#LCSM Chat Topic 4/6: Who Needs Research Anyway: How Have You Been Impacted by Lung Cancer Research?


Our topic for the next #LCSM Chat on Thursday, April 6th at 5 PM Pacific/ 8 PM Eastern is “Who Needs Research Anyway: How Have You Been Impacted by Lung Cancer Research?” The moderator for this chat is Dr. David Tom Cooke (@DavidCookeMD)

In its most recent budget outline, the Trump administration is looking to propose an 18% cut to the National Institute of Health’s (NIH; @NIH) $31.7 billion budget (#trumpbudget).  In addition to this funding cut, the Trump administration proposes to 1) reorganize the current NIH institute structure and 2) fold the Agency for Healthcare Research and Quality (AHRQ; @AHRQNews) into the NIH, potentially diffusing it’s $334 million budget into other NIH institutes that perform similar quality investigative work.  AHRQ funds research that focuses on patient safety and quality improvement.  For example AHRQ has funded the development of lung cancer screening decision aides, and cancer specific patient-reported outcome measures to improve the care of cancer patients.

It is clear that such cuts to the NIH are unprecedented.  During the sequestration of fiscal year 2013, the NIH budget was reduced by 5%, leading to 700 fewer research project awards and the funding rate for grant applications dropped to 16.7 percent, the lowest level in 20 years.

The Secretary of Health and Human Services (HHS) Dr. Tom Price has stated that the cuts to the NIH budget would be offset by reduced payments to university indirect costs.  Indirect costs are what host research institutions charge to provide administrative support for research awards.  They can be as high as 40% of awarded grants.

On Thursday, April 6th we hope to personalize the lung cancer research enterprise.  For this Twitter conversation “Lung Cancer Research” is anything federally funded (or supported), experimental and hypothesize based.  It can range from clinical trials testing a novel drug, to the development of a device or test, or an epidemiologic study (like lung cancer screening), or healthcare systems improvement evaluation.  We want to hear from Lung Cancer patients and their families, as well as investigators.  Of course all stakeholder voices are welcomed and expected.

We will use the following topic questions to lead the discussion:

T1 How have you or someone you know benefited from #lungcancer research? #LCSM

T2 What #lungcancer research has @NIH funded? How has this led to improvements in cancer outcomes or patient care? #LCSM

T3 What are indirect research costs, and why are they necessary? Do you think they are excessive? #LCSM

T4 What do you want to tell congress about @NIH #lungcancerfunding and/or #cancer research funding? #LCSM

Please join us for what should be a lively discussion. If you’re new to tweet chats, please check out this primer.


  • AAAS. First Trump Budget Proposes Massive Cuts to Several Science Agencies.

https://www.aaas.org/news/first-trump-budget-proposes-massive-cuts-several-science-agencies. Accessed April 2, 2017.

  • Science. Trump wants 2018 NIH cut to come from overhead payments.

http://www.sciencemag.org/news/2017/03/trump-wants-2018-nih-cut-come-overhead-payments. Accessed April 2, 2017.

#LCSM Chat Topic 3/23: What Is a High-Value Cancer Drug?

Our topic for the next #LCSM Chat on Thursday, March 23 at 5 PM Pacific (8 PM Eastern) will be “What Is a High-Value Cancer Drug?”

With the price of new cancer drugs escalating, many are concerned about whether patients and the healthcare system can continue to access the most effective drugs.  The 2016-2017 President’s Cancer Panel (PCP) topic is “Ensuring Patients’ Access to High-Value Cancer Drugs.”  Andrew Schorr of Patient Power will be one of the patient advocates participating in the March 27,  2017 PCP meeting.  This chat will help provide some inputs for Andrew, and give us a chance to chat about the topic in general.

You can also provide Andrew with information for the PCP by completing this survey:  http://www.surveygizmo.com/s3/3370937/Cancer-Drug-Cost-Survey-2017

Moderator Deana Hendrickson (@LungCancerFaces) will use the following topic questions to lead our discussion:

  • T1: How has paying for cancer drugs caused financial hardship for you or someone you know?
  • T2: What factors should determine a drug’s value?
  • T3: How would you define a “high-value cancer drug”? Is it by cost alone?
  • T4: What “quality of life” factors should be captured in clinical trials?
  • T5: How might drug companies do more to prove to you that they are working in your best interest?

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. Hope you’ll join us!

#LCSM Chat Topic 3/9: Test Tumors to Target Lung Cancer

Our topic for the next #LCSM Chat on Thursday, March 9th at 5 PM Pacific (8 PM Eastern) is “Test Tumors to Target Lung Cancer.”

Lung cancer treatments are evolving rapidly. Some newer treatments require testing to identify patients who are likely to respond to the drugs. The testing looks for certain biomarkers on the patient’s cancer tumors, like alterations in the tumor cells’ genes.  Patients whose tumors test positive may be able to take approved targeted therapy drugs that are usually more effective and more tolerable than chemo.

A substantial percentage of non-small cell lung cancers do have gene alterations that can be treated with an approved or experimental targeted therapy.  Approved targeted therapy drugs are available for alterations in three genes (EGFR, ALK, and ROS1), and drugs for other gene alterations are available in clinical trials.  Other types of lung cancer may have available targeted therapy drugs as well. For some biomarkers, a clinical trial may be the best treatment option.

Unfortunately, a December 2016 study found about 40% of patients with stage IV non-small cell lung cancer treated in a community setting aren’t getting tested for even the top two biomarkers with approved drugs (EGFR and ALK). That’s why campaigns such as “Tell a Friend About Tumor Testing” and “Precision Medicine for Me” seek to encourage lung cancer patients to learn about tumor testing.

All lung cancer patients should ask their lung cancer specialist about tumor testing and targeted therapy options. If your doctor is not current on available targeted therapies, seek a second opinion with a lung cancer specialist or a major cancer center.

Moderator Janet Freeman-Daily (@JFreemanDaily) will use the following topic questions to lead our discussion:

  • T1: What exactly is tumor testing for lung cancer? Who should have it, and why is it important?
  • T2: What is targeted therapy? If you’ve had targeted therapy for lung cancer, what was it like?
  • T3: What questions should patients ask their lung cancer doctors about tumor testing and targeted therapies?
  • T4: If my doctor doesn’t test my tumor, what should I do?
  • T5: What resources are available to help patients and carers learn more about lung cancer tumor testing & targeted therapy?

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. Hope you’ll join us!

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