In the wake of the COVID-19 Omicron variant wave that began in early December 2021, the Biden Administration has taken actions to increase testing capacity, including expanding access to at-home tests through neighborhood sites such as health centers and rural clinics and establishing a new federal government website and toll-free number where people can request four free at-home tests. In addition, the Administration is now requiring private insurers to cover the cost of up to 8 at-home COVID tests per enrollee per month, as of January 15, 2022, based on authorities granted by Congress under the Families First Coronavirus Response Act (FFCRA) and the Coronavirus Aid, Relief, and Economic Security (CARES) Act.

While this policy does not apply to Medicare, the Biden Administration recently announced that Medicare will cover the cost of up to 8 at-home COVID tests per month for Medicare beneficiaries with Part B, beginning in early spring. Currently, Medicare does not cover the cost of self-administered at-home tests, though it covers diagnostic lab testing for COVID-19 under Part B. Until Medicare coverage of at-home tests for all Medicare Part B enrollees begins, Medicare Advantage plans (offered by private insurers) have the option to cover at-home tests but are not required to do so.

To assess whether Medicare Advantage plans are covering the cost of at-home COVID tests, we reviewed the websites and spoke with customer service representatives of five of the largest Medicare Advantage insurers that together cover about two-thirds of all Medicare Advantage enrollees (based on 2021 enrollment) (Table 1). We conducted our analysis January 26-28, 2022. We also analyzed access to over-the-counter (OTC) benefits among Medicare Advantage enrollees in 2021, which are an option for coverage of at-home COVID tests in some but not all plans.

As of January 28, 4 of the 5 Medicare Advantage insurers that we examined are not reimbursing enrollees for at-home tests, with only one insurer, Kaiser Permanente, providing coverage of up to 8 at-home tests per month for both their Medicare and private enrollees.

• 1 of the 5 insurers (Kaiser Permanente) will reimburse members for the cost of rapid antigen home tests.
• 1 of the 5 insurers (UnitedHealthcare) states on their website that their “Medicare Advantage members are not eligible for reimbursement of OTC at-home COVID-19 tests purchased without a physician’s order” but that “most of UnitedHealthcare’s Medicare Advantage plans have an OTC benefit that can be used to get OTC at-home COVID-19 tests” (discussed below).
• 3 of the 5 insurers (Humana, CVS Health, Cigna) state on their website that the new at-home testing reimbursement policy does not apply to people on Medicare.

Some Medicare Advantage enrollees may be able to get some coverage of at-home COVID tests through their OTC (over-the-counter) benefit.

• In 2021, 79% of enrollees in individual Medicare Advantage plans (plans open for general enrollment) and 97% of enrollees in Medicare Advantage Special Needs Plans (SNPs) were enrolled in a plan with OTC benefits. Plans that offer an OTC benefit often provide a specified dollar amount toward the purchase of eligible OTC benefits, including non-prescription medications or other health care related items, such as first aid supplies – and that amount varies by plan.
• UnitedHealthcare states that, for those enrollees in the insurer’s Medicare Advantage plans that offer an OTC benefit, this benefit can be used to cover the cost of at-home tests – although because the OTC benefit amount varies by plan, the number of tests that would be covered also varies. For example, some UnitedHealthcare plans cover up to $40 of OTC products per quarter, which would cover the cost of 3 COVID-19 tests every 3 months (based on the $12 reimbursement rate being used by private insurers). Other UHC plans have an OTC benefit of up to $100 per quarter, which would cover 8 tests every 3 months.
• Currently, Humana, CVS Health, Kaiser Permanente, and Cigna are not extending their OTC benefit to the purchase of at-home tests. Enrollees in other Medicare Advantage plans that were not included in our analysis should check with their insurer about the availability of OTC benefits and whether this benefit can be used for the purchase of at-home tests.

CMS’s announcement to cover the cost at-home tests for all Medicare beneficiaries with Part B, including those in traditional Medicare and all Medicare Advantage enrollees, will expand more testing options to one of the groups most at-risk of COVID-19 hospitalizations and death, with adults 65 and older representing about three-fourths of all COVID-19 deaths. Until this coverage takes effect in early spring, in the absence of broad coverage through Medicare Advantage plans, many Medicare beneficiaries may have difficulty affording at-home COVID-19 tests.

More than 60 million people ages 65 and older and younger adults with long-term disabilities are covered by Medicare. Due to their older age and higher likelihood of having serious medical conditions than younger adults, virtually all Medicare beneficiaries are at greater risk of becoming seriously ill if they are infected with SARS-CoV-2, the coronavirus that causes COVID-19. COVID-19 is an infectious disease which currently has no cure, although several therapeutics and vaccines have been or are being developed. Diagnosis of COVID-19 is confirmed through testing, and treatment varies based on the severity of illness. According to data from the Centers for Medicare & Medicaid Services (CMS), through November 20, 2021, there have been over 6 million cases of COVID-19 among Medicare beneficiaries and 1.6 million hospitalizations.

These FAQs review current policies for Medicare coverage and costs associated with testing and treatment for COVID-19, including regulatory changes issued by CMS since the declaration of the public health emergency (first issued on January 31, 2020 and most recently renewed in January 2022), and legislative changes in three bills enacted since the start of the pandemic: the Coronavirus Preparedness and Response Supplemental Appropriations Act, 2020, enacted on March 6, 2020 (Public Law 116-123); the Families First Coronavirus Response Act, enacted on March 18, 2020 (Public Law 116-127); and the Coronavirus Aid, Relief, and Economic Security (CARES) Act, enacted on March 27, 2020 (Public Law 116-136).

Does Medicare cover testing for COVID-19?

In April 2022, the Biden Administration finalized an initiative providing for Medicare coverage of up to 8 at-home COVID tests per month for Medicare beneficiaries with Part B, including beneficiaries in traditional Medicare and Medicare Advantage. Under this new initiative, Medicare beneficiaries can get the tests at no cost from eligible pharmacies and other entities; they do not need to pay for the tests and submit for reimbursement. Medicare Advantage plans can also opt to cover the cost of at-home tests, but this is not required.

Medicare covers diagnostic lab testing for COVID-19 under Part B. Medicare covers medically necessary clinical diagnostic laboratory tests when a doctor or other health practitioner orders them. Under revised rules finalized on September 2, 2020, a beneficiary may receive Medicare coverage for one COVID-19 and related test without the order of a physician or other health practitioner, but then must receive a physician order for any further COVID-19 testing. Medicare also covers serology tests (antibody tests), that can determine whether an individual has been infected with SARS-CoV-2, the virus that causes COVID-19, and developed antibodies to the virus. Medicare Advantage plans are required to cover all Medicare Part A and Part B services, including lab tests for COVID-19.

How much do Medicare beneficiaries pay for COVID-19 testing?

Under the Biden Administration’s initiative for Medicare to cover the cost of up to 8 at-home COVID tests per month for Medicare beneficiaries with Part B, Medicare beneficiaries can get the tests at no cost through eligible pharmacies and other entities during the COVID-19 public health emergency. According to other actions announced by the Biden Administration in December 2021, beneficiaries can also access free at-home tests through neighborhood sites such as health centers and rural clinics and can request four free at-home tests through a federal government website.

Medicare beneficiaries who get a lab test for COVID-19 are not required to pay the Part B deductible or any coinsurance for this test, because clinical diagnostic laboratory tests are covered under traditional Medicare at no cost sharing. Beneficiaries will also not face cost sharing for the COVID-19 serology test, since it is considered to be a diagnostic laboratory test. (Under traditional Medicare, beneficiaries typically face a $233 deductible for Part B services and coinsurance of 20 percent.)

A provision in the Families First Coronavirus Response Act also eliminates beneficiary cost sharing for COVID-19 testing-related services, including the associated physician visit or other outpatient visit (such as hospital observation, E-visit, or emergency department services). A testing-related service is a medical visit furnished during the emergency period that results in ordering or administering the test. The law also eliminates cost sharing for Medicare Advantage enrollees for both the COVID-19 test and testing-related services and prohibits the use of prior authorization or other utilization management requirements for these services.

Does Medicare cover treatment for COVID-19?

Patients who get seriously ill from the virus may need a variety of inpatient and outpatient services. Medicare covers inpatient hospital stays, skilled nursing facility (SNF) stays, some home health visits, and hospice care under Part A. If an inpatient hospitalization is required for treatment of COVID-19, this treatment will be covered for Medicare beneficiaries, including beneficiaries in traditional Medicare and those in Medicare Advantage plans. This includes treatment with therapeutics, such as remdesivir, that are authorized or approved for use in patients hospitalized with COVID-19, for which hospitals are reimbursed a fixed amount that includes the cost of any medicines a patient receives during the inpatient stay, as well as costs associated with other treatments and services. Beneficiaries who need post-acute care following a hospitalization have coverage of SNF stays, but Medicare does not cover long-term services and supports, such as extended stays in a nursing home.

Medicare covers outpatient services, including physician visits, physician-administered and infusion drugs, emergency ambulance transportation, and emergency room visits, under Part B. Based on program instruction, Medicare covers monoclonal antibody infusions, including remdesivir, that are provided in outpatient settings and used to treat mild to moderate COVID-19, even if they are authorized for use by the U.S. Food and Drug Administration (FDA) under an emergency use authorization (EUA), prior to full FDA approval.

Two oral antiviral treatments for COVID-19 from Pfizer and Merck have been authorized for use by the FDA. These treatments will likely be covered under Medicare Part D once they are approved by the FDA; however, the definition of a Part D covered drug does not include drugs authorized for use by the FDA but not FDA-approved. CMS recently issued guidance to Part D plan sponsors, including both stand-alone drug plans and Medicare Advantage prescription drug plans, that provides them flexibilities to offer these oral antivirals to their enrollees and strongly encourages them to do so, though this is not a requirement. In the near term, access to these drugs may be quite limited based on limited supply, although the federal government has purchased millions of doses of these drugs and is distributing them to states.

How much do Medicare beneficiaries pay for COVID-19 treatment?

Beneficiaries who are admitted to a hospital for treatment of COVID-19 would be subject to the Medicare Part A deductible of $1,556 per benefit period in 2022. Part A also requires daily copayments for extended inpatient hospital and SNF stays. For extended hospital stays, beneficiaries would pay a $389 copayment per day (days 61-90) and $778 per day for lifetime reserve days. If a patient is required to be quarantined in the hospital, even if they no longer meet the need for acute inpatient care and would otherwise by discharged, they would not be required to pay an additional deductible for quarantine in a hospital. Traditional Medicare beneficiaries who need post-acute care following a hospitalization would face copayments of $194.50 per day for extended days in a SNF (days 21-100).

For outpatient services covered under Part B, there is a $233 deductible in 2022 and 20 percent coinsurance that applies to most services, including physician visits and emergency ambulance transportation. However, according to a recent CMS program instruction, for COVID-19 monoclonal antibody treatment specifically, an infused treatment provided in outpatient settings, Medicare beneficiaries will pay no cost sharing and the deductible does not apply.

While most traditional Medicare beneficiaries (90% in 2018) have supplemental coverage (such as Medigap, retiree health benefits, or Medicaid) that covers some or all of their cost-sharing requirements, 5.6 million beneficiaries lacked supplemental coverage in 2018, which places them at greater risk of incurring high medical expenses or foregoing medical care due to costs. Medicare does not have an out-of-pocket limit for services covered under Medicare Parts A and B.

Cost-sharing requirements for beneficiaries in Medicare Advantage plans vary across plans. Medicare Advantage plans often charge daily copayments for inpatient hospital stays, emergency room services, and ambulance transportation. Medicare Advantage enrollees can be expected to face varying costs for a hospital stay depending on the length of stay and their plan’s cost-sharing amounts. According to CMS guidance, Medicare Advantage plans may waive or reduce cost sharing for COVID-19-related treatments, and most Medicare Advantage insurers temporarily waived such costs, but many of those waivers have expired. Plans may also waive prior authorization requirements that would apply to services related to COVID-19.

Does Medicare cover vaccines and boosters for COVID-19 and how much do beneficiaries pay?

Medicare Part B covers certain preventive vaccines (influenza, pneumococcal, and Hepatitis B), and these vaccines are not subject to Part B coinsurance and the deductible. Medicare Part B also covers vaccines related to medically necessary treatment. For traditional Medicare beneficiaries who need these medically necessary vaccines, the Part B deductible and 20 percent coinsurance would apply.

Based on a provision in the CARES Act, a vaccine that is approved by the FDA for COVID-19 is covered by Medicare under Part B with no cost sharing for Medicare beneficiaries for the vaccine or its administration; this applies to beneficiaries in both traditional Medicare and Medicare Advantage plans. Although the CARES Act specifically provided for Medicare coverage at no cost for COVID-19 vaccines licensed by the U.S. Food and Drug Administration (FDA), CMS has issued regulations requiring no-cost Medicare coverage of COVID-19 vaccines that are also authorized for use under an emergency use authorization (EUA) but not yet licensed by the FDA. This policy of providing vaccines without cost sharing to Medicare beneficiaries also applies to booster doses.

To date, the FDA has issued EUAs for three COVID-19 vaccines from Pfizer-BioNTech, Moderna, and Janssen, as well as boosters for Pfizer and Moderna after completing a primary series of the vaccine.

What telehealth benefits are covered by Medicare, and how much do beneficiaries pay?

Based on waiver authority included in the Coronavirus Preparedness and Response Supplemental Appropriations Act (and as amended by the CARES Act) the HHS Secretary has waived certain restrictions on Medicare coverage of telehealth services for traditional Medicare beneficiaries during the coronavirus public health emergency. The waiver, effective for services starting on March 6, 2020, allows beneficiaries in any geographic area to receive telehealth services; allows beneficiaries to remain in their homes for telehealth visits reimbursed by Medicare; allows telehealth visits to be delivered via smartphone with real-time audio/video interactive capabilities in lieu of other equipment; and removes the requirement that providers of telehealth services have treated the beneficiary receiving these services in the last three years. A separate provision in the CARES Act allows federally qualified health centers and rural health clinics to provide telehealth services to Medicare beneficiaries during the COVID-19 emergency period. The Consolidated Appropriations Act of 2022 extended these flexibilities for 151 days beginning on the first day after the end of the public health emergency.

Telehealth services are not limited to COVID-19 related services, and can include regular office visits, mental health counseling, and preventive health screenings. During the emergency period, Medicare will also cover some evaluation and management and patient education services provided to patients via audio-only telephone. Based on changes in the Consolidated Appropriations Act of 2021, Medicare has permanently removed geographic restrictions for mental health and substance use services and permanently allows beneficiaries to receive those services at home. Medicare also now permanently covers audio-only visits for mental health and substance use services.

Separate from the time-limited expanded availability of telehealth services, traditional Medicare also covers brief, “virtual check-ins” via telephone or captured video image, and E-visits, for all beneficiaries, regardless of whether they reside in a rural area. These visits are more limited in scope than a full telehealth visit, and there is no originating site requirement.

Medicare covers all types of telehealth services under Part B, so beneficiaries in traditional Medicare who use these benefits are subject to the Part B deductible of $233 in 2022 and 20 percent coinsurance. However, the HHS Office of Inspector General is providing flexibility for providers to reduce or waive cost sharing for telehealth visits during the COVID-19 public health emergency.

Medicare Advantage plans can offer additional telehealth benefits not covered by traditional Medicare, including telehealth visits for beneficiaries provided to enrollees in their own homes, and services provided outside of rural areas. Medicare Advantage plans have flexibility to waive certain requirements regarding coverage and cost sharing in cases of disaster or emergency, such as the COVID-19 outbreak. In response to the coronavirus pandemic, CMS has advised plans that they may waive or reduce cost sharing for telehealth services, as long as plans do this uniformly for all similarly situated enrollees.

Can Medicare beneficiaries get extended supplies of medication?

The Department of Homeland Security recommends that, in advance of a pandemic, people ensure they have a continuous supply of regular prescription drugs. In light of the coronavirus pandemic, a provision in the CARES Act requires Part D plans (both stand-alone drug plans and Medicare Advantage drug plans) to provide up to a 90-day (3 month) supply of covered Part D drugs to enrollees who request it during the public health emergency. (Typically Medicare Part D plans place limits on the amount of medication people can receive at one time and the frequency with which patients can refill their medications.)

According to CMS, for drugs covered under Part B, Medicare and its contractors make decisions locally and on a case-by-case basis as to whether to provide and pay for a greater-than-30 day supply of drugs.

What happens if Medicare beneficiaries in private plans need to receive care from out-of-network providers?

Plans that provide Medicare-covered benefits to Medicare beneficiaries, including stand-alone prescription drug plans and Medicare Advantage plans, typically have provider networks and limit the ability of enrollees to receive Medicare-covered services from out-of-network providers, or charge enrollees more when they receive services from out-of-network providers or pharmacies. In light of the declaration of a public health emergency in response to the coronavirus pandemic, certain special requirements with regard to out-of-network services are in place. During the period of the declared emergency, Medicare Advantage plans are required to cover services at out-of-network facilities that participate in Medicare, and charge enrollees who are affected by the emergency and who receive care at out-of-network facilities no more than they would face if they had received care at an in-network facility.

Part D plan sponsors are also required to ensure that their enrollees have adequate access to covered Part D drugs at out-of-network pharmacies when enrollees cannot reasonably be expected to use in-network pharmacies. Part D plans may also relax restrictions they may have in place with regard to various methods of delivery, such as mail or home delivery, to ensure access to needed medications for enrollees who may be unable to get to a retail pharmacy.

Are there any special rules for Medicare coverage for skilled nursing facility or nursing home residents related to COVID-19?

In response to the national emergency declaration related to the coronavirus pandemic, CMS has waived the requirement for a 3-day prior hospitalization for coverage of a skilled nursing facility (SNF) for those Medicare beneficiaries who need to be transferred as a result of the effect of a disaster or emergency. For beneficiaries who may have recently exhausted their SNF benefits, the waiver from CMS authorizes renewed SNF coverage without first having to start a new benefit period.

Nursing home residents who have Medicare coverage and who need inpatient hospital care, or other Part A, B, or D covered services related to testing and treatment of coronavirus disease, are entitled to those benefits in the same manner that community residents with Medicare are.

Medicare establishes quality and safety standards for nursing facilities with Medicare beds, and has issued guidance to facilities to help curb the spread of coronavirus infections. In the early months of the COVID-19 pandemic, the guidance directed nursing homes to restrict visitation by all visitors and non-essential health care personnel (except in compassionate care situations such as end-of-life), cancel communal dining and other group activities, actively screen residents and staff for symptoms of COVID-19, and use personal protective equipment (PPE).

More recently, CMS has issued reopening recommendations and updated guidance addressing safety standards for visitation in nursing homes to accommodate both indoor and outdoor visitation. Nursing facilities are also required to report COVID-19 data to the Centers for Disease Control and Prevention (CDC), including data on infections and deaths, COVID-19 vaccine status of residents and staff and provide information to residents and their families. They are also required to conduct weekly testing of staff if they are located in states with a positivity rate of 5% or greater.

Of note, CMS guidances to nursing facilities and data reporting requirements do not apply to assisted living facilities, which are regulated by states. Analysis has shown considerable variation across states when it comes to regulations to protect against the spread of coronavirus infections in assisted living facilities, as well as COVID-19 data reporting requirements.

Overall cancer mortality rates have decreased for all racial and ethnic groups, with the largest decrease among Black people.

However, Black people continued to have the highest risk of cancer death (169 per 100,000 people), even as the difference in cancer mortality rates for Black and White people narrowed and White people had the highest rate of new cancers. This increased mortality risk among Black people partly reflects a later stage of disease at diagnosis, although Black patients additionally have lower stage-specific survival for most cancer types. Overall cancer mortality rates were lower for Hispanic, American Indian and Alaska Native, and Asian and Pacific Islander people.

Equity in cancer diagnostics, therapeutics, and clinical trials is one of the goals in a relaunched “Cancer Moonshot” announced by the Biden administration, which aims to reduce the age-adjusted cancer death rate by at least half in the next 25 years. While noting a sharp drop in cancer screenings during the COVID-19 pandemic, the President’s Cancer Panel this week also made recommendations on increasing equitable access to cancer screening.

Our new brief has more on racial disparities in cancer outcomes, screening, and treatment. You can watch our Feb. 3 panel discussion on equity in cancer care here.

Summary

Except for during surges in COVID-19 cases, cancer is the second leading cause of death in the U.S in both men and women nationally, with the majority of cancer related-deaths being due to breast, prostate, lung, and colon cancers. Racial disparities in cancer incidence and outcomes are well-documented, with research showing that they are driven by a combination of structural, economic, and socioenvironmental inequities that are rooted in racism and discrimination, as well as genetic and hereditary factors that may be influenced by the environment. Despite significant advancements and improvements in cancer outcomes and treatment over time, disparities persist.

This brief provides an overview of recent data on cancer incidence and mortality, risk factors, screening, treatment, and outcomes by race and ethnicity. It is based on KFF analysis of United States Cancer Statistics cancer incidence and mortality data (latest available data as of 2018), 2020 Behavioral Risk Factor Surveillance System cancer screening data, and published research. Although this brief focuses on racial disparities in cancer, disparities also occur across other dimensions, including socioeconomic status, exposure to risk factors, geographic location, and receipt of preventive measures.

Overall cancer incidence rates decreased for all racial and ethnic groups between 2013 and 2018, with the largest decreases among American Indian and Alaska Native (AIAN) and Black people. This decrease eliminated a disparity in overall cancer incidence for Black people, although they still have the highest incidence rate for some cancer types. Black people have higher new cancer rates for prostate, and colon and rectum cancer compared to other groups and one of the highest rates of new breast cancers. Moreover, across all cancers and for each cancer type, there are differences within racial and ethnic groups, such as by gender, country of origin, and geographic location.

Cancer mortality rates have also declined across all racial and ethnic groups, with the largest decrease among Black people, but Black people continued to have the highest cancer mortality rate in 2018. As is the case for cancer incidence rates, racial and ethnic patterns of cancer mortality vary by cancer type. Black people have the highest mortality rate for most leading cancer types, including female breast, prostate, and colon and rectum cancer. The higher mortality rate among Black people partly reflects a later stage of disease at diagnosis among Black patients, although Black patients additionally have lower stage-specific survival for most cancer types.

Research shows that the overall rate of cancer screening is lower among Black, Hispanic, Asian, and AIAN populations compared to their White counterparts. However, screening patterns vary across screening types, and people of color are more likely than White people to receive certain types of cancer screening. Data suggest that the COVID-19 pandemic contributed to decreases or delays in cancer screening, which may have exacerbated disparities in cancer screening.

Despite mixed findings regarding cancer screening disparities, research suggests people of color receive later stage diagnoses for some types of cancer compared to their White counterparts. For certain cancers, disparities in stage of diagnosis despite comparable screening rates may be related to screening guidelines not accounting for earlier onset and increased age-specific cancer incidence for different groups, as well as disparities in quality of screening techniques and delays in diagnostic evaluation. Racial disparities in cancer care and treatment have also been identified, particularly for diagnostic and treatment delays, which contribute to worse survival outcomes.

Research suggests that cancer disparities are driven by a combination of inequities within and beyond the health system that are rooted in racism and discrimination. People of color are more likely than their White counterparts to be uninsured and to face other barriers to accessing health care that may limit access to cancer screening, care, and treatment. Beyond health coverage and access to care, discrimination and bias within the health care system and disparities in exposure to risk factors, due largely to underlying social and economic inequities, also drive cancer disparities. While socioeconomic and health care access factors are primary drivers of cancer disparities, research also suggests that hereditary risk and genetic determinants for specific cancer subtypes may explain a portion of disparities. Underrepresentation of people of color in the development of current screening guidelines and in oncology cancer trials may also contribute to disparities.

Overall, the data suggest that continued efforts within and beyond the health care system will be important to reduce ongoing racial disparities in cancer. Within the health care system, these may include efforts to reduce gaps in health insurance, increase access to care, and eliminate discrimination and bias in care and treatment. Beyond the health care system, it will also be important to address broader social and economic factors, including exposure to environmental risks and disparities in behavioral risks. Furthermore, there are ongoing discussions about reevaluating the implications of current cancer screening guidelines for disparities and whether to adjust guidelines or cancer screening approaches to account for higher prevalence and risk and earlier age of onset for certain cancers among different communities. Moving forward, increasing diversity among oncology clinical trials and within the health care workforce also will be important for addressing disparities in cancer care and treatment and ensuring that all people benefit from continued advancements in cancer treatment.

Cancer Incidence by Race and Ethnicity

Overall cancer incidence rates decreased for all racial and ethnic groups between 2013 and 2018, with the largest decreases among AIAN and Black people (Figure 1). This decrease eliminated a disparity in overall cancer incidence for Black people, who had the highest rate of new cancers in 2013 but had a similar cancer incidence rate as White people in 2018. Among the four leading types of cancer, rates of new lung and bronchus and colon and rectum cancer decreased across all racial and ethnic groups from 2013 to 2018. Rates of new prostate cancer cases decreased for Black, Hispanic, and AIAN people, while they remained fairly stable for White and Asian and Pacific Islander people over the period. The decreases narrowed disparities in colon and rectum and prostate cancer incidence rates for Black people over the period. New female breast cancer rates also decreased for AIAN and Black people, while there were small increases in the breast cancer incidence rate for other groups.

Overall, White and Black people have the highest rates of new cancers. Within the U.S., there were over 1.7 million new cancer cases reported in 2018, or 436 new cancer cases for every 100,000 people. White people had the highest rate of new cancers at 437 per 100,000 people, followed by Black people at 427 per 100,000 people, while cancer incidence rates were lower among Hispanic, Asian and Pacific Islander, and AIAN people. Although Asian and Pacific Islander (API) men and women have the lowest overall cancer incidence and mortality, they have among the highest liver and stomach cancer rates, roughly double the rates for White people.

Patterns of cancer incidence by race and ethnicity vary across cancer types. Female breast, prostate, lung and bronchus, and colon and rectum cancers had the highest rates of new cancers in 2018. Although White or Black people had the highest incident rates across these cancer types, patterns of incidence by race and ethnicity varied by type (Figure 2):

• Female breast cancer. Like cancers overall, White people had the highest rate of new female breast cancers (128 per 100,000 females), followed by Black people (121 per 100,000 females). Other racial/ethnic groups had lower incidence rates, particularly AIAN people, whose new female breast cancer rate was roughly half the rate for White people at 65 per 100,000 females.
• Prostate cancer. Black people had the highest rate of new prostate cancers at 164 per 100,000 males, followed by White people at 99 per 100,000 males and Hispanic people at 80 per 100,000 males. Asian and Pacific Islander and AIAN people were substantially less likely to have a new prostate cancer case, as their rates were more than three times lower than the rate for Black people.
• Lung and bronchus cancer. Rates of new lung and bronchus cancer were similar for White and Black people at 55 and 54 per 100,000 people, respectively, while rates were lower for other groups and lowest for Hispanic people at 27 per 100,000.
• Colon and rectum cancer. Black people had the highest rate of new colon and rectum cancer (40 per 100,000 people), followed by White and Hispanic people, at 36 and 33 per 100,000, respectively. The lowest rate of new colon and rectum cancers was among AIAN people at 26 per 100,000 people.

Across all cancers and for each cancer type there are differences in incidence rates within racial and ethnic groups, such as by gender, geographic location, and country of origin. For example, overall cancer incidence rates were higher for men than women among White, Black, Hispanic, and AIAN people in 2018, while they were higher for women among Asian and Pacific Islander people. Black men have the highest rates of age-adjusted lung cancer incidence among all groups. In general, rural populations have higher incidence of preventable cancers and higher mortality compared to their urban counterparts, although cancer incidence is higher in urban areas for some types of cancer, such as breast and prostate cancer. Research further shows a similar pattern for people of color in rural areas, who generally have higher cancer incidence and mortality for preventable cancers compared to their urban counterparts. Other research has found that Black women in rural counties had higher incidence of regional cervical cancer than those in urban counties, and White women in rural counties had higher incidence than those in urban counties for cervical cancer at every stage, while there were no rural-urban differences among Hispanic women. Research also shows that, within racial and ethnic groups, there is wide variation in cancer incidence between U.S.-born and foreign-born people living in the U.S. For example, studies show that foreign-born Hispanic and Asian people have higher incidence of gastric cancer than their U.S. born counterparts, largely due to increased infection from H. pylori, which is endemic to multiple Latin American and Asian countries. However, compared to foreign-born Latino people, U.S.-born Latino people have higher rates of breast, colorectal, prostate, lung, and liver cancers, and U.S.-born Chinese and Filipina people have higher breast and colorectal cancer incidence compared to their foreign-born counterparts.

Cancer Mortality by Race and Ethnicity

Overall cancer mortality rates decreased for all racial and ethnic groups, with the largest decrease among Black people, but Black people continued to have the highest cancer mortality rate in 2018 (Figure 3). Between 2013 and 2018, the difference between the overall cancer mortality rate for Black and White people narrowed, but Black people remained at higher risk for cancer death. Among the leading four types of cancer death, mortality rates for female breast cancer decreased for White, Black, and Hispanic people and increased for Asian and Pacific Islander and AIAN people. Colon and rectum and lung and bronchus cancer mortality rates decreased across all racial and ethnic groups, while prostate cancer mortality rates decreased for Black and AIAN people but remained fairly stable for White and Asian and Pacific Islander people. Decreases over the period narrowed disparities in mortality for Black people for colon and rectum, lung and bronchus, and prostate cancer, although they remained at higher risk for dying from colon and rectum and prostate cancer compared to White people. The decreases largely eliminated the difference in lung and bronchus mortality rates between Black and White people, while the difference in breast cancer mortality rates remained largely stable.

Black people are at the highest risk for cancer death even though White people have the highest rate of new cancers. This increased mortality risk partly reflects a later stage of disease at diagnosis among Black patients, although Black patients additionally have lower stage-specific survival for most cancer types. In 2018, Black people had the highest cancer mortality rate at 169 per 100,000 people, followed by White people at 150 per 100,000 (Figure 4). Rates were lower for Hispanic, AIAN, and Asian and Pacific Islander people. As is the case for cancer incidence rates, racial and ethnic patterns of cancer mortality vary by cancer type:

• Female breast cancer. Black people had the highest rate of female breast cancer deaths (27 per 100,000 females) followed by White people (19 per 100,000 females), despite White people having the highest rate of new female breast cancers. Female breast cancer death rates for other groups were half or less than the rate for Black people.
• Prostate cancer. Consistent with having the highest incidence of prostate cancer, Black people also had the highest rate of prostate cancer deaths, at 37 per 100,000 males, more than twice as high as the rates for all other groups, which ranged from 9.2 per 100,000 males for Asian and Pacific Islander people to 17.7 per 100,000 males for White people.
• Lung and bronchus cancer. Like patterns in cancer incidence rates, Black and White people are at similar risk for lung and bronchus cancer death, with a mortality rate of 36 per 100,000 people for both groups. These rates are higher than rates for other groups, and more than double the rate for Hispanic people (15 per 100,000 people).
• Colon and rectum cancer. Racial/ethnic patterns of colon and rectum cancer mortality rates also were similar to incidence patterns with Black people having the highest colon and rectum cancer death rate (17 per 100,000 people), followed by White people at 13 per 100,000 people and a slightly lower rate for Hispanic people at 11 per 100,000 people. Asian and Pacific Islander people had the lowest rate of death due to colon and rectum cancer at 9 per 100,000 people.

As is the case for cancer incidence, across all cancers and for each cancer type there are differences in cancer mortality rates within racial and ethnic groups, such as by gender, country of origin, and geographic location. Across racial and ethnic groups, men have higher rates of cancer death compared to women. Notably, there exists variation in cancer mortality between U.S.-born and foreign-born Black people living in the U.S. For example, one study found that U.S.-born Black people experienced higher cancer mortality for cervical, lung and bronchus, colorectal, and prostate cancers compared to Black individuals from the Caribbean. Similarly, compared to foreign-born Latino people, U.S.-born Latino people have worse survival rates for breast, colorectal, prostate, lung, and liver cancers. In contrast, compared to foreign-born Asian people, U.S.-born Asian people experience lower mortality rates across multiple cancers, including breast, colon and rectum, and prostate cancers.

Cancer Screening, Diagnosis, and Treatment by Race and Ethnicity

Research shows that the overall rate of cancer screening is lower among Black, Hispanic, Asian, and AIAN populations compared to their White counterparts, but people of color are more likely than White people to receive certain types of screening. Reasons for these variations in screening patterns across different groups are not well understood. Research suggests that outside of health insurance coverage and geographic differences, participation in cancer screening is related to multiple factors, such as provider recommendation, shared decision-making between patients and providers, perceptions of cancer screening, and gender differences in cancer screening behaviors, which may vary across communities.

• Mammograms. Since implementation of the Affordable Care Act coverage expansions, the share of people who have gone without a recent mammogram fell for some groups but did not change for other groups. Between 2012 (the latest year data are available prior to implementation of the ACA coverage expansions in 2014) and 2020, the share of people in the groups recommended for screening by the U.S. Preventive Services Task Force (USPSTF) who did not receive a recent mammogram fell for White, Black, and Hispanic people. There was no significant change for other groups. Hispanic people had the largest decrease, with the share falling by 11 percentage points from 32% to 21%, and Black people had a 7 percentage point decline from 22% to 15% (Figure 5). In contrast, White people had a smaller 2 percentage point decrease from 24% to 22%. The larger decrease for Hispanic people reversed a disparity and resulted in them being less likely than White people to go without a recent mammogram as of 2020 (21% vs. 22%). The share of Black people who did not receive a mammogram was already slightly lower than White people as of 2012 (22% vs. 24%), and this difference widened to 15% vs. 22% as of 2020. While this improvement likely, in part, reflects the implementation of focused interventions to decrease disparities in breast cancer screening, research also suggests that Black and Hispanic women are more likely than White women to overestimate their screening history. Native Hawaiian and Other Pacific Islander (NHOPI) people also were less likely than White people to go without a recent mammogram as of 2020, while Asian and AIAN people were more likely to go without a mammogram.
• Pap smears. The share of people in the recommended groups for screening who did not receive a recent pap smear did not significantly change for most groups between 2012 and 2020. However, it increased from 17% to 22% for White people and from 31% to 36% for Asian people. As of 2020, Black people were less likely than White people to go without a recent pap smear (17% vs. 22%), while all other groups were more likely to have not received one, with the largest difference for Asian people (36% vs. 22%). However, research has found that Black women compared to all groups are the least likely to receive human papillomavirus (HPV) co-testing with pap smears.
• Colorectal screening. The share of people in the recommended groups for screening who were not up-to-date with colorectal cancer screening decreased for most groups between 2012 and 2020. Native Hawaiian and Other Pacific Islander (NHOPI) people had the largest decrease, with the share falling by 18 percentage points from 46% to 28%, followed by Hispanic people who had a decrease of 10 percentage points, from 47% to 37%. As of 2020, Hispanic, Asian, and AIAN people were more likely than White people to not be up to date with colorectal cancer screening tests, while there were no significant differences between White and Black people in the recommended screening group.
• Other research suggests that African American people face disparities in receipt of prostate screening relative to their increased risk. Similarly, eligible Black adults are less likely to undergo lung cancer screening compared to all other groups and less likely to complete subsequent annual screening for lung cancer compared to White patients. Individuals in rural areas, in general, are less likely to receive cancer screening compared to their urban counterparts, though these findings are mixed for different racial and ethnic groups.

Data suggest that the COVID-19 pandemic contributed to decreases or delays in cancer screening. Overall, health care use and spending dropped precipitously in the spring of 2020 when many social distancing measures were put in place to mitigate the spread of coronavirus. While health care use and spending began to rebound as the year progressed, overall spending remained down as of December 2020 due to a decrease in utilization of non-COVID medical care. Analysis from the Centers for Disease Control and Prevention (CDC) found that, during California’s stay-at-home order, cervical cancer screening rates among approximately 1.5 million women in the Kaiser Permanente Southern California (KPSC) network decreased approximately 80% compared with baseline. The decrease was similar across all racial/ethnic groups in the KPSC network and returned to near normal after reopening. According to an analysis of electronic health records by Epic Health Research Network, average weekly screenings for breast, colon, and cervical cancers dropped by 94%, 86%, and 94%, respectively, during January 20–April 21, 2020, relative to the averages before January 20, 2020. A follow-up study conducted in July 2020 showed that weekly screening rates were rising but had not yet reached pre-pandemic levels. Other research found that between January-June 2020, breast and cervical cancer screening rates fell among low-income women, with the highest decreases among AIAN, Asian and Pacific Islander, and Hispanic people. Subsequent research in Washington State found similar trends with greater reductions in breast cancer screening for communities of color compared to their White counterparts, and larger fall offs in screening for women in rural areas compared to urban areas during the pandemic. More recent research in Massachusetts found that over the remainder of 2020, while overall cancer screening appeared to have recovered (and even increased compared to pre-pandemic for all cancer screening, except for colonoscopy), the pandemic accentuated racial disparities in mammography for Black and Hispanic patients.

Research suggests that people of color receive later stage diagnoses for some types of cancer compared to their White counterparts. For many cancers, stage of diagnosis may be one of the most important predictors of survival, where people diagnosed at earlier stages have better survival outcomes. For certain cancers, disparities in stage of diagnosis despite comparable screening rates may be related to screening guidelines not accounting for earlier onset and increased age-specific cancer incidence for different groups, as well as disparities in quality of screening techniques and delays in diagnostic evaluation. Furthermore, national surveys do not distinguish between screening and follow-up mammograms, which may contribute to overestimates of screening. Recent analysis from the American Cancer Society finds that, among people diagnosed with cancers for which screening is recommended (lung, colorectum, female breast, cervix, and prostate), Black people generally had the lowest proportion of localized-stage cancer and the highest proportion of distant-stage cancer compared with other racial and ethnic groups, except for prostate cancer, for which AIAN men had the highest proportion of distant-stage disease. Black people were also more likely than other groups to be diagnosed with advanced disease for most other cancer types. Other research shows that, compared to White patients, Black patients present with more advanced disease at diagnosis across prostate, breast, and cervical cancers. Research further shows that, across multiple tumor types, Black patients present with higher-grade and more aggressive disease compared to White patients, and among those with endometrial cancer, Black patients are more likely to have subtypes associated with worse outcomes. Hispanic people are more likely than White people to be diagnosed with distant stage lung cancer, yet have lower lung cancer mortality compared to both Black and White people. Prior work has also found that compared to White patients, AIAN patients have more advanced disease at diagnosis and worse survival outcomes for multiple cancers. For skin cancers, Black patients have the highest percentage of late-stage melanoma and increased mortality compared to White patients, likely secondary to a higher proportion of later stage diagnoses, although other studies have found that increased mortality rates persist even for earlier stage diagnoses.

Racial disparities in cancer care and treatment have also been identified, particularly for diagnostic and treatment delays, which contribute to worse survival outcomes. Evidence suggests that Black patients are less likely than White patients to receive stage-appropriate treatment or guideline-concordant care across multiple types of invasive cancers. Compared to White patients, Black patients are less likely to receive a lung cancer screening after receiving a referral, are less likely to receive a provider recommendation for surgery for lung cancer, and are more likely to refuse surgery after it is recommended. Black people also are treated less frequently with chemotherapy and radiation for colorectal cancer. Furthermore, research has found lower rates of provider recommendation for colorectal screening for Black patients compared to their White counterparts. For breast and gynecological cancers, Black and Hispanic women are less likely than White women to receive certain evidence-based workup procedures or guideline recommended treatments. Other work has found that, compared to White women with similar treatment plans, Black women more often have delays in breast cancer treatment initiation. Research has similarly found that compared to White patients, Black and Hispanic patients have increased delays in receipt of surgery for breast cancer. While less studied, work has found that Asian women have a higher rate of receiving no follow-up after abnormal breast cancer screening compared to White women, with these differences being starkest among Filipina and Vietnamese women.

People of color are also more likely to report unmet needs for cancer care, including supportive care. Across communities of color, unmet socioeconomic and supportive care needs are linked to poor cancer therapy adherence. Even after adjusting for differences in socioeconomic status and health system access, research finds that U.S.-born Black people and foreign-born Latino and Asian people are more likely to perceive an unmet need in cancer care than U.S.-born White people. Furthermore, Hispanic cancer survivors report worse quality of life and unmet supportive care needs (including information about disease, psychological support, pain management, and treatment side effects) compared to White cancer survivors. Similar work has identified a high prevalence of unmet needs in physical health concerns, emotional support, and daily activity challenges for Asian and Pacific Islander cancer survivors and a shortage of patient navigators and support groups for AIAN cancer survivors.

Factors Contributing to Racial Cancer Disparities

Research suggests that racial cancer disparities are driven by a combination of inequities in health coverage and access to care, social and economic factors, and care and treatment that are rooted in racism and discrimination. Moreover, some research suggests that hereditary risk and genetic determinants for specific subtypes of cancer, in addition to environmental influences on genetic expression, may also explain a portion of disparities.

People of color are more likely than their White counterparts to be uninsured and to face other barriers to accessing health care that may limit access to cancer screening, care, and treatment. Data show that people of color are less likely to have health insurance and more likely to face barriers to accessing care, such as not having a usual source of care. Research shows that, overall, uninsured people are more likely than those with insurance to go without needed medical care due to cost and less likely to receive preventive care and services. Research further shows that financial barriers and lack of health insurance prevent adequate cancer care and management and are associated with lower screening, delays in diagnosis, decreased receipt of cancer therapies, and lower treatment adherence. One study found that Hispanic and African American women were more likely than White women to experience delays in receiving adjuvant chemotherapy for breast cancer, and that insurance status was an important factor contributing to these delays. Research also finds that Black and Hispanic cancer patients are more likely than White patients to forego needed cancer treatment because of problems with transportation and that Black patients are more likely to report health care costs as a barrier to cancer care follow-up. Other work shows that lack of doctor recommendations, increased health literacy risks, and competing priorities (working multiple jobs, needing to reschedule physician appointments, and low family income) contribute to differences in receipt of breast cancer screening and pap smear testing among Black and Hispanic women. Among AIAN people, decreased availability of endoscopic services within Indian Health Service and tribal facilities, in addition to underfunded referral systems may contribute to more limited screening compared to the rest of the U.S. population.

Beyond health coverage and access to care, discrimination and bias within the health care system may contribute to cancer disparities. A significant and longstanding body of research suggests that provider and institutional bias and discrimination are drivers of racial health disparities, contributing to racial differences in diagnosis, prognosis, and treatment decisions and differences in experiences obtaining health care. For example, KFF survey data show that Black and Hispanic adults are more likely to report some negative experiences with health care providers, including providers not believing they were telling the truth or refusing to provide pain medication or other treatments they thought they needed. Furthermore, recent research has found that Black patients are over twice as likely as White patients to have at least one negative descriptor in the history and physical notes of their electronic health record. Research finds that women perceiving racial or ethnic-based medical discrimination were less likely to be screened for colorectal and breast cancer compared to those not perceiving discrimination. Other studies have not found a link between race-based discrimination and receipt of cancer screening but have found that perceived discrimination due to other reasons such as age or gender is associated with decreased receipt of pap smears and mammography.

Research also points to the role of communication and interactions between providers and patients in driving disparities. This work suggests that enhancing providers’ ability to provide culturally and linguistically appropriate care, as well as increasing diversity of the health care workforce, may help address health disparities. For example, research shows that limited health literacy and limited English proficiency is associated with a decreased likelihood of breast and colorectal cancer screening among Chinese Americans. Other work finds that disparities in cancer screening among immigrants reflect a combination of cultural beliefs and attitudes, lack of knowledge, and barriers to access, which the authors conclude highlight the importance of developing culturally sensitive interventions to increase cancer screening uptake among these communities. Experiences suggest that socio-culturally and individually-tailored education and outreach, community level interventions which often rely on community health workers or religious leaders, and changes at the health systems level, such as direct referral to cancer screening from primary care providers and increased clinical equipment and staffing, may improve cancer screening and follow-up for people of color.

Disparities in exposure to risk factors, due largely to underlying social and economic inequities, drive cancer disparities. For example, historic housing policies, including redlining, and ongoing economic inequities have resulted in residential segregation that pushed many low-income people and people of color into segregated urban neighborhoods. Many of these neighborhoods have dense industrial facilities that result in high exposure to harmful air toxins. Reflecting these patterns, research finds higher exposure to air toxins that pose cancer risks in neighborhoods with concentrated shares of African American people compared to neighborhoods with higher shares of White people. Similarly, in California, higher exposure to pesticides is associated with increased rates of testicular germ cell cancer, particularly among Latino people. Beyond exposure to environmental risks, certain health behaviors may influence cancer risks and outcomes, such as smoking, obesity, alcohol consumption, and limited physical activity. These individual health behaviors are often shaped by broader social and economic factors, such as access to healthy food, financial ability to purchase food, availability of green space, and time to engage in leisure activities. Data show that AIAN and Black adults are more likely than White adults to smoke, while Asian and Hispanic adults have lower smoking rates. Moreover, Black, AIAN, NHOPI, and Hispanic adults are more likely to be obese than White adults, while Asian adults are less likely to be obese. Research further suggests that Latino and African American people are more likely than their White counterparts to have multiple behavioral risks that may contribute to cancer risk. However, research also finds that Black patients diagnosed with lung cancer are less likely to be chronic smokers compared to White patients and that, even at lower levels of smoking, Black and AIAN patients have higher rates of lung cancer compared to White patients, suggesting that smoking may not be the main driver of lung cancer disparities for these groups. Increased prevalence of comorbidities among people of color, such as diabetes, may also influence disparities in cancer survival and treatment outcomes. Moreover, foreign-born Asian and Latino people may face an increased risk for specific cancers associated with infection with cancer-associated pathogens that have higher incidence in their countries of origin.

While socioeconomic and health care access factors are primary drivers of cancer disparities, research also suggests that hereditary risk and genetic determinants for specific cancer subtypes may explain a portion of disparities. Some genetic determinants may influence susceptibility due to genetic variants or cancer-driven gene mutations in obesity, chronic inflammation, and immune responses. Research further suggests that environmental influences on gene expression may play a role in explaining racial disparities in cancer incidence and progression. For breast cancer, American Cancer Society analyses consistently find that Black people have the second highest incidence rate for female breast cancers after White people, but disproportionately higher rates of triple negative breast cancers and increased likelihood of being diagnosed with high-grade and metastatic breast cancer compared to all other groups. Hormone receptor status for breast cancers is a significant factor contributing to survival disparities, with triple negative breast cancers being less likely to be detected through screening and associated with worse prognosis, high frequency of metastasis, and lower survival compared to other breast cancer subtypes. Research has linked a higher prevalence of triple negative breast cancers among Black women to West African ancestry and specific birthplace. However, prior research has noted that tumor biological differences may contribute less to racial disparities in cancer outcomes compared to health care access barriers, and that there are no racial differences in efficacy of local or systemic therapy for breast, lung, or colorectal cancers.

Current screening guidelines for some cancers may also contribute to disparities by not accounting for differences in cancer risk across communities. Cancer screening guidelines have been developed based on clinical trials that largely underrepresented communities of color and, as such, may not reflect variations in cancer incidence and risk factors among different groups. In 2020, the American Thoracic Society released a statement noting that lung cancer screening guidelines do not recognize disparities in smoking behaviors or lung cancer risk and suggesting that researchers, providers, and professional organizations should consider an approach that includes eligibility assessments for high-risk individuals who are excluded under the guidelines. Research showed that under these USPSTF screening guidelines African American and Hispanic people were less likely than White people to be eligible for lung cancer screening despite having equal or greater risk of lung cancer compared to White smokers. Although the screening guidelines were updated in March 2021, this research further found that while the shares of people eligible for screening increased across groups, these disparities persisted. Moreover, some researchers have suggested that separate prostate cancer screening guidelines should be utilized for African American men given their higher rates of incidence and mortality, pointing to the lack of racial diversity in the studies upon which existing guidelines are based. For breast cancer, work has suggested promoting screening before the age of 50 to reduce mortality disparities, given the younger age of onset and higher incidence of certain cancer types among Black women. The USPSTF currently recommends breast cancer screening prior to the age of 50 as a Grade C guideline, which means it is suggested providers offer or provide this service for selected patients depending on individual circumstances. For colon cancer, there have similarly been efforts to lower the age to begin screening to 45 years for Black patients. As of May 2021, USPSTF guidelines were updated to begin colorectal cancer screening at age 45 as a Grade B recommendation, meaning it is suggested that providers offer the service to all eligible people. This change was made to reflect increasing colorectal cancer incidence at a younger age in the general U.S. population and higher rates among Black and AIAN people.

Underrepresentation of Black and Hispanic adults and other people of color in oncology clinical trials may contribute to cancer treatment and mortality disparities. Research has identified multiple barriers to participation in clinical trials for people of color, including lack of understanding and information about trials, fear and stigma of participating, and time and resource constraints associated with trial participation (including financial burden, time commitment, transportation, and compensation). Furthermore, research suggests that physicians are less likely to discuss clinical trials with patients of color and that trials may exclude a significant portion of Black patients due to co-existing comorbidities or lab cutoffs. Research has found that when offered to participate, at least half of patients offered participation in a clinical trial do participate, and that Black patients participate in clinical trials at similar rates compared to White patients. Moreover, previously limited coverage of clinical trial participation by Medicaid may have exacerbated underrepresentation in trials, given that people of color are disproportionately covered through Medicaid. In 2021, the Centers for Medicare and Medicaid Services issued new requirements for all states to cover routine patient costs associated with clinical trial participation. However, Medicaid does not cover ancillary costs of trial participation, such as those related to childcare and employment. Medicaid does offer a separate non-emergency medical transportation benefit, while the Food and Drug Administration does not consider reimbursement for travel expenses to and from clinical trial sites or associated costs.

Looking Ahead

Overall, the data suggest that continued efforts within and beyond the health care system will be important to reduce ongoing racial disparities in cancer, many of which are rooted in systemic racism. Within the health care system, these may include ongoing efforts to reduce gaps in health insurance, increase access to care, and eliminate discrimination and bias. Beyond the health care system, addressing broader social and economic factors, including exposure to environmental risks and disparities in behavioral risks will also be important. Furthermore, there are ongoing discussions about reevaluating the implications of current cancer screening guidelines for disparities and whether to adjust guidelines or screening approaches to account for higher prevalence and risk for cancers among different communities. Moving forward, increasing diversity among oncology clinical trials and within the health care workforce will also be important for addressing disparities in cancer care and treatment, and ensuring that all people benefit from continued advancements in cancer treatment.

More than 200,000 long-term care facility (LTCF) residents and staff have died due to COVID since the start of the pandemic (Figure 1). The CDC’s latest update reporting data on nursing home deaths as of January 30^th pushes the reported number of deaths over this bleak milestone. This finding comes at a time when the national surge in cases due to the Omicron variant has started to subside, deaths are rising nationwide, and nursing homes have been working to increase vaccination and booster rates among residents and staff, particularly in light of the new federal rule requiring staff vaccination recently allowed to take effect by the Supreme Court. As of January 16^th, approximately 82% of nursing home staff and 87% of nursing home residents are fully vaccinated.

This death count is based on state and federal data sources. For the period between March 2020 and June 2021, the total number of deaths is based on state-reported data on LTCFs, including nursing homes, assisted living, and group homes, that summed to 187,000 resident and staff deaths. For the subsequent period between July 2021 and January 2022, we incorporated data reported to the federal government by nursing facilities (excluding other types of LTCFs), adding another 14,000 resident and staff deaths to the total. The total number of resident and staff deaths from these two sources, roughly 201,000, is likely an undercount of the true number of resident and staff deaths in LTCFs since it excludes deaths in long-term care settings other than nursing homes after June 30^th, 2021. Additionally, not all states reported data on all types of LTCFs prior to June 2021.

COVID-19 deaths in LTCFs make up at least 23% of all COVID-19 deaths in the US (Figure 1). This share has decreased since the start of the pandemic, when LTCF deaths were nearly half of all deaths nationally. This share has dropped over time for a number of reasons, including high rates of vaccination among residents, rising vaccination rates among staff, an increased emphasis on infection control procedures, declining nursing home occupancy, and the lack of data on deaths in assisted living and LTCFs other than nursing homes in recent months. Despite this drop as a share of total deaths, nursing homes have continued to experience disproportionately high case and death rates in the country during the recent surge. Higher case rates may be attributed to the highly transmissible nature of Omicron and the nature of congregate care settings. Higher death rates may be attributed to the high-risk status of those who reside in nursing homes.

COVID-19 data that includes settings across the care continuum is essential to comprehensively assess the impact of COVID-19 on seniors and people with disabilities. To date, the federal government only requires data on COVID-19 cases, deaths, testing, and vaccinations from Medicare and Medicaid-certified nursing facilities. However, there is ample research suggesting that that LTSS users in congregate community based settings outside of nursing homes also face elevated risks of COVID-19 infection due to health conditions and the higher levels of infection transmission in some non-nursing facility congregate settings such as assisted living facilities and group homes. Nearly one million people live in assisted living facilities, a population roughly the size of the nursing home population, but one that lacks comparable data. The data gap for all settings across the care continuum makes it difficult to assess the full impact of the pandemic on seniors and people with disabilities residing outside of nursing homes. Additionally, the federal health care worker vaccine mandate does not apply to all settings across the care continuum, possibly leading to COVID-19 infections with resulting staff shortages in these settings.

Data is not available on the demographics of those who died in long-term care settings, making it difficult to understand the impact of race/ethnicity, age, vaccination status, and other key characteristics on infection severity or likelihood of mortality in LTCFs. While federally available data provides insight into the numbers of cases, deaths, and vaccinations as reported by nursing homes, gaps in data limit the ability to assess the impact more directly among residents and staff, by patient characteristics. Overall, cases and deaths in nursing homes appear to be declining. However, this analysis confirms the disproportionate toll of COVID-19 on people living and working in LTCFs and highlights the importance of comprehensive, timely, and accurate data.

In these brief videos, KFF Director of Public Opinion and Survey Research Liz Hamel examines Vaccine Monitor data to show how uptake of COVID-19 vaccines has changed over time, including the latest push for booster shots. The videos are the latest in the In Focus with KFF series, which features insights from our experts on health care issues in the news.

How has the makeup of who is vaccinated changed over time?

What has convinced people who were initially hesitant to get a COVID-19 vaccine?

Who is likely to have received a COVID-19 booster dose?

3 in 10 of Those with Children Under 5 Expect to Get Them a Shot Right Away Once Eligible

1 in 4 Parents Say Their Student Had to Quarantine in January Due to COVID-19 Infection or Exposure; Overall 4 in 10 Report Some Education Disruption

Growing shares of parents say that their eligible children have gotten at least one dose of a COVID-19 vaccine, and three in ten parents with children under age 5 say they want to get their child vaccinated immediately once they become eligible, a new KFF COVID-19 Vaccine Monitor report shows.

Among parents with children ages 12-17, 61% now say that their child is vaccinated, up from 49% in November. Another 3% now say they plan to get their child vaccinated as soon as possible, and 6% say they want to “wait and see” how it works for others before doing so. Nearly a quarter (23%) of parents with adolescent children say they definitely will not get them vaccinated, while a small share (4%) say they will only do so if it is required for school.

Adolescents and teenagers in this age group are also encouraged to get a booster shot six months after their initial vaccination. One in five (21%) parents with vaccinated children in that age range say their child has already received a booster, while most others say they definitely (41%) or probably (24%) will get them a booster shot.

Among parents of children ages 5-11, who became eligible for a COVID-19 vaccine in early November, a third (33%) say their child is now vaccinated, twice the share that said so in November (16%). In addition, 13% now say they want to get their child vaccinated “right away”, and 19% say they want to “wait and see” before doing so. Others are more resistant, with a quarter (24%) saying they “definitely will not” get their child vaccinated and 9% saying they would “only do so if required for school.

While children under age 5 are not yet eligible to receive any COVID-19 vaccine, three in ten (31%) parents of children that age say they would get their child vaccinated “right away” when able. A similar share says they would want to “wait and see” how it works for other young children first, while a quarter (26%) say they would “definitely not,” and 12% say they would do so “only if required.

Since schools reopened in January after the holidays, more than a quarter (27%) of parents say their child has had to quarantine at home because they tested positive for COVID-19 or were exposed to someone who tested positive, the new Vaccine Monitor survey finds.

In addition, one in five parents (20%) say their school shut down in-person classes or switched to virtually learning at some point in January, and 14% say they kept their child home from school because of the risks of getting COVID-19.

Combined, 41% of parents report at least one of those three types of disruption with their child’s education. This includes half (49%) of Black and Hispanic parents, who are much more likely than White parents to say they kept a child home from school because of the COVID-19 risks (28% and 7%, respectively).

Overall half (50%) say they are worried their child will get seriously ill from COVID-19, including a quarter (25%) who say they are “very worried.” Black and Hispanic parents are also much more likely to be worried about this than White parents (70% and 39%, respectively).

Other findings include:

• About one in seven (14%) parents of unvaccinated children ages 5-17 say that news about the omicron variant makes them more likely to get their vaccinated, while a large majority (79%) say that it makes no difference.
• 3 in 10 (30%) parents of children enrolled in school say their child’s school provided COVID-19 tests for students to take either in person or at home before returning to school after the winter holidays. In addition, about 4 in 10 (39%) parents of children enrolled in school say they tried to purchase an at-home test kit in the past month.

Designed and analyzed by public opinion researchers at KFF, the KFF Vaccine Monitor survey was conducted from January 11-23, 2022 among a nationally representative random digit dial telephone sample of 1,536 adults, including 420 parents or guardians of children under 18. Interviews were conducted in English and Spanish by landline (165) and cell phone (1,371). The margin of sampling error is plus or minus 3 percentage points for the full sample, and plus or minus 6 percentage points for parents of children under 18. For results based on subgroups, the margin of sampling error may be higher.

The KFF COVID-19 Vaccine Monitor is an ongoing research project tracking the public’s attitudes and experiences with COVID-19 vaccinations. Using a combination of surveys and qualitative research, this project tracks the dynamic nature of public opinion as vaccine development and distribution unfold, including vaccine confidence and acceptance, information needs, trusted messengers and messages, as well as the public’s experiences with vaccination.

Across the country, many Americans are having difficulty accessing COVID-19 tests amid the ongoing surge in cases driven by the new Omicron variant. The Biden administration has taken a multi-pronged approach to increase access to COVID-19 tests that includes allowing every household to order up to four free at-home tests, increasing testing in schools, expanding the number of federal testing sites, and requiring private insurers to cover the costs of at-home tests. In addition, under the American Rescue Plan Act (ARPA), state Medicaid and Children’s Health Insurance Program (CHIP) programs are required to cover FDA-authorized at-home COVID-19 tests without cost-sharing. As part of an effort to promote equitable access to tests, the administration also launched a testing supply program in late December that has set aside 25 million rapid at-home self-test kits (or 50 million tests because there are two tests per kit) for distribution by the more than 1,300 community health centers.

Health centers are a national network of safety-net primary care providers that have played a significant role in the COVID-19 response, including facilitating equitable access to vaccinations. To date, health centers have administered nearly 19 million doses of the vaccine, of which more than two-thirds (68%) have gone to people of color. While health centers make up a relatively small proportion (4%) of total vaccinations administered nationally (roughly 530 million doses administered as of mid-January), health centers’ role has focused on vaccinating and providing primary care to some of the hardest-to-reach populations.

Like the vaccine program, the objective of the health center COVID-19 testing supply program is to provide COVID-19 rapid self-tests to communities that are currently facing difficulties accessing COVID-19 tests. Under the program, health centers will be distributing self-tests to patients and community members, with a focus on populations at greatest risk from adverse outcomes related to COVID-19. While the 25 million test kits set aside by the administration for the program is notably less than 28.6 million patients served by health centers in 2020, the federal government expects the number of test kits for the program to last through May 2022. The self-tests provided through the new federal program should supplement other testing services that health centers have been providing throughout the pandemic. Beyond the supply of free self-tests available through the new program, health center patients with Medicaid, CHIP, or other coverage may have other options to access these free tests through pharmacies or other sources and health centers may be able to seek reimbursement from public and private payers, including Medicaid/CHIP reimbursement, for self-tests ordered for patients covered by these programs depending on state rules.

Data collected through a biweekly survey conducted by the Health Resources and Services Administration (HRSA) show that health center patient demand for COVID-19 tests has increased recently (as it has across the US). In the two weeks ending January 14, 2022, health centers reported administering an average of 794 PCR and antigen tests per responding health center, more than double the number reported in the December 17, 2021 survey. Notably, roughly two-thirds (64%) of tests were provided to people of color. These data indicate that supplying health centers with self-test kits should further increase access to testing in underserved communities during the current period of high demand.

HSRA’s most recent biweekly survey also shows how health centers are distributing the self-test kits through the federal partnership program as of early January. In the two weeks ending January 14, 27% of responding health centers reported distributing 1.08 million kits to community members (or roughly 2 million tests because each kit includes two tests). That number is expected to increase as more health centers register for the program and begin placing orders. Health centers also reported that they distributed the self-tests in a variety of ways (Figure 1). Most reported passing out the test kits to existing health center patients (83%) or to others in the community who came to the health center (61%). Roughly one-third (32%) of health centers reported distributing tests through direct outreach to underserved populations, such as individuals experiencing homelessness, migrant farmworkers, and low-income populations.

Looking ahead, health centers are expected to participate in other efforts to slow the spread and lessen the severity of COVID-19 disease. HRSA has begun the initial phase for a separate program that supplies health centers with oral antiviral pills to treat patients who recently tested positive for COVID-19 to lower their risk of more serious illness. The initial phase of this program includes 200 health centers; HRSA will include more participants as supply of the antivirals increases. In the most recent biweekly survey of health centers (as of January 14), 59 health centers had begun distributing antiviral pills through the new program, a number that we expect will grow as the program ramps up. In addition to supplying self-tests and antiviral pills, the administration recently began distributing N95 masks through community health centers alongside retail pharmacies, another program that should be ramping up in coming weeks.

Health centers are growing their role in the nation’s pandemic response efforts (in addition to state and local efforts) and have been important players in coordinating response efforts quickly and more equitably. Taken together, health centers’ federal partnership programs to administer vaccinations, distribute self-test kits, provide free N95 masks (in the coming weeks), and eventually prescribe and distribute oral antivirals should strengthen health centers’ ability to help prevent, detect, and treat COVID-19 in underserved communities.

The Biden Administration announced 14.5 million people have signed up for Affordable Care Act Marketplace coverage for 2022. This represents a 21% increase in Marketplace sign-ups over last year. Three states (Massachusetts, Kentucky, and Hawaii) and Washington, DC, saw enrollment decrease from 2021 to 2022. The remaining 47 states saw Marketplace enrollment increase, ranging from 1% in Rhode Island to 42% in Texas. In 20 states, enrollment increased by more than 20%.

In terms of numbers of people, Florida saw the biggest increase with 603,000 more sign-ups than last year. That was followed by Texas (549,000) Georgia (184,000), California (156,000), and North Carolina (134,000). In the places where enrollment shrunk, sign-ups decreased by 31,000 in Massachusetts, followed by Kentucky (-4,000), Washington, DC (-1,000), and Hawaii (less than 600).

The increase in Marketplace enrollment is due to expanded premium subsidies for 2021 and 2022 passed through the American Rescue Plan Act (ARPA), and increased efforts to enroll eligible people. ARPA increased premium subsidies for eligible enrollees and made premium subsidies available to middle-income enrollees to purchase coverage through Marketplaces. Additionally, the Biden Administration increased marketing and outreach efforts, including by increasing navigator funding and extending open enrollment by 30 days.

Of note, the reported enrollment is based on the number of people who signed up for coverage on state and federal Marketplaces through January 15, 2022. Open enrollment is ongoing beyond January 15 in some state Marketplaces (including California, Kentucky, Maryland, New Jersey, New York, Rhode Island, and DC). Colorado, Maryland, New York, and DC have also established special enrollment periods for the COVID-19 pandemic that allow uninsured people to buy coverage outside of the open enrollment period. Therefore, final Marketplace sign-ups for 2022 may be higher.