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Hardship common in survivors of AYA cancers

As AYA cancers increase, understanding ongoing hardships is critical.

A new study published today in the Journal of the National Cancer Institute (JNCI) finds higher medical financial hardship in adult survivors of adolescent and young adult (AYA) cancers than in adults without a history of cancer in the U.S.

Experts have known that cancer and its treatment can cause significant financial hardship to cancer survivors and their families. However, the long-term economic implications for adult survivors of AYA cancers were not fully understood.

In this study, investigators led by Amy D. Lu, MD, The Hospital for Sick Children, and Zhiyuan “Jason” Zheng, PhD, American Cancer Society, used data from the National Health Interview Survey (2010-2018) and analyzed responses from adult (>18 years) survivors of AYA cancers (ages 15-39 at diagnosis) and adults without a cancer history. The study explored the various aspects of financial hardships including material (for example, ability to pay bills), psychological (for example, worries about medical bills), and behavioral (for example, delaying or foregoing medical care) measures.

Key study findings include:

  • Adult survivors of AYA cancers were more likely than adults without a cancer history to report material and behavioral financial hardship, including problems paying medical bills or delaying or forgoing care because of cost.
  • Adult survivors of AYA cancers were more likely to report greater intensity of medical financial hardship than their counterparts without a cancer history.
  • Adult survivors of AYA cancers were more likely to report cost-related medication non-adherence, such as skipping medication doses, taking less medication, and delaying filling a prescription to save money.

“Multiple aspects of financial hardship associated with a cancer diagnosis may last for many years for survivors of AYA cancers,” said Dr. Zheng.

As the incidences of AYA cancers increase, understanding the spectrum of medical financial hardship is critical to those caring for and designing policies for adult survivors of AYA cancers, and in guiding ongoing research in this area.

“Healthcare providers can help support increased awareness and assessment of financial hardship, as well as subsequent connection to existing financial and vocational assistance/support services. State and federal policies may have a broader impact through implementation of provisions of the Affordable Care Act in increasing insurance coverage options including affordability and accessibility,” said the authors.

  • ACS awards 42 research grants totaling $33.8 million; many focus on health equity

    The American Cancer Society, the largest non-government, not-for-profit funding source of cancer research in the United States, has approved funding for 42 research grants totaling $33.8M. 

    The newly approved grants will fund investigators at 33 institutions across the United States. Grant-funded projects will begin on July 1, 2021.

    Below are highlights of the latest cycle:

    Dhyan Chandra, PhD, Roswell Park Cancer Institute: Dr. Chandra's project will build on previous groundbreaking work which found that mitochondrial dysfunction is one of the key reasons African Americans with prostate cancer have worse health outcomes when compared with Caucasian-Americans, and that this dysfunction is often caused by cytochrome c-deficiency in prostate tumors. Their current project will investigate agents that restore cytochrome c and explore whether restoration of cytochrome c and mitochondrial function improves the efficacy of current prostate cancer therapeutics. Their work could have immediate applicability to treat prostate cancer patients and reduce racial disparities.

    Luke Hoeppner, PhD, University of Minnesota: Small cell lung cancer is the most aggressive subtype of lung cancer, with only 7% of patients surviving over five years. Dr. Hoeppner's team previously showed that several genes in the dopamine pathway promote drug resistance in lung cancer. Their work will now investigate the hypothesis that altering the dopamine signaling pathway is a new approach to inhibit small cell lung cancer progression and drug resistance, which could translate to more effective treatment options.

    Todd Lucas, PhD. Michigan State University: African-Americans are at an increased risk of developing and dying from colorectal cancer (CRC). With this project, Dr. Lucas aims to identify whether providing options for at-home CRC screening reduces African-American colorectal cancer screening disparities, and to decipher whether use of culturally-targeted implementation intentions can enhance conversion about screening. These findings could potentially reduce significant and costly cancer disparities through behavioral prevention.

    Caitlin Murphy, PhD, University of Texas Southwestern Medical Center, Dallas: This project will explore if and how prescription co-payments impact medication adherence among breast cancer patients from low-income households. Almost half of low-income and uninsured patients report financial problems related to their cancer diagnosis, including out-of-pocket costs, medical debt, and even bankruptcy.  Dr. Murphy's results will inform ways to improve delivery of effective breast cancer treatment, ensuring equal access and affordable breast cancer care for vulnerable, underserved patients.

    Senthil K. Radhakrishnan, PhD, Virginia Commonwealth University: Triple-negative Breast Cancer (TNBC) is an aggressive disease that disproportionally affects African-American women. Dr. Radhakrishnan's project will build on previous work showing that blocking a protein called Nrf1 could lead to increased efficacy of an existing drug therapy, Carfilzomib. In this application, Radhakrishnan's team will test if administration of Carfilzomib together with Nrf1 pathway inhibition results in a significant reduction in tumor and metastatic burden. If successful, their work could lead to the development of rational drug combinations that could improve outcomes for TNBC patients.

    Christine M. Daley, PhD, University of Kansas Medical Center Research Institute: American Indians use chewing tobacco at higher rates than any other racial or ethnic group in the United States. As a result, their rates of oral, esophageal, and pancreatic cancers are rising. To address this disparity, Dr. Daley's team has developed a culturally tailored quit chewing tobacco program for American Indians called All Nations Snuff Out Smokeless (ANSOS), and will use grant funds to test, tweak, and expand the program.

    Our Extramural Discovery Sciences currently supports research in a wide range of cancer-related disciplines at more than 190 institutions. 

    ith an investment of more than $5 billion since 1946,  ACS  has funded 49 researchers who have gone on to be awarded the Nobel Prize. We primarily fund early career investigators, giving the best and the brightest a chance to explore innovative ideas at a time when they might not find funding elsewhere.

    For more information about cancer research supported by the American Cancer Society, please visit

  • Did you miss the NCCRT webcast? A replay is now available.

    On March 16, the National Colorectal Cancer Roundtable (NCCRT) hosted a webcast featuring Richard Wender, MD, and Robert Smith, PhD, NCCRT co-chairs; Lisa Richardson, MD, MPH, director of CDC’s Division of Cancer Prevention and Control; Rebecca Siegel, MPH, our senior scientific director, Surveillance Research; Folasade May, MD, PhD, MPhil, UCLA Health, our 2021 80% in Every Community National Achievement Awards grand prize honoree; and other special guests. 

    If you missed the annual event, held every March in recent years to mark Colorectal Cancer Awareness Month, a replay is now available.

    Host of the show was our own Desiree Berenguer Carton

    Coming up on Thursday, April 15, 2 - 3 p.m. ET, is another NCCRT webinar: Colorectal Cancer Screening & COVID-19 Update: A Look At The Current Landscape One Year Into The Pandemic.

    The webcast is free and is open to NCCRT members, 80% Pledge partners, CDC grantees, ACS and ACS CAN staff, and other partners working to increase colorectal cancer screening rates. Pre-registration is required.

    This webinar will bring back together the authors of NCCRT’s action-oriented playbook (released June 2020) to discuss what progress has been made and what challenges remain for colorectal cancer screening in 2021.

  • USPSTF wants to double lung cancer screenings

    More Black people and women would be screened under the new criteria.

    The United States Preventive Services Task Force (USPSTF), an independent, volunteer panel of national experts in prevention and evidence-based medicine, released a final recommendation statement on screening for lung cancer on March 9. It says people with a long history of smoking should begin getting annual low-dose CT scans at age 50, five years earlier than the group recommended in 2013. The group also broadened the definition of people it considers at high risk for the disease.

    The taskforce’s new recommendation has some differences compared to the American Cancer Society’s guidelineRobert Smith, PhD, senior vice president, cancer screening, shared his perspective on the USPSTF’s recommendation in the statement below. The statement is also posted to and can be used to respond to media as appropriate.   

    Statement attributable to Robert Smith, PhD, senior vice president, cancer screening: 

    The USPSTF 2021 recommendation for annual screening for the early detection of lung cancer for those who meet the following criteria: Adults aged 50 to 80 years who have smoked a pack a day for at least 20 years, and currently smoke or have quit within the past 15 years.

    The two major changes from the 2013 recommendation are lowering the age to start screening from 55 to 50, and lowering the pack-year smoking history from 30 pack-years to 20 pack-years. 

    Significance of Changes 

    Despite smoking less, there is evidence that Black adults who smoke are at higher risk for lung cancer than white adults (i.e., at a lower pack-years smoking history). Lowering the pack-year history will increase the number of adults who are eligible for screening among those who currently smoke or formerly smoked, which is important for those who are at higher risk with at lower pack year histories. Similarly, Latinx/Hispanics who smoke accumulate less pack-years history than whites who smoke, and women accumulate less pack-years history than men, so more Latinx/Hispanic adults who smoke and women would be eligible for screening under the new guidelines. 

    Insurance Coverage 

    Under the Affordable Care Act, all non-grandfathered private insurance plans and Medicaid expansion plans will have to provide coverage according to the new guidelines. For private insurance, the plan must begin covering the USPSTF recommended preventive service beginning in the plan year that begins on or after one year from the date the recommendation is issued. Medicare will have to choose to update its National Coverage Determination. 

    Current ACS Guidelines 

    Our lung cancer screening guideline was last updated in 2013, and an update will be initiated in 2021. The current recommendation is for annual screening for the early detection of lung cancer using a low-dose spiral computed tomography (LDCT) for those who meet the following criteria: 

    • Aged 55 to 74 in relatively good health (note the Centers for Medicare and Medicaid Services covers screening to age 77, and the USPSTF recommends screening for adults up to age 80. The ACS guideline should not discourage adults who are healthy and eligible for screening to continue past age 74)
    • Currently smoke or quit in the past 15 years
    • 30+ pack-year smoking history

    ACS also recommends these individuals undergo informed/shared decision making with a clinician and discuss the potential benefits, limitations, and harms of screening prior to referral in addition to being counseled on smoking cessation.

  • Nucor Steel Decatur, Perdue Farms, and Taco Bell each fund a research grant meaningful to them.

    The Hero of Research Award offers Relay For Life teams that raise at least $165,000 during the Relay season an opportunity to name an existing post-doctoral fellowship research grant in honor of a loved one or their team. Once identified, this named grant is active for three years. 

    Three teams – Nucor Steel Decatur, Perdue Farms, and Taco Bell (Southern Multifoods) – earned this honor for their fundraising efforts in a difficult 2020 fundraising year. They will be naming their grants this calendar year. 

    Nucor Steel Decatur and Taco Bell (Southern Multifoods) are renewing their grants earned in 2017. Perdue Farms is a first-time recipient of this honor, and should be proud of their efforts and dedication each year. 

    Let’s learn more about the teams and the grants they named:

    Nucor Steel Decatur 

    • Grant name: Nucor Decatur – Farrah Brownlee Rollings Grant
    • Investigator: Tiffany Rios, PhD
    • Institution: New York University School of Medicine
    • Project title: DAP5/eIF3d: Translation Mechanism essential for Breast Cancer Metastasis

    Wes Rollings, a member of the Nucor Steel Decatur Relay For Life team, lost his wife, Farrah, to breast cancer in 2020. This research project was chosen specifically to help those fighting all types of metastatic breast cancer. 

    “First of all, I want to say, “thank you” for thinking of Farrah,” said Wes. “That was very thoughtful, and I feel proud that I get to work with teammates like you.” 

    Their team is passionate and uses the same business model as their company to constantly improve, be passionate, and learn and grow from the past. This year they were “virtually unstoppable” as they pivoted their cycle event to virtual.

    • Grant name: The Perdue-Lewiston Associate Research Grant
    • Investigator: Michael Lewis, PhD
    • Institution: University of North Carolina, Chapel Hill
    • Project title: Defining Enhancer RNA Function in the Pathogenesis of Breast Cancer

    The Perdue Farms Relay For Life team consists of associates employed at the Perdue Farms Complex in Lewiston, NC. It has raised more than $1.7 million dollars since they first organized.

    The team has been participating in the Relay For Life of Bertie County for 25 years. In 2012, the Relay team reached the $100,000-per-year status for the first time, and has continued to raise well over that each year, averaging around $145,000 per year. They were determined to reach their goal and earn a Hero of Research Award. 

    “It is a great accomplishment to be able to raise this amount of money needed to achieve this award, plus doing it during a pandemic,” said a member of the team. “Our associates didn’t waiver in their giving.”

    They chose to name the grant The Perdue-Lewiston Associate Research Grant because Perdue’s associates were the ones that made this happen with their payroll contributions. Learn more.

    Taco Bell (Southern Multifoods)

    • Grant name: Southern Multifoods, Inc. Give Más Live Más Southern Multifoods Grant
    • Investigator: Zachary Wilson, PhD
    • Institution: University of Utah
    • Project title: Regulation of Cell Metabolism by the Mitochondrial Derived Compartment

    The Taco Bell (Southern Multifoods) Relay For Life team started raising money for our mission because two employees were battling cancer at the same time. Since 2009, this team has raised an impressive $3,254,326. When they first started raising money for Relay For Life, they never imagined the impact their company would make in so many lives. 

    Despite the daily duties at their restaurants, managers and team members ask every customer for a donation. The fact that cancer does not discriminate is what unites this team to raise money and fight. Every year their passion for Relay grows even stronger and is celebrated at their local Relay For Life event.

    The grant will be named the Southern Multifoods, Inc. Give Más Live Más Grant after all staff at the home office chose the final winner out of six potential names. To them, every dollar raised is helping a mother, father, son, daughter, or friend celebrate another birthday.

  • Missing regular mammogram increases risk of dying from breast cancer

    Finding coincides with plummeting cancer screening rates due, in part, to COVID-19.

    Attendance at regular mammography screening substantially reduces the risk of dying from breast cancer, according to a large ACS-funded study of more than half a million women published March 1 in Radiology. Researchers said women who skip even one scheduled mammography screening before a breast cancer diagnosis face a significantly higher risk of dying from the cancer.

    “This is the first time we’ve analyzed the mortality benefit of not just breast cancer screening, but regular breast cancer screening, using such a robust, comprehensive data set,” said Robert Smith, PhD, our senior vice president of cancer screening.

    “This study comes at a critical time, as a staggering number of women have missed their regular mammogram over the past 12 months due to the period when screening services were suspended as a result of the pandemic, as well as enduring fears and barriers caused by the COVID-19 pandemic," he said.

    In the new study led by László Tabár, MD, from Falun Central Hospital in Falun, Sweden, a multinational team of researchers took a more detailed look at screening attendance patterns to further refine mortality risk estimates. They analyzed data from almost 550,000 women eligible for mammography screening in nine Swedish counties between 1992 and 2016. The women were divided into groups based on their participation in the two most recent scheduled screening exams prior to cancer diagnosis. Women who participated in both screening sessions prior to diagnosis were identified as serial participants, while those who did not attend either screening opportunity were categorized as serial nonparticipants. 

    Analysis showed that participation in the two most recent mammography screening appointments before a breast cancer diagnosis provides a higher protection against breast cancer death than participation in neither or only one examination.

    The incidence of breast cancers proving fatal within 10 years of diagnosis was 50% lower for serial participants than for serial nonparticipants. Compared to women who attended only one of the two previous screens, women who attended both had 29% fewer breast cancer deaths.

    “Regular participation in all scheduled screens confers the greatest reduction in your risk of dying from breast cancer,” said the study’s lead author, Stephen W. Duffy, M.Sc., professor of cancer screening at Queen Mary University of London.

    Duffy said the results add further evidence to support regular screening with mammography as a means for reducing breast cancer-related deaths: “While we suspected that regular participation would confer a reduction greater than that with irregular participation, I think it is fair to say that we were slightly surprised by the size of the effect.”

    “The message that women should take from this analysis is clear: regular screening tests can save your life,” Smith said.  “Regular mammography screening is an important part of a woman’s preventive health plan. And, if you’ve missed getting your mammogram during this pandemic, call your doctor to make up that appointment, and be conscientious going forward about getting regular mammograms.”

    Breast cancer screening with mammography has helped to substantially reduce breast cancer deaths by enabling detection of cancer at earlier, more treatable stages. Despite mammography’s well-established effectiveness, many women don’t participate in recommended screening examinations, and pandemic-related barriers to screening have exacerbated this reluctance. According to the Prevent Cancer Foundation, an estimated 35% of Americans missed routine cancer screening due to COVID-19-related fears and service disruptions early in the pandemic.

    In the U.S. in 2021, there will be an estimated 281,550 new cases of invasive breast cancer diagnosed in women and 43,600 deaths. For women at average risk of breast cancer, the American Cancer Society recommends that those 40 to 44 years of age have the option to begin annual mammography; those 45 to 54 undergo annual mammography; and those 55 years of age and older transition to biennial mammography or continue annual mammography. Women should continue mammography as long as overall health is good and life expectancy is 10 or more years. For some women at high risk of breast cancer, annual breast magnetic resonance imaging (MRI) is recommended to accompany mammography, typically starting at age 30. 

  • Cancer survivors worry about treatment disruptions

    A new ACS study reports that early in the 2020 pandemic in the U.S., one-third of cancer survivors worried about treatment and cancer care disruptions. 

    Using a mixed methods approach, investigators utilized survivors’ own words to more deeply describe their experiences and worries about the pandemic’s impact on their overall health. 

    The article, appearing in the Journal of Psychosocial Oncology, finds the impact of the pandemic on cancer survivors and the broader health care system is widespread and exacerbated by serious gaps in the health care system. 

    For this study, investigators led by Corinne Leach, MPH, MS, PhD, and colleagues, examined cancer survivor worries in relation to treatment, infection, and finances early in the U.S. pandemic. Data for this study came from a survey dated March 25 to April 8, 2020 from the 2019-2020 American Cancer Society Cancer Action Network’s (ACS CAN) Survivor Views Panel. 

    “This study demonstrates the importance of clear communication between healthcare providers and patients experiencing concerns and uncertainties that may affect mental health during the pandemic as the care provision landscape continues to change,” said Dr. Leach.  

    Key findings from this study include:

    • Many survivors experienced disruptions in health care treatments. 
    • 77% worried they are high risk for serious health impact and were concerned about ICU admission or death if infected with COVID-19. 
    • 27% worried the pandemic will make it hard to afford cancer care. Respondents shared concerns of deciding what would be most important in terms of having medicine or food. 
    • The fear of getting sick and uncertainty over just how worried survivors should be because of COVID was pervasive for cancer survivors, leading to reported self-induced measures to reduce their risk of infection, such as social distancing and mask wearing.
    • Many respondents described social isolation, including overall loneliness and feelings of being isolated due to social distancing, during the COVID-19 pandemic.

    An unanticipated theme that emerged in the qualitative analyses was the concern expressed by survivors around the inability to bring a companion to in-person appointments. Although participants understood and respected the decision of healthcare systems to institute measures to protect staff and patients from COVID-19 infection, survivors seemed to be caught off-guard by the new rule, especially when receiving bad news, such as a cancer recurrence.

    Here are quotes from three of the 972 people surveyed:

    • “There is now SO MUCH MORE ANXIETY! I question everyone in my life in ways that I've never done before. No one comes in or out of my home. My husband (who works in a grocery store) moved out. I'm living in total isolation. Having to decide whether to move forward with treatment and risk contracting COVID-19 or stop treatment and let my cancer grow has been difficult. It's like trying to decide if I want to die by heart attack or stroke. There's no good option!” - 32-year-old female rectal cancer survivor in treatment
    • “I am incredibly worried to go out in public, even to my oncologist's office, in fear that if I am infected, I am at a higher risk for serious impact. I was scheduled to have an MRI next week as routine follow up, but was recommended to postpone it until May due to COVID-19.” - 32-year-old female lung cancer survivor
    • “My surgery is reconstruction. It's considered non-essential, but it is essential to me… I hate this COVID-19, its ruining everything for me. I was ready to move forward with surgery. I am disappointed they are postponing everything.” - 50-year-old breast cancer survivor

    “The delays and cancellations noted by cancer survivors in the survey highlight the need for policy interventions and new delivery models that make it safe for cancer patients to receive care, and the need for public policies that address the financial worries associated with the pandemic,” write the authors. 

    Those policies include increasing federal Medicaid funding to ensure people can get health coverage should they find themselves uninsured, continuing to offer and increase funding for Centers for Disease Control and Prevention cancer screening programs, and providing $15 billion to NIH to restart stalled clinical trials.

    Article: Leach CR, Kirkland EG, Masters M, Sloan K, Rees-Punia E, Patel AV, Watson L. Cancer Survivor Worries about Treatment Disruption and Detrimental Health Outcomes due to the COVID-19 Pandemic. Journal of Psychosocial Oncology. doi: 10.1080/07347332.2021.1888184.

  • Voices from the Field: Why our mission matters now more than ever

    ​Please take a few minutes to watch this video, in which ACS staffer Carrie Franchi, associate director of Development in our North Central Region, shares the story of young Jake Pennar.

    It illustrates so powerfully why our mission matters, and why it is so important that ACS be able to restore its research funding to pre-COVID levels. 

    In 2020, ACS funded a little over $52.8 million in new grants, about half of what we usually fund in a year. We had to cancel the fall cycle last October, a devastating loss of scientific discovery and momentum, but unlike some organizations we did not pull back any funding that we had previously committed to.

    In 2021, we are hopeful that we will be able to invest $100 million in new extramural research grants. You can help, here.

  • $5 million gift funds new Diversity in Cancer Research Program

    We are excited to share that a $5 million gift from the Phillip and Elizabeth Gross Family Endowment will support the creation of the American Cancer Society’s new Diversity in Cancer Research program, a permanent umbrella that will support our effort to foster a more diverse scientific workforce community.  

    This initial investment will launch our Diversity in Research Internship program, which will fund biomedical cancer research internships for undergraduate students from racial or ethnic backgrounds that are underrepresented in the scientific community, with a goal of promoting a more diverse scientific workforce in the long run. 

    Diversity in science is key to invigorating problem-solving, driving innovation, and ultimately positioning the scientific community to better address inequity in cancer prevention, treatment, and care. We hope to sustain the program for about a decade, and continue to fundraise in support of the program. 

    The program will launch this summer with an initial class of 25-40 interns from 5-10 schools around the U.S. Starting in 2022, we anticipate funding about 100 internships at 20-25 programs around the country. We’ll share more about the application process in the months to come.  

    The investment comes as part of the research funding campaign ACS launched last July. The concept – an internship program aimed at increasing diversity within the science community – was developed by Bill Phelps, PhD, SVP, extramural discovery science, and Chris Thomas, senior director, philanthropy, with Tawana Thomas-Johnson, VP, diversity and inclusion, providing strategic guidance at every step of the development and implementation of the program. 

    The Gross family has taken a leadership role in diversity in multiple areas and felt that the ACS Diversity in Research Program was of critical importance and wanted to guarantee it would be a permanent part of ACS.

    “In the fight against cancer, advancements in research provide the best hope for saving millions more lives,” said Elizabeth Gross (pictured here.) “Phill and I believe that creating opportunities for a more diverse community of cancer researchers will not only spur innovation and ingenuity, but it will help eradicate health disparities, build trust across these various communities, and advance cancer care for everyone. It is our joy to assist in this important work alongside the American Cancer Society.”

    For more on the program, contact Bill Phelps. And for questions related to fundraising support for the program, contact Chris Thomas.

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