#LCSM Chat Topic 5/7 8PM ET: Spreading Hope for #LungCancer
Some of the lung cancer survivors, caregivers and advocates at LUNGevity HOPE Summit
Lung cancer patients, caregivers, advocates and healthcare providers may sometimes feel overwhelmed by diagnosis, treatment (or lack thereof), and published statistics for lung cancer, the top cancer killer.
In reality, we have more reasons to have HOPE now than ever before. More effective treatment options have been approved for lung cancer during the past five years than in the past four decades. Molecular and genomic testing identifies patients who can take targeted therapies. Early detection with low dose CT screening is now covered by insurance. Research into new biomarkers, immunotherapies, and liquid biopsies is underway.
How can we help spread this hope to lung cancer patients, survivors, caregivers, advocates, and healthcare providers?
In honor of Lung Cancer Hope Month (May), #LCSM Chat will discuss “Spreading Hope for Lung Cancer” on Thursday, May 7, at 8 PM. Moderators Janet Freeman-Daily (@JFreemanDaily) and Deana Hendrickson (@LungCancerFaces) will post the following topic questions:
T1: How can healthcare providers help spread hope for lung cancer?
T2: How can advocates and advocacy groups help spread hope for lung cancer?
T3: How can patients and caregivers help spread hope for lung cancer?
T4: How can we encourage HCPs, advocates, patients and caregivers to spread hope more often?
Please remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here.
#LCSM Chat 4/23 8PM ET: Discussing the Role of the Cost of Cancer Therapies. Does Cost Limit Care?
Written by #LCSM Moderator Dr. H. Jack West
Earlier this week, I met a young women newly confronted with the terribly difficult news of a diagnosis of advanced lung cancer. As we discussed the potential of finding a targeted mutation that could be treated by an oral targeted therapy, I mentioned that it typically takes several days to a couple of weeks to get approval and delivery of one of these agents, since they cost anywhere from $7,000 to $15,000 per month in the US. Though I reassured her that this treatment should be covered by her insurer if she has a driver mutation and that there are other mechanisms of assistance, I could see that she was nearly as worried about the potential challenges of the cost of this therapy for her and her family as she was in our discussions around the staging and diagnosis of her cancer.
Then yesterday, I was at a small meeting discussing novel immunotherapies for lung cancer, when the topic shifted from the current focus on individual agents, as currently approved or expected soon, and the future of immunotherapy. Several people agreed that the future is of combining immunotherapies. Along with the potential promise of this strategy, I thought of the sobering prospect that a treatment that costs about $150,000/year could be replaced by a combination that costs twice that much. One member of the group noted that a pharmacist at his institution had calculated that the cost of the complete course of investigational therapy in a clinical trial they were developing would cost about $800,000.
Cancer is already about as distressing a situation as anyone could face. This week we’ll discuss the role of cost of therapies on a cancer patient, covering four key questions:
T1) Has the cost of cancer treatment directly limited your care or that of a patient, if you help care for patients?
T2) Has concern about the impact of cost on you or your family led to significant worry as a symptom to manage, on top of cancer?
T3) Given development costs & benefits these treatments can deliver to patients, are pharma companies justified in charging so much?
T4) Do you feel more attention to cost is justified to lead to change, or do you feel frustrated/angry to be a “hostage” in need?
Join us Thursday, April 23, 5 pm PT/8 pm ET as we discuss these questions and more. Don’t forget to add the #LCSM hashtag to participate. This conversation is open to all! For more information on how to participate, read our #LCSM Chat Primer!
#LCSM Chat Topic 4/9 5pm PT: Shared decision making (#sdm) for #lungcancer screening with #LDCT: What is the best approach?
On February 5, 2015, the Centers for Medicare & Medicaid Services (CMS) issued a final national coverage determination that provides Medicare coverage of screening for lung cancer with low dose computed tomography (LDCT) for high risk patients. CMS will cover lung cancer screening with LDCT once per year for Medicare and Medicaid beneficiaries who meet certain criteria.
In order for CMS to pay for LDCT lung cancer screening, the patient and their health care provider (HCP) must engage in “shared decision making” before the screening–CMS requires them to discuss risks and benefits of screening, including follow-up testing that might occur if nodules are discovered, radiation exposure from the scan, and the possibility of false positives (nodules identified as lung cancer when the patient doesn’t actually have lung cancer).
As CMS states in its decision memo:
“Shared decision making is important for persons within the population for whom screening is recommended. The benefit of screening varies with risk because persons who are at higher risk because of smoking history or other risk factors are more likely to benefit. Screening cannot prevent most lung cancer deaths, and smoking cessation remains essential. Lung cancer screening has substantial harms, most notably the risk for false-positive results and incidental findings that lead to a cascade of testing and treatment that may result in more harm, including the anxiety of living with a lesion that may be cancer. Over-diagnosis of lung cancer and the risks of radiation are real harms, although their magnitude is uncertain. The decision to begin screening should be the result of a thorough discussion of the possible benefits, limitations, and known and uncertain harms.”
But what is shared decision making? How is it different from the usual patient-HCP encounter?
In the traditional method of medical decision making, the doctors might meet in a closed room, come to a consensus, then tell the patient what they will do. With shared decision making, the healthcare provider and patient meet, go over a detailed account of risks and benefits, and make a decision together with consideration of the patient’s perspective and preferences.
Dr. Victor Montori (@vmontori), Professor of Medicine at the Mayo Clinic and expert on shared decision making, states: “Shared decision making makes the options available clear, empowers the patient to consider their options and express their goals.” Dr. Montori’s video on youtube provides a nice description of shared decision making and its importance.
During #LCSM Chat on April 9, 2015, we will discuss what CMS-required shared decision making (#sdm) may look like prior to lung cancer screening with LDCT. Our moderator, Dr. David Tom Cooke (@DavidCookeMD) will address the following topics.
T1: What does shared decision making (#sdm) for #lungcancer screening mean in the patient perspective? HCP perspective? #LCSM
T2: What #LDCT concepts are most important during #sdm? False Positive? False Negative? Rate of true #lungcancer? Radiation exposure? #LCSM
T3: What shared decision making (#sdm) tools are available for discussing #LDCT? What are their strengths and weaknesses? #LCSM
T4: Which graphics best illustrate risks & benefits of #LDCT & the likelihood of actually finding #lungcancer? #LCSM #sdm
Please remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here. Note that #sdm is a healthcare hashtag registered on symplur.com to denote shared decision making. It is not necessary to include #sdm in your tweets to participate in this chat, but including it will make this discussion more visible to the large Twitter community interested in shared decision making. #LDCT is the hashtag registered on symplur.com to denote lung cancer screening with LDCT.
We look forward to an enriching and educational conversation with the #LCSM Community!
References
NLST Patient & HCP Shared Decision Tool
Shared Decision Making: An Interview with Mayo Clinic Professor of Medicine Victor Montori
Symplur analytics for #sdm (shared decision making)
JAMA: Competing Mortality in Cancer Screening–A Teachable Moment
Visualizing Health: A Scientifically Vetted Style Guide for Communicating Health Data
Shared Decision Making Aid for Lung Cancer Screening Discussion
#LCSM 
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