data-demands associated with cancer research, medical technology vendors, and even manufacturers of prosthetics.

 Re-establishing equilibrium between Patients and Profits:

 Until payers realign incentives so that providers are rewarded based upon achieving the most efficient and effective patient outcomes over time, there will be an imbalance between the needs of patients and the pull of profits.

There are specific steps that can be taken today to achieve these objectives, including:

  • Physicians must act as fiduciaries for their patients’ health and well-being. As such, they must demand comparative effectiveness data that show the relative value of a cancer drug. Physicians can drive change simply through their prescribing patterns, and they must wield this power appropriately on behalf of their patients. This principle was proven effective when a group of oncologists at Memorial Sloan Kettering refused to prescribe the drug Zaltrap because it was twice as expensive as an alternative drug yet no more effective. The manufacturer bowed to the pressure and cut the price of Zaltrap by 50 percent.
  • The FDA can aid these efforts to move from “what the market will bear” pricing to value-based pricing by establishing minimal thresholds for comparative efficacy while also factoring in the comparative toxicity of drugs under consideration. .
  • There must be clear and unequivocal prohibitions on any conflicts of interest that allow physicians to profit, beyond their professional fees, for the provision of cancer therapeutics—be it a chemo agent, radiation treatments, or other modalities.
  • The Department of Justice must bring greater scrutiny to the acquisition of major oncology groups or other actions that may result in the creation of monopolies or oligopolies in cancer care.
  • Congress must reconsider the prohibitions on governmental agencies, such as Center for Medicare and Medicaid Services (CMS), from negotiating prices with pharmaceutical manufacturers.
  • As a society, we must struggle with through discussions of what we are willing to expend in order to extend life, while factoring in the patients’ probable quality of life. Discussions of “death panels” must yield to rational, albeit difficult conversations.

 The Time to Act is Now:

 Health care providers and vendors have proven that they are incapable of being self-regulating. They have also proven that they are subject to the same moral vices as the rest of society, including greed. There needs to be immediate action to stop the profiteering off the backs of cancer patients, while war of attrition, simultaneously using our health care dollars wisely in the quest to conquer cancer.

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