#LCSM

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.

Does The Lung Cancer Community Risk Losing Unity By Breaking Into Subgroups – August 8

By Dr. H. Jack West

A couple of weeks ago, I described the new concept of a tweetchat” about lung cancer, and we’re about to have our second of these tomorrow: Thursday, August 8th, at 8 PM Eastern, 5 PM Pacific time. The topic for this one will be about the growing trend toward personalized cancer care, breaking what was previously one broad category of “lung cancer” into a federation of smaller subgroups — defined by tumor histology, molecular marker results, smoking status, etc.  But do we risk losing some hard fought unity by identifying “us” and “them” subgroups within the lung cancer community?  Or can we subgroups who still come together toward a common goal of promoting lung cancer awareness, funding, and breakdown of stigma associated with the disease?

Specifically, we’re going to cover three subtopics that have led to identification of subgroups and the potential implications of this.

First, let’s consider smoking status, which certainly has biological relevance in predicting the probability of having certain clinically relevant molecular markers, but it’s also an emotionally charged variable. Lung cancer awareness campaigns often highlight that some victims of lung cancer never smoked, since so many people blame the victim with lung cancer as if they deserve it for smoking.  Does this approach risk pitting smokers against never-smokers? Have we created antagonism within the lung cancer community between smokers and never-smoker, or is that increasingly likely as we focus on smoking status? Does the distinction of smoking status, which is relevant with regard to the biology of the cancer, cause people who smoked or continue to smoke feel worse?

Second, we’ve recently identified several important molecular markers present in only a small minority (1-10%) of lung cancer patients. In many cases, these have developed into major treatment advances, but just for these narrow patient subgroups.  By testing for and identifying patients as having or not having an EGFR mutation, ALK rearrangement, etc., are we developing a lung cancer world of “haves” and “have nots”?

Finally, we now face the challenge of doing clinical trials in small subgroups that don’t have a critical mass of patients all in the same city or region with, say, an ALK or ROS1 rearrangement. We used to run broad trials for “all people with advanced non-small cell lung cancer” who have received a single line of chemotherapy.  How can we feasibly do studies where there might be just 1-5 people in a single area who fit the requirements. Do those people with a rare mutation or acquired resistance to EGFR inhibitors, etc., need to travel to the handful of locations that have such trials? How can we best facilitate such trials being completed and new treatments becoming available for geographically dispersed small subgroups?

For those of you who already participate on Twitter and are able to join our live tweetchat, please join the conversation tomorrow: just filter for the hashtag “#lcsm”,follow the stream of comments that come in, and add that hashtag to your tweets.  Otherwise, your insights and opinions would be very appreciated on all of these questions, whether before or after the live tweetchat, and I’d encourage you to share them here.

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