New Resource From NCCN Breaks the Silence on Common but Lesser-Known Cause of Cancer Deaths

NCCN announced the publication of a new supportive care patient guideline focused on preventing and treating cancer-associated blood clots, also known as venous thromboembolism (VTE). Research shows that people with cancer are 9 times more likely to experience blood clots than those without cancer. Blood clots are a leading cause of death for people with cancer, second only to the direct effects of the cancer itself.^1,2

The NCCN Guidelines for Patients: Blood Clots and Cancer are available to download for free at NCCN.org/patientguidelines, or via the NCCN Patient Guides for Cancer App, thanks to funding from the NCCN Foundation. Printed versions are available for a nominal fee at Amazon.com.

These guidelines are based on the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Cancer-Associated Venous Thromboembolic Disease, the gold-standard resource that synthesizes the latest evidence and expert consensus to recommend the best options for patient care. These NCCN Guidelines are regularly updated by a multidisciplinary panel that includes cardiologists, radiologists, surgeons, pharmacists, and other cancer care professionals from leading centers across the country. Their recommendations are based on more than 600 peer-reviewed research articles. This new patient guideline puts NCCN’s medical recomendations into easy-to-understand terms, including images, charts, and suggested questions to ask.

“We don’t talk about blood clots enough in oncology, but we’re getting better,” said Michael B. Streiff, MD, Professor of Medicine, The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Chair of the NCCN Guidelines Panel for Cancer-Associated Venous Thromboembolic Disease. “Not only do tumors put people at risk for blood clots, but cancer treatments can also put people at risk. These patient guidelines will educate patients and caregivers about what we can do to prevent clotting, how to recognize the symptoms, and what treatments are available if they experience pulmonary embolism or deep-vein thrombosis.”

“Cancer is a strong risk factor for developing a blood clot, and thrombosis is the second leading cause of death in patients with cancer. Yet, despite the known link between blood clots and cancer, there is still a lack of awareness about thrombosis risk in patients with cancer,” noted Aviva Schwartz, MA, Director, Content and Education, North American Thrombosis Forum. “It’s critical to address this knowledge gap and encourage open conversations between patients and health care providers. These guidelines are an important step forward for patients with cancer and their family members and caregivers.”

According to Dr. Streiff, symptoms of blood clots can sometimes be vague or surprising. He noted that people with cancer should talk to their doctor about any changes in their body, particularly if they experience swelling, redness, deep muscle aches in the legs or arms, shortness of breath, chest pain, back pain, or lightheadedness.

Risk assessment tools for VTE have advanced in recent years, helping doctors to understand which patients should proactively receive medications like anticoagulants (sometimes referred to as blood thinners), and also who should avoid them. The medications are evolving to be safer and easier to take. They are often available in pill form and are less likely to be associated with unwanted bleeding.

NCCN’s patient resources have received several awards for high-quality patient information and have been translated into more than a dozen different languages. There are currently more than 65 different guidelines available, covering treatment for most types of cancer as well as screening and prevention. The NCCN Guidelines for Patients also cover other supportive care topics, including preventing and managing anemia, graft-versus-host disease, nausea and vomiting, immunotherapy side effects, and survivorship. Preventing and treating blood clots is also discussed in several relevant disease-specific NCCN Guidelines for Patients, including for pancreatic cancer, multiple myeloma, and myeloproliferative neoplasms. Visit NCCN.org/patients for more information.

Recommendations for Addressing Health-Related Social Needs in Cancer Care Introduced at NCCN Policy Summit

NCCN, an alliance of leading cancer centers, presented new recommendations for screening and addressing health-related social needs (HRSN) in people with cancer during a policy summit in Washington, DC, on September 12, 2023. The event included a keynote address from Ellen Lukens, Deputy Administrator and Director, The Center for Medicare and Medicaid Innovation (CMMI), and other speakers representing a diverse group of patient advocates, providers, and policymakers.

The new recommendations for measuring and addressing HRSN were created by an NCCN working group chaired by Yelak Biru, MSc, President and Chief Executive Officer of the International Myeloma Foundation, and Loretta Erhunmwunsee, MD, Vice Chair, NCCN DEI Directors Forum; Associate Professor, Division of Thoracic Surgery, and Division of Health Equities, City of Hope National Medical Center. The group proposed 4 core measurements to be assessed in all patients with cancer at least once a year, plus at every care transition point, as a critical component of care.

The working group recommendations identified the following key areas for routine screening: transportation access, housing security, access to food, and financial security.

The recommendations also include details on specific practice, policy, and guidelines approaches to make sure these needs are screened in a thoughtful, educated, empathetic, and culturally sensitive way, and then addressed in similar fashion. The different components were presented by Biru, along with Crystal S. Denlinger, MD, Senior Vice President, Chief Scientific Officer, NCCN. (View the full HRSN recommendations from the NCCN working group at NCCN.org/social-needs.)

“At NCCN, we know that caring for people with cancer must go beyond the clinic in order to achieve the best possible outcomes,” explained Dr. Denlinger. “HRSN—unmet economic and social conditions that affect an individual’s ability to maintain health and well-being—must be accounted for as a standard part of multidisciplinary health care. That means adjusting within a system that was not previously developed with these needs in mind. Our recommendations call for education, advocacy, and engagement so that patients, providers, and policymakers can understand why and how to measure and address HRSN.”

“We asked ourselves, ‘What practice, policy, and guideline recommendations will help close the HRSN-based care gap patients face?’” added Biru. “By implementing routine screening for HRSN, intentionally integrating it into practice, and advocating for policies to make that possible, we can personalize treatment plans, extend care beyond clinics, and drive policy reforms for equitable and patient-centered health care. We hope these actions can redefine cancer care, making it comprehensive, accessible, and just.”

The speakers acknowledged that unaddressed HRSN cause unnecessary suffering across every area of health. But they also pointed out that the complexity, longevity, high costs, and logistical concerns that are frequently associated with cancer care make this disease a particularly important focus for social needs screening.

“When someone is diagnosed with cancer, their life often gets turned upside down and simple things suddenly become difficult,” said David W. Baker, MD, MPH, Executive VP, Editor-in-Chief, Joint Commission Journal on Quality and Patient Safety, The Joint Commission. “People with cancer may have trouble paying for care or may struggle to come in to see a doctor 2 or 3 times a week. If these HRSN are not addressed, they may not be able to adhere to treatment plans, meaning their health and even their life is threatened.”

“I’ve sat with families who, after a cancer diagnosis, tell me they are worried about being able to buy food,” said Eucharia Borden, MSW, LCSW, OSW-C, FAOSW, Vice President of Programs and Health Equity, Family Reach. “I’ve had patients ask me, ‘How can I afford to skip work to go to chemo?’ Treatment requires more than medicine. To truly improve health outcomes, we must ensure patients’ basic needs—food, housing, and transportation—are met first.”

The speakers reiterated that these questions should only be asked when there are also systems in place to follow through with potential solutions. Without action, the panel members feared that screening could increase feelings of distress, shame, and mistrust. To prevent that, the working group advocated that any screening should be followed with connections to relevant community-based organizations working to address these needs. There must also be incentives put in place, such as reimbursement and accreditation, to make sure this happens consistently and systematically.

According to Darcie Green, Executive Director, Latinas Contra Cancer, “HRSN screening should enable patients to feel confident in their care and know that they will be supported. These recommendations must be applied in a patient-centered way that includes a greater investment in the resources needed to address any obstacles that prevent access to equitable care and outcomes.”

“Patient-centered care is the essence of oncology nursing,” agreed Danya Garner, PhD, RN, NPD-BC, OCN, President, Oncology Nursing Society. “As one of the most trusted professions, nurses understand and promote the ethos of the whole person. Addressing the physical, emotional, psychological, and social needs of every patient is critical to survivorship. This is what oncology nurses provide to patients and their families every day.”

Rose Baez, MSN, MBA, Managing Director, Network Quality Innovation and Measurement, Blue Cross Blue Shield Association, discussed some of the work being done by payers to address health disparities and called for national data standards to be developed and adopted in order to address social needs.

“We recommend Congress supports public-private partnerships to address social needs by leveraging the adoption of technology-driven solutions (eg, clinical decision support) and community-based organizations that can improve outcomes for populations at risk of poor health outcomes, especially those experiencing barriers to care and services, and gaps in reducing HRSN,” said Baez.

Juny Simpson, Head of Health Equity, Customer Engagement, Genentech, also spoke to the importance of building partnerships to ensure all communities thrive. She explained, “Our holistic approach involves partnering directly with organizations across the health care ecosystem—including industry, government and regulators, researchers, advocacy groups, community-based organizations, and people directly in the communities most harmed by systemic inequities in health care.”

Bláz Bush, MEd, Executive Director for LGBTQ+ Health Programs, Stanford Medicine, helped shed a light on how the LGBTQ+ community in particular can experience harm while trying to access health care. “LGBTQ+ individuals who need to access cancer-related screenings and treatment may face critical disparities from lack of engagement with the health care system due to negative experiences and mistreatment,” said Bush. “Best practice recommendations to create an affirming environment for patients have existed for over a decade now; it’s time to implement them across the health care system. It is a vital practice to ask about sexual orientation, gender identity, name used, and pronouns; train employees on how to ask and use this information; create accessible, gender-inclusive options and health care rooming guidelines; and use inclusive imagery, educational materials, and signage.”

Overall, the speakers stressed the importance of listening to every patient without making assumptions. Implementing routine screening and standardized tools and best practices can help prevent unconscious bias from influencing care, ultimately reducing disparities in outcomes.

Alan Balch, PhD, Chief Executive Officer, National Patient Advocate Foundation; Nadine Jackson McCleary, MD, MPH, Medical Oncologist, Dana-Farber Cancer Institute; and Robin Yabroff, PhD, MBA, Scientific Vice President of Health Services Research, American Cancer Society, rounded out the panels, which were moderated by health care consultant Clifford Goodman, PhD. Robert W. Carlson, MD, Chief Executive Officer, NCCN, gave an opening address, and Dr. Denlinger returned to close out the program.

NCCN will return to Washington, DC, on December 5, 2023, for the annual NCCN Patient Advocacy Summit. This year the focus will be on Navigating the Care Continuum From Screening Through Survivorship. Learn more and register at NCCN.org/summits.

Latest Blood Cancer Treatment Updates Presented at Annual NCCN Event During Blood Cancer Awareness Month

The NCCN 2023 Annual Congress: Hematologic Malignancies returned to San Francisco on September 22–23, 2023, for the first time since 2019. The meeting featured insights from world-renowned experts on providing optimal, evidence-based treatment for various blood cancers, plus best practices for protecting vulnerable populations in a changing health care landscape.

“We designed a comprehensive program for the entire hematology and oncology team—taking into account the latest advances, conversations, and controversies in blood cancer treatment today,” said Congress Chair Andrew D. Zelenetz, MD, PhD, Memorial Sloan Kettering Cancer Center. “Attendees from all over the world learned about the most up-to-date evidence and expert consensus for improving outcomes for patients with a variety of hematologic malignancies. The event also provided opportunities for networking and questions with leading experts in the field.”

The hybrid event was back in California for the first time in 4 years, following last year’s meeting in New York City. Attendees were also able to attend live online via NCCN’s easy-to-use virtual platform. Sessions were accessible on-demand for 60 days following the event for all registrants.

Some of this year’s featured topics included:

• • Identifying and managing toxicities in patients receiving CAR T-cell therapy

• • Revolutionizing hematologic cancer treatment with bispecific T-cell engagers

• • Integrating new WHO/ICC classification systems

• • Tackling inequities in access and quality of care for patients with multiple myeloma

• • Managing graft-versus-host disease in transplant recipients

• • Prevention and management of blood clots

Speakers also shared information and research pertaining to the treatment of adult acute lymphoblastic leukemia, acute myeloid leukemia, B-cell malignancies, chronic lymphocytic leukemia/small lymphocytic lymphoma, chronic myeloid leukemia, Hodgkin lymphoma, mantle cell lymphoma, multiple myeloma, myelodysplastic syndromes, myelofibrosis, and Waldenström macroglobulinemia.

“This conference sought to provide clear, understandable, and actionable updates to help busy care providers analyze, evaluate, and contextualize new clinical data,” said Wui-Jin Koh, MD, Senior Vice President, Chief Medical Officer, NCCN. “This will help us all to achieve the best possible outcomes for people with blood cancer in a rapidly evolving landscape.”

The NCCN 2024 Annual Conference will be in Orlando, Florida, April 5–7, 2024. Visit NCCN.org/conference for more information.

US Cancer Centers Continue to See Chemotherapy Shortages, According to Update From NCCN

NCCN has released a follow-up survey on the ongoing chemotherapy shortages: 72% of the centers surveyed continue to experience a shortage of carboplatin and 59% are still seeing a shortage of cisplatin. Overall, 86% of centers surveyed reported experiencing a shortage of at least one type of anticancer drug. The updated survey results can be viewed at NCCN.org/platinum-update.

The NCCN Best Practices Committee originally shared survey results in June 2023, which found that 93% of cancer centers surveyed at that time were experiencing a shortage of carboplatin and 70% lacked a steady supply of cisplatin. NCCN’s follow-up survey was conducted September 6–27, 2023.

Both surveys focused on 2 platinum-based generic chemotherapy medications that are recommended for treating hundreds of different cancer scenarios according to the NCCN Drugs & Biologics Compendium (NCCN Compendium). The searchable database features every recommended use for cancer medication found in any of the evidence-based, expert consensus recommendations in the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines)—the recognized standard for clinical direction and policy in cancer management.

“Everyone with cancer should have access to the best possible treatment according to the latest evidence and expert consensus guidelines,” said Robert W. Carlson, MD, Chief Executive Officer, NCCN. “Drug shortages aren’t new, but the widespread impact makes this one particularly alarming. It is extremely concerning that this situation continues despite significant attention and effort over the past few months. We need enduring solutions in order to safeguard people with cancer and address any disparities in care.”

The September 2023 survey included responses from 29 of NCCN’s 33 Member Institutions—all leading academic centers from across the United States—which may not reflect any additional challenges experienced by smaller community practices serving rural and marginalized patients. Nearly all reported being able to continue treating every patient who needs carboplatin or cisplatin, despite lowered supply, primarily by implementing strict waste management strategies.

The survey results also revealed several other key medications that are currently in short supply, including 66% reporting a shortage of methotrexate, 55% for 5-fluorouracil, 45% for fludarabine, and 41% for hydrocortisone.

“These drug shortages are the result of decades of systemic challenges,” said Alyssa Schatz, MSW, Senior Director of Policy and Advocacy, NCCN. “We recognize that comprehensive solutions take time and we appreciate everyone who has put forth proposals to improve investment in generics and our data infrastructure. At the same time, we have to acknowledge that the cancer drug shortage has been ongoing for months, which is unacceptable for anyone impacted by cancer today. These new survey results remind us that we are still in an ongoing crisis and must respond with appropriate urgency.”