International Collaboration to Improve Cancer Care in Sub-Saharan Africa Focuses on Resources for Children’s Cancers
NCCN is working on new NCCN Harmonized Guidelines for Sub-Saharan Africa, in collaboration with the African Cancer Coalition (ACC), the American Cancer Society (ACS), and the Clinton Health Access Initiative (CHAI). The organizations are part of Allied Against Cancer, a global multisector effort to improve resource-stratified access to life-saving cancer care in Sub-Saharan Africa. These harmonized guidelines build on the successful implementation of evidence-based, expert consensus context-appropriate recommendations for managing nearly all adult cancers across more than a dozen countries throughout the region. The groups recently reunited in Dar es Salaam, Tanzania, to launch 4 additional NCCN Harmonized Guidelines specifically focused on best practices for treating children with cancer.
NCCN Harmonized Guidelines use color-coded recommendations for optimal cancer care in high-resource settings alongside pragmatic modifications for effective treatment options in low- and mid-resource settings. The guidelines are established in collaboration with local health ministries, providers, and advocates, and are based on the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines)—a recognized standard for clinical direction and policy in cancer management worldwide. NCCN Harmonized Guidelines for Sub-Saharan Africa are available for free at NCCN.org/harmonized or via the Virtual Library of NCCN Guidelines App.
“With approximately 90% of childhood cancers occurring in low- to middle-income countries (LMICs), the need for harmonized treatment guidelines for Sub-Saharan Africa for this unique population is paramount,” said Dr. Edith Matsikidze, Oncologist at Parirenyatwa Hospital in Zimbabwe and member of the African Cancer Coalition. “The collaborations between African experts working together with experts from NCCN will greatly contribute toward standard treatment practices across the African continent. The NCCN Harmonized Guidelines have come at the right time, as we work towards achieving the Global Initiative for Childhood Cancer (GICC) goal of at least a 60% survival rate for childhood cancer in LMICs. The implementation of affordable, available, high-impact, and evidence-based interventions—as outlined in these guidelines—is a pragmatic solution that I would recommend for immediate adoption.”
The new pediatric guidelines will cover:
• Pediatric B-cell lymphomas (ie, non-Hodgkin lymphomas, including Burkitt lymphoma)
• Pediatric central nervous system (CNS) cancers
• Pediatric Hodgkin lymphoma
• Wilms tumor
These add to 51 existing NCCN Harmonized Guidelines for Sub-Saharan Africa providing best practice cancer treatment recommendations for >95% of all adult cancer incidence in the region, including breast, prostate, and cervical cancers. Treatment guidelines for pediatric acute lymphoblastic leukemia as well as supportive care guidelines (eg, adult cancer pain, survivorship, smoking cessation) were published previously.
“Children everywhere should receive the best possible treatment based on the latest evidence and all available resources,” said Jamie Flerlage, MD, St. Jude Children’s Research Hospital, Chair of the NCCN Guidelines Panel forPediatric Hodgkin Lymphoma. “Some children’s cancers, such as Burkitt lymphoma, are more common in Africa than the United States. This initiative allows for a collaborative approach to help pediatric patients, while also learning from expert care providers across the Sub-Saharan region.”
Dr. Flerlage was joined in Tanzania by:
• Anita Mahajan, MD, Mayo Clinic Cancer Center, Vice-Chair, NCCN Guidelines Panel for Pediatric Central Nervous System Cancers
• Al B. Benson III, MD, Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chair, NCCN Guidelines Panels for Colon/Rectal/Anal/Small Bowel Cancers and Hepatobiliary Cancers
NCCN Harmonized Guidelines for Sub-Saharan Africa first debuted in November 2017, during the biennial African Organisation for Research and Training in Cancer (AORTIC) conference in Kigali, Rwanda. They have been officially endorsed in Ethiopia, Malawi, Nigeria, Tanzania, Uganda, and Zambia.
Learn more about NCCN’s collaborative work to define and advance high-quality, high-value, patient-centered cancer care globally at NCCN.org/global.
Improving Cancer Outcomes for LGBTQ+ Patients Requires Earning Trust and Challenging Assumptions
NCCN hosted its annual NCCN Patient Advocacy Summit on December 2, 2022. This year’s dialogue was focused on sexual orientation and gender identity (SOGI), and the many barriers that can prevent LGBTQ+ people with cancer from accessing high-quality care. The impact of homophobia, transphobia, and social determinants of health have been shown to result in worse outcomes for vulnerable populations, particularly when intersecting with the effects of systemic racism. Speakers at NCCN’s patient advocacy summit examined interpersonal and systems-level inequities that drive poorer outcomes for this community, along with opportunities to improve care access and quality.
“We can’t say this enough: there is no high-quality cancer care without equitable cancer care. That means recognizing and addressing the specific hardships facing members of the LGBTQ+ community that can prevent people from having supportive and affirming experiences with healthcare,” said Robert W. Carlson, MD, Chief Executive Officer, NCCN. “Cancer care providers work hard every day to stay up-to-date on the latest innovations, research, and guidelines. Making sure we provide inclusive care is just as impactful, if not more so, for improving outcomes and helping all people with cancer live better lives.”
The summit included a welcome message from Admiral Rachel L. Levine, MD, Assistant Secretary for Health, Department of Health and Human Services, and a keynote address from Dora Hughes, MD, MPH, Chief Medical Officer, Centers for Medicare and Medicaid Innovation.
Panel discussions on breaking barriers and best practices for advancing equity were moderated by Clifford Goodman, PhD, Senior Vice President, The Lewin Group, and included Earl Fowlkes, President/CEO, Center for Black Equity, and Bláz Bush, MEd, Executive Director, LGBTQ+ Health Program, Stanford Medicine.
“Many gaps in our understanding of sexual and gender minority health persist due to insufficient, inaccurate, and inconsistent data collection on sex, gender identity, and sexual orientation,” noted panelist Karen L. Parker, PhD, MSW, Director of the Sexual & Gender Minority Research Office, NIH. “To improve cancer-related health outcomes for sexual and gender minority communities, we must first ensure that data on sexual orientation, gender identity, and variations in sex characteristics are collected, analyzed, and reported so that our understanding of potential health disparities and outcomes is enhanced.”
Many speakers discussed personal experiences of their own and others, in which implicit or explicit bias and discrimination, mistrust, and misunderstanding contributed to negative care experiences or skipping necessary care. They also cited research and data further confirming ongoing issues impacting the quality of care.
“There continues to be bias against the LGBTQ+ community in a clinical setting; something must be done,” said Paula Chambers-Raney, colon cancer survivor and Fight Colorectal Cancer Hope Coordinator. “We must acknowledge that discrimination plays a factor in patient care. We need more access on all spectrums of the patient experience and equality for all in medical care.”
“One-third of LGBTQ+ patients, and more than 60% of transgender patients, reported experiencing discrimination in healthcare in a 2020 national survey,” explained Sean Cahill, PhD, Director of Health Policy Research, The Fenway Institute. “Such discrimination negatively affects physical and mental health, and causes patients to delay or avoid accessing care, including preventive cancer screenings. If we want to reduce cancer disparities affecting LGBTQ+ patients—such as higher risk of breast and ovarian cancer among sexual minority women—we should support policies that reduce discrimination in healthcare.”
Discriminatory experiences could range from direct insults, outright denial of care, and rejection from family, to microaggressions involving which workup tests to perform (eg, skipped pap smears or added pregnancy tests), or gender-coded informational materials. Speakers detailed instances where people avoided necessary screening and treatment out of fear of either having to come out of the closet or go back in, in order to access care. In places where gender-affirming care is being threatened, advocates are seeing a drop-off in access to all types of healthcare for trans people.
“As an oncology nurse, it is clear to me that there are structural issues in our healthcare system that bar LGBTQ+ people with cancer from receiving the care they need,” said Ryne Wilson, DNP, RN, OCN, RN Care Coordinator, University of Minnesota Physicians. “The key area of concern for me is protections for caregivers of LGBTQ+ people with cancer. Often times LGBTQ+ people have chosen families and, although they may not be biological, they still deserve the same employee protections as a biological family member for medical leave to care for their loved ones.”
Ultimately, improvement comes from showing patients more trust and respect, while not making assumptions.
“Trust me that I know my gender, sex, and sexuality. Ask me if you don’t know,” said Archana Pathak, PhD, Associate Professor, Virginia Commonwealth University. “When we say we need to treat the whole person, for the LGBTQ+ community that means understanding the differences between sex, gender, sexuality, and the complex ways in which those are interrelated in our lives. But keep in mind that our communities are vibrant, complex, and diverse. Just because someone has explained their experience to you, it doesn’t mean that it completely translates to my life.”
“We need to understand how historical discrimination and social stigma have led to maladaptive coping, but we also need to be sure we are not stereotyping patients. Knowing the heightened risks of patients is important, but we must balance that with asking questions to ensure we don’t assume behaviors based on someone’s sexual orientation or gender identity,” agreed Mandi L. Pratt-Chapman, PhD, Associate Center Director for Community Outreach, Engagement and Equity, GW Cancer Center; Associate Professor of Medicine, GW School of Medicine and Health Sciences; and Associate Professor of Prevention and Community Health, GW Milken Institute School of Public Health, The George Washington University.
Dr. Pratt-Chapman continued: “It is critical to collect SOGI data in all research to guide the best clinical care for sexual and gender minorities in the future. Right now, we have very little evidence on which to guide clinical care management due to an historical lack of SOGI data collection. In a recent study for which I was a co-investigator, we found that the act of collecting SOGI data in oncology practices was associated with a belief in the importance of these data to the delivery of quality care, as well as leadership support and dedicated resources to support SOGI data collection. Data are important to highlight disparities; but let’s not stop at deficits—we must also look at examples of resiliency.”
The speakers were quick to point out that there is a lot of progress being made. They highlighted the eagerness of most providers to learn and improve, and the introduction of some welcoming policies and procedures. That said, there is still much more that can be done.
“By working same-gender couples and gender diverse people into existing training scenarios, we will normalize diversity while increasing knowledge and comfort without the need to find time for additional training,” said Chasity Burrows Walters, PhD, RN, Senior Director, Patient and Community Education, Memorial Sloan Kettering Cancer Center. “Using gender-inclusive language in cancer screening guidelines is important not only for conveying accurate information but also for creating a sense of welcoming and acceptance.”
Scout, PhD, Executive Director, National LGBT Cancer Network, agreed: “We know very few cancer survivors see anything in their providers’ offices that is welcoming to the LGBTQ+ community—but having that welcoming environment is highly correlated with good care experiences. We feel that bridging this gap is one of the biggest opportunities to improve care for this underserved population.”
Numerous efforts are underway to provide resources to bridge that gap. Several programs were presented during the summit as examples of best practices, and a guide to relevant resources was shared with attendees and the public at NCCN.org/patient-advocacy-resources.
The presentations included an overview of the respectful and inclusive language being used in NCCN Guidelines for Patients, which are free books that support patient and caregiver empowerment with an overview of the latest treatment recommendations. The NCCN Guidelines for Patients were recently honored by the Cancer Patient Education Network with the 2022 Excellence in Cancer Patient Education Award, specifically for their unique support of diversity, equity, and inclusion in breast cancer resources.
Learn more about NCCN’s patient information program, which includes books, webinars, and more, at NCCN.org/patients. Learn more about the NCCN Policy Program at NCCN.org/policy, and view videos from past policy summits at NCCN.org/summits.