HPV-Related Cancer and MSM: Can community intervention reduce incidence?

Author: Carmenisha Ward

 

My collaborative research efforts this summer taught me that social determinants play a huge role in the quality of healthcare that an individual receives. A person’s neighborhood,income, education, skin color and even sexual orientation determines the type of medical attention that person can access. Social determinants also influence which people have a higher probability of contracting certain illnesses. If a person happens to have the “wrong”skin color or the “wrong” income, he or she has a higher probability of having limited access to resources that are readily available to those with all the “right” social attributes. This situation is the definition of a disparity.

According to the CDC, the top candidate for HPV-related cancer is the MSM community.

What Disparity and Why?
The leading cause of all HPV-related cancers is, of course, HPV. So what is it and why is the MSM population so vulnerable?

● HPV, also known as human papillomavirus, describes a group of over 150 viruses. With over 14 million new infections each year, HPV is the most common sexually transmitted infection (STI) in the United States. Most of the HPV related incidences of cancer are caused by high-risk viruses type 16 and type 18.(1)

● HPV high-risk viruses are reported to be responsible for 2% of new cancer cases, which is over 30,000 incidences. The majority of these incidences will be MSM. (1)

● According to the CDC, HPV incidence rates are increasing in MSM compared to other cohorts, such as heterosexual men and women. (4)

● Research also reveals that although a significant portion of the MSM population has heard of HPV (74%), less than half know that the STI causes health problems for males and even fewer had knowledge about associated illnesses such as cancer. (3)

● A significant portion of the MSM population has HIV, which weakens the immune system. (1)

Eliminating the Disparity
There is strong indication that education is the biggest gap that creates the disparity for the MSM community. After being educated about HPV-related cancers, the following was said by members of the MSM community:

“I had no idea that it caused all of those cancers. I think if that was made public knowledge [people would get vaccinated]”

“knowing the facts is the most important part because once you know then you realize this shouldn’t be disregarded and there’s a vaccine you should probably get”.(2)

In order effectively reach the greatest number of people we have to work with community organizations. The MSM community prefers organizations that welcome and support their sense of identity. Places that already have an established relationship with MSM are the best places to implement an education program because they already know the population and how to best relay the necessary information. The MSM will also have the opportunity to come back to get more information if necessary. If this population can be empowered with knowledge, they will have the ability to make sure they can approach their healthcare provider to ask for the necessary preventive care.

Conclusion

There’s an old saying, “If you know better, you do better.” Information has to be given to as many people as possible in language that is easily understood by the people. As more community organizations begin to gain reputations as health literacy hubs, I believe that the MSM HPV-related cancer disparity will start to disappear.

References:
1. Centers for Disease Control and Prevention. (2017, April 26). Retrieved from https://www.cdc.gov/
2. Fontenot, H. B., Fantasia, H. C., & Zimet, G. D. (2017). Increasing HPV Vaccination and Eliminating Barriers: Recommendations From Young Men Who Have Sex With Men. Journal of Adolescent Health, 60(2). doi:10.1016/j.jadohealth.2016.10.424
3. Koskan, A. M., & Fernández-Pineda, M. (2018). Human Papillomavirus Vaccine Awareness Among HIV-Positive Gay and Bisexual Men: A Qualitative Study. LGBT Health, 5(2), 145-149. doi:10.1089/lgbt.2017.0109
4. Welbeck, M. (2016). Anal Pap Screening for HIV-infected Men Who Have Sex With Men: Practice Improvement. Journal of the Association of Nurses in AIDS Care, 27(1), 89-97. doi:10.1016/j.jana.2015.08.008

 

Disclaimer

The views expressed in this paper are exclusively those of the author and not necessarily representative of the organizations the author represents nor the ChicagoCHEC organization. This work is solely intended to help further disseminate information related to ChicagoCHEC’s cause and stimulate dialogue about important topics. It is not a report by ChicagoCHEC itself and must not be treated as such.

Commentary: Networking as a form of advocacy

Commentary: Networking as a form of advocacy

 

Author Information: Estefania Perez-Luna, BS Health Science, Benedictine University, ChicagoCHEC Research Fellow.
Author Background: Estefania is an emerging bilingual health professional with experience with immigrant Spanish-speaking communities. She is a recent first generation college graduate from Benedictine University with a degree in Health Science and aspires to become a physician with a dedication towards marginalized communities of color.
Conflict-of-interest Disclosures: There are no conflicts of interest present.
Author Correspondence: email: [email protected]
Disclaimer: The views expressed in this paper are exclusively those of the author(s) and not necessarily representative of the organizations the authors represent nor the ChicagoCHEC organization. This work is solely intended to help further disseminate information related to ChicagoCHEC’s cause and stimulate dialogue about important topics. It is not a report by ChicagoCHEC itself and must not be treated as such

 

Several weeks into the ChicagoCHEC Fellows Program, I came to learn several important lessons. One particularly stands out to me as a first-generation rising health professional. That is the concept of mentoring and along with it networking and self-advocacy.

 

I never understood what people meant by “It’s not what you know, but who you know,” but I think now I understand the importance of this. And no, it does not mean that connections are all that matters, but it means that aside from your actual qualifications (“what you know”), it is the connections you make that will connect you to opportunities.
Being part of this Research Fellows Program has made me reflect more deeply on what the underserved communities face, as it relates to health disparities. I’ve learned how inequity through unequal power and unequal life opportunities in society impact the health and well-being of not only individuals but entire communities. However, I have also reflected on how this is also true at an individual level for first-generation students like myself.

 

As I alluded to earlier in the idea of unequal life opportunities, first-generation students have grown upwith social inequities. Social capital, the relationships and network that an individual uses, is one example of an unequal opportunity. Students from affluent and professional backgrounds are born with a wealth of social capital. Their families early on expose them to different careers and different opportunities. Perhaps their parents are doctors, their uncle a lawyer, or their aunt a researcher. This early exposure is crucial, as it gives them a wealth of information to consider and a world to explore which helps shape their career choices. By the time they get to college, they’ve already learned what college is and most likely have developed a wide variety of knowledge on the career choices they can make. Perhaps they’ve shadowed their parents at a hospital, or have heard countless stories from their uncle about what it is like to be a lawyer. They have had these people around them to provide advice and answer questions well before they reach college.

 

In contrast, someone like myself from an immigrant low-income family, was born into circumstances where that wealth of social capital has been missing. I, the daughter of a woman with a first grade education and the daughter of a man with a sixth grade education, could not turn to my parents or my family to find out what college was like, what being a doctor was like, or what being an engineer was like. When I first arrived to college, I did not even know what a bachelor’s degree was or what credit hours were. However, my parents did instill in me the importance of education and with that value in mind, I decided to pursue college despite barely understanding what college was about. Luckily, when I made it to college, I found myself with a few people who saw a potential in me and invested in me enough to give guidance and advice. I did not realize it at the time but I had been mentored. I continued to strive for academic excellence and with the support and guidance of others, I became the first person in my family to graduate from college.

 

During college, I did learn about the idea of mentorship but I did not have a full understanding of its importance. As I have participated in this program, I have become more informed on just how important that is and I wish I had come to this realization sooner. Listening to many healthcare professionals who come from similar backgrounds tell us about their journey into a health career, I have noticed a common pattern. They all emphasize the role that other people’s mentorship played in helping them succeed not only in college but throughout the rest of their lives in their careers. It is here I came to the realization that mentorship and networking are a crucial component to succeeding in a career. I understood that people from affluent backgrounds are born with a social network around them that is not only long term, but will also continue growing to serve as a vital resource in their career path.

 

In contrast, first generation students who are born lacking that social network, must work to fill in those gaps of by themselves. Because no one in our families can be that support and guide, we must instead seek it out on our own externally through mentors. A special emphasis should be noted on the word mentors not mentor, meaning that a network of people is essential to succ essfully navigate one’s career. Being part of the ChicagoCHEC Fellows Program, I have learned that in mentorship there is a wide spectrum in terms of types. Mentors can vary in terms of level of engagement, for example some mentors choose to take their mentees fully under their wing and follow them closely to provide ample support and guidance. Other mentors may make referrals to connect the mentee to other people or opportunities, these are called sponsors. Other mentors are less engaged and expect the men tee to approach them when necessary; they tend to provide quick advice and guidance. Additionally, mentors can vary in terms of function. Not one mentor has all the answers and knowledge on all areas, therefore, mentors can provide guidance based on specific areas of expertise. Depending on their experience, they can provide guidance on navigating college, the technicalities of a specific career, and even on creating a vision with purpose regardless of the career choice the mentee chooses. Rather than think ing of mentorship as being one person guiding someone, mentorship needs to be thought of as a comprehensive network of people that provide support and guidance to an individual.
 
Although there are formal mentorship relationships established through programs in college or in high school, the vast majority of mentor-mentee relationships happen informally, in an organic way. This is where the importance of networking comes in. Due to the lack of a professional and social network that first generation students have, it is even more imperative to develop strong networking skills. When I first learned about the idea of networking, it seemed to be regarded as a skill that people in the business field needed to have. Therefore, I did not place too much emphasis on it. These past few weeks that I have been hearing of the importance of mentorship, I have come to realize just how essential they are to one’s success. Networking skills are not optional, they are an absolute requirement. In order to catch up to more afflu ent peers who have a vast networking system and have developed good networking skills early on, first-generation students must work hard to build a network, maintain it throughout time, and build strong networking skills.

 

First-generation students are not the only ones with this disparity. Individuals with disabilities and mental illness also face these issues. Due to societal stigmatization and the lack of education support they face early on, they are in positions where their social network and their ability to develop strong social networking skills are greatly compromised. Therefore, they also must work hard to build a network and develop strong networking skills to open their paths to professional and educational opportunities.
 

Although this disparity is seen as a disadvantage, first-generation students’ experiences are meaningful in a separate way. They are experiences that cannot be overlooked because they make each person who they are. As for my experience as a high schooler and college student, while some of my peers may have been shadowing, getting guidance, and exposure to career options, I was cleaning tables at a restaurant trying to make money to support my family’s income. Even though most people would think that cleaning tables at a restaurant is a meaningless menial job, I learned so much from those early experiences working at a young age. It taught me respect for people doing these types of jobs, I developed strong work ethic, and learned to approach any task with dedication on hard work. At the same time, with my parents’ limited English proficiency, I found myself in many odd situations trying to translate for them. I not only learned responsibility and accountability, but I also learned to be an advocate for them. In this manner, I learned to advocate for myself and eventually for others. These experiences are crucial to making the person I am, and I believe the struggles first-generation students face growing up are similar and equip them with a certain set of skills and strengths.

 

The act of networking needs to be seen as a necessity because networking really is about self-advocacy. One idea I have learned is the importance to have the courage to be heard and be seen. As first-generation students, many times the lack of confidence in ourselves and our hesitation in letting our presence known in spaces that we have not been exposed to, keeps us from successfully building a professional network. Sometimes it is due to the belief that we do not belong in those spaces because we do not come from families with professional backgrounds. However, I have learned that to be invisible, to be silent, is a disservice not only to ourselves, but to those around us. As first-generation students, we have lived unique experiences that have shaped our thoughts and views, therefore the ideas we bring are valuable. By remaining silent in these spaces, we are robbing the world of the unique points of view that would make contributions in those spaces. Moreover, the act of self-advocacy through networking is also an act of advocacy for others. If we cannot learn to have courage to be heard and seen, we cannot learn to advocate for others who are not seen or heard. We owe it to not only ourselves and our families, but also to the underserved communities we represent.

ChicagoCHEC Fellow’s Perspective

By: Jasmine Richmond

When I first heard about the ChicagoCHECprogram, it sounded nice and like a good project. But all I could think of is what makes this program different from any other program that studies cancer. I thought that maybe they were testing cancer in African Americans, because I know throughout history African Americans have been used as experiments. I ended up applying and putting my heart and soul into my application hoping they felt my sincerity. No way did I think my application would be chosen, because I thought who would actually want a sick black girl to do research with. Upon receiving the news I was chosen, so many things ran through my mind, as I thought about how many other people wanted this chance. During the first week I was excited nervous and, anxious all in one, wondering about the new people I would be working with and all the new experiences I would have. During the first week I learned that there are a lot of healthcare related careers that I never knew existed.

To hear the lead cardiologist at Northwestern speak made me feel like I mattered. I never would have thought I would get to meet him unless I had a major heart problem. Dr. Yancy the lead cardiologist took time to speak to our small group which made me feel special. To hear a personal testimony from Robert Valadez , a professor from Truman College, gives me hope I can do anything. During week two I got the pleasure to meet Dr. Matthews, an incredible person doing great things in Chicago. Dr. Matthews has gotten rid of the sale of flavored cigarettes that attract children’s attention. By doing presentations in different communities Dr. Matthews has brought awareness of the cancer epidemic. During week three I have also had the pleasure of meeting Dr. Tracy Luedke. She has given me great ideas and makes me want to explore the world and give back to my community. One of my favorite presentations was Jen Cooper and how to deal with stress. It was fun, she was funny and very interactive. As I continue to work and gather information and knowledge about where I want to be, this program makes me want to be a better person. I have a group full of fun and loving people.

Working with ChicagoCHEC is one of those experiences that is hard to explain. It challenges you and make you question about all the different diseases we can control. To meet so many different people in different part of the health field I never knew existed was exciting. In school they only really teach about the basic doctors and nurses but not really about the scientists and other behind the scenes professionals. I wish more people especially the individuals in the poorer parts of Chicago could have this chance. The chance to explore, learn, and question. We need more healthcare professionals that don’t just care about the money and don’t see people as a dollar sign. I want a world where no person’s life means more than another’s. This is what I feel the ChicagoCHEC program is shining a light on –how minorities are treated in this country and other countries. Through ChicagoCHEC, I have met so many different professionals that are willing to share their stories of failures as well as successes. The professionals are always willing and happy to help us with fulfilling our dreams. Before ChicagoCHEC I have never heard of precision healthcare. Precision healthcare is specific healthcare for each individual. Knowing of healthcare made for what I need as an individual and not just what works for the majority, made me feel incredible.

During an encounter with Dr. Winn, a doctor who started precision healthcare, he said “you are not just representing yourself”. This made me think about who I represent beside myself. When I truly thought about it, I realized I represent me, my family, and all the people that look like me that came before me and that will come after me. ChicagoCHEC is doing great work within the poorer parts of Chicago, and it makes me proud to be a fellow. One of the parts I loved about the ChicagoCHEC program is the UIC Wednesday. On UIC Wednesday we gather with other groups like GUIDE and Research Start and enjoy lectures. Also during UIC Wednesday we get to go on site visits to the different locations that Northwestern and UIC work with. A lot of the different locations are small clinics in poorer areas. The people within the clinics are doing great work and are really trying to help their community.

One of my favorite site visits was to the Puerto Rican Culture Center. This center is doing great work in the community and are providing people with a great outlet. The founder of the Cultural Center is very knowledgeable and very passionate about his work. He is a proud Puerto Rican man who wants better for his Puerto Rican and black people. This site visit encouraged me to keep studying the history of my people and made when want to continue taking African American courses. Through the ChicagoCHEC program, I have found a great mentor that is a doctor in my field of study which is dentistry. This dentist took time to meet with me, so we can personally talk about how I can advance to the title of dentist. Dr Patrick Smith is one of the nicest and genuine people I have ever met. This program has made me question whether I really want to be a dentist. At the end of the day I love dentistry, when I go to sleep all I do is dream of being a dentist. This program hasmade me want to work twice as hard to become a dentist and change policies. I felt that ChicagoCHEC did a great job when it came to booking speakers that interest everyone. I am the only person that was interested in dentistry, but they made sure a dentist was there to talk to the group. There was a person interested in graphic medicine, and ChicagoCHEC managed to find someone to talk to the group about graphic medicine. ChicagoCHEC found medical students and different doctors to come speak with those of us that are interested in going to medical school. All the speakers didn’t just talk about cancer disparities, but also gave us important information on how to advance in our personal and professional lives.

During this past seven weeks we have read somegreat books. The Death Gap was one of my favorite books that we read. The Death Gap talks about how healthcare is looked at and how people are treated based on what they can they pay. This book really took a hard look at healthcare in Chicago, which is something I never really thought about. The Death Gap talks about how John Stroger as known as Cook County, Rush, and Mt. Sinai are all in the same area but only Cook County Hospital takes more of the immigrants and people of color. This was not very shocking because I personally know there are hospitals that prefer not to deal with people of color. It really just reminded me what my aunt told me when I got sick one day, “go to the white people hospital they will take better care of you there.” I know what it feels like to go to the doctor and be completely ignored and that is in no way what I want my patients to feel. Now I wonder could this be true? I believe everyone deserves the proper healthcare, no matter what race, age, or gender. As I continue on my health career path I will make sure I provide equality to all I come in contact with.

If I cannot make it as a dentist, I will go to school to get my Masters in Public Health to change policies that affect everyone. I can say I have come a long way in my thought process and I know I have a long way to go. I have been inspired by so many of my peers to be great. I will rise to the challenge and be the great dentist I know I can be. Another great book was about Henrietta Lacks. Henrietta was an African American woman whose stem cells had been used for over 20 years without her consent to develop vaccines for things like polio. This book was quite interesting because it showed how the medical system was and remains flawed. As the program comes to an end, I reflect on all the new people I have met, all that I have learned. ChicagoCHEC is doing some great work that I never knew was being done in Chicago. I previously felt like in Chicago everyone cared only about themselves, but this program has proven me wrong. Because of ChicagoCHEC I find myself helping and caring more. Like Dr. Winn said, I’m not just representing myself. I know everyone is not given this opportunity but I intend to make the best of mine.

 

Disclaimer

 

The views expressed in this paper are exclusively those of the author and not necessarily representative of the organizations the author represents nor the ChicagoCHEC organization. This work is solely intended to help further disseminate information related to ChicagoCHEC’s cause and stimulate dialogue about important topics. It is not a report by ChicagoCHEC itself and must not be treated as such.

¡De Veras Que… Si Se Puede! It’s True That It Can Be Done

¡De Veras Que… Si Se Puede! It’s True That It Can Be Done

By: Queta “Ketta” Cardona

It was my 2nd semester of college at NEIU; I was in my 2nd week of class. The professor asked if anyone had applied to the summer research program at ChicagoCHEC that had been announced through email. I quickly stated, “No, it’s not for me. That’s for science people. I’m not a science person.” I was really thinking: “There’s no room for someone like me in that world. So, why even try.”

 

Dr. Ciecierski then talked about how any student interested in learning about health disparities and making  a difference in underserved communities could apply. She also said something about how they were looking for “other” voices, too. I took that to mean that even if I did not consider myself a “science” person, maybe I could still make an impact in my community…So, I applied.

A few months later, I sat in the Baldwin Auditorium of the Lurie Research Building at the Northwestern University Campus! There I was… a door had been opened for me. And, I was being welcomed into a world of academia that I had always dreamed about, but in which I could never take part – until that 1st day of the Research Fellows Program.

 

Here are some insights into my experience and gains.

Aquí comparto ideas sobre mis experiencias.

Cancer – What is it?

Dr. Jonathan Moreira taught us that cancer is a spectrum of diseases; according to the NIH, cancer is the name given to a collection of related diseases. In all types of cancer, some of the body’s cells begin to divide without stopping and spread into surrounding tissues, destroying the tissue.1

Health – It is a basic right. Es un derecho.

By the end of the 1st week I learned that health care in our country is treated as a commodity. Many view it as a product that can be bought and sold, such as a loaf of bread or a car. We discussed how this approach was leaving the vulnerable, the underserved, and even us on the fringes. We studied the barriers to health care that exist in our communities: poverty, racism, education, geography, policy, etc.

And, I began to wonder about the relationship between the loaf of bread and health care. So, I asked…how can we eat if we don’t have the money for the loaf of bread? Or, what happens when we have the money for the loaf, but the store is too far away for us to buy it? How then, do we eat? How can we have health if we can’t afford to be treated? How can we be healthy if we don’t have quality care near us?

Today I understand that these barriers need to be addressed because quality health care is a basic need to which everyone should have access.

“I think my sense of what was happening to people’s health,” she explained, “was that it was really determined by what was happening in society— by the degree of poverty and inequality you had.”

Helen Rodríguez Trías

 

El atención médica de calidad es una necesidad básica a la que todos deberían tener acceso. It’s moral and ethical.

It’s just Right! ¡Es correcto!

Equity – Equality isn’t always equal.

According to the (WHO), “Equity is the absence of avoidable or remediable differences among groups of people, whether  those  groups  are  defined  socially,   economically,   demographically,   or   geographically.   Health inequities therefore involve more than inequality with respect to health determinants, access to the resources needed to improve and maintain health or health outcomes. They also entail a failure to avoid or overcome inequalities that infringe on fairness and human rights norms.” 2

Journal Club was probably one of my favorite exercises in my Fellowship. We read and discussed such eye opening books as The Death Gap, by David A. Ansell and Medical Apartheid by Harriet Washington where the theme of inequity was discoursed. These discussions and other lectures helped me to grasp the difference between equality and equity. It came as a deeply personal revelation that I had never really considered how equality isn’t always equal. I am now more aware of the inequities in healthcare and strive to advocate their relief, especially in communities who have long been overlooked.

Collaborative – What we can do.

My peers were amazingly talented students from various colleges and universities in the Chicagoland area. They had varying backgrounds, career goals, and interests. Yet, we quickly became cohesive in the effort to acquire the knowledge and experience necessary to help address and change the health disparities we studied. One peer has learned to speak Spanish because she wants to make a global  impact on  health disparities. Another peer uses his economics degree and entrepreneurial interests to spread the message of identity and advocacy. I was also honored to work alongside a graphic designer who, after seeing the disparities in mental health treatment for the incarcerated, decided to return to get her M.D. so that she can directly serve that population.

We learned from researchers to artists. I saw that my voice makes a difference because it comes from a different yet valuable perspective. It gave me a greater appreciation for diversity in perspectives and approaches.

¿Y a hora qué?

I’m eager to return to my community and to support my neighbors as they face the issues that affect their health outcomes. I know I can personally help disseminate information on the prevention or early detection and/or treatment of cancer. I know I can direct my neighbors and friends to the community partners who offer services that help to bring health equity to my community. And finally, I will apply what I witnessed among the many guest lecturers and professors I had the honor to learn from; I will remain humble, relatable, and be part of the growing number of individuals who are closely involved with ensuring that health is everyone’s right no matter our skin color, language, neighborhood, level of education, or socioeconomic status. Sé que puedo ayudar personalmente a diseminar información sobre la prevención o detección temprana, y el tratamiento del cáncer.

About me:

Orgullosa de ser hija “primera generación” de padres inmigrantes mexicanos que me enseñaron el valor de mis raíces culturales. Born and raised in Chicago, I was raised by Mexican immigrant parents who gave me strong cultural and community roots. They taught me to look out for the less fortunate, which I have done for most of my adult life. After a long absence from college, I recently returned to finish my bachelor’s so that I could be better equipped to continue making an impact in the community. I plan to continue pursuing higher education with the emphasis on public health and public policy.

References:

 

1. https://www.cancer.gov/about-cancer/understanding/what-is-cancer
2. http://www.who.int/healthsystems/topics/equity/en/

 

Disclaimer

 

The views expressed in this paper are exclusively those of the author and not necessarily representative of the organizations the author represents nor the ChicagoCHEC organization. This work is solely intended to help further disseminate information related to ChicagoCHEC’s cause and stimulate dialogue about important topics. It is not a report by ChicagoCHEC itself and must not be treated as such.