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Pandemic anxiety impacting clinical trials

Nearly 1 in 5 cancer patients less likely to enroll for fear of COVID-19 exposure.

A significant portion of cancer patients may be less likely to enroll in a clinical trial due to the ongoing coronavirus pandemic. According to an article published this week in JAMA Oncology, nearly 1 in 5 cancer patients surveyed said the pandemic would make them less likely to enroll in a trial. The top reason given for not enrolling is fear of COVID-19 exposure.

“While most patients would still be willing to take part in a clinical trial during the pandemic, the fear of COVID-19 exposure that would come with participating in a clinical trial is poised to cause many otherwise interested patients from enrolling. This means that trials that already struggled to find enough patients are likely to see reduced enrollment as long as the pandemic continues,” said Mark Fleury, co-author of the article and policy principle for emerging issues at ACS CAN. “The barriers patients already faced pre pandemic made it challenging to take part in clinical trials. Now with the addition of COVID-19, it is even harder and we’re likely to see long-term impacts on the pace of research.”

The finding was based on a survey ACS CAN conducted of cancer patients and survivors between late May and mid-June. Later surveys showed COVID anxiety remains high among patients and fear of contracting the virus were cited—along with facility closures—as one of the main reasons patients delayed cancer care. Cancer patients are among those most at risk for severe effects of the coronavirus.

“The pandemic caused many institutions to stop enrolling new patients on clinical trials, and the assumption was that once facilities reopened, they could get enrollment back to normal. What we’ve found is that so long as the pandemic is still underway, fewer patients are going to volunteer for clinical trials,” said Fleury. “The solution is that we need to get the pandemic under control or find innovative ways like telemedicine visits so that patients can take part in clinical trials without feeling exposed to additional COVID-19 risks.”

The article, Association of the COVID-19 Outbreak With Patient Willingness to Enroll in Clinical Trials, appears in the November 12 edition of JAMA Oncology.


  • ACS CAN issues report on complicated Medicare appeals process

    ​A confusing process leaves patients at risk for delayed or denied care.

    As millions of seniors and other enrollees select their 2021 Medicare health benefits during annual open enrollment, a new ACS CAN report details just how confusing the program’s appeals process can be should a patient need to appeal a claim denial for health care services or prescription drugs.

    The report examines the myriad complex steps, documentation, and timelines involved in appealing denied Medicare claims and how the process might impact patients. The report comes as Congress faces a two-year timeline to act on the projected insolvency of the Medicare Trust Fund—action which is likely to include changes to seniors’ Medicare coverage options that could result in out-of-pocket cost implications.

    “When lawmakers consider significant changes to Medicare enrollee benefits, they often cite the fact that patients can always appeal a decision. Rarely, however, do they consider what the appeals process actually entails,” said Lisa Lacasse, president of ACS CAN. “This report found the confusing and often lengthy appeals process left patients waiting for a decision while their cancer and other symptoms were left untreated.”

    The report’s key findings include:

    • The Medicare appeals process is overly complex and various timelines and documentation requirements can create barriers to care.
    • Many beneficiaries do not exercise their right to appeal and instead might choose to pay out of pocket for services that should be covered by Medicare or choose to forgo care altogether, which could have negative implications for their overall health and wellbeing.
    • Evidence suggests Medicare plans’ default is to deny claims as plans overturned 75% of their denials upon appeal.

    Appeals timelines vary from a few days, under expedited circumstances, to several months depending on the type of appeal and which part of Medicare it falls under. Terminology varies widely as well making the whole process potentially daunting and likely dissuading people from filing appeals.

    Suggested changes to improve appeals for patients include, streamlining the various appeals levels, simplifying and standardizing terminology, providing more oversight into appeals, and allocating more funding to help beneficiaries use appeals when necessary.

    “Those on Medicare are often on a fixed income and are dealing with multiple health issues at once. Being able to get the care they need in a timely manner and at a reasonable cost is essential to ensuring their wellbeing,” Lisa said. “If the Medicare program is going to require beneficiaries to utilize the appeals process to access necessary services, lawmakers must do everything they can to make it as user-friendly as possible for those who need timely access to evidence-based treatment.”

    View the full Medicare appeals report.


  • Congressional Hispanic Caucus Institute Health Summit to feature ACS CAN President Lisa Lacasse

    ACS CAN is partnering with the Congressional Hispanic Caucus Institute (CHCI) to host a virtual plenary session on the social determinants of health. The session, “Addressing Social Determinants of Health in Latino Youth, Children and Families,” will air on November 17 at 3:30 p.m. ET as part of the CHCI’s Annual Health Summit. ACS CAN President Lisa Lacasse will give opening remarks. CHCI is the premier Hispanic nonprofit and nonpartisan 501(c)(3) organization in the country dedicated to developing the next generation of Latino leaders.

    CHCI's Health Summit will bring together Members of Congress, thought leaders, policy makers, corporate executives, healthcare advocates, pharmaceutical, medical and health insurance experts, among others to raise awareness about health and healthcare issues, policies, practices, and trends in the Latino community in an environment that facilitates solution-oriented dialogue.

    This is the second year that ACS CAN is sponsoring the Health Summit, and the first year that Lisa Lacasse is a featured speaker.

    The session and the rest of the Health Summit is free and open to all staff. To register, visit chcihealthsummit.org. Registration closes on November 13.


  • Two tobacco control wins on Election Day

    ​Oregonians approve $2 per pack cigarette tax increase and Oklahomans save tobacco control funds.

    Below is a statement from Lisa Lacasse, president of the American Cancer Society Cancer Action Network (ACS CAN):

    “Tobacco is the leading cause of preventable death nationwide and is linked to at least 13 types of cancer. Reducing use of this deadly product is critical to our mission to end suffering and death from this disease. Given the industry’s known targeting of people with lower incomes, Black communities, American Indians, youth, and LGBTQ individuals, tobacco control efforts are also crucial to reduce cancer disparities in this country. That’s why ACS CAN actively worked to pass Measure 108 in Oregon to increase tobacco taxes and to defeat State Question 814 in Oklahoma that would divert funds dedicated to tobacco prevention and cessation.

    “Oregonians made public health a priority in their vote by passing Measure 108 to raise the state’s cigarette tax by $2 per pack and tax e-cigarettes for the first time in the state. Research shows significantly increasing the tobacco tax is one of the most effective ways to reduce tobacco use – and, as a result, tobacco-related disease, including cancer. Oregon will dedicate a portion of the additional revenue from these taxes to fund crucial tobacco prevention and cessation programs to help those who the tax increase will encourage to quit do so successfully. Funds from the tax will also provide access to health care for men, women and children with lower incomes on the Oregon Health Plan at a time when access to care is more important than ever. With Big Tobacco spending nearly $116.2 million in Oregon each year in marketing to lure new customers into a lifetime of addiction, Oregonians action to loosen Big Tobacco’s grip in their state is a major public health victory.

    “With the passage of Measure 108 in Oregon, the state’s new cigarette tax will increase from $1.33 per pack, currently 32nd in the nation and below the national average, to $3.33 per pack, the highest on the West Coast and 6th highest in the nation. It will increase the national average cigarette tax to $1.86 when it takes effect on January 1. 

    “Oklahomans also put public health first as they voted to stop the legislature from diverting funds away from tobacco prevention and cessation programs in the state. The Tobacco Settlement Endowment (TSET) is key to a healthier Oklahoma. The program supports medically underserved areas by recruiting talented physicians through its loan repayment program, funding health care for rural Oklahomans, as well as supports critical cancer research happening locally in Oklahoma. TSET also operates the state’s quitline, which is one of the highest-rated quitlines in the nation and has served more than 400,000 Oklahomans looking for help to quit tobacco. Oklahoman’s vote to defeat State Question 814 will mean the endowment that funds TSET’s critical programs will not be weakened, protecting rural health care, local cancer research and tobacco control efforts. This vote shows Oklahoman’s desire to continue making public health a priority in their state.”


  • New ACS CAN report underscores the importance of affordable, comprehensive health coverage

    On Oct. 22, the American Cancer Society Cancer Action Network (ACS CAN) released a report detailing the costs of treating cancer, specifically out-of-pocket costs typical cancer patients face. 

    The report found U.S. cancer patients in 2018 spent $5.6 billion in out-of-pocket costs for cancer treatment. Overall, the disease cost the country $183 billion in direct cancer-related health care spending in 2015—an amount that is projected to increase to $246 billion by 2030. 

    It also found cancer-caused financial hardship falls hardest on people of color, those who have lower incomes, and/or have lower education levels and younger patients. 

    The report comes just a few weeks before the Supreme Court hears a case that could invalidate the Affordable Care Act (ACA) and significantly alter how Americans get health care and what they pay for it. 

    The report examines the costs associated with several kinds of cancer through various common insurance types including: a large employer-sponsored plan, a small employer high deductible plan, an individual marketplace plan, a short-term limited duration (STLD) plan, and Medicare. 

    The analysis found a wide range in total patient costs, especially between the ACA-compliant plans and the non-compliant non-comprehensive STLD option. 

    When premiums, deductibles, co-pays, and co-insurance were calculated, patients with comprehensive or ACA-compliant coverage paid between $5,000 out-of-pocket in a large employer plan to over $12,000 in an individual marketplace plan for their care. However, the patient costs in an STLD plan totaled a staggering $52,000, due largely to the fact the plan did not cover prescription drugs and has a deductible of over $12,000. STLD plans, which have proliferated under an administrative rule change, are not required to cover essential health benefits, including prescription medication, and do not have to cap patient expenses. Unfortunately, many enrollees do not realize the inadequacy of this type of coverage when they enroll in a STLD plan. 

    “This report shows just how important it is that patients have access to affordable, comprehensive health coverage,” said Lisa Lacasse, president of ACS CAN. “Research shows that paying five or ten thousand dollars out of pocket – often within a span of only 1-3 months – is extremely challenging even under the best-case scenario. Should the Supreme Court invalidate the health care law and eliminate its patient protections that mitigate these costs, millions more Americans are likely to find a cancer diagnosis to be financially devastating.” 

    Key report findings include:

    • Having insurance coverage and the type of coverage is critical. Benefit design determines how much a patient pays and how and when they’ll pay it. High deductible health plans may have lower monthly premiums, but force patients to pay much higher costs all at once when they get sick, which can be challenging for patients and may lead to delayed tests or treatment.
    • Out-of-pocket limits protect cancer patients, who rely heavily on their insurance benefits to treat their disease. Such patients often hit their maximum spend quickly and once reached do not have to pay cost sharing for in-network covered services.
    • STLD plans put patients at risk for extreme costs as they do not have to cap patient out-of-pocket spending, can have even higher deductibles, and do not have to cover specific essential services.

    Changing insurance plans mid-year can cause spending spikes and higher total costs—a scenario more people may be experiencing due to coronavirus-related layoffs—and that the type of cancer, treatment plan, and treatment duration can cause huge variation in how much patients pay. The patient profiles do not account for out-of-network services, surprise medical bills, transportation and other expenses patients often incur. 

    The full report, along with an executive summary and infographics illustrating specific scenarios and themes, can be found at fightcancer.org/costsofcancer

    Spanish-language versions of the executive summary and infographics also are available on the website

    The report details numerous policy proposals lawmakers should implement to ensure patient access to affordable, comprehensive health coverage and address the high costs of cancer. A recent survey of cancer patients and survivors found access to comprehensive health care that covers all necessary services—during the pandemic and beyond—is patients’ and survivors’ top health-related priority (51%), followed by the availability of such coverage should someone’s job change (20%).

    “We need lawmakers to do everything they can to ease the financial stress cancer patients experience and ensure they’re able to get quality, affordable care,” said Lisa. “That means working together to protect and strengthen the current health care law.”


  • Medicaid Covers Us virtual event replay is now available

    Thank you to those who joined the American Cancer Society Cancer Action Network’s (ACS CAN) virtual event, Medicaid and COVID-19 through the Health Equity LensA replay of the event is now available and can be accessed on the Medicaid Covers Us website.  

    The event, part of the Medicaid Covers US project, featured several nationally recognized experts who explored the role of Medicaid in addressing health and racial disparities that have been further exacerbated by Covid-19. 

    Dr. Jamila Michener, associate professor and Co-Director of the Cornell Center for Health Equity and Dr. Alpa Patel, senior vice president of population science for the American Cancer Society (ACS), shared some insightful research about the disparate impact of COVID-19 and cancer on different populations. Mike Perry, partner at PerryUndem, shared preliminary findings of new messaging research he conducted for ACS CAN exploring changing views on Medicaid and access to care as well as racial health disparities.  

    In addition to the event recording, you can view several short films and videos highlighting the impact of COVID-19 on communities and health care providers in Alabama, Kansas, Louisiana, Oklahoma and Tennessee

    On Wednesday, November 18, the Medicaid Covers US team will be hosting another virtual event – Post-Election Analysis for Medicaid: Messaging, Policies and Action. This event is open to all ACS and ACS CAN staff and volunteers, as well as the public. Register today

    Please contact the Medicaid Covers Us team if you have any questions or feedback about the Medicaid Covers Us project.

  • Join the Oct. 26 webinar on Covid-19's impact on cancer research

    On Monday, Oct. 26, at 3 p.m. ET, National Cancer Institute Director Dr. Ned Sharpless and U.S. Representative Ayanna Pressley (D-Mass.) will join ACS CAN for an event titled Reigniting Research: A Call to Action to Advance Cancer Research and Innovation

    This freevirtual event will focus on the Covid-19 pandemic impact on cancer research, clinical trials and care, and what is needed now to reignite cancer research. 

    Leaders from business, government, health care, and life sciences will join to learn about current challenges and actions that can be taken to help cancer research stay strong. Volunteers are invited to register here.

    To learn more about additional virtual events ACS CAN is hosting throughout the month, visit fightcancer.org/events.


  • ACS CAN survey: Coronavirus health care delays and anxiety persist for cancer patients and survivors months Into pandemic

    full polling memo and an infographic summarizing the findings can be found on fightcancer.org.

    Cancer patients and survivors continue to experience potentially serious coronavirus-related health care delays and high levels of anxiety associated with the ongoing pandemic, according to an American Cancer Society Cancer Action Network (ACS CAN) survey.

    The survey found more than a quarter (26%) of cancer patients and survivors reported delays in their cancer care because of coronavirus. When looking at respondents in active treatment for their cancer, the number increased to nearly one in three (32%). This included 21% of patients in active treatment who reported a delayed or cancelled check-up or follow-up appointment specific to their cancer care, and nearly 1 in 10 (9%) whose medical facility-administered treatment—like chemotherapy or radiation—was affected. 

    A driving factor behind the delays is anxiety among providers and patients alike about the risk of contracting the virus. While most delays in care were due to logistical reasons, like closed facilities (48%), when combined an even greater percentage of delays were due to patients who delayed or cancelled care due to their own (31%) or their providers’ (24%) concerns about patients contracting coronavirus. In total 64% of all respondents, and 74% of those in active treatment, said they were worried about their ability to stay safe if COVID-19 cases continue to increase.

    “Seven months into this pandemic the continued delays cancer patients and survivors report are deeply concerning,” said Lisa Lacasse, president of ACS CAN. “The ongoing spread of the virus threatens to upend critical treatment schedules and delay preventive and diagnostic services that could result in more late-term diagnoses and poorer cancer outcomes for years to come.”

    The survey also found 45% of respondents are worried if COVID-19 cases continue to rise the effect on the health care system will make it harder for them to access their cancer care. Already more than two-thirds of Americans report that their scheduled cancer screenings, such as mammograms and colonoscopies, have been delayed or skipped during the COVID-19 crisis.

    According to the survey, access to comprehensive health care that covers all necessary services—during the pandemic and beyond—is patients’ and survivors’ top health-related priority (51%), followed by the availability of such coverage should someone’s job change (20%). Nearly 1 in 5 (18%) patients and survivors surveyed prioritized reduced out-of-pocket costs for premiums, co-pays, and deductibles, and 8% identified reducing prescription drug costs as a top priority.

    “Cancer patients and survivors are acutely aware of the critical importance of comprehensive health coverage and the need to have access to quality care even if your job changes or you’re laid off,” said Lisa. “Sadly, the pandemic and its associated economic fallout have made these priorities clear to many millions more Americans. The survey underscores the imperative that elected lawmakers at every level of government prioritize access to affordable, comprehensive care that maintains protections for those with pre-existing conditions.” 

    The web-based survey was taken by 2,081 cancer patients and survivors between August 27, 2020 and September 14, 2020. This sample provides a margin of error +/- 3% and 99% confidence level.  


  • Watch the Cancer, COVID, & Black America replay

    As a committed leader in driving health equity, the American Cancer Society and American Cancer Society Action Network partnered with the Professional Football Players Mothers Association (PFPMA) and the Congressional Black Caucus Foundation (CBCF) to debut Cancer, COVID, & Black America as part of the CBCF’s Annual Legislative Congress on Saturday, September 19.

    This informal conversation hosted by former NFL linebacker and Congressional Black Caucus member Rep. Colin Allred and NFL media personality Kirsten Watson, looked at how health disparities are further impacted by COVID-19. Watch the replay

    Participants included PFPMA president and breast cancer survivor Gwendolyn Jenkins and her son Malcolm Jenkins (New Orleans Saints), two-time breast cancer survivor Tarralyn Jones and her son Christian Jones (Detroit Lions), pancreatic cancer survivor Dr. Arica Johnson and her son, Calvin “Megatron” Johnson Jr., retired NFL All-Pro wide receiver (Detroit Lions), breast cancer survivor Lorraine Fox and her son De’Aaron Fox (Sacramento Kings), and medical expert Dr. Jackie Dunmore Griffith.

    A collaboration among staff from ACS CAN, the GHQ Sports Alliances team, GHQ Field Operations, GHQ Diversity & Inclusion, and NER Community Development leadership helped bring this idea to life.

    For additional information, please contact Margaret Belch, strategic director, Regional Sports and Entertainment.


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