Our Mission
NCCS’ mission is to advocate for quality cancer care for all people touched by cancer. Founded by and for cancer survivors, NCCS created the widely accepted definition of survivorship and defines someone as a cancer survivor from the time of diagnosis and for the balance of life
NCCS has worked with legislators and policy makers to represent cancer patients and survivors in efforts to improve their quality of care and quality of life after diagnosis. Our unique niche in the cancer advocacy landscape is promoting policy change to ensure quality cancer care. Our vision is to be an advocacy organization that reflects the needs of all cancer survivors to effect policy change at the national level.
NCCS represents the millions of Americans who share a common experience – the survivorship experience – living with, through, and beyond a cancer diagnosis. That experience has value and can be a transforming positive force. NCCS also knows that cancer survivors and those who care for them face many challenges.
To help meet those challenges, NCCS:
Advocates for changes in how the nation researches, regulates, finances, and delivers quality cancer care.
Empowers cancer survivors through its publications and programs, which provide tools for self-advocacy.
Convenes other cancer organizations to address nationwide public policy issues affecting cancer survivors.
In 1986, the Founders of NCCS set out to establish an organization that would replace the words “cancer victim” with “cancer survivor” and bring about a different notion of the cancer experience. The Founders envisioned an organization that would deal with the full spectrum of survivorship issues related to living with, through, and beyond a cancer diagnosis.
Founded in Albuquerque, New Mexico, NCCS’s diverse leadership included some of the most recognized experts on employment and disability law, health care consumerism, and psychosocial and behavioral research. NCCS quickly developed a reputation as the “go to” organization for how to deal with the physiological, psychosocial, economic, and spiritual issues that accompany a cancer diagnosis.
We are connected through a shared experience — as a patient, caregiver, family, friend, or health care provider. This experience holds great power and an understanding of how to make cancer care better for everyone. The NCCS community works to improve the entire cancer experience, from diagnosis to treatment, transitioning to survivorship, and end of life.
By working with Congress, federal agencies, providers, institutions, and advocates, we strive to transform cancer care to recognize the whole person and not just the disease.
Efforts to reduce harsh side effects of cancer drugs: Recent efforts seek to change how new cancer drugs are tested to reduce harsh side effects experienced by cancer survivors. With advances in cancer treatment, millions of people are living for years with incurable cancers and/or serious side effects. Patients, doctors, and the US Food and Drug Administration (FDA) are urging drug manufacturers to find the lowest effective dose — rather than the “maximum tolerated dose” — when testing new cancer drugs. The FDA’s Project Optimus encourages selection of a dose/doses, balancing drug efficacy with drug safety and tolerability.
What they’re saying: Dr. Timothy Yap, a drug developer at MD Anderson Cancer Center in Houston, says getting the dose right early will lead to more effective drugs in the long run. “If the patients are not taking the drug, then it’s not going to work.”
NCCS submits comments on march-in rights: NCCS joined fellow member organizations of the Cancer Leadership Council in submitting comments on the “Draft Interagency Guidance Framework for Considering the Exercise of March-In Rights” issued by the US Department of Commerce’s National Institute of Standards and Technology (NIST). The draft framework provides that prices can be a relevant consideration for the exercise of march-in rights for products developed pursuant to the Bayh-Dole Act. In the letter, the groups advise NIST to abandon the effort to develop a guidance document related to march-in rights and instead consult with Congress.
Go deeper: Read the letter.
Making Integrative Oncology Regular & Routine: A Practical Guide to Meeting the Demands of Patients and the Needs of Health Systems
May 1, 2024 11:00 AM
Whole person cancer care involves learning what matters most to patients and engaging them in health and wellness behaviors that influence their wellbeing and longevity as cancer is treated. Such care explicitly addresses mind-body-behavior-social and spiritual aspects of a person’s life. This helps oncology teams manage the fear and confusion that come along with the disease, helps oncology teams find greater joy in their work, and returns healing to medicine.
Join the Healing Works Foundation team for a presentation grounded in insights from two years’ worth of data and providing actions that can be implemented to make integrative practices the norm in cancer treatment and survivorship. We will review results of nationally representative surveys among people with cancer and treating oncologists, looking at their usage of and attitudes toward complementary therapies. Importantly, we will review disconnects among doctors and patients, as well as drivers and barriers to increase adoption among both groups. Learn more about NCCS’s Survivorship Champions program for clinicians and researchers:
https://canceradvocacy.org/champions
Last week, we sent Cancer Policy and Advocacy Team (CPAT) members information about registration for the Symposium. Be sure to check your inbox for details. If you’re not a CPAT member, join for free. We are trying to include as many advocates as possible, but we will need your help. We anticipate the event will fill quickly! See what you missed at 2023 CPAT Symposium.
Black, Hispanic Cancer Survivors Face Barriers to Survivorship Health Behaviors
Oncology Nurse Advisor
A recent study investigating the experiences of Hispanic and non-Hispanic Black (NHB) cancer survivors underscores the need for a health care environment that is safe and culturally sensitive — important factors for mitigating the impact of a cancer diagnosis. The study also points to providing continuous support to empower racially/ethnically minoritized cancer survivors in seeking help as a key factor in influencing beneficial health behaviors.
What they’re saying: Researchers said, “A safe and culturally sensitive environment in the health care system with continuous care to support a trusting relationship and empower racially/ethnic minoritized cancer survivors is essential for help-seeking behaviors,” noting that Hispanic and NHB cancer survivors appear to face challenges with maintaining healthy behaviors.
Providing Trauma-Informed Oncologic Care to Sexual and Gender Minority Patients
Oncology Nurse Advisor
Highlighting the critical need for trauma-informed care (TIC) in cancer treatment for sexual and gender minority (SGM) patients, this article highlights the heightened risk of trauma among SGM individuals. Emphasizing principles like safety, choice, collaboration, trustworthiness, and empowerment, the piece offers strategies for clinicians to implement TIC, ensure clear communication and a supportive environment, and address the unique challenges faced by vulnerable SGM patients.
Why it matters: SGM patients often experience discrimination in health care, leading to fears of mistreatment, which is further compounded by a history of adverse childhood experiences, social stigma, and past health care discrimination. According to Mandi L. Pratt-Chapman, MA, PhD, at the George Washington University in Washington, DC, “A patient with a trauma history may have a fear of being treated poorly and may need more signals of safety from their health care team because life has shown them that people are not to be trusted.” She adds that traumatic experiences can make a patient “more fearful and less likely to be able to hear what their provider is saying and more likely to perceive a threat or even experience pain, as trauma makes it harder to think, process, respond, or act in one’s best interest.” The cancer diagnosis, experienced as a new trauma, can exacerbate the effects of previous or concurrent traumas.
National Coalition for Cancer Survivorship
8454 Colesville Road
Suite 930
Silver Spring, Maryland 20910
877-NCC-YES
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