This document is a directed research project submitted to American University examining how the Lung Cancer Alliance fights stigma against lung cancer. It begins with acknowledgements and is followed by an abstract, table of contents, and introduction section outlining the goals of understanding how to fight stigmatized disease through examining LCA's efforts. The literature review then surveys research on defining stigma, diseases facing stigma like lung cancer, HIV/AIDS, and cancer, and best practices for fighting stigma.

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Can One Fight Disease Stigma?
A case study: The Lung Cancer Alliance’s avenues to
fight stigma against lung cancer
A Directed Research Project
Submitted to
THE FACULTY OF THE PUBLIC COMMUNICATION GRADUATE PROGRAM
SCHOOL OF COMMUNICATION
AMERICAN UNIVERSITY
WASHINGTON, D.C.
In Candidacy for the Degree of
Master of Arts
By
Tommia Hayes
May 2016

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Acknowledgements
I first want to say, this study is dedicated in memory of my loving mother, Allene Hayes.
You motivated me in so many positive ways and I wish you were physically here to see me walk
across the stage May 7, 2016. I wrote this report with you in mind because lung cancer is not just
a smoker’s disease, it is an anyone who can breathe disease. I hope you continue to look down on
us and keep blessing our family.
God, I do not know where I would be in my life without you and I hope to never find out.
None of this would not be possible without your will, so I thank you and pray you continue to bless
me in my next journey.
I also have to thank my father, Thomas Hayes and babysitter, Ms. Shirley Jackson. For all
those weekends you had to give up, like myself, to watch over my little angel, Tyler. If it wasn’t
for you guys being here for me and helping me with my son, I don’t know if I could have made it
this far. As the saying goes, it takes a village to raise a family.
To my loving fiancé, Shayne Harvey. You are always here for me. When I lost my mother,
when I received my bachelors and now my master’s. You encouraged me to apply to American
University and supported me during the ride. You made me feel like I can accomplish anything in
this world and I will always love you for that! I thank you for helping me and seeing my potential
when I didn’t see it myself. I don’t know where I would be but I know I wouldn’t be the woman I
am today without you by myside.
Dr. Zaharna, words can’t begin to say how much I appreciate you! You helped me every
step of the way. From research to personal advice, you were always my cheerleader and confidant
and I hope you never change. You are such an amazing woman and professor. Thank you for all of
your advice and assistance during this phase in my life.

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Abstract
This study attempts to answer the question, how can one fight to end
disease stigma, specifically lung cancer? The goal is to examine the effectiveness
of an organization strategically fighting to end disease stigma. The Lung Cancer
Alliance will be the focus of this examination. This study will explore which
avenues this organization is using to reach the publics on educating and bringing
awareness on lung cancer. The purpose behind the study is to learn why lung
cancer is not receiving as much media attention and federal funding compared to
breast cancer or HIV/AIDS. A case study approach will be used to explore the
Lung Cancer Alliance's methods to end stigma amongst the lung cancer
community and publics as a whole.
Keywords: stigma, disease, public health campaigns, lung cancer, Lung
Cancer Alliance, awareness

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Table of Contents
Acknowledgements ……………………………………………………………………… 2
Abstract …………………………………………………………………………………… 3
Section I: Introduction …………………………………………………………………… 5
Section II: Literature Review ……………………………………………………………. 8
Section III: Methodology…………………………………………………………………. 28
Section IV: Case Profile …………………………………………………………………. 30
Section V: Case Analysis ……………………………………………………………….. 38
Section VI: Conclusion ………………………………………………………………….. 51
Section VII: References…………………………………………………………………… 53

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I. Introduction
For many years now stigma has played a huge factor in what the public perceives
as a “negative disease.” This leaves many of those who are diagnosed with a ‘negative
disease’ discriminated against by: family members, employers, health professionals, and
strangers. Stigmatized diseases include: HIV/AIDS, obesity, mental health illnesses, lung
cancer, and many others. One of the negative impact for an individual diagnosed with
these stigmatized diseases is that sometimes they do not seek the help needed. Sometimes
it can affect their personal lives and damage relationships or their professional lives if
managers do not want to hire these individuals.
This growing epidemic has made health professional aware of the problem of
stigma and has prompted public awareness campaigns and organizations to teach the
public how individuals contract these diseases in order to help eliminate rumors. Also,
organizations advocate to put laws in place to protect these individuals so that they
cannot be discriminated against.
There are multiple diseases that are still being stigmatized. The stigmatized
disease I will focus on with this capstone is lung cancer. According to the Lung Cancer
Alliance (LCA), lung cancer has the highest death rate than any other cancers. Yet, lung
cancer receives the lowest amount of federal funding for research to find new treatments
and the cure. The reason is because it is a stigmatized disease. This capstone seeks to
understand how to fight stigmatized disease through a case study of the Lung Cancer
Alliance.

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LCA believes a factor that plays into the lack of funding and support is because of
stigma. Many believe lung cancer is a smoker’s disease and that is a myth. People who
are diagnosed with this disease get it from asbestos, mesothelioma and more. The
pressing issue of public’s stigmatizing the lung cancer community is largely due to lack
of knowledge of people being diagnosed with lung cancer. Also, individuals not
understanding that this is not a smoker's disease. Lastly, how people have a lack of
sympathy when one tells them they are diagnosed and stigmatizing those with the
disease.
This study addresses the implication of an individual’s being stigmatized based on
having a “negative disease.” This study will analyze LCA’s fight to end disease stigma
amongst the lung cancer community. Specifically, it looks at how the Lung Cancer
Alliance is trying to educate the public about how stigmatizing can affect individuals and
how to change the public’s perspective of individuals diagnosed with the “negative
disease.”
The study’s purpose is to explore techniques for increasing information on lung
cancer policies. And, how organizations similar to the Lung Cancer Alliance can bring
more awareness and policies for lung cancer like previous stigmatized diseases such as:
HIV/AIDS.

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The objectives for this capstone include:
- To understand stigma and policies fighting against stigma.
- To analyze the Lung Cancer Alliance and learn how they are fighting to end disease
stigma amongst the lung cancer community.
- To learn what avenue people in the lung cancer community or public in general can
learn more facts about lung cancer.
The significance of this study is lung cancer is the number one cause of cancer
related deaths. Yet, information and campaigns are not as easily accessible compared to
research on breast cancer and HIV/ AIDS. Also, how both of those diseases receives
much more federal funding for treatments. The limitations of the study is the focus on
one organization as a case study.
Following this Introduction, the next section provides a literature review on
stigma and disease in health communication. The third section is the methodology. The
fourth and fifth sections are the Case Profile and Case Analysis of the LCA.

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II. Literature Review
This literature review surveys scholarship on what is stigma, some diseases that
are stigmatized, best practices to fight disease stigma, and how laws protect those
diagnosed with stigmatized diseases. The literature review will first survey what is
stigma.
What is Stigma
In order understand why individuals have stigma towards “negative diseases” one
must know what stigma is and learn the history behind people’s behavior. First, I want to
show what is disease stigma and the role it plays towards discrimination to those
diagnosed with “negative disease”.
Yang, Kleinman, Link, Phelan, Lee and Good (2007) added a moral component to
the discussion of defining stigma. Yang et al. (2007) build from other theory experts such
as Goffman (1963) and Major & O’Brien (2005) to show the definition of stigma and
how the notion of stigma has an essential moral issues which threatens or diminishes the
one being discriminated. Furthermore, new targets can be created for anti-stigma
measurement. They back this claim by using six pivotal ideas: definition of stigma, moral
experience and stigma, implications of previous stigma theory on measurement, stigma is
sociosomatic, stigma threatens what matters most, and lastly measuring stigma requires
multiple perspectives and measures.
The first idea Yang et al. (2007) introduces readers to different definitions of
stigma. These scholars draw from Goffman’s (1963) definition of stigma as, “an attribute

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that is deeply discrediting’’ and proposes that the stigmatized person is reduced ‘‘from a
whole and usual person to a tainted, discounted one’’ (p. 1525). Link and Phelan (2001)
defined stigma as, “a broad umbrella concept that links interrelated stigma components”
(p. 1525). Examples of these definitions are, “that the stigma process depends on the use
of social, economic, and political power that imbues the preceding stigma components
with discriminatory consequences” (p. 1525).
The second idea Yang et al. (2007) discuss is moral experience and stigma. This
concept is defined by scholars as, “Sociological approaches push us to conceive of stigma
as a social process with multiple dimensions. Stigma is seen to be embedded in the
interpretive engagements of social actors, involving cultural meanings, affective states,
roles, and ideal types” (p.1528). An example of this idea used by these six scholars is
how, “across cultures, the meanings, practices, and outcomes of stigma differ, even
where we find stigmatization to be a powerful and often preferred response to illness,
disability, and difference” and “A review of the research literature in China, for example,
would lead one to conclude that stigma exerts its negative effects in a similar way to
other communities” (p.1528).
The third idea Yang et al. (2007) explore is the implications of previous stigma
theory on measurement. The scholars explain that, “stigma theories exert a direct
influence on measurement by determining the content of stigma assessments and thereby
identifying what lies within the stigma construct and stigma models has contributed to a
predominance of survey research conducted among certain groups” (p. 1531).

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An example they found is, “To a lesser degree, studies that examine theories of how
individuals experience and respond to stigma have also resulted in a significant
proportion of studies that sample people with mental illness, constituting the second-most
sampled group (22% of studies)” (p.1531). These results show how people with mental
illness say they receive stigma based on people knowing their condition.
The fourth idea discussed by Yang et al. (2007) is stigma is sociosomatic. This
concept is defined by two categories which are moral-somatic and moral-emotional
forms. Moral- somatic is defined as, “c processes, one’s bodily states are linked with
one’s experience of societal norms and values” (p.1532). These scholars draw from
Edgerton (1993) example for this term by saying, “people with mild mental retardation
who preserve self-esteem and a sense of normality by adamantly rejecting the label of
mental retardation and its implied lack of basic competence” (p.1532). The second term
is moral-emotional processes. This is defined by the scholars as, “social values are
concurrently linked with an individual’s experience of emotions” (p.1532). An example
of this is, “in this context, the loss of social standing and weakening of social ties
resulting from stigma become inseparable from feelings of overwhelming shame,
humiliation and despair” (p.1532).
The fifth idea discussed by Yang et al. (2007) is stigma threatens what matters
most. Their explanation of this concept is, “stigma takes on its character of danger by
threatening interpersonal engagements and what is most at stake” (p.1532). An example
of this explanation is, “in one study in Hong Kong reported that family members in

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addition to sharing the shame of mentally ill individuals, also may perpetuate stigma
towards the patient” (p.1533).
The final idea in Yang et al. (2007) argument is measuring stigma requires
multiple perspectives and measure. How this idea is explained by the scholars is,
“multiple informants become necessary because stigmatized individuals may possess
inadequate awareness of how community members view their condition” and “Second,
stigmatized individuals may not disclose concerns regarding stigma because it may be
felt as too threatening” (p.1533). An example is to, “use of multiple vantage points and
methodologies may reveal different or complementary perspectives on how stigma
threatens to diminish what is held as most dear by local participants” (p.1533). More
specifically using the ethnographic method, which is observing people in their natural
environment.
Link and Phelan (2006) show readers how stigma plays a factor in stereotyping
individuals who are diagnosed with certain diseased. The scholars discuss major forms of
discrimination, stigma process and life changes, and stigma and Stress.
Link and Phelan (2006) discuss major forms of discrimination as being varied on
degrees of severity. As the scholars explain, “an insidious form of discrimination occurs
when stigmatized individuals realize that a negative label has been applied to them and
that other people are likely to view them as less trustworthy and intelligent, and more
dangerous and incompetent” (p.528). Examples of discrimination include being refused a

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job or someone refusing to rent to you.
Link and Phelan discussed stigma process and life changes on people. According
to the scholars, “Stigma processes have a dramatic and probably under-recognized effect
on the distribution of life chances such as employment opportunities, housing, and access
to medical care” (p.528). An example would be, “restricted analysis to one circumstance
(e.g., AIDS, obesity, race, or mental illness) and examined only one outcome (e.g.,
earnings, self-esteem, housing, or social interactions)” (p.528).
Link and Phelan (2006) suggest that stigma and stress are related. Link and
Phelan argue that, “a stigmatized person is denied the good things in life and suffers more
of the bad things has been posited as a source of chronic stress, with consequent negative
effects on mental and physical health. Stress is also associated with the constant threat of
being stigmatized” (p.528). An example used by Link and Phelan is, the career woman
who tries to prove that she is as good as any man but at a cost of having hypertension and
other health problems. The scholars claim the stress associated with stigma can be
particularly difficult for those with disease-associated stigma (p.529).
Stigmatized Diseases
This next section shifts from what is disease stigma and begins to focus on some
diseases that are stigmatized.

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Kathryn Greene and Smita Banerjee (2006) explore how the high rate of AIDS
and cancer and the lack of information given to the public began stigma towards
individuals diagnosed with these diseases especially those with AIDS. Greene and
Banerjee (2006) focus on several aspects: AIDS Stigma and sexual prejudice, cancer
stigma, comparing AIDS and cancer stigma, AIDS Stigma and Religiosity, AIDS Stigma
and Authoritarianism, and AIDS and Androgyny.
Greene and Banerjee (2006) discussed AIDS and sexual prejudice. Greene and
Banerjee describe AIDS and sexual prejudice as, “people with AIDS are multiply
stigmatized by the association of with death and by equation of AIDS with previously
stigmatized homosexual behavior, drug use, prostitution, and promiscuity” (p.188). An
example of this concept from Greene and Banerjee is, “people who contract AIDS
sexually are assigned more blame for their infection, especially a gay or bisexual man
who acquired AIDS sexually” (p.188). Thus, evoking people to have prejudice towards
people who are homosexual.
Greene and Banerjee (2006) discussed cancer stigma. Cancer stigma explained by
Greene and Banerjee is when, “some people feel uncomfortable in the presence of
someone with cancer, and people with cancer are sometimes “victimized” or avoided by
family members and friends, resulting in strain between people with cancer” (p.188). An
example of this is how some family members tend to distant themselves from their loved
ones once knowing they are diagnosed with cancer. In result creating a strain in their
relationship because they aren’t displaying normal behavior patterns.

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Greene and Banerjee (2006) compared the stigma of AIDS and cancer. Greene
and Banerjee draws from Greene (2002) research which found, “Cancer stigma does not
conjure the attribution of blame that HIV or AIDS often carries, although different kinds
of cancer are perceived differently” (p.189). Additionally, based on previous research, the
scholars claim that the stigma associated with AIDS is higher than cancer” (p.189).
Greene and Banerjee also discussed is AIDS stigma and religiosity. In the early
1980s, the scholars discussed when the symptoms of AIDS were first identified, it was
considered a “gay disease” (p.190). Since this was considered a “gay disease”, religious
figures had negatively viewed those who were diagnosed with this disease. For example,
someone practicing the Catholic faith that was diagnosed with AIDS in the 80’s would be
stigmatized by the community and potentially shunned by the community.
Greene and Benerjee looked at AIDS stigma and authoritarianism. The
authoritarian personality, say the scholars, is often as a basis for explaining the origins for
stereotyping, prejudice, and discrimination” (p.190). For example, individuals who
display authoritarianism character traits displayed stigma towards those diagnosed with
AIDS because of the belief they contracted the disease from a homosexual lifestyle or
using drugs.

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Greene and Banerjee discuss AIDS and Androgyny last. Greene and Banerjee
draw from Bem (1974) definition, “a theory of psychological gender rather than
biological gender, based on the premise that variation within genders is greater than the
difference between genders” (p.191). For example, in their research they found that
women tend to not stigmatized those diagnosed with AIDS versus men.
Public Health Campaigns
Despite the strong presence of disease stigma, a successful health communication
campaign providing education and awareness can help lower stigma amongst individuals
not diagnosed with thus disease. Below are some successful health campaigns scholars
have studied.
Grant Jacobsen and Kathryn Jacobsen (2011) explore how awareness public
communication campaigns, specifically the National Breast Cancer Awareness Month
(NBCAM) can educate the public about this cancer. How this campaign led to people
being diagnosed with breast cancer. They focus on three different aspects of the
campaign: related literature, background on the breast cancer awareness movement, and
data.
Jacobsen and Jacobsen (2011) found that individuals reading or seeing literature
during NBCAM campaign and had increase screening rates. If a woman who never
received a mammogram saw a commercial during NBCAM, it sparked her to get tested
because of learning getting tested early could save her life.

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Jacobsen and Jacobsen (2011) then discussed the background on the breast cancer
awareness movement. Jacobsen and Jacobsen explained how the NBCAM began, what
started health professionals to begin to promote awareness. An example used by Jacobsen
and Jacobsen is, after Betty Ford, President Ford’s wife publicly announce she was
getting breast cancer surgery, this was credited to public awareness about the situation
and motivated more women to get tested.
Jacobsen and Jacobsen discuss last the data from NBCAM. The data showed the
campaign was effective on women. The scholars found, “from 1993 to 1995, when the
breast cancer awareness movement was rapidly expanding, there was a clear spike in
November diagnoses, suggesting that NBCAM events were effective at increasing
diagnoses in those years” (p.58).
Chao and So (2011) shows readers how the Jade Ribbon Campaign, a public
communications health campaign, helped improved the lives of Asians and Pacific
Islanders because of their lack of awareness Hepatitis B and liver cancer. According to
Chao and So, these diseases were becoming the leading causes of morbidity and mortality
among the Asians and Pacific Islanders (API). Chao and So state, “despite advances in
cancer therapy, the 5-year survival rate for liver cancer is less than 11%, highlighting the
need for prevention to reduce the burden of liver cancer mortality” (p.46). Liver cancer is
the third leading cause of cancer related deaths worldwide, which is why the Jade Ribbon
Campaign was developed in 2001. To address the API community since a high were
contracting hepatitis B or becoming diagnosed with liver cancer. For example, Chao and

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So state approximately 350 million people worldwide have hepatitis B and over three-
quarters of them reside in Asia and Melanesia. Chao and So examine the success of the
cultural component of the worldwide public health campaign, the ‘Jade Ribbon
Campaign’ by focusing on five aspects of the campaign. The five aspects are: culturally
sensitive campaign emblems, Media Campaign, Brochures, Health - care provider
outreach and Community Outreach.
Chao and So first look at culturally sensitive campaign emblems. Chao and So
discuss how the campaign logo was designed in mind to be
sensitive toward the API culture. Within the API culture discussing
death and illnesses are considered taboo. Keeping that in mind the
Jade Ribbon Campaign focused on promoting health instead of
focusing the negatives. Also, within the API culture certain images and numbers are
considered unlucky, like the number four. So the creators of the campaign made sure to
keep that in mind when choosing the logo.
Chao and So then discuss the ‘Media campaign.’ Chao and So explain, the Jade
Ribbon Campaign team made sure the campaign was launched in May to coincide with
API Heritage Month. Chao and So states to the readers that, “the campaign included
linguistically and culturally targeted newspapers, magazine, television, and radio public
service announcements (PSA), supplemented by comprehensive educational brochures,
web-based resources and informational hotline” (p. 49). The PSA’s featured prominent
Asian celebrities to help deliver the message to the API community.

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Chao and So describe the significance of ‘brochures.’ According to Chao and So,
the brochures served “as a convenient and accessible means of educating different
segments of the target audience” (p.49). For example, brochures were developed for
different audience like pregnant women or health professionals. The brochures included
information that was relevant and tailored to the API culture. An example of this Chao
and So use is, “Asian dining is often family style, the team emphasized that hepatitis B is
not transmitted through food” (p.49).
Chao and So discuss Health-care provider outreach. According to Chao and So,
“health-care providers are generally the most preferred source of health information for
API” (p.49). Knowing people from the API culture highly respect receiving information
from health-care professional the Jade Ribbon Campaign team made sure target the
health care professionals. Making sure they were fully educated about hepatitis B to
provide accurate information to patients and become allies with the campaign.
Chao and So looks into community outreach last. Community outreach is
described as informing the public at major cultural events. For example, hosting an
informational booth at the annual Chinese New Year celebrations or Vietnamese Tet
festivals. During these events the goal was, “provide basic education on disease
transmission, consequences and prevention” (p.50). While providing this information
making it fun, like giving short quizzes and prizes to the winners. Participants of the
quizzes were shocked how badly they scored, which prompted them to want to learn
more about the disease at the booths.

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While lessons can be taken from health campaigns combating stigma, the success
of general public health communications campaign, not combating stigma also make an
impact.
Farrelly, Nonnemaker, Davis, and Hussin (2009) study focuses on the
effectiveness of the national truth campaign geared to motivate youth to quit or not
smoke. Farrelly et al. (2009) discuss three facets of the campaign: campaign exposure,
confounders, and statistical analysis.
Farrelly et al. (2009) first discuss campaign exposure. Scholars explain as,
exploring which markets the campaign was advertised on and how much exposure it
gained through different channels such as MTV, UPN, FOX etc. Farrelly et al. example
is, “if 75% of the target audience saw a commercial four times in a given quarter, this
would translate into 300 Gross Rating Points (GRPs). Because the ratings for those aged
12–17 years represent averages for each market, this measure represents an adolescent’s
potential exposure to the campaign” (p.380).
Farrelly et al. (2009) then discuss confounders. Confounders is described as the
baseline of who was influenced such as ethnicity, age gender and etc. For example, one
could measure the success of how the Truth campaign is reaching its targeted
demographic by doing a survey on a particular confounder by age.

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Farrelly et al. (2009) reveals the success of the Truth campaign last. According to
their statistical analysis, approximately 450,000 adolescents declined to smoke nationally.
Proving, the media tactic the Truth campaign used to influence teenagers was effective.
Policy and Law
Scholars have found having laws and/or policies in place plays a role to help
combat stigma against “bad diseases.” It also protects those diagnosed with thus “bad
diseases” from discrimination.
Burris (2002) gives readers insight on how health stigma became an important
factor when framing laws to protect individuals who have diseases that are “disfavored”
in society. Burris uses four concepts to back his thesis. Those four factors are: ‘Stigma
and Law in Public Health,’ ‘Stigma and Law at the Social Level,’ ‘Law and the
Individual Response to Stigma,’ and ‘Good Stigma.’
The first factor Burris discusses is, ‘Stigma and Law in Public Health.’ Stigma
and Law in Public Health is explained by Burris as, “Stigma is a potentially important
source of social risk. Because the stigma may be enacted in discrimination, it makes
perfect sense to enact laws that protect people with stigmatized traits from discrimination,
as well as to take steps to ensure that information that would expose a concealed stigma is
protected from inappropriate release” (p.182). An example of this is, “preventing them
from being driven underground—then we have to consider how law plays into the
prospective calculations of those who are protected. We have to look, that is, at reliance
on law in the strategic improvisations of daily life” (p.183).

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The second factor discussed is ‘Stigma and Law at the Social Level.’ Burris
explains, “stigma is a cultural phenomenon, a matter of the social meaning of identity and
traits. Hence to ask how law contributes to the creation and maintenance of stigma in a
population is to make an inquiry into the ways that law influences culture generally and
the social meaning of particular phenomena” (p.183). An example of this concept is, “law
could help make differences salient simply by making the stigmatized trait a recognized
legal category. "Race," "disability," and "HIV-positive" have all been made into legal
categories in the United States, sometimes for good reasons and sometimes for bad, but
always with at least the potential effect of objectifying and validating the notion that the
trait is significant under at least some circumstances” (p.183).
The third factor Burris discusses is ‘Law and the Individual Response to Stigma’
Burris explains this concept as, “Enforcement of rules against discrimination, and
voluntary compliance, can be expected to reduce the objective risks of exposing a
stigmatized trait just as laws that impose penalties upon people with the trait can
encourage concealment” (p.186). An example of this is, “the law's effect on the initial
process of coping with stigma is likely to be far less than (and mediated through) the
behavior and attitudes of healthcare and social service providers who convey the
diagnosis and take some deliberate or inadvertent role in helping the individual
understand his or her new world” (p.186).

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The final factor discussed by Burris is, ‘Good Stigma.’ Burris describes good
stigma as, showing the public how negative traits can impact health. An example used by
Burris is, “The public health campaign against smoking is a common example. One of the
reasons for the decline in smoking, it has been argued, has been the deliberate and
systematic stigmatization of smoking” (p.187).
Nyblade, Stangl, Weiss and Ashburn (2009) discuss how combating stigma of
diseases, specifically HIV/AIDS is a process. Also, how it is important to make sure
health care professionals not infected by this disease is well educated to prevent them not
to stigmatized those patients who may be diagnosed with HIV/AIDS. Nyblade, Stangl,
Weiss and Ashburn describe how to combat stigmatizing HIV/AIDS by using three ideas
that can help combat stigma amongst individuals on three different levels: Individual
level, Environmental level and Policy level.
Nyblade et al. (2009) first discuss the individual level. Individual level requires
increasing awareness about stigma within individuals, particularly health workers. As
Nyblade et al. state, “Health workers fears and misconceptions about HIV transmission
must be addressed” (p. 4). Also, “fear of acquiring HIV through everyday contact leads
people to take unnecessary, often stigmatizing actions” (p. 4). Thus, explaining how
individuals in the health field need to be properly educated so they are properly trained
on how to behave and confront those with this disease. So these individuals won’t
stigmatized and can teach those not in the health field not to stigmatized too.

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The second level is environmental. Environmental level is described as making
sure programmes ensuring health workers having the information and supplies necessary
to practice and have the precautions necessary not to contract HIV. Making sure relevant
policies and other critical information is posted in visible areas for workers to be
knowledgeable.
The final level is the policy level. At the Policy level, the scholars explained how
there is a lack of specific policies or laws related to HIV discrimination. Nyblade et al.
state, “health facilities need to enact policies that protect the safety and health of patients,
as well as health workers, to prevent discriminations against people living with HIV”
(p.4). Studies have shown that stigma reduction activities led to positive changes in
health providers’ attitudes and behaviors towards HIV - positive patients. Nyblade et al.
give an example from a stigma- reduction intervention held at Vietnamese hospitals. The
percentage of hospital workers stigmatizing patients reduced after the interventions. At
one hospital, the percentage declined from 56% to 31% stigmatizing HIV patients and at
another hospital the percentage declined from 31% to 17%. The improvements included
the use of universal precautions, increased voluntary HIV testing of patients and reduced
the marking of files and beds with patients diagnosed with the disease. The intervention
accomplished the reduction of stigma within a six-month period through programmatic
steps including: training for hospital workers to learn about how to contract the disease
and staff of the hospitals to foster policies to prevent stigma behaviors.

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Heijnders and Van Der Meij (2006) also looked at how intervention can help fight
stigma and identified five levels of intervention. The scholars discuss how individuals
diagnosed with diseases such as HIV/AIDS, mental illness or even leprosy have been
stigmatized or discriminated against by others who aren’t diagnosed with these “bad”
diseases. By hosting interventions and having strategies implemented at multiple
different levels, it can help those diagnosed with stereotypically diseases like
“HIV/AIDS” not stigmatized against themselves and come together and empower others
diagnosed or not, to not stigmatized against their community. According to the scholars,
the five different levels are: ‘Intrapersonal level,’ ‘Interpersonal level,’
‘Organizational/institutional level,’ and ‘Community level and Governmental/structural
level.’
The first level Heijnders and Van Der Meij introduces to readers is the
‘Intrapersonal level.’ The ‘Intrapersonal level’ is explained as being made up from three
different strategies which include interventions and self-help, advocacy and support
groups. Participating in an intervention at the intrapersonal level can provide individuals
with knowledge, coping skills, tips on improving self-esteem which in result will help
with individuals with behavior changes. At the intrapersonal level is significant in order
to help people affected with these diseases not internalize stigma. Especially those
affected who begin to isolate themselves and placing blame for why they contracted this
disease. Self-help, advocacy and support groups is another important strategy in the
‘Intrapersonal level,’ because it helps those affected by the disease cope with the reality
of having the disease and connect with other going through similar situations. Heijnders

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and Van Der Meij pulled from Lyon and Woodward (2006) study on African-American
teens who were HIV-positive. They were a part of a support group which lasted from
eight to 30 weeks. After completion a qualitative analysis revealed the youths who
participated thought the program was a success.
The second level Heijnders and Van Der Meij discuss is ‘Interpersonal level.’ The
authors explain that the goal for the Interpersonal level is modifying the diagnosed
individual’s environment. This can include home with their families or at work when
around employees. The family members, potential health care providers and co-workers
can come with stigma - so it is important they are fully educated and knowledgeable
about the disease and how to contract it. Based on this article Heijnders and Van Der
Meij state, after having interventions with home care team members it reduced the stigma
they had towards their patients.
The third level Heijnders and Van Der Meij present is, the ‘Organizational and
Institutional level.’ They describe this level as aiming to change how to modify health
and stigma-related aspects on an organizational level. Heijnders and Van Der Meij draws
from Foreman, Lyra and Breinbauer (2003). They found about 10-20% of health workers
hold negative attitudes towards people living with HIV/AIDS. These fears come from
transmission, disapproval of the actual or presumed lifestyle and resource constraints.
These negative attitudes began to prompt trainings and workshops for workplaces of
affected individuals to teach unaffected individuals how to contract the disease and not to
discriminate those affected by HIV/AIDS.

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The fourth level Heijnders and Van Der Meij introduces to readers is the
‘Community level,’ which is aimed at “increasing knowledge regarding health conditions
and regarding stigma within specific community groups” (p.358). By doing this it can
provide better services for people affected with those stigmatized diseases. Education is
the first step in reducing stigma at the community level. By providing education in
settings such as workshops, this platform can inform the general public and community
groups about a specific illness it provides facts and counters false information which
stigma is typically based on. Heijnders and Van Der Meij found that Educational efforts
effective improving knowledge on HIV/AIDs transmission but not contracting casual
contact. Educational campaigns proved too successful in reducing leprosy related stigma.
Although, education is a strong approach to end stigma, still some individuals are
unwilling to change. Which is why contact is another strategy under this level. This is
defined by direct face- to face interactions or learning indirect like from the media. For
example, when someone who is influential or famous comes out and saying they are
diagnosed with a disease that is stigmatized it changes the public perception. When
popular basketball player Magic Johnson openly admitted he had HIV, it helped
eliminate the perception that this was a “gay man’s” disease.
The final level Heijnders and Van Der Meij introduces to the readers are, ‘The
Governmental and Structural level.’ This level, according to Heijnders and Van Der Meij,
focuses on how legal and policy interventions help protect the right of people affected
with stigmatized disease. Heijnders and Van Der Meij draws from The World Health
Organization (WHO) (2002), argued that, ‘‘policies on discrimination, access to

27. 27
prevention and care, confidentiality of care and individual’s rights can make a significant
impact” (p. 360). How law and policies how diseases like TB become less stigmatized,
especially as more knowledge and medical treatments were improved.
Summary
In looking over the literature review there are several key points that can be
observed about disease stigma and campaigns to fight disease stigma. First, regarding
stigma, one knowing what stigma is and acknowledging the negative impacts on those
diagnosed with “negative diseases.” Second, the scholars seem to agree that there are
several key factors that successful anti-stigma campaigns have such as: educating the
public and providing awareness to the disease or issue. Last, the scholars seem to agree
that policies can protect against stigmatizing individuals with “bad diseases.”

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III. Methodology
The research question this study poses is: how can an organization fight disease
stigma, specifically lung cancer? According to Apollonio and Malone (2008), “media
campaigns are widely recognized as useful public health tools, particularly given that
mass media campaigns can, by themselves, change health behavior without the need of
multiple channels of communication” (p.483). To address the question, a qualitative
research methodology will be used. The methodologies include a case study and textual
analysis. Case studies explore new advancements or behaviors that aren’t well grasped
(Meyer, 2001).
I am using a case study approach because it will allow me to look at various
public health campaigns such as: the ‘Truth Campaign’ which was targeted to youth to
show the dangers of smoking. The HIV/AIDS public health campaigns taught the public
how the disease was transmitted and even the success of breast cancer campaigns. This
approach will also grant me the opportunity to examine what is stigma and how it affects
those who are being a victim of it, based on being diagnosed with a ‘negative’ disease.
Lastly, I have a personal interest in implementing a successful health communications
campaign in the near future for another stigmatized disease, lung cancer.
Advantages
There are advantages of using a case study approach for this research question
because there is no one way to implement a successful health public communications
campaign. Also, there is more than one way to evaluate if the campaign was successful.

29. 29
Yin (2003) states that case studies are a mix of qualitative and quantitative evidence. Yin
also adds, preferred case studies strategies are questions being posed and the focus has
some real-life context. This capstone is not only exploring real life health campaigns of
various diseases like HIV/AIDS but it takes into consideration why people, prior to these
campaigns are stigmatizing those individuals diagnosed with ‘negative diseases.’ Using
this approach gives me the opportunity to look at multiple ways of understanding stigma
and the preparations of how to execute health campaigns.
Disadvantages
Yin states to the readers there are multiple tactics for a case study approach. For
example, a reader could choose to use multiple sources of evidence, like myself, or use
logic models, use theory in single case studies or etc. This could be overwhelming since
there are so many great ways to design an informative case study. This could also be
confusing to try to differentiate the best tactics to design around your research question.
Another disadvantage is evaluating evidence. Since case studies are a mix of qualitative
and quantitative evidence, it could be difficult finding a definitive answer or result,
depending on your research question.

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IV. Case Profile
This section presents the case profile of Lung Cancer Alliance effort to fight the
stigma of lung cancer.
Background
The Lung Cancer Alliance was founded in 1995, it is the eldest non-profit that
dedicating to saving lives and advancing research focusing on lung cancer. This
organization offers personalized support through a team of trained staff member. LCA
also advocates for increased lung cancer research and funding for treatment and
diagnostics. Lastly they provide education campaign about the disease.
According to the Lung Cancer Alliance’s website, their mission is, “Saving lives
and advancing research by empowering those living with or at risk for lung cancer.” The
Lung Cancer Alliance vision is, to triple the survival rate by 2020, the current five-year
survival rate is 17.8%. This percentage is lower than other leading cancers such as: colon
65.4% or even breast 90.5%, according to the American Lung Association.
The LCA has several avenues to fight lung cancer stigma, which are presented
below. The first avenue that will be discussed is policy/advocacy.

31. 31
Policy/Advocacy
First LCA focuses on policy and advocacy. According to the website, LCA
believes that advocacy will help successfully end stigma in the lung cancer community.
LCA made advocacy a priority in 2005. According to the LCA website, the government
is the largest funder for all cancer
research. According to the research
LCA provides, however the
government does not invest much
compared to other cancer research or
diseases. Even after research shows,
“lung cancer is leading cause of
cancer related deaths in the United
Stated and second leading cause of
all deaths - blame, stigma and shame
prevents people from being heard,”
states the LCA website. Therefore, the LCA is presently focused on advocating that the
federal government put more policies in place to invest more money in the near future for
lung cancer.
The LCA website lists several policies victories that were put into place to
increase funding towards lung cancer research and treatments. A first policy the Lung
Cancer Alliance put in place was ‘The Recalcitrant Cancer Research.’ This act was
signed into law by President Obama in 2013 and was included into the National Defense

32. 32
Authorization Act of 2013. This policy requires the National Cancer Institute (NCI) to
develop scientific frameworks for cancers with survival rates less than 50%, first priority
attention to lung and pancreatic cancers.
Another second policy listed on the website was through, the “Defense
Authorization Bill.” Through the organization’s efforts was the creation of the first Lung
Cancer Research Program within the Congressionally Directed Medical Research
Program (CDMRP). This bill has secured funding up to $80 million towards lung cancer
research.
A last policy related accomplishment LCA list on their website is securing $100
million in lung cancer research projects, outside of the National Cancer Institute. This
was secured by the organization in 2008 and Congress has been required to maintain the
program annually.
Activities/Events
In addition to the Lung Cancer Alliance’s policy work, the organization website
lists activities and events they host to raise awareness and funds for the lung cancer
community.
One of the many events listed on the LCA website is the annual ‘National Lung
Cancer Summit.’ The event is over a span of three days. During those three days LCA
states attendees have the opportunity meet other lung cancer survivors and their loved

33. 33
ones. In addition to this, attendees receive learn the legislative process and about health
policies to increase lung cancer research funding. The focus of this event is making sure
the voices of the lung cancer community is heard on Capitol Hill. This year will mark the
eighth year the LCA has hosted these events.
A second event listed on the LCA the organizations hosts is their annual, ‘Shine A
Light.’ ‘Shine A Light’ according to LCA’s website, this is the largest awareness event
for lung cancer in America. During this event, attendees learn more about advances for
survival. People within the lung cancer will have the opportunity to network and provide
support to those recently diagnosed or currently battling the disease. Also, survivors will
be honored during the affair. The Lung Cancer Alliance website explains the structure of
‘Shine A Light’ as forums held across the United States. People interested in hosting a
‘Shine A Light’ event can contact a staffer from LCA and the they will provide
information and materials to provide guest attending. ‘Shine A Light’ forums are held
during the month of November, in honor of Lung Cancer Awareness month.
The third event listed on the Lung Cancer Alliance website the ‘Lung Love
Run/Walk.’ According to LCA, the goal of these walks LCA are to Join, Move and Unite
the lung cancer community. LCA wants lung cancer survivors to know they are not only
and to unite those impacted by this disease. These walks are all over the country during
different months. By visiting the website an individual can register in the city or state of
their choosing. One could register as an individual or group for a nominal registration fee.
Children under the age of four are free and lung cancer survivors all ages. Also with the

34. 34
‘Lung Love Run/Walk,’ an organizations or individuals could create a campaign and the
funds would be designated towards this event.
The Lung Cancer Alliance has a list of other events and activities they host but
are not regular like the three listed above. Others LCA events range from bike-a-thons,
golf or tennis tournaments, online auctions, benefits concerts or open to suggests of the
public - to host. These events are all across the United States. According to LCA, the goal
is to raise awareness and educate public. The proceeds go back to the national office of
the LCA.
Support
Another avenue listed on LCA’s website for individuals are ‘Support Service.’
LCA’s support services are free of charge for individuals interested. The organization
offers six different ways for those seeking support or resources about lung cancer. One
way is the LCA ‘Unite Mobile App.’ According to the website this app is the first of its
kind. This gives a person access to local resources for support groups, events or treatment
center. This app also offers a 24/7 chat feature - to speak with other survivors or those
impacted by loved ones. It also gives you the option to track your health progress.
A second avenue for support is their ‘Lung Cancer HelpLine.’ Again, this service
is free and phones lines are open 9 a.m to 5 p.m. eastern time. According to the website,
the lines are answered by trained professionals that provide information about the disease
or concerns the person calling may have.

35. 35
A third channel for support is the ‘Phone Buddy Program.’ LCA describes this
program as a peer program for those diagnosed with cancer. LCA further explains, the
cancer patient calls the organization and is matched with a buddy. LCA will screen that
individual by asking what stage is the person diagnosed, what are their hobbies, and other
topics that diagnosed patient likes to discuss. LCA will then pair them with a buddy they
have contact information for - this buddy is not necessarily a medical professional, just
someone to talk too.
A fourth option LCA offers is ‘The GUIDES Program.’ ‘GUIDES’ stands for:
The Grief and Understanding In Death and End-of-life Support program. Similar to the
‘Phone Buddy Program,’ the Lung Cancer Alliance’s describes this programs for those
who lost a loved one to lung cancer. Callers are matched with a ‘GUIDE,’ then have an
opportunity to discuss their grief. To be matched with a ‘GUIDE,’ an individual can visit
LCA’s website, call the 1(800) number listed or email a staffer. The goal of the ‘GUIDE’
according to LCA is to help the person who lost someone to lung cancer cope and share
their story.
A fifth option is the ‘National Lung Cancer Support Group Network.’ The LCA
website will help connect people to a support group in their area. On the website it lists
options in different areas across the United States to join a face-to-face support group. If
one doesn’t see an option in their area, a number is listed to help an individual find a
‘Lung Cancer Support Group.’

36. 36
The last option that is offered on LCA’s website is the ‘Clinical Trial Matching
Service.’ According to LCA there hundreds of clinical lung cancer trials over the U.S.
This support option gives lung cancer patients the information needed to find the right
clinical trials based on their needs, according to the Lung Cancer Alliance website. The
matching tool is powered by Emerging Med. Individuals still have the option to call a
number listed on the website if they prefer to receive emails or hard mail about clinical
trials in their area.
Communications
The LCA website shows they use multiple social media platforms and outreach to
deliver their message to educate the public on lung cancer. LCA is active on Twitter,
YouTube, LinkedIn and Facebook. On Twitter LCA has over 4,800 followers. LinkedIn
has 485 followers, YouTube has 146 subscribers, 43 videos and over 190,000 views and
Facebook has over 56,000 likes for the page. LCA posts range from promoting events,
sharing facts on lung cancer like, “every day 44 women die of lung cancer.”
LCA also post content such as support services they offer, inspiring quotes and
spotlights on lung cancer survivors or supports for the community. LCA also has a guest
blog. This is where lung cancer survivors share their stories and show how they are living
since being in remission.

37. 37
The videos/photos LCA post include
stories from those who have been
personally affected by the disease, either
being diagnosed or having a loved one
being diagnosed. For example, one
posting is focused on their latest
campaign, ‘How it Feels.’ This campaign
is gives individuals a peek into what someone with lung cancer goes through. LCA
describes the feeling as drowning or being hit by a train, as you can see in the pictures
provided. LCA is using their social media to promote this campaign to raise awareness,
as well as the radio and television commercials. The promotional videos for this
campaign have the highest views on the YouTube channel.
LCA also uses traditional media tactics to share their research such as, a fact
sheet. The fact sheet includes the most up to date facts on lung cancer like, how much
federal funding is going towards lung cancer research and up-to-date death rates.
Summary
In summary, this case profile explores facets of how the Lung Cancer Alliance
delivers it message to the public and the lung cancer community.

38. 38
V. Case Analysis
This section returns to the original purpose of this study, which is to understand
how to fight disease stigma, specifically looking at the Lung Cancer Alliance, an
organization that is currently fighting to end the stigma of lung cancer. Based on the
profile there were three observations: 1) the importance of policy/advocacy; 2) the need
to educate the public; and 3) the use of multiple avenues to reach the public. These
observations are discussed is policy and advocacy below.
Observation one: Policy/Advocacy
The first observation is the importance of policy and advocacy in laying a
foundation. Examples from the case profile of this observation are the specific policies
victories of the Lung Cancer Alliance such as: ‘The Recalcitrant Cancer Research.’ This
particular policy made it possible for lung cancer to receive first priority from the
National Cancer Institute when seeking cures and/or treatments to end the disease.
Another example of a policy victory for LCA was the, ‘Defense Authorization
Bill.’ This bill secured $80 million benefitting lung cancer research. A final example was
the Lung Cancer Alliance securing $100 million going towards lung cancer research
projects. This was a policy victory because LCA website stated that limited federal
funding was going towards lung cancer research.
The importance of policy was emphasized by scholars Nyblade, Stangl, Weiss
and Ashburn (2009). The scholars explain the importance of policy combating stigma

39. 39
stating, “health facilities need to enact policies that protect the safety and health of
patients, as well as health workers, to prevent discriminations against people living with
HIV” (p. 4). Nyblade et al. further explained prior to specific laws and policies related to
protect individual’s HIV/AIDS positive, these people were stigmatized, even by health
professionals who were aiding them.
Heijnders and Van Der Meij also emphasized the importance of policy. Heijnders
and Van Der Meij argued, “policies on discrimination, access to prevention and care,
confidentiality of care and individual’s rights can make a significant impact” (p. 360).
They further explain this by pointing out how law and policies protected individuals who
tested positive to TB. This policy step helped people with TB become less stigmatized by
others who do not have the disease. These scholars also drew from the WHO that argued,
“policies on discrimination, access to prevention and care, confidentiality of care and
individual’s rights can make a significant impact.”
Burris (2002) discusses the importance of policy for individuals being stigmatized
because a certain disease. Burris states, “stigma is a potentially important source of social
risk. Because the stigma may be enacted in discrimination, it makes perfect sense to enact
laws that protect people with stigmatized traits from discrimination” (p.182). Burris
explains, having to look how these laws will play into the prospective of seeing how
those stigmatized individuals are being protected.

40. 40
Observation Two: Educating Public
The second observation that emerged in the analysis of the case study was the
significance of educating the public on stigmatized diseases.
Education is important for the public for fighting stigma. There are several
prominent examples in the case profile of LCA of activities and outreach that serve to
educate the general public. One example is the Lung Cancer Alliance activities is their
‘National Lung Cancer Summit.’
The ‘National Lung Cancer Summit’ is an opportunity for the public to learn the
legislative process of how funding is delegated to lung cancer research and treatments.
During the summit attendees have the opportunity to meet and hear stories from lung
cancer survivors. Also, the attendees personal visit Capitol Hill to make sure politicians
are aware of the disease statistics, make fair decision for lung cancer research, and to
ensure appropriate funding.
Another educational event held by LCA is ‘Shine A Light.’ ‘Shine A Light’ is a
national event where individuals learn about the advances of lung cancer and survival
rates. The event is also an opportunity to honor those who have recently diagnosed or
battling the disease. The honorees and participants additionally have the chance to
network with those as part of the lung cancer community.

41. 41
The final event held by LCA is the ‘Lung Love Run/Walk.’ The purpose of
run/walk is to unite the lung cancer community through a physical event. The event
provides a chance to see that there many people who have been impacted by this disease.
It is also another opportunity to unite and strengthen the lung cancer community across
the United States and learn about the disease.
Education is important according to scholars because it helps combat disease
stigma. It teaches how the stigmatized disease is transmitted and how those stigmatized
are impacted. According to Heijnders and Van Der Meij (2006) education is the first step
to reduce stigma. As Heijnders and Van Der Meij explain, “increasing knowledge
regarding health conditions and regarding stigma within specific community groups”
(p.358). The scholars add, “by doing this it can provide better services for people affected
with those stigmatized diseases” (p.358). The scholars cite examples of hosting
workshops as an opportunity to provide information to the public about a disease and
counter false information people may believe. Heijnders and Van Der Meij also
document several public health campaigns that proved to successfully educate the public
on the diseases, specifically HIV/AIDS. Those campaigns contributed to reducing stigma
towards HIV/AIDS patients.
Another scholar who discusses the importance of education is Chao and So
(2011). Chao and So state, “provide basic education on disease transmission,
consequences and prevention” (p.50). Chao and So gave the example of hosting
community outreach at the Chinese New Year Celebration. Hosting an informational

42. 42
booth was an opportunity to provide guest with facts on the stigmatized disease. Chao
and So also discussed examples of publics receiving education on stigmatized diseases
through public health campaigns. Chao and So detailed how a public communications
health campaign helped improve the lives of Asians and Pacific Islanders (API) who had
had a limited awareness Hepatitis B and liver cancer. Prior to the campaign a high
percentage of the API community were contracting the disease, yet they were not fully
educated on how or why they were contracting the disease. The campaign that educated
this population was called the ‘Jade Ribbon Campaign,’ which shared how the disease
was contracted and encourage others to spread the message through the jade ribbon. Chao
and So stated that this campaign successfully promoted health and education, rather than
just focusing on negatives such as death rates.
Lastly, Nyblade, Stangl, Weiss and Ashburn (2009) discussed using education to
inform the publics about stigmatizing diseases. Nyblade et al. research focused on
educating health workers. As Nyblade et al. state, “health workers fears and
misconceptions about HIV transmission must be addressed … and fear of acquiring HIV
through everyday contact leads people to take unnecessary, often stigmatizing actions”
(p.4). The scholars explain how individuals in the health field need to be fully educated
and properly trained on how to behave and confront individuals diagnosed with
HIV/AIDS, a stigmatized disease. Health professionals who are properly educated helped
other professionals not stigmatized the patients they are serving.

43. 43
Observation Three: Multiple Avenues to Reaching Public
The last major observation that emerged from the analysis of the case study was
seeing how they are multiple channels and avenues for communicating to the public
about misconceptions and possible fears on stigmatizing diseases.
It is important to have multiple avenues for reaching publics not only for
education but also awareness about stigmatized diseases and its effect. LCA illustrated
the importance of having multiple channels through its various communications and
social media platforms.
One prominent communication avenue LCA uses to reach out to publics is
through social media. LCA has website, newsletter, Facebook, twitter, YouTube. Social
media provides a way to not only connect with the lung cancer community but the health
community as a whole. LCA is active on YouTube, Facebook, Twitter and LinkedIn.
LCA communicates on these channels facts on lung cancer like the survivor rate and
inspirational quotes to those diagnosed with the disease. LCA also uses these channels to
promote awareness campaign like, ‘How it Feels.’ This campaign show images and
pictures of how an individual with lung cancer feels daily. It also provides facts on the
disease along with stories.
One example of social media as an avenue LCA uses to reach the public is its
mobile app ‘Unite Mobile App.’ This free app provides educational resources to
individuals of the lung cancer community 24/7. It also has a chat feature to speak to

44. 44
individuals diagnosed, in remission or someone who recently lost a loved one to lung
cancer.
Another LCA example uses to reach out to the lung cancer community is the LCA
website, which includes a ‘Lung Cancer Help Line.’ The Helpline provides over the
phone comfort and information on lung cancer to those individuals wanting to seeking
guidance. Individuals learn more about the disease from trained professionals. Callers
also have the opportunity to speak with an expert who knows how to speak with people
who are currently battling lung cancer too.
In addition to electronic media, LCA also has several interpersonal channels to
educate and reach out to the public. One avenue the Lung Cancer Alliance uses to reach
out to the public is through support services. For example, the LCA offers as an option to
reach out to lung cancer patients is the ‘Phone Buddy Program.’ This support feature is a
peer program. Meaning lung cancer patients have the opportunity to be matched by LCA,
with a person who share similar interest as they do. Giving the patient the opportunity to
have a friend to talk to during this stage in their life.
Another interpersonal channel of support the Lung Cancer Alliance offers is ‘The
GUIDES Program.’ This method is a way reaching out to publics and offering support to
those who lost a loved one to lung cancer. The person would call the number listed on
LCA’s website and an GUIDE will talk the person through grief and console the caller
during their difficult time. A final example of a channel LCA uses to offer support for

45. 45
individuals is the ‘National Lung Cancer Support Group Network.’ This method of
reaching to the public is an interpersonal approach for those needing support and in their
local area and wanting to learn more.
LCA also has several specialized communication channels for reaching and
connecting people. For example, LCA’s website includes ‘Clinical Trial Matching.’ This
channel of reaching the public is a medical approach for lung cancer patients. This is a
way for those to learn the science of the disease and treatments to cure it. It offers teaches
those patient best nutritional practices. It also gives information on available clinical
trials for patients.
The last avenue LCA uses to reach out to the public is traditional communication.
LCA provides fact sheets that give a snap shot of the disease statistics. LCA also features
in-depth charts on the website providing facts on lung cancer and how the survival
compares to other leading diseases and cancers. LCA is accessible across the United
States and is mobile friendly.
Using multiple avenues for reaching publics is important according to scholars
because it helps educate the public about the disease on a larger scale. According to
scholars Farrelly, Nonnemaker, Davis, and Hussin (2009) using television for a health
campaign can help build exposure. As Farrelly et al. state, “if 75% of the target audience
saw a commercial four times in a given quarter, this would translate into 300 Gross
Rating Points (GRPs) … and, this measure represents an adolescent’s potential exposure

46. 46
to the campaign” (p.380). The scholars discuss how the Truth campaign used television
as a successful method for reaching their intended target audience.
Heijnders and Van Der Meij (2006) highlight another avenue important
reaching the publics, namely, the ‘Intrapersonal level.’ Heijnders and Van Der Meij
explain, the intrapersonal level is significant in order to help people affected with these
diseases not internalize stigma. Individuals can avoid internalizing stigma by speaking
with others who are diagnosed with the disease and speaking with specialists who teach
them how to cope and continue to live with it. Heijnders and Van Der Meij also explain
using influential persons as an avenue to reach the public. Heijnders and Van Der Meij
explain, when someone famous publicly admits to having a stigmatizing disease it
changes the public perception. Heijnders and Van Der Meij used the example popular
basketball player, Magic Johnson openly admitting to having HIV. This helped eliminate
the perception that HIV was a “gay man’s” disease.
Jacobsen and Jacobsen (2011) also discussed celebrity influence as a medium for
reaching the public. Jacobsen and Jacobsen used the example of former First Lady, Betty
Ford who announced to the public she had breast cancer. Jacobsen and Jacobsen credited
Ford’s public announcement for motivating more women to get tested and learn more
about the disease.
The last scholars advocate using multiple avenues to reach the publics are Chao
and So. Cha and So explain how a brochure helped informed the public about hepatitis B.

47. 47
As Chao and So state, “brochures served as a convenient and accessible means of
educating different segments of the target audience” (p. 49). For example, brochures were
created for intended audience and provided brief but important information on the
disease.
“The campaign included linguistically and culturally targeted newspapers,
magazine, television, and radio public service announcements (PSA), supplemented by
comprehensive educational brochures, web-based resources and informational hotline”
(p. 49). Chao and So also explained, PSA’s featured prominent Asian celebrities to help
deliver the message to the API community. These multiple media avenues were used to
inform the publics about the stigmatized disease and educate individuals on the facts and
science.
Summary
Overall, it appears that LCA is effective in their fight to end stigma and bring
awareness to the lung cancer community. The tactics LCA used appear to mirror what
scholars found to be successful with other disease that were once stigmatized or received
low federal funding. Lung Cancer Alliance efforts are theoretically sound and based on
past success on the importance of 1) policy and advocacy; 2) educating the public, and 3)
using multiple communication channels.
Recommendations
Although LCA appears to be successful, there are a few recommendations to
improve its work.

48. 48
1) Social Media
My first recommendation is in regards to their social media efforts. Even though
the organization is active on social media, LCA needs to focus on getting more followers
and engagements. For example, on Twitter they have 4,854 followers with only 2,900
tweets. Compared to the American Cancer Society, which has over 630K Twitter
followers and over 5,400 tweets. Meaning the American Cancer Society is reaching a
larger public than LCA. LCA needs to make sure they are actively reaching out to publics
through social media, especially considering this is the digital age.
2) In Memory
My second recommendation is to establish an “In Memory” section on the
website. It is great that the organization loves to pay homage to those survivors of the
disease but where is the section to honor those who have passed? The survival rates are
still pretty low compared to other cancers. If there is such a section, it should be as visible
and promoted for those who are in remission.
3) Media Archives
My third recommendation is having past media coverage available in a media
archive in the for media section. As a potential donor or supporter it is great to see what
LCA has done in the past. Having some of that information archived is a way to learn
more from others who worked with the organization. It gives the reader a third party’s
opinion of what the organization is doing for the lung cancer community.

49. 49
4) Strategic November Activities
My fourth recommendation is hosting more events in the month of November.
November is ‘Lung Cancer Awareness Month.’ When looking under the events section
they list only one event during this month. If LCA is trying to gain more attention for the
disease, let’s do it strategically during the designated month. It is an opportunity to learn
about others who are advocates of the disease and to partner with them to help educate
the public on the cancer. The LCA should also host a summit in that month, to educate
the public and try to do advocacy work during that month.
5) Website
My fifth recommendation is re-designing the website. Although LCA’s website
provides a wealth of information regarding lung cancer, at times it was difficult finding
that information. For example, the website has many pages that have similar titles, so you
may think certain content will be under one page but it is under another page. I
recommend having less pages and trying to have similar content under one page. Or,
having links to the other page that has the similar content. Also, making the website more
user friendly. Some content is not accessible on mobile devices; I suggest having a search
box on the home bar. With the addition of these components, if someone is looking for
something particular, they could find it easier and more efficiently.

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6) Logo
My sixth recommendation is creating a logo for lung cancer. When surfing the
internet or the LCA website there is not a logo that represents lung cancer. I believe by
creating a ribbon for lung cancer it helps with branding and a way to identify supporters
for the disease, specifically when speaking to the public or media. This method of
branding has been proven successful when identifying the breast cancer, heart disease
and the HIV/AIDS community. This way supporters can use this logo for future
communications, promoting the disease on social media and wearing it on gear during
marathons or walks.
7) Celebrity endorsements
My last recommendation is getting an endorsement from an influential person or
celebrity. From the scholar’s research and examples, it has been shown that gaining
support from a celebrity can help end stigma and make individuals want to learn more
about the disease. Celebrity either personally admitting to having the disease or speaking
on it helps change the perception of fear. Not only does it help eliminate fear but
encourages individuals of not being afraid to speak up and out on the disease, too.

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VI. Conclusion
The survival rate of lung cancer is still low compared to other cancers. According
to the Lung Cancer Alliance it is 16%, over a span of five years the survival rate only
went up 3%. Compared to colon cancer which went up 14% over a span of five years.
However, they are organizations like the Lung Cancer Alliance fighting to change
those statistics. This study explored how the LCA is fighting to end disease stigma
amongst the lung cancer community.
The LCA is fighting to end disease stigma through their advocacy and policy
efforts to get more federal dollars allocated to lung cancer. LCA also hosts
activities/events throughout the United States, promoting awareness to the disease and
educating the public about diagnoses and treatments. The organization also provides
support. Through LCA’s support groups, people diagnosed with lung cancer or those who
lost someone have the opportunity to connect who personally understand what they are
going through. It also provides an opportunity to learn emotionally and physically how to
fight and continue daily activities.
Among the significant findings was the importance of policy in fighting stigma.
Some of the policies LCA helped put in place are critical. For example, the ‘Recalcitrant
Cancer Research Act’ requires the National Cancer Institute to prioritize cancer with
survival rates of 50 percent.

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Another significant finding was the importance of education. For example, the
Lung Cancer Alliance stated on their website, stigma is the reason for the low funding of
lung cancer and the awareness it needs to find treatments and support the disease needs.
In looking to the future, the next direction the Lung Cancer Alliance needs to
focus on is a national public health campaign, such as the ‘Jade Ribbon Campaign.’ That
campaign was targeted to the American Pacific Islander (API) community. The campaign
successfully made the API community aware about hepatitis B and learn about the
transmission of the disease. LCA needs to strategically pull together the cancer
community as a whole to help promote and bring awareness to the disease and focus on
which demographic to target first.
Additionally, more scholars and scientists need to focus on the stigma of cancers
other than breast cancer. Scholars seem to talk a lot about HIV/AIDS but the survival rate
has risen tremendously compared to lung cancer. Thus, it is important to focus on getting
scholars to talk about the disease too because there is very little if any information
discussing stigma around lung cancer.
The pressing issue is people do not realize that lung cancer is more than a
smoker's disease. The longer people stigmatized the disease the longer it will take for
politicians to allocate the funding it needs to find a cure sooner to cure it. Overall, the
Lung Cancer Alliance is doing a great job in fighting to end the stigma around lung
cancer but as my study shows there is still more work to be done in the future.

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VII. References
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