Advocacy and Policy
Advocacy and Policy
ONS advocates every day for oncology nurses. Our busy agenda in Washington, DC, calls for progress on
- Improving cancer symptom management and palliative care
- Advancing and ensuring access to quality cancer prevention and care
- Strengthening nursing workforce contributions to safeguard public health.
If you're an ONS member, you are a trusted voice in federal policy circles. Our members frequently testify before Congress, the U.S. Food and Drug Administration, and the National Institutes of Health. They influence legislators who need to hear the input of cancer nursing professionals, and learn to partner with them during legislative action workshops hosted by ONS.
Read the ONS health policy agenda for the first session of the 115th Congress.
To learn about policy news relevant to oncology nurses, follow Director of Health Policy Alec Stone on Twitter and read our advocacy and health policy articles in ONS Voice, our flagship news magazine.
To get the latest in oncology policy news delivered straight to your inbox, email Alec and ask to join the Capitol Connections list.
NCI Study Identifies Essential Genes for Cancer Immunotherapy
A new study identifies genes that are necessary in cancer cells for immunotherapy to work, addressing the problem of why some tumors don’t respond to immunotherapy or respond initially but then stop as tumor cells develop resistance to immunotherapy.
Improving Cancer Control in Rural Communities
Two new studies are putting a spotlight on disparities that have received less attention: those in rural communities across the country. The studies—one by NCI researchers (on which I’m a co-author) and one led by researchers from the Centers for Disease Control and Prevention—found that cancer death rates are higher in rural areas than in urban areas. The CDC study also showed that, although cancer deaths rates are decreasing in rural areas, they are doing so more slowly than they are in urban areas.
NCI Study Shows Feasibility of Cancer Screening Protocol for Patients With Li-Fraumeni Syndrome
In a new study from the National Cancer Institute (NCI), part of the National Institutes of Health, researchers found a higher than expected prevalence of cancer at baseline screening in individuals with Li-Fraumeni syndrome (LFS), a rare inherited disorder that leads to a higher risk of developing certain cancers. The research demonstrates the feasibility of a new, comprehensive cancer screening protocol for this high-risk population.
NCI-COG Pediatric MATCH Trial to Test Targeted Drugs in Childhood Cancers
Investigators at the National Cancer Institute (NCI) and the Children’s Oncology Group (COG) announced the opening of enrollment for a unique precision medicine clinical trial. NCI-COG Pediatric Molecular Analysis for Therapy Choice (Pediatric MATCH) is a nationwide trial to explore whether targeted therapies can be effective for children and adolescents with solid tumors that harbor specific genetic mutations and have progressed during or after standard therapy. Pediatric MATCH will incorporate more than eight different study drugs, each targeting a predefined set of genetic mutations, to match patients with therapies aimed at the molecular abnormalities in their tumors.
Social Interaction Affects Cancer Patients’ Response to Treatment
How well cancer patients fared after chemotherapy was affected by their social interaction with other patients during treatment, according to a new study by researchers at the National Human Genome Research Institute (NHGRI), part of the National Institutes of Health, and the University of Oxford in the United Kingdom. Cancer patients were a little more likely to survive for five years or more after chemotherapy if they interacted during chemotherapy with other patients who also survived for five years or more.
Moving Inventions and Ideas from the Lab to Patients: An Interview with Dr. Michael Salgaller
In this interview, Michael Salgaller, Ph.D., who leads the TTC’s Invention Development and Marketing Unit, discusses the center’s efforts to move new technologies developed by NCI and other NIH scientists from the lab to the patient’s bedside.
ONS and 32 Cancer-Related Organizations Oppose Senate's BCRA
The Oncology Nursing Society (ONS) joined 32 cancer-related patient advocacy and professional organizations in opposition to the Senate’s revised Better Care Reconciliation Act (BCRA).
Precision Oncology: Gene Changes Predict Immunotherapy Response
There’s been tremendous excitement in the cancer community recently about the life-saving potential of immunotherapy. In this treatment strategy, a patient’s own immune system is enlisted to control and, in some cases, even cure the cancer. But despite many dramatic stories of response, immunotherapy doesn’t work for everyone. A major challenge has been figuring out how to identify with greater precision which patients are most likely to benefit from this new approach, and how to use that information to develop strategies to expand immunotherapy’s potential.
Study Estimates Number of U.S. Women Living With Metastatic Breast Cancer
A new study shows that the number of women in the United States living with distant metastatic breast cancer (MBC), the most severe form of the disease, is growing. Researchers came to this finding by estimating the number of U.S. women living with MBC, or breast cancer that has spread to distant sites in the body, including women who were initially diagnosed with metastatic disease, and those who developed MBC after an initial diagnosis at an earlier stage.
FDA-Approved Drug Helps Treat Rare Immunologic Disease, Study Finds
Adding the injectable drug mepolizumab to standard treatment for eosinophilic granulomatosis with polyangiitis (EGPA), a rare immunologic disease, significantly improved clinical outcomes among participants in an advanced clinical trial, scientists report.
Random Mutations Play Major Role in Cancer
A new study claims that the reason why many people get cancer is simply just bad luck. The NIH Director weighed in on these claims.
ONS Statement on H.R. 1628, the American Health Care Act of 2017
ONS urges Congress to oppose the American Health Care Act of 2017 in its current form. ONS believes that any federal healthcare law should include
- The provision of comprehensive healthcare coverage with respect to cancer prevention, cancer risk assessment, risk reduction services, genetic counseling, genetic predisposition testing, early detection, and screening procedures is available to everyone through continuous health insurance coverage, irrespective of personal or family health history or preexisting conditions,
- The provision of accessible and affordable health care coverage includes consumer and patient engagement in decision making regarding availability, cost, and efficacy of treatment options and supportive care, and
- Evidence-based conventional and integrative therapies, comprehensive symptom management, palliative care, psychosocial care, and survivorship are options for every patient with cancer.
Read ONS's full statement.
Researchers Use CRISPR Gene-Editing Tool to Help Turn Immune Cells Against Tumors
Using a new tool for editing genomes, known as CRISPR, researchers have genetically engineered immune cells and improved the ability of these cells to kill cancer cells in mice.
Being African-American and Surviving Cancer: Helping to Find Answers
One woman participated in a pilot study that looked into why African-Americans get most types of cancers, like my lung cancer, at higher rates than other racial and ethnic populations and experience poorer survival rates. Here is her first-person account.
Study Shows Platelets Can Deliver Immunotherapy, Reduce Tumor Regrowth
A new study suggests that blood platelets engineered to deliver an immunotherapy drug may effectively eliminate cancer cells missed by surgery and prevent them from forming new tumors.
NCI Launches Study of African-American Cancer Survivors
The Detroit Research on Cancer Survivors (ROCS) study, which will include 5,560 cancer survivors, will support a broad research agenda looking at the major factors affecting cancer progression, recurrence, mortality, and quality of life among African-American cancer survivors.
Three-Drug Combination Extends Survival for Patients with Multiple Myeloma
For newly diagnosed patients with multiple myeloma who plan to delay autologous stem cell transplantation, adding the targeted therapy bortezomib (Velcade®) to a two-drug therapy improves how long they live compared with the doublet therapy alone, a new study has shown.
FDA Approves Rucaparib for BRCA-Positive Ovarian Cancer
On December 19, the Food and Drug Administration (FDA) granted accelerated approval for rucaparib (Rubraca™) to treat some women with advanced ovarian cancer. The drug is approved for women whose cancers have progressed despite treatment with two or more chemotherapies and whose tumors have a mutation in the BRCA1 or BRCA2 genes, as identified by an FDA-approved companion diagnostic test.
Study Finds No Safe Level of Smoking
Many Americans who’ve smoked cigarettes have been successful in their efforts to quit. But there’s some bad news for those who’ve settled for just cutting back: new evidence shows there’s no safe amount of smoking. One cigarette a day, or even less than that, still poses significant risks to your health.
Single Tumor Cells Reveal Clues to Biology of Multiple Myeloma
Individual tumor cells circulating in the blood of patients with multiple myeloma may be a new source of information about the genetic changes driving the disease, according to the results of a pilot study.
Cellular Immunotherapy Targets a Common Human Cancer Mutation
In a study of an immune therapy for colorectal cancer that involved a single patient, a team of researchers at the National Cancer Institute (NCI) identified a method for targeting the cancer-causing protein produced by a mutant form of the KRAS gene. This targeted immunotherapy led to cancer regression in the patient in the study.
No Safe Level of Smoking: Even Low-Intensity Smokers Are at Increased Risk of Earlier Death
People who consistently smoked an average of less than one cigarette per day over their lifetime had a 64 percent higher risk of earlier death than never smokers, and those who smoked between one and 10 cigarettes a day had an 87 percent higher risk of earlier death than never smokers, according to a new study from researchers at the National Cancer Institute (NCI).
Precision Oncology: Epigenetic Patterns Predict Glioblastoma Outcomes
An NIH-funded research team recently published in Nature Communications the most complete portrait to date of the epigenetic patterns characteristic of the glioblastoma genome. Among their findings were patterns associated with how long patients survived after the cancer was detected.
Palliative Care Improves Quality of Life in Cancer Patients
Patients who received palliative care during a bone marrow transplant reported a better quality of life and reduced symptoms during hospitalization.
CDC Updates Recommendations on HPV Vaccine
Adolescents younger than age 15 need only two doses of the human papillomavirus (HPV) vaccine, given at least 6 months apart, instead of three doses, according to new recommendations from the U.S. Centers for Disease Control and Prevention (CDC) and the Advisory Committee on Immunization Practices (ACIP).
Find Clinical Trials in Your Community - NCI Community Oncology Research Program
The NCI Community Oncology Research Program (NCORP) is a national network of investigators, cancer care providers, academic institutions, and other organizations. NCORP conducts multi-site cancer clinical trials and studies in diverse populations in community-based healthcare systems across the United States and Puerto Rico. More info here.
Create a Clinical Trials Network Devoted Exclusively to Immunotherapy
Establish a cancer immunotherapy clinical trials network devoted exclusively to discovering and evaluating immunotherapy approaches with help from this NCI video.
Seven substances added to 14th Report on Carcinogens
The U.S. Department of Health and Human Services 14th Report on Carcinogens includes seven newly reviewed substances, bringing the cumulative total to 248 listings. The Report on Carcinogens is a congressionally mandated report prepared for the HHS Secretary by NTP. The report identifies many different types of environmental factors, collectively called substances, including chemicals; infectious agents, such as viruses; physical agents, such as X-rays and ultraviolet radiation; mixtures of chemicals; and exposure scenarios in two categories—known to be a human carcinogen and reasonably anticipated to be a human carcinogen.
Tumor DNA in Blood May Signal Response to T-Cell Transfer Immunotherapy
A pilot study by NCI researchers suggests that tumor DNA circulating in the blood of patients with cancer might be a biological marker for determining, soon after the treatment has started, whether a form of immunotherapy is likely to work for a given patient.
FDA Approves Pembrolizumab for Head and Neck Cancer
The Food and Drug Administration (FDA) approved pembrolizumab (Keytruda®) on August 5 for the treatment of some patients with an advanced form of head and neck cancer. The approval is for patients with recurrent or metastatic head and neck squamous cell carcinoma (HNSCC) that has continued to progress despite standard-of-care treatment with chemotherapy.
CMS Releases New Prescription Drug Cost Data
The Centers for Medicare & Medicare Services (CMS) released privacy-protected data on the prescription drugs that were paid for under the Medicare Part D Prescription Drug Program in 2014. This is the second release of the data on an annual basis, which shows which prescription drugs were prescribed to Medicare Part D enrollees by physicians and other healthcare professionals.
Survey Shows Broad Support for National Precision Medicine Study
In a recent survey designed to measure public attitudes about the Precision Medicine Initiative (PMI) Cohort Program, a majority of respondents expressed willingness to participate in the nationwide research effort. The findings were published online in PLOS ONE by a team of National Institutes of Health researchers.
CA-125 Testing, CT Scans Still Used for Ovarian Cancer Surveillance Despite Lack of Proven Benefit
Despite evidence of no benefit from a 2009 randomized clinical trial, a new study shows that doctors appear to still routinely use the CA-125 blood test to monitor women for recurrent ovarian cancer. The findings, published July 21 in JAMA Oncology, also suggest that computed tomography (CT) scans continue to be routinely used to check for recurrences even though clinical practice guidelines discourage this practice.
Adolescents Who Wouldn’t Have Smoked May Be Drawn to E-Cigarettes
Some adolescents who otherwise would never have smoked are using e-cigarettes, according to a study published July 11 in the journal Pediatrics. The findings suggest that adolescents are not just using e-cigarettes as a substitute for conventional cigarettes but that e-cigarettes are attracting new users to tobacco products.
How Breast Cancers Resist Chemotherapy
Together, BRCA1 and BRCA2 mutations account for about 20-25% of hereditary breast cancers and 5-10% of all breast cancers. Mutations in these genes also increase the risk of ovarian and other types of cancer. A team of researchers led by Drs. Andre Nussenzweig and Shyam Sharan at NIH’s National Cancer Institute (NCI) examined the roles of BRCA1 and BRCA2 in DNA replication, the process by which the cell copies DNA strands in preparation for cell division.
Mutations Linked to Immunotherapy Resistance
For many patients with melanoma whose tumors shrink after treatment with checkpoint inhibitors—a class of immunotherapy drugs—their tumors eventually grow back despite continued treatment. A new NIH study has identified genetic mechanisms that may be responsible for this acquired treatment resistance in at least some of these patients.
DNA Repair Factor Linked to Breast Cancer May Also Play a Role in Alzheimer Disease
An NIH-funded study shows that certain forms of breast cancer factor 1 (BRCA1) that are already associated with breast and ovarian cancers are now seen to be connected to Alzheimer disease. The finding indicates “that beta-amyloid decreases the levels of the DNA repair gene BRCA1, and at the same time inhibits the ability to form new memories,” said Roderick Corriveau, PhD, program director at NIH’s National Institute of Neurological Disorders and Stroke, which provided funding for the study.
Creative Minds: Fighting Cancer With Supercomputers
Supercomputing has also entered a new dimension of speed, and tomorrow’s machines will leave them in the dust. President Obama signed an executive order in July to launch the National Strategic Computing Initiative, which has the goal of pushing supercomputing to the exascale, or 30 times faster than today’s fastest machines, by 2025. The National Institues of Health (NIH) is part of the team that aims to make this a reality. Find out more about how the NIH is using technology to fight cancer.
NIH Scientists Take on Daunting Yet Rewarding Task of Finding Treatments and Cures for Pancreatic Cancer
National Institues of Health (NIH) scientists are working to overcome challenges to find treatments and cures for pancreatic cancer. Although it's daunting work, their labor comes with ultimate breakthroughs in research to help patients. Watch a video regarding their work here.
New NIH Breast Cancer Study to Focus on Risk Factors and Prevention
The National Institues of Health (NIH) announced a new phase of the Breast Cancer and the Environment Research Program (BCERP), focused on prevention, working across scientific disciplines, and involving new racially and ethnically diverse communities. The focus of the study will be on risk factors that precede breast cancer, such as breast density. This broadened research focus will add to the growing knowledge of environmental and genetic factors that may influence breast cancer risk across the lifespan. Visit the NIH for more information on this study.
CDC Provides Information on Prostate Cancer as a Continuous Public Health Awareness Campaign
Prostate cancer is the most common non-skin cancer and the second leading cause of cancer death among American men. Most prostate cancers grow slowly, and don’t cause any health problems in men who have them. Learn about prostate cancer and talk to your healthcare provider before you decide to get tested or treated. To read more about the symptoms, risk factors, and treatment options, visit here.
NIH Offers Information About Using Genetic Sequencing to Manage Cancer in Children
More than 10,000 new cases of cancer are expected to be diagnosed among children from birth to 14 years of age in the United States this year. More than 1,000 children will die from cancer in 2015, making it the leading cause of death from disease among children. A research team led by Dr. Arul Chinnaiyan at the University of Michigan started a program in 2012 to examine the feasibility of including clinical sequencing information in the care of young patients with cancer. Their goal is to tailor treatment based on the genetic features of a person’s cancer. To read about this research and learn more about “precision medicine”, visit here.
Cancer Metastasis: Trying to Catch the Culprits Earlier
For many people diagnosed with cancer localized to the breast, prostate, or another organ, the outlook after treatment is really quite good. Still, most require follow-up testing because there remains a risk of the cancer recurring, particularly in the first 5 years after a tumor is removed. Catching recurrence at an early, treatable stage can be difficult because even a small number of new or “leftover” tumor cells have the ability to enter the bloodstream or lymphatics and silently spread from the original tumor site and into the lung, brain, liver, and other vital organs—the dangerous process of metastasis. What if there was a way to sound the alarm much earlier—to detect tumor cells just as they are starting to spread? Find out more here.
Are Tobacco Companies Marketing Electronic Cigarettes to Children and Adolescents?
Electronic cigarettes—also called e-cigarettes or electronic nicotine delivery systems—are battery-operated devices that deliver nicotine in vapor. These devices heat a liquid solution of nicotine, flavorings, and other chemicals to produce an aerosol that the user inhales, a process called “vaping.” They are often promoted as safer alternatives to cigarettes and other traditional combustible tobacco products. But while e-cigarettes can deliver nicotine with less of the chemicals known to cause cancer, their health effects haven’t been well studied. E-cigarettes are marketed in ways that can appeal to nonsmokers, especially children and adolescents. Find out more about the research and the marketing efforts here.
New Legislation Affects Medicare Payment Models
In March, the U.S. Congress unveiled legislation to repeal and replace Medicare’s sustainable growth rate schedule, providing for structural reforms of the payment model. The Medicare Access and CHIP Reauthorization Act of 2015 (HR 2) will also extend certain Medicare programs and reauthorize the Children’s Health Insurance Program, which may assist some pediatric patients with cancer. Read the important takeaways for oncology nurses.
Centers for Medicare and Medicaid Services Announce a New Model for Cancer Care
On February 12, the Centers for Medicare and Medicaid Services (CMS) announced a new multi-payer and care delivery model for cancer care. Read our summary.
State of the Union Address Has Implications for Oncology Nurses
President Obama’s State of the Union address touched upon several issues affecting oncology nurses, including the need for affordable healthcare coverage, federal investment in biomedical research and development, and educational opportunities for higher education and graduate degrees. Read our perspective.