How Can We Accelerate Cancer Research with Online Education and Social Media? – September 26

By Dr. H. Jack West

We are in the midst of a remarkable transitional time in cancer care that is exciting but challenging, since we now have patients divided into smaller and smaller groups based on molecular markers.  Along with that, more and more patients and caregivers are participating in social media and online discussion groups.  What are the implications for these changes, and how can we use them to accelerate the pace of clinical research?  I’d like to focus on a couple of key questions for our next lung cancer tweetchat on September 26, at 8 PM Eastern, 5 PM Pacific.

1) What are leading barriers to clinical research? Which ones might be addressed by connecting members of the lung cancer community online?

2) Can patients & caregivers share data, e.g., Patients Like Me, to  facilitate better understanding & generate more interest from pharma companies in studying lung cancer patient groups (potentially narrow ones like those with ROS-1 rearrangements)?

3) Can we lower barriers by making it easier for patients to learn about & travel to participate in trials? Share air miles to help people travel for trials? Offer housing as a network? Telemedicine visits to minimize travel?

I sincerely hope we haven’t reached the pinnacle of our efficiency in cancer research, because it’s a frustratingly, even maddeningly slow process. So what other ideas do you have? Your ideas could lead to a faster pace for the trials that lead to new treatments in lung cancer.

Can Lung Cancer Be Over-treated? – September 5

By Dr. H. Jack West

The concept of “over-treatment” of lung cancer may sound heretical to some here, as it is unquestionably a fearsome cancer. Nevertheless, it’s important to recognize that cancers can range from quite indolent to virulently aggressive and that some forms may be so minimally threatening that treatment may be worse than the disease.  We’ve certainly recognized this about several other cancers, like prostate cancer and chronic lymphocytic leukemia (CLL), which medical students are taught are diseases that most people “die with but not of” because they typically follow a natural history that extends out decades.  More recently, much of the debate about mammography screening in breast cancer has centered around the concern that too many of the detected cancers are extremely indolent “ductal carcinoma in situ” (DCIS), a pre-malignant version of a more threatening cancer, and that the escalation of larger numbers of breast cancer and some others, such as many PSA-detected prostate cancers, may represent a misguided and potentially even financially driven overzealous effort to treat people who don’t need it, raising costs and posing unacceptable risks to patients that aren’t balanced by a real risk from the disease.

Dr. Otis Brawley, the Chief Medical Officer of the American Cancer Society, has even written a highly regarded but invariably contentious book about rampant over-treatment of cancer and the inherent profit motive that feeds this strategy.  And there is a lot of discussion about re-naming some diseases currently defined as a form as a cancer into IDLE (indolent lesions of epithelial origin) lesions in order to discourage them from being over-treated just because they have a name that includes the term “cancer” or “carcinoma”.

Lung cancer is arguably different, since it’s the undisputed leading cause of cancer death in the US  (28%) — no other cancer even comes close.  Is overtreatment of such a terrifying threat really a realistic concern?  We’ll discuss this in our next lung cancer social media (#lcsm) community tweet chat Thursday, September 5th, at 8 PM Eastern, 5 PM Pacific.

Specifically, we’ll start with the question of whether health care practitioners, patients, and caregivers really accept that there can be such a thing as overtreatment of a cancer that accounts for 150,000 or more deaths in the US each year.  Do doctors treating lung cancer see patterns that lead them to be concerned that we’re detecting too many indolent cancers that are resected even when they pose little or no threat? Are patients getting chemo or radiation or other treatments for even potentially advanced lung cancer that may progress so slowly that we could do as well or better by treating less?  Are patients comfortable considering the idea of just watching nodules that might be cancer, or leaving in a biopsy proven cancer that has grown only 1 mm over 2 years, even if a surgeon suggests it’s not clearly necessary to treat it?  What are the forms in which we may see over-treatment of cancer, if we can agree that there is some merit to the concept? Or are we not good enough yet at differentiating indolent from aggressive cancer that the only safe way to treat a lung cancer is to mount the most aggressive attack possible?

We’ll then turn to some of the incentives that might lead to a trend toward overtreatment.  We have a fee for service system in the US. Are doctors incentivized to do surgery when it might not be indicated, or to give chemo for an indolent or extensively treated advanced lung cancer, in part or largely because it pays to do so? Are marketing messages and perhaps even mass media feeding a frenzy that more is almost always better, even if unproven? Is it largely stemming from anxiety among patients, so that doctors might feel (as is rather often expressed) “they expect (or demand) this treatment, and if they don’t get it from me, they’re just going to go to the next doctor to get it.”

Should we be concerned that an evidence-based broader use of lung cancer screening will lead to far more non-threatening lung nodules being detected, or that we’ll see expensive new cancer treatments used in settings for which there is little or no evidence to support them?

We hope you’ll join us for the discussion on Thursday, 9/5, or at least share your opinions on these timely and important issues in comments here.

Costs of Cancer Drugs Chat – August 22

By Dr. H. Jack West

For our upcoming lung cancer tweetchat (hashtag #lcsm) on Thursday, August 22nd at 8 PM Eastern, 5 PM Pacific, we’re going to be covering the important topic of costs of cancer drugs and procedures, how that’s affecting patient care, whether pricing is fair, and whether there is a sense of value in the drugs and treatments being offered.

The first question we’ll cover is whether the rising costs of cancer drugs and procedures is affecting patients, and if so, how? I have my own perspective, but are patients and caregivers unable to receive medications because of copays? Is this overwhelmingly for oral drugs and not IV medications? I can see how insurers are increasingly limiting the treatments they’ll cover, but how are patients and families feeling the effect of rising drug costs?  And as a related topic, are there procedures that aren’t being done because of cost?  Even if treatments aren’t being placed out of reach, how much time and effort are doctors offices and families spending fighting insurers to get recommended treatments?

The second topic is whether the rising cost of drugs and procedures for cancer is “fair”.  If there are treatments that deliver a very high probability of prolonged response with minimal toxicity, perhaps it should cost 3 times what far less effective treatment costs.  If biotech companies or proton beam radiation companies can change “whatever the market will bear”, is there any need to provide value of what is delivered for the cost?

Finally, we reach the question of where cost and value intersect.  There are a growing number of molecular marker tests being offered for thousands of dollars, offering the promise of new potential markers that have theoretical beneficial effects but often little or no actual clinical evidence of such a benefit. As new possible but unproven markers and drugs are suggested as being treatable with expensive but untested drugs, will payers cover these based on just a reasonable rationale? It is fair to expect them, the thousands who are paying higher premiums, and taxpayers paying for Medicare costs to foot the bill for unproven therapies? If they aren’t covered, would patients/caregivers consider these options important enough to pay much or all of the cost out of pocket?

Cost of care and the new need for a remote sense of value for what treatments cost is only beginning to get injected into the conversations about cancer management, and it’s only going to become more relevant. Please share your opinions, whether here or ideally as part of our live tweetchat discussion on Thursday evening — just filter for the #lcsm hashtag and add it to your comments.

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