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President signs The Henrietta Lacks Enhancing Cancer Research Act

President Trump on Jan. 5 signed into law legislation aimed at improving access to clinical trials for communities of color and decreasing health disparities. 

The Henrietta Lacks Enhancing Cancer Research Act works to increase access and remove barriers to participation in federally sponsored cancer clinical trials among communities that are traditionally underrepresented. It directs the federal government to study policies that impact diverse participation in federally sponsored cancer clinical trials nationwide and recommend potential policy changes that would reduce barriers and make it easier for patients from diverse backgrounds to enroll in clinical trials.

The legislation is named after Henrietta Lacks, a Black woman from Maryland who died from cervical cancer in 1951, and whose cells were taken without her knowledge or consent during her treatment at Johns Hopkins Hospital. They have been used to develop some of modern medicine’s most important breakthroughs, including the development of the polio vaccine and treatments for cancer, HIV/AIDS, and Parkinson’s disease. 

Lacks’ grandson, Alfred Lacks Carter, shared a guest blog on his grandmother’s legacy on ACS CAN’s Cancer CANdor blog on fightcancer.org

Advancing the legislation was one of the legislative asks during the American Cancer Society Cancer Action Network’s (ACS CAN) National Leadership Summit and Lobby Day in September and an important part of ACS CAN’s work to reduce health disparities and ensure that everyone has a fair and just opportunity to prevent, find, treat and survive cancer. 

In a press statement, ACS CAN President Lisa A. Lacasse said, “ACS CAN is honored to have had the chance to work with Congress and the Lacks Family on this bill . . . We cannot achieve our mission of a world with less cancer until we reduce the burden of this disease across all communities.”

For more information about ACS CAN’s advocacy work to reduce health disparities and create health equity, visit www.fightcancer.org/healthdisparities.


  • Congress increases funding for cancer research, prioritizes access to care

    Last night Congress voted on a Fiscal Year (FY) 2021 funding deal that in a tough budget environment included a $1.25 billion increase for the National Institutes of Health (NIH) from 2020, including a nearly $1.2 million increase for the National Cancer Institute (NCI). The COVID pandemic stalled clinical trials that need robust and sustained funding to restart and advance their potentially lifesaving work, so prioritizing robust and sustained increases again in the next Congress will be more critical than ever.

    Prevention

    Congress also prioritized efforts to make cancer prevention more affordable. By passing the Removing Barriers to Colorectal Cancer Screening Act, unexpected out-of-pocket costs Medicare beneficiaries can face after a colonoscopy if a polyp is found and removed will be phased out. Individuals on private health plans enjoy full coverage of colorectal cancer screenings as a result of the Affordable Care Act, but a loophole in Medicare allows seniors to wake up to an unexpected bill amounting to hundreds of dollars. ACS CAN staff and volunteers advocated tirelessly for this legislation for the last decade and helped to secure overwhelming bipartisan support in both the U.S. House of Representatives and the U.S. Senate.

    The Centers for Disease Control and Prevention (CDC) budget includes a $5.8 million increase for cancer control programs. There is an additional $7.5 million for the Office on Smoking and Health (OSH). The bill also requires in-person age verification when online purchases of e-cigarette and vaping products are delivered in an effort to address the youth e-cigarette epidemic

    Access to Care

    Additionally, as part of the year-end package Congress passed the No Surprises Act to prohibit surprise medical billing, a significant step in the right direction to reduce surprise out-of-pocket costs for patients. These costs can often result in forced changes to treatment due to inability to pay and, thus, poorer health outcomes.

    The bill requires Medicaid to cover routine health care costs associated with clinical trials with the inclusion of the Clinical Treatment Act. Every cancer patient who wants to participate in a trial should be able to do so without incurring unjust costs regardless of what kind of insurance they have. This change will provide Medicaid patients greater access to clinical trials. The bill also requires state Medicaid programs to cover non-emergency medical transportation to ensure that beneficiaries who lack access to regular transportation are able to travel to their medical appointments.

    Nonprofit Relief

    Finally, the bill has numerous coronavirus-related relief provisions, including extending a provision to allow charitable donations of up to $600 for a couple and $300 for an individual to be deducted from 2021 taxes under the universal charitable deduction. The deductions will encourage those who can donate to do so during a time when charities which have long served communities have seen increased demand, but received fewer contributions amidst the pandemic-driven economic downturn.

    For more information on the FY 2021 spending deal, please see the press statement from American Cancer Society Cancer Action Network President Lisa A. Lacasse. To learn more about ACS CAN’s federal legislative priorities, visit fightcancer.org. The full press release can be found at: https://www.fightcancer.org/releases/nih-and-nci-funding-increased-fy-2021-budget-deal-access-care-prioritized.

  • House votes to close colorectal cancer screening loophole

    ACS CAN urges the Senate to take up the bill.

    On Dec. 9, the U.S. House of Representatives unanimously passed the Removing Barriers to Colorectal Cancer Screening Act that would phase out surprise out-of-pocket expenses that can act as a barrier to lifesaving colorectal cancer screenings for Medicare beneficiaries.

    Colorectal cancer screenings are covered in full under private health insurance plans as a result of the preventive care provisions of the Affordable Care Act. However, a loophole in Medicare allows for cost-sharing if a polyp is discovered and removed during a screening colonoscopy resulting in Medicare beneficiaries receiving a surprise bill after the procedure, often in the hundreds of dollars. Evidence shows that any potential cost-sharing can deter people from getting a preventive, and potentially lifesaving, screening.

    The following is a statement from Lisa Lacasse, president of the American Cancer Society Cancer Action Network (ACS CAN).

    “In a show of strong, bipartisan support, the U.S. House of Representatives has taken a stand to protect more Americans from colorectal cancer. We know colorectal cancer can be prevented with regular screenings, and that it is more treatable when found early. Yet too many individuals on Medicare are forced to forego this procedure due to the fear of an unexpected cost. Thanks to the House of Representatives’ action today to phase out cost-sharing for colorectal cancer screenings in Medicare, we can further reduce suffering and death from this preventable disease.”

    “Closing the loophole that allows Medicare to charge seniors cost-sharing for colonoscopies when a polyp is found and removed has been a longtime priority for ACS CAN. Our volunteers have worked tirelessly with their Members of Congress to extend to Medicare beneficiaries the coverage and peace of mind that individuals on private health plans currently enjoy.

    “With nearly 150,000 individuals in America expected to be diagnosed with colorectal cancer this year alone and more than 53,000 estimated to die from the disease, ACS CAN and our volunteers across the country strongly urge the Senate to take up and pass this important policy before the end of the 116th Congress. Doing so will help increase colorectal cancer screenings rates and save lives.”


  • House passes clinical trials bill; Senate action needed

    The Henrietta Lacks Enhancing Cancer Research Act had strong bipartisan support.

    On Dec. 9, 2020, the U.S. House of Representatives passed legislation aimed at improving access to clinical trials for communities of color and decreasing health disparities.

    The Henrietta Lacks Enhancing Cancer Research Act works to increase access and remove barriers to participation in federally sponsored cancer clinical trials among communities that are traditionally underrepresented in trials. The bill is named after a Black woman from Baltimore who died from cervical cancer and whose cells cultivated during her treatment have been used to develop some of modern medicine’s most important breakthroughs, including the development of the polio vaccine and treatments for cancer, HIV/AIDS, and Parkinson’s disease.  

    “While cancer impacts everyone, it does not affect everyone equally,” said Lisa Lacasse, president of ACS CAN. “The Henrietta Lacks Enhancing Cancer Research Act is critical to changing this reality, improving cancer outcomes, and reducing health disparities in this country.”

    ACS CAN is pleased to see the bill pass the U.S. House of Representatives with strong bipartisan support. This legislation would direct the federal government to study policies that impact diverse participation in federally sponsored cancer clinical trials nationwide and recommend potential policy changes that would reduce barriers and make it easier for patients from diverse backgrounds to enroll in clinical trials.

    “This year marks Henrietta Lacks’ 100th birthday, and we are proud of all the good that she has done for the world,” said Lawrence Lacks, Sr., Henrietta Lacks’ eldest son. “While Henrietta Lacks’ HeLa cells were taken without her knowledge or consent, her contribution has had a significant and wide-reaching scientific impact. This legislation honors and builds on my mother’s legacy by helping to ensure communities of color have more equitable access to advances in cancer treatment.”

    Communities of color and other medically underserved groups continue to have higher cancer rates and are less likely to be diagnosed early or receive optimal treatment compared to other groups. Yet communities of color, older Americans, rural Americans, and poorer Americans remain under-represented in cancer clinical trials. In addition, there is a 4-fold disparity in the proportion of Blacks diagnosed with cancer in the U.S. as compared to the proportion participating in clinical trials submitted to FDA for drug approval. 

    “The current statistics are unacceptable. Clinical trials represent the best opportunity for all patients to receive the most cutting-edge cancer treatments and need to be easy for patients to access, regardless of race, ethnicity, socioeconomic status, geographic location or age,” Lisa said. “We cannot achieve our mission of a world with less cancer until we reduce the burden of this disease across all communities. Now is the time for meaningful action. ACS CAN urges the Senate to take up and pass this bi-partisan legislation this Congress.”


  • 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.”


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