5th Edition – Paris -- June 4-5, 2015

Lung Cancer and Social Media

The Case Study of Lung Cancer ScreeningAndrea Borondy Kitts

Lung Cancer Advocate / MPH Student@findlungcancer

5th Edition – Paris -- June 4-5, 2015

Agenda• What is Lung Cancer?• Lung Cancer Statistics• Lung Cancer Social Media (#LCSM)• Lung Cancer Screening: A Case Study• Call to Action • Summary

5th Edition – Paris -- June 4-5, 2015

Lung Cancer is a Non-Infectious Chronic Disease

http://www.nccn.org/patients/guidelines/nscl/index.html#8

Most are carcinomas and initiate in the lining of the airways

• Bronchi• Bronchiole• Alveoli

Today’s smokers are more likely to develop lung cancer than smokers 50 years ago.

5th Edition – Paris -- June 4-5, 2015

87% Non-Small Cell Lung Cancer (NSCLC); 13% Small Cell Lung Cancer (SCLC) Histology

Molecular Challenges in Lung CancerBen Leach Published Online: December 17, 2012http://www.targetedonc.com/publications/targeted-therapy-news/2012/November-2012/Molecular-Challenges-in-Lung-Cancer

NSCLC further characterized histologically into:

• Adenocarcinoma• Squamous Cell• Large Cell

5th Edition – Paris -- June 4-5, 2015

Natural History of Lung Cancer

DNA damage to

cells

Abnormal cell

growth

Lesion

Pathological

Evidence

Metastasis

Diagnosis

Treatment

Death

Damage accumulates with age and exposure to agents e.g. tobacco. Average age of diagnosis is 70

Few symptoms in early stages

Screening test (LDCT) covered by insurance starting in 2015

Approximately 80% of diagnoses at a late stage

Early stage – Surgery and possible adjuvant chemo/radiation

Late stage – palliative and life extension, targeted treatment, immunotherapy

CTPET/CTBiopsyENBMRIStaging

5 year survival 16.8%Localized – 54%Distant – 4%

http://seer.cancer.gov/statfacts/html/lungb.html

http://www.nccn.org/patients/guidelines/nscl/index.html

5th Edition – Paris -- June 4-5, 2015

Global Lung Cancer Incidence and Mortality Most common cancer worldwide • 1.6 million deaths in 2012

58% percent of new cases in underdeveloped regions

Highest incidence and mortality in men • Central and Eastern Europe

(Hungarian men highest in world)• Eastern AsiaWomen have lower incidence and mortality • Highest in North America –

cultural differences in smoking prevalence

• Incidence in European women increasing – lag in smoking adoptionhttp://globocan.iarc.fr/Pages/fact_sheets_cancer.aspx

5th Edition – Paris -- June 4-5, 2015

Lung Cancer Incidence Worldwide

5th Edition – Paris -- June 4-5, 2015

Lung Cancer is the 2nd Leading Cause of Death in the US

• Lung cancer is the leading cause of cancer deaths in both men and women in the US

• 160,000 die each year, more than breast, colon, prostate and pancreatic cancer combined

• 5 year survival at 16.8% essentially unchanged since 1975

5th Edition – Paris -- June 4-5, 2015

Deadliness of disease and images of horrible death

Lack of survivors and advocates = less research $’s

5th Edition – Paris -- June 4-5, 2015

#LCSM Founded in July 2013 • Foster social media collaboration among lung cancer patients,

caregivers, family members, advocates, healthcare providers, researchers and charities

• Use social media in an innovative manner to educate, develop public support, end the stigma, and facilitate successful treatments for the leading cause of cancer deaths worldwide.

• Founders: • Deana Hendrickson @LungCancerFaces • Dr. David Tom Cooke @UCD_ChestHealth• Dr. Jack West @JackWestMD• Laronica Conway @louisianagirl91• Janet Freeman-Daily @JFreemanDailyhttp://lcsmchat.com/

5th Edition – Paris -- June 4-5, 2015

Analytics July 25, 2013 – May 4, 2015

#LCSM Tweet Chats Every Other Thursday

5th Edition – Paris -- June 4-5, 2015

Why Screening? Late Stage of Lung Cancer Diagnosis

<1% 5 year Overall Survival

Stage IV NSCLC

5th Edition – Paris -- June 4-5, 2015

Lung Cancer Screening with LDCTFinds Lung Cancer Early

92% 5-year overall survival

5th Edition – Paris -- June 4-5, 2015

National Screening Trial Results

The National Lung Screening Trial Research Team . N Engl J Med 2011;365:395-409.

More Lung Cancers found in LDCT Arm• Total Cases

• LDCT 1060 • CXR 941

• Cases per 100k person years• LDCT 645 • CXR 572

Difference primarily early stage disease More Lung Cancer Deaths in CXR Arm• Total Deaths

• LDCT 356 • CXR 443

• Deaths per 100k person years• LDCT 247• CXR 309

20% Reduction in mortality with LDCT 6.7% Reduction Overall Mortality

5th Edition – Paris -- June 4-5, 2015

Case Study – Social Media and Lung Cancer Screening

• Lung Cancer Screening was recommended by the United States Preventative Services Task Force in December 2013

• Insurance coverage started January 2015 without a co-pay

• Does not apply to the Medicare and Medicaid population

5th Edition – Paris -- June 4-5, 2015

Case Study – Social Media and Lung Cancer Screening

• Center for Medicare and Medicaid Services (CMS) started a National Coverage Determination Analysis in February 2014.

• Social Media Campaign Launched to Encourage Comments Supporting Lung Cancer Screening

5th Edition – Paris -- June 4-5, 2015

Targeted Patients, Advocates, Health Care Providers, General Public and Screening Sites

8,296 people signed Change.org Petition in 3 weeksScreening Sites Commented directly to CMS Website

5th Edition – Paris -- June 4-5, 2015

Example Tweets and Facebook Messages

5th Edition – Paris -- June 4-5, 2015

Almost 10 million Twitter impressions during Petition Campaign

5th Edition – Paris -- June 4-5, 2015

Case Study – Social Media and Lung Cancer Screening

• Medicare Evidence Development and Coverage Advisory Committee (MEDCAC) meeting April 30, 2014

• Voted Low Confidence in LDCT Lung Cancer Screening for Medicare Population

5th Edition – Paris -- June 4-5, 2015

• #LCSM Helped Engage Stake Holders in Political Action

5th Edition – Paris -- June 4-5, 2015

US House of Representatives & Senate Sent Letters signed by 1/3 of all Members to CMS Urging

Screening

30 Medical Societies and 45 Lung Cancer Screening Sites Joined to Provide Technical Data

and Support for Screening

5th Edition – Paris -- June 4-5, 2015

Case Study – Social Media and Lung Cancer Screening

• CMS Final Recommendation Supports Lung Cancer Screening for the High Risk Medicare Population

• Estimated to save 10,000 to 20,000 lives per year

5th Edition – Paris -- June 4-5, 2015

Call to Action – Time for Lung Cancer Screening for Europe?

Lung Cancer Incidence High in Men and Increasing in Women

Men Women

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5th Edition – Paris -- June 4-5, 2015

Summary

• Lung cancer is the leading cause of cancer deaths worldwide – 1.6 million deaths per year

• Five year survival little improved since 1975• Stigma and lack of research funding • Until now, no screening test

• Social Media Helped Influence US Recommendation for Lung Cancer Screening in the high Risk Medicare Population • Twitter promotion of on-line petition • Twitter call to action to contact Congressional representatives • Facebook direct messaging to screening sites

• Call to Action for EU to Recommend lung cancer screening for the high risk population • Incidence high in men – Hungarian men highest in the world• Incidence increasing in European women

5th Edition – Paris -- June 4-5, 2015

Back-up Slides

5th Edition – Paris -- June 4-5, 2015

Surgical Treatment in Early Stages; Systematic Treatment in Late Stages

Surgical Options include wedge resection, lobectomy, bilobectomy, and pneumonectomy via traditional, minimally invasive (VATS) or robotic surgery • sometimes preceded by, or followed

with, adjuvant chemotherapy and/or radiation

Systematic treatments include chemotherapy, radiation, targeted molecular treatments, and immunotherapy

• Approximately 67% of NSCLC have an identified genetic mutation

http://www.onclive.com/publications/Oncology-live/2013/January-2013/Targeting-Tumors-Early-Trials-Push-Novel-Agents-to-Forefront/2

5th Edition – Paris -- June 4-5, 2015

Lung Cancer Incidence in Europe

5th Edition – Paris -- June 4-5, 2015

Stigma due to Strong Link with SmokingAdverse Impacts on Depressive Symptoms, Quality of Life and

Physical Symptoms

People with lung cancer blamed and/or blame themselves for their disease

http://cancergeek.wordpress.com/2013/11/16/cancer-the-harsh-story-of-lung-cancer-vs-breast-cancer/

5th Edition – Paris -- June 4-5, 2015

Annual Lung Cancer Screening Recommended For the High Risk Population

Covered by Insurance without a Co-Pay Age 55 to 80 (age 77 for Medicare)

Smoking History 30 pack years or more• 1 pack a day for 30 years/2 packs per day for 15 years

Current or Former Smoker Quit within the last 15 years

Asymptomatic

Low Dose CT scan• 15 minutes, 10 second breath hold• No IV• Don’t need to change

5th Edition – Paris -- June 4-5, 2015

How #LCSM Formed • Deana Hendrickson (@LungCancerFaces on Twitter) discovered the #BCSM

community for breast cancer while exploring Twitter for lung cancer advocacy. She thought an #LCSM hashtag would be useful for Lung Cancer Social Media, so she searched to see if anyone was using it. She found Dr. Matt Katz (@subatomicdoc) had used #LCSM on a few tweets, and they chatted about the hashtag using Twitter’s direct message feature. The two of them decided to increase #LCSM use to raise visibility of lung cancer on Twitter. Deana was also communicating via Twitter direct message with Dr. David Tom Cooke (@UCD_ChestHealth) about trying to start an #LCSM chat. As the #LCSM hashtag started to appear on Twitter more often, Dr. Jack West (@JackWestMD) contacted Deana and offered to moderate an #LCSM chat. Laronica Conway (@louisianagirl91) and Deana also connected on Twitter, and discovered they shared the same vision for #LCSM. Amidst all these connections, #LCSM chat became a reality. The first chat occurred on July 25, 2013, at 8 PM Eastern Time. Deana and Janet Freeman-Daily (@JFreemanDaily, AKA Squanch on Inspire.com) first met on the Inspire Lung Cancer Support Community; Deana invited Janet to join the second #LCSM chat, and eventually asked her to join the founding team. Laronica and Janet then created the LCSM blog site with feedback from the team

5th Edition – Paris -- June 4-5, 2015

Example Tweets and Facebook Messages

5th Edition – Paris -- June 4-5, 2015

Example Tweets and Facebook Messages