Issue: June 2022
Cancer screening disparities in the LGBTQ+ community Page 8 INSIDE
Wait, what cancer screenings do I need?
Gay and bisexual men at increased risk for skin cancer
PREVENTIVE MEASURES AND GENERAL WELLNESS Choosing a prevention lifestyle Trusting your gut
IN THE WORLD OF CANCER Research grantee spotlight: Dr. Jan Claesen Supporting international exchange of cancer control practices Cancer screening disparities in the LGBTQ+ community
ADVOCACY NEWS President Biden’s proposed FY23 budget and its impact on cancer research
MAKE A DIFFERENCE Taking your fantasy football league to the next level
PRESIDENT’S CORNER Dear Readers, It has been a busy spring at the Foundation! Like all of you, we are looking forward to the summer season ahead while reflecting on our work of the last few months. Most recently, we wrapped up our 24th Prevent Cancer Dialogue. This year's theme, advancing health equity through innovation, featured conversations about current inequities and the steps needed to lessen health disparities. In May, our annual Advocacy Workshop explored cancer screening disparities in the LGBTQ+ community with patient advocacy organizations and LGBTQ+ community and health experts. The Prevent Cancer Foundation is committed to increasing education and action for the LGBTQ+ community. As we recognize Pride Month this June, we celebrate all of those in the LGBTQ+ community and our work to address the barriers they face. We're proud to bring you stories in this month’s issue about cancer screening disparities in the LGBTQ+ community so you can join us in daring to imagine a world where no one dies of cancer. Read on to learn more about how we work to fulfill our mission of saving lives across all populations through cancer prevention and early detection.
Jody Hoyos President and COO 2 Cancer PreventionWorks: June 2022
FOUNDATION HIGHLIGHTS ADVOCACY WORKSHOP On Thursday, May 19, the Prevent Cancer Advocacy Workshop convened conversations addressing disparities in the LGBTQ+ community when it comes to cancer risk and treatment. In his keynote address, Scout, the executive director of the National LGBT Cancer Network, discussed the state of the LGBTQ+ community as it relates to cancer care, best practices for data collection—as there is a significant lack of research on sexual orientation and gender identity when it comes to health care—and promoting the creation of welcoming spaces across the health care continuum. The Prevent Cancer Foundation remains committed to increasing education and action among this population and looks forward to future conversations on this topic.
PREVENT CANCER DIALOGUE Earlier this month, the Prevent Cancer Dialogue convened for two days in Arlington, Virginia to discuss what it means to achieve health equity through innovation. Stakeholders from clinical medicine and public health gathered for a variety of mainstage sessions and breakout discussions on topics such as HPV vaccination, increasing lung cancer screening, technologies on the frontiers of earlier detection of cancer, and diet and microbiome influences on breast cancer risk. The event’s two keynote speakers, J. Nwando Olayiwola, M.D., MPH, FAAFP, and Richard C. Wender, M.D., emphasized the importance of the relationship between health equity and innovation as they relate to improving cancer care.
PREVENTIVE MEASURES & GENERAL WELLNESS
CHOOSING A PREVENTION LIFESTYLE By Alicia Storkamp I’m Alicia (aka PuzzlePea), and for decades I’ve struggled with disordered eating. I went on my first diet when I was 11 years old, buying SlimFast shakes at a drugstore. For the next two decades, I jumped from one fad diet to the next, looking for a magical weight loss cure. But before long, I’d just slip back into the same dysfunctional habits. No fad diet prioritizes long-term success because then you’d stop buying their products. So for the past seven years, I’ve been fighting addiction to highly processed foods that are constantly in my face. When I was 31, I was diagnosed as prediabetic. And according to the Centers for Disease Control and Prevention, being overweight or having obesity are linked with a higher risk of getting 13 types of cancer. These cancers make up 40% of all cancers diagnosed in the United States each year. After facing the facts, I knew I had two choices: change what I’m eating to focus on preventing heath complications, or do nothing and be forced to live with the consequences. I’d spent my whole life eating TV dinners, microwaved meals, deli meat sandwiches, chips—and of course, candy. In fact, I had no idea how addicted to sugar I was until I stopped eating it, cold turkey. I threw away or donated everything in my kitchen and restocked it with whole grains, nuts, seeds, fruits and vegetables. Basically, I had to figure out how to make things I liked to eat from scratch. How do I satisfy a pizza craving with vegetables? But because meals made at home had a fraction of the salt, sugars and additives as takeout and restaurant dishes, I went through withdrawals.
Though lifestyle changes are hard to make, it’s easier to stay motivated to continue because the effects are mind blowing. I have clearer skin, better digestion, healthier gums and teeth, improved mental clarity, higher energy and improved mobility from losing more than 100 pounds. This would not have been possible if my goal wasn’t set in the right place. I want to drastically reduce my risk of metabolic illnesses, and this is what it takes.
PREVENTIVE MEASURES & GENERAL WELLNESS
TRUSTING YOUR GUT By Craig Meddin
If someone had told me a hurricane and a global pandemic would get in the way of me getting a colonoscopy, I wouldn’t have believed them. From learning I was lactose intolerant as a middle schooler to cutting gluten and other foods out of my diet throughout my 30s, I had been chasing gastrointestinal issues for years. My doctor recommended I get a colonoscopy, but I chalked up my symptoms to stomach troubles. I never thought it could be cancer. At the time of my first scheduled colonoscopy, I was only 40 and thinking, “Do I really need this?” But in the middle of my prep, a hurricane was headed to Raleigh, North Carolina, our home. Things were getting cancelled left and right, so I stopped the prep and didn’t pursue getting a colonoscopy until a couple of years later when pandemic restrictions were lifting, my doctor retired, and it came time to find a new one prior to a routine physical. During my procedure, several polyps were removed, and the largest, which was discolored and cancerous in appearance according to my gastroenterologist—and one-third the width of my colon—would require a colon resection surgery (and quickly). A week later, my doctor confirmed what my family and I had been told to prepare for: a colorectal cancer diagnosis. It was clear that had I waited any longer for my colonoscopy, my prognosis could have been much worse. Despite the two-year delay, they found my cancer early—imagine if I had continued to dismiss my symptoms and waited until I turned 45? (Forty-five is
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Despite bloodwork and CT scans, at the end of the day, the only thing that caught my cancer was a colonoscopy. If I kept postponing, I might have never known about my diagnosis until it was too late. the recommended age to begin screening for colorectal cancer by the U.S. Preventive Services Task Force.) Although you personally might receive a cancer diagnosis, it’s bigger than just you. My cancer diagnosis affected my entire family, and it’s important there is supportive discussion for your immediate family and your caregiver, too. I’ll never forget my surgeon asking if I had siblings. I answered yes, to which he replied, “You need to call your siblings; your family history has now changed.” You think of family history as what your parents tell you about themselves or your grandparents. I never thought I’d be “the changer of the history.” After my colon resection surgery, it was confirmed the cancer had spread to nearby lymph nodes—not the diagnosis we were wanting. It was already Stage IIIB. Once I began chemotherapy, I debated for weeks whether to make a post on social media to share my diagnosis with others—not for pity, but for first-degree awareness. Within a couple of days of sharing, at least a dozen people messaged me to say my
PREVENTIVE MEASURES & GENERAL WELLNESS
story had encouraged them to schedule the colonoscopy they had been putting off. A colonoscopy can help you learn so many things about your body. Despite bloodwork and CT scans, at the end of the day, the only thing that caught my cancer was a colonoscopy. If I kept postponing, I might have never known about my diagnosis until it was too late. You never want to assume the worst, but you’ve got to take action. Looking back at the symptoms I had been experiencing for the better part of a decade, I know now that they were symptoms of colorectal cancer. Even so, I feel incredibly lucky it was found sooner than later. Early
detection saves lives—listen to your symptoms, don’t be afraid to talk about them, and know that you are your own best advocate when it comes to your personal health. Did a delayed doctor’s appointment help you discover a cancer or pre-cancer? We want to hear about how getting your appointment Back on the Books helped you take charge of your health! Share your story with us at preventcancer.org/backon-the-books.
IN THE WORLD OF CANCER
RESEARCH GRANTEE SPOTLIGHT: DR. JAN CLAESEN This month we’re excited to highlight the work of one of our 2020 research grantees, Jan Claesen, Ph.D., assistant professor of molecular medicine at Case Western Reserve University School of Medicine and member of the Case Comprehensive Cancer Center Molecular Oncology Program. Dr. Claesen, who recently completed his grant project, proudly states that his work is closely aligned with the Prevent Cancer Foundation’s mission to “Stop Cancer Before It Starts!” through promoting a healthy diet and lifestyle. Specifically, he analyzed the link between dietary flavonoids (from fruits and vegetables) and gut bacteria in helping prevent inflammation-induced cancers, such as colon cancer. Through his research, Dr. Claesen aims to inform the public on the importance of plant-derived dietary components and why a fruit- and vegetable-based diet works better for some people than others. For Dr. Claesen, the impact of the Prevent Cancer Foundation’s grant funding goes beyond the initial project, as securing the grant afforded him the opportunity to join the Case Comprehensive Cancer Center at Case Western Reserve University, which requires active grant funding for membership. In addition, study findings from his grant-supported research yielded the preliminary data, publications and conference presentations needed for Dr. Claesen to pursue competitive grant opportunities with the National Cancer Institute this fall. In the long term, Dr. Claesen’s project will inform the design and interpretation of future clinical studies and help formulate diets for cancer prevention or for promoting patient quality of life in combination with existing treatments. Dr. Claesen represents many of the dynamic researchers committed to cancer prevention and early detection whom the Prevent Cancer Foundation supports through its grant and fellowship program. Applications for the upcoming research cycle are currently open and close July 11, 2022. Visit preventcancer.org/research/grants-fellowships to learn more about the Prevent Cancer Foundation grant program and application process.
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IN THE WORLD OF CANCER
SUPPORTING INTERNATIONAL EXCHANGE OF CANCER CONTROL PRACTICES Since 2015, the Prevent Cancer Foundation has partnered with the Union for International Cancer Control (UICC) to support more than 40 of the UICC’s technical fellowships. These fellowships facilitate the international exchange of cancer control information and allow health care professionals to learn new techniques and skills in the early detection and treatment of cancer at top research and cancer institutes. The majority of awards are made to fellows from low- and middle-income countries. In 2019, Florence Manjuh, RN, from the Cameroon Baptist Convention Health Services (CBCHS), received a technical fellowship from UICC and the Prevent Cancer Foundation. This enabled her to travel to Jordan and work with the King Hussein Foundation Information and Research Center to receive training on breast cancer screening programs and learn how to set one up at her own health center. After returning to Cameroon, Manjuh reported that she and her team at CBCHS were able to screen more than 19,000 women and provide additional necessary services using various new screening methods she learned in Jordan. "When I got back home after my training, all the staff at the Women’s Health Program were excited, ready and willing to learn from my Jordan experience. This was very helpful as I organized debriefing meetings about the screening process and what was needed for proper diagnosis," Manjuh said. "All the staff were engaged and worked so hard to see that clients were offered the best care. " In addition to continuing to help fund additional grants in 2022, with generous support from Foundation board member Jeremy FitzGerald, the Prevent Cancer Foundation will help UICC bring grantees, including Manjuh, to the World Cancer Congress in Geneva in October. There, they will be able to continue learning about and sharing cancer early detection work. Learn more about Manjuh’s time in Jordan as well as other technical grantees funded by the Foundation by visiting preventcancer.org/programs/our-global-reach/technical-fellowships.
IN THE WORLD OF CANCER
Cancer screening disparities in the LGBTQ+ community June is Pride Month, a time devoted to achieving equal justice and equal opportunity for the LGBTQ+ community. LGBTQ+ individuals experience differential and inequitable treatment across all aspects of life—and that includes access to health care services. One of the many issues affecting the LGBTQ+ community unequally is cancer, with at least seven types—anal, breast, cervical, colorectal, lung, prostate and uterine—disproportionately affecting the community. Discrimination is among the factors causing these disparities. Some LGBTQ+ individuals may be more reluctant to see a health care provider because of unpleasant reactions they’ve had during past visits. A recent Prevent Cancer Foundation survey found that 47% of LGBTQ+ individuals say their health care provider was not aware of their sexual orientation or gender minority status. LGBTQ+ individuals are also more likely to be unemployed and uninsured, lack access to health care and delay health care, making them more likely to miss out on routine cancer screenings and preventive care.1
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Many lesbian women don’t get screened for cervical cancer because of the misconception by some health care providers that they don’t need to be. A 2013 study published in BMC Public Health indicates that lesbian women are less likely to be screened regularly for cervical cancer than the general female population. The most common reasons cited for skipping the exam included not having a health care provider and not being referred for testing by their provider. Anyone between the ages of 21 and 65 with a cervix should be screened for cervical cancer.
There are also misconceptions about what screenings transgender men and women may need. Letting your health care provider know what organs you have can help, but first it’s important to find a provider you are comfortable sharing this information with. Unfortunately, the pandemic continues to affect many Americans’ health care routines, including the LGBTQ+ community. 2 in 5 LGBTQ+ adults have missed a scheduled doctor’s appointment over the past two years.2 Missed appointments represent missed opportunities to detect cancer early. The earlier cancer is detected, the more likely treatment is to be successful, so it’s important to stay up to date on routine cancer screening appointments.
gathering data in our surveys for the Back on the Books campaign. Additionally, we are focusing our current community grants cycle on LGBTQ+-directed programs and held an Advocacy Workshop in May 2022 to address cancer disparities in the LGBTQ+ community. To learn more about the results from our latest Back on the Books survey, visit preventcancer.org. If you are a lesbian, gay, bisexual, transgender or queer individual looking for an LGBTQ+-friendly health care provider, visit glma.org.
Another barrier for the community is the lack of data on the needs and experiences of LGBTQ+ people, which makes it difficult to understand how to develop programs and policy interventions. The Prevent Cancer Foundation is committed to working to close these gaps in research and identifying possible solutions through
Prevent Cancer Foundation Survey, January 2022
what cancer screenings do I need? CANCER SCREENING, EARLY DETECTION AND PREVENTION SNAPSHOT Talk with your health care provider about any personal or family history of cancer to determine if you should begin any cancer screenings at an earlier age or be tested more frequently. Having one or more family members with a history of certain cancers, including breast, colorectal and prostate, may place you at higher risk for the development of cancer. 20s & 30s
• • • • • • •
• Breast cancer screening (if transgender, talk with your health care provider) • Cervical cancer screening • Colorectal cancer screening • Lung cancer screening (active or previous smokers who smoked 20 pack years—the equivalent of a pack a day for 20 years) • Prostate cancer screening—talk with your health care provider • Dental oral cancer exam • Hepatitis B vaccine if not already vaccinated • Hepatitis C testing at least once between 18-79 • Skin checks • Testicular exams
Cervical cancer screening beginning at 21 Dental oral cancer exam HPV vaccine recommended up to 26 Hepatitis B vaccine if not already vaccinated Hepatitis C testing at least once between 18-79 Skin checks Testicular checks
40s • Breast cancer screening (if transgender, talk with your health care provider) • Cervical cancer screening • Colorectal cancer screening beginning at 45 • Dental oral cancer exam • Hepatitis B vaccine if not already vaccinated • Hepatitis C testing at least once between 18-79 • Prostate cancer screening discussion beginning at 45 if Black • Skin checks • Testicular checks
60s & 70s • Breast cancer screening (if transgender, talk with your health care provider) • Cervical cancer screening until 65 then talk with your health care provider • Colorectal cancer screening until 75 • Lung cancer screening (active or previous smokers who smoked a pack a day for 20 years) • Prostate cancer screening—talk with your health care provider • Dental oral cancer exam • Hepatitis C testing at least once between 18-79 • Skin checks • Testicular checks
80s Talk with your health care provider about which cancer screenings you should undergo. preventcancer.org 10
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GAY AND BISEXUAL MEN AT INCREASED RISK FOR SKIN CANCER
Skin cancer, the most common cancer in the United States, can affect anyone. But certain factors elevate your risk, including a family or personal history of the disease, having a lighter natural skin tone and certain or many moles on your skin. Gay and bisexual men may also be at increased risk: Though research about cancer risks for the LGBTQ+ community is lacking, a 2020 study indicates that gay and bisexual men report skin cancer rates nearly twice that of heterosexual men.1 (Sexual minority women reported lower or equal rates of skin cancer compared with heterosexual women.) The authors of this study, as well as previous studies, suggest higher rates of indoor tanning use among gay and bisexual men may be to blame. Tanning beds are not safe: According to the World Health Organization, the risk of melanoma—the deadliest form of skin cancer—is increased by 75% when the use of tanning beds begins before age 30. If you use tanning beds, now is the time to stop.
The tanning industry could be partially responsible for the prevalence of tanning bed use within this community. A Stanford University School of Medicine study shows that neighborhoods with high proportions of gay and bisexual men are twice as likely to have indoor tanning salons as neighborhoods with fewer sexual minority men. The researchers plan to study the tanning industry’s marketing and advertising to learn more and help make these communities healthier. The Prevent Cancer Foundation recommends an annual skin cancer check from your health care provider or dermatologist in addition to being aware of any changes to your skin and moles. Remember the ABCDEs of skin cancer to help you!* To reduce your risk of skin cancer, always wear sunscreen with an SPF of 30 or higher. 1 Singer S, Tkachenko E, Hartman RI, Mostaghimi A. Association Between Sexual Orientation and Lifetime Prevalence of Skin Cancer in the United States. JAMA Dermatol. 2020;156(4):441–445. doi:10.1001/ jamadermatol.2019.4196
*Not sure where to begin? See the ABCDE rule on the next page.
ADVOCACY NEWS SCREENING SPOTLIGHT
ABCDE RULE USE THIS RULE WHEN LOOKING AT MOLES:
Color that is not uniform
Diameter greater than 6mm
Evolving size, shape or color
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PRESIDENT BIDEN’S PROPOSED FY23 BUDGET AND ITS IMPACT ON CANCER RESEARCH On March 29, 2022, the Biden administration released its proposed FY2023 budget, which includes increased funding for the Advanced Research Projects Agency for Health (ARPA-H) and the Centers for Disease Control and Prevention (CDC) but reductions in funding for the National Cancer Institute (NCI). ARPA-H is a new biomedical research agency focused on high-risk, bold, translational research projects, which aim to prevent, treat and possibly cure a range of diseases including cancer, infectious diseases, Alzheimer’s disease, obesity and others. The $5 billion funding for ARPA-H will speed up research that can improve the health of all Americans. The Prevent Cancer Foundation applauds the development of ARPA-H and its potential to impact early cancer detection and accelerate critical research. Despite increased funding for ARPA-H, the budget proposal includes flat funding for the National Institutes of Health and a funding cut to the NCI of almost $200 million. The Prevent Cancer Foundation does not support a cut in funding to the NCI. Reductions in funding will not help us save lives and reduce the cancer burden on Americans. As we push for increased funding for research, it is important to ensure that it does not come at the expense of our existing research infrastructure. The proposed budget also includes a $41 million increase for key cancer prevention and screening programs under the CDC. These funds are critical in light of the recent drop in cancer screenings: A study from the Prevent Cancer Foundation in January 2022 revealed that, two years into the pandemic, Americans are continuing to miss their routine doctor appointments and cancer screenings. Our nation needs an increase in funding for cancer prevention and screening. The Foundation urges the administration and Congress to fully invest in research today so that the NCI can build on its progress and save the lives of Americans in years to come. preventcancer.org 13
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MAKE A DIFFERENCE
TO DO: 1.
Pick my players.
2. Schedule my cancer screenings. 3. Donate to Prevent Cancer Foundation. 4. Make a difference.
TAKING YOUR FANTASY FOOTBALL LEAGUE TO THE NEXT LEVEL Are you gearing up to play in a fantasy football league this year, prepping your draft picks and recruiting your teammates? Now’s the time to decide if you want to take your league to the next level and fundraise for cancer prevention and early detection. Read on to see what steps you can take so your league helps us Stop Cancer Before It Starts!® Recruit your team. Spread the word on social media that you’ll be running a team this year and the proceeds will go directly to the Prevent Cancer Foundation. Extra tip: Share why you decided to fundraise for the Foundation. A personal story helps your friends and family know why it’s important to you and will encourage them to participate. Plan your draft party. Now’s the time to create your team and collect the entry fees. Sites like NFL.com and ESPN.com make setting up your team simple. Once you have all your participants, you can plan a fun in-person or virtual draft party for everyone to make their picks and celebrate the start of the season. Extra tip: Share information about the Foundation at your draft party. This will help your participants learn more about all the work the Foundation does and why their support is important. Make your donation. If your league decides to donate all proceeds to the Foundation, you can create a fundraising page (youcanpreventcancer.org) where everyone can submit their entry fee and other family and friends can make additional donations. If you’d like to split the proceeds between the winner and the Foundation, the league commissioner can collect all entry fees and make the donation at the end of the season. Extra tip: Send us a note with your donation so we know to thank your league! Creating a charity fantasy football league benefiting the Prevent Cancer Foundation is a great way to support the work of the Foundation while doing something fun with your friends and family. preventcancer.org 15
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Cancer PreventionWorks is published by the Prevent Cancer Foundation®, a 501(c)3 nonprofit organization dedicated to the prevention and early detection of cancer. All contributions are tax deductible to the fullest extent allowed by law.
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UPCOMING EVENTS September 15, 2022 Prevent Cancer Foundation 28th Annual Gala Washington, D.C. November 3-4, 2022 Quantitative Imaging Workshop Virtual Event
IN THIS ISSUE
Trusting your gut
Supporting international exchange of cancer control practices
Gay and bisexual men at increased risk for skin cancer
Taking your fantasy football league to the next level
For more information visit preventcancer.org/events