Report Cancer in the 21st Century

As new research on cancer prevention, treatment and control progresses, there is much to celebrate in the war against cancer. More available cancer prevention information, earlier detection and an increase in treatment options all lead to people living longer. Over the years, state and federal policymakers and health officials have worked diligently to combat cancers by establishing a variety of programs and enacting laws.

However, most experts would agree that the battle is far from over. Cancer is one of the leading causes of death in the U.S. and, according to the American Association of Cancer Care, approximately $183 billion was spent on cancer-related care in 2015. The association estimates the cost of care will increase by 34% ―to $246 billion―by 2030. The American Cancer Society estimates that over 1.8 million new cases of cancer will have been diagnosed and more than 600,000 people will have died of cancer in the United States in 2020. Cancer rates vary by state, often related to historical differences in tobacco use and other lifestyle factors.

Even more grim, cancer has a disproportionate effect on African American populations. The U.S. Department of Health and Human Services Office of Minority Health reports that African Americans have lower five-year survival rates than any other racial and ethnic group. And, they are the most likely population to die from all major types of cancer compared to non-Hispanic white men and women.

As research and policy recommendations for cancer prevention, treatment, control and survivorship are constantly evolving, state and federal lawmakers may face challenges in staying updated and aware of cancer issues. The categories and topics below were derived from the input of scientific experts, patient organizations and other stakeholders who have a deep understanding of cancer-related policies. Please note NCSL provides links to third-party websites for information purposes only and providing these links does not indicate NCSL's support or endorsement of any material.

Access to Care

Access to treatments and services can critically affect the outcomes of people living with cancer. Delays caused by barriers like affording an insurance copay, being uninsured or finding a provider within one’s network can all postpone or prevent screening and treatment. Policies like the Affordable Care Act and various state mandates have lowered some economic hurdles with zero copays for some cancer screenings and other prevention measures. Resources in this category underscore these issues.

Featured Links:

• The National Cancer Institute outlines several recommended cancer screening tests that aim to find cancer before symptom onset, when it may be easier to successfully treat.
• American Lung Association – The State of Lung Cancer
• Accessing Out-of-Network Subspecialty Cancer Care in Marketplace Plans: A Review of Four States
• The Affordable Care Act: How it Helps People with Cancer and Their Families
• Researchers Set Goals for Improving Access to Cancer Care
• LUNGevity – No One Missed
• Consistent Testing Terminology Working Group – Common Cancer Testing Terminology

Access to Insurance

Access to care often hinges on what type of insurance coverage a person has, if any. These resources focus on that intersection.

Featured Links:

• The U.S. Cancer Statistics Data Visualizations tool has new enhancements to help you explore and use the latest cancer data. Cancer screening estimates, HPV vaccination coverage, risk factor estimates, and stage information are now available. The new modules include:
  • Cancer screening (breast, colorectal, and cervical cancer) and risk factor (obesity, nutrition, physical activity, tobacco use, and alcohol consumption) estimates at national, state, and county level.
  • Human papillomavirus (HPV) vaccination coverage estimates for teens aged 13 to 17 years old.
• Association of Neighborhood Measures of Social Determinants of Health with Breast, Cervical, and Colorectal Cancer Screening Rates in the US Midwest
• COBRA: Keeping Health Insurance After Leaving Your Job
• Medicare and Medicaid coverage for prevention, screening, detection and treatment of cancer.
• Types of Health Insurance

Coverage and Cost

A person’s insurance coverage, or lack thereof, often dictates how much they will pay out of pocket, including premiums, copayments, deductibles and coinsurance. Coverage and cost of treatments and prescription drugs are where consumers are likely to face these issues. Resources in this category emphasize this relationship.

Featured Links:

• American Society of Clinical Oncology – Addressing Financial Barriers to Patient Participation in Clinical Trials
• JAMA, June 2022, Barthold, Yueng et al., "Comparison of Screening Colonoscopy Rates After Positive Noninvasive Testing for Colorectal Cancer in States With and Without Cost-Sharing"
• Survivor Views: Cancer & Medical Debt February 2022 Survey Findings Summary, American Cancer Society-Cancer Action Network (ACS-CAN)
• JAMA, Dec. 2021, Fu et al. "Out of Pockets Costs Among Patients With a New Cancer DiagnosisEnrolled in High-Deductible Health Plans vs.Traditional Insurance"
• Each year, the American Cancer Society estimates the numbers of new cancer cases and deaths in the United States and compiles the most recent data on population- based cancer occurrence and outcomes. Cancer Statitstics for 2022 is the latest report.
• Annual Report to the Nation on the Status of Cancer: The American Cancer Society, National Cancer Institute, Centers for Disease Control and Prevention, and North American Association of Central Cancer Registries provide annual information about cancer occurrence and trends in the United States.
  • Part one focuses on national cancer statistics.
  • Part two quantifies patient economic burden associated with cancer care.
• Out-of-Pocket Spending Limits are Crucial for Cancer Patients & Survivors
• Things to Know About the Cost of Your Cancer Treatment Help Paying for Prescription Drugs

Biomarkers and Precision Medicine

Rather than killing tumor cells like traditional chemotherapy treatments, new targeted cancer therapies act on specific cancer related molecules to block tumor cell growth. Some therapies, like chemotherapy, work through a general mechanism of action. When a precise mechanism of action is known, a treatment can be developed which ‘targets’ a particular tumor. Targeted therapies are part of a broader transformative treatment option referred to as precision, or personalized, medicine.

Precision medicine—which customizes a patient’s treatment based on factors like a person’s genomic profile and physical environment—includes testing for biomarkers. A biomarker is a biological molecule, or molecular marker, found in blood, bodily fluids and tissues. Biomarker testing identifies changes in a person’s genes or proteins, whether disease process is present or not and can identify the specific characteristics of the person's disease. Biomarker testing also provides doctors with specific information about which, if any, targeted therapies might be effective, Biomarker testing may reduce the number of adverse drug reactions a person experiences and some studies link testing to increased chances of survival.

How is Biomarker Testing Used?

Biomarkers are often used in clinical trials and can aid in drug discovery. Instead of relying on natural endpoints such as survival rates, biomarkers can be used as surrogates. One study looking at medicines approved between 2015-2019 in the United States and Europe found approximately 65% were associated with at least one biomarker. On the other hand, some research argues against the use of biomarkers for this purpose, citing that overdependence on surrogate endpoints may lead to unsafe or ineffective treatments.

Federal Action

Passed in 2016, the bipartisan 21st Century Cures Act includes the Cancer Moonshot—research funded over seven years meant to boost progress in cancer care—and the Precision Medicine Initiative, a national data collection effort. An essential component of the act is developing a Human Tumor Atlas Network that will aid in identifying novel predictive biomarkers. Under the act, a three-stage submission process was developed to qualify biomarkers for use. Now, as the project concludes its fifth year, over $1 billion in funding has supported 240 research projects involving more than 70 organizations.

Featured Links

• National Hispanic Caucus of State Legislators – Recognizing the Importance of Precision Medicine and Biomarker Testing
• Aimed Alliance – Increase Access to Precision Medicine for Patients With Cancer Through Biomarker Testing
• Women in Government briefing on biomarker testing
• A new study from Milliman provides an actuarial analysis of more robust insurance coverage of comprehensive biomarker testing.
• ACS-CAN – Improving Access to Biomarker Testing
• LUNGevity – Biomarker Testing
• Cancer Support Community – Precision Medicine
• Global Colon Cancer Association – Know your Biomarker
• PhRMA Chart pack: Value of Personalized Medicine
• American Cancer Society Cancer Facts and Statistics available by state and policy resources. ACS-CAN also created videos to highlight the Illinois legislation featuring patients, legislators and partners.
  • Improving Access to Biomarker Testing in Illinois
  • Patient Impact

Additional Resources 

• With the Centers for Disease Control and Prevention's (CDC) Data Explorer, you can search data on six cancer types (lung, female breast, prostate, colorectal, kidney, and melanoma) from 27 cancer registries with new population-based geographies. Population-based geographies allow you to look at data changes related to environmental, community, and health, especially in areas where there are high or low populations in counties. These local data can help guide public health decisions regarding community-based actions and cancer screening services. Subcounty-level cancer data are also available.
• The Centers for Disease Control and Prevention (CDC) has a wide range of cancer-related resources, including U.S. cancer statistics by state, resources for survivors and caregivers, and more.
• CDC’s Division of Cancer Prevention and Control provides a wide variety of data, information and resources dedicated to cancer prevention for everyone.

NCSL provides links to third-party websites for information purposes only. Providing these links does not indicate NCSL's support or endorsement of any third-party site material. Use of brand or manufacturer names also are informational only. NCSL is not responsible for the opinions or facts on such sites.

NCSL would like to acknowledge Amgen for supporting this update.