Health care disparities occur when a person’s individual characteristics or circumstances—such as race, ethnicity, sexuality, gender identity, age or health insurance status— impact their access to health care or the quality of that care.

Health care disparities can result from a delay in routine check-ups, screenings and other early detection exams. This can lead to cancer being diagnosed at a later stage, when it is harder to treat.

There has been increased attention on health care disparities, and many organizations are focusing on ways to improve access to care and the quality of care. Administrators can promote or hire people with diverse viewpoints into positions of responsibility. Medical institutions should abide by non-discriminatory policies, which can be posted on their website or within the care setting. The healthcare delivery system is strengthened by the increased creativity and talent of a more diverse workforce.

Organizations can also promote the concept of “cultural humility.” Cultural humility is the ability to remain open to another person’s identity. Cultural background, beliefs, values and traditions can impact how people make decisions about their health care. Being culturally humble involves reflection by the organization as a whole (and its health care providers) about their ingrained assumptions and being receptive to change.

It also involves recognizing power imbalances. For example, a patient may believe that they must accept health care recommendations without question. Health care providers should encourage discussion and collaboration.

Cultural humility also values institutional accountability. This means making sure the best options for care are available to everyone. Hospitals, public health administrations, insurance providers and others can take responsibility for differences in care and strive to reach health care equity.

Self-advocacy means speaking up for yourself and what is right for you. Health care decisions are your choice. You are not required to agree to any procedure or treatment that you do not want or do not understand. Be clear and open about your comfort levels and needs. It is your right to ask for the best care available to you.

Your health care team has the same goal as you do: the best possible care and quality of life. Health care professionals focus on the best medical and scientific course of action. However, your beliefs and values are equally important. You have the right and the power to make your wishes known.

It is important that you ask questions to fully understand your diagnosis and the goals of treatment, as this directly impacts health outcomes. Questions include:

  • Will this treatment plan affect my ability to live on my own?
  • How could treatment affect other co-existing health issues?
  • How will treatment affect my memory?
  • Is the goal longer survival, which may mean a more intensive treatment, or is it quality of life?
  • Do you have any material that will help me better understand my diagnosis and treatment plan?

You should not wait for your health care team to start these conversations. No medical decision should be made without your full consent and understanding. You can start advocating for yourself at any time during your cancer experience.

Based on your cultural beliefs, you may wish to avoid scheduling treatment or surgeries at certain times of the day or week or during holy times of the year. Your health care team may be able to adjust your treatment based on your needs.

Do not be afraid to seek a second opinion or to seek a healthcare provider who is a better fit for your needs, especially if you feel uncomfortable, fearful or discriminated against. It is important that you fully trust your health care provider, and share all information that is needed to receive proper, holistic care.

According to the World Health Organization (WHO), social determinants of health are the non-medical factors that influence health outcomes. They are the conditions in which people are born, grow, work, live and age, and the wider set of forces and systems shaping the conditions of daily life.

Social determinants of health can lead to health care disparities. Examples from the WHO include:

  • Income and social protection
  • Education
  • Unemployment and job insecurity
  • Working life conditions
  • Food insecurity (see section below)
  • Housing, basic amenities and the environment
  • Early childhood development
  • Social inclusion and non-discrimination
  • Structural conflict
  • Access to affordable health services of decent quality

Numerous studies suggest that social determinants of health account for between 30 and 55 percent of health outcomes. Addressing these determinants is fundamental for reducing longstanding disparities in health care. Doing so requires action by multiple segments of society.

More About Food Insecurity

Food insecurity is the lack of reliable access to a sufficient quantity of affordable, nutritious food. For households that face food insecurity, the need for food competes with other needs, such as housing, utilities, medication and transportation.

Food insecurity is a national health problem, with underlying causes that are complex and often inter-connected. Addressing the problem requires collaboration across many sectors: businesses, federal and local government, health care researchers and non-profit organizations.

For those in immediate need, the non-profit organization Feeding America (www.feedingamerica.org) offers a network of food banks, pantries and meal programs that serve virtually every community in the United States — 40 million people, including 12 million children and 7 million seniors. Other local resources can be found through an internet search or via directory assistance.

The outcomes of cancer vary considerably according to race and ethnicity. While significant progress has been made to reduce mortality (deaths) due to cancer for all populations, there are still differences. Here are a few examples in the United States:

  • African Americans experience the highest incidence and mortality rates for common cancers such as lung, colorectal and prostate. Additionally, breast cancer mortality rates are disproportionately higher among African American compared to white American women.

  • Hispanic men and women have a higher incidence of stomach and liver cancer than the white population.

  • American Samoan men are eight times more likely to develop liver cancer as compared to non-Hispanic white people.

  • Compared to non-Hispanic white people, American Indian and Alaska Native (Native American) people have a much higher incidence of several cancers, including lung, colorectal, liver, stomach and kidney.

Genetic factors likely contribute to some of these differences. However, there are other factors that account for these variations to a substantial degree, such as limited access to health care, lack of insurance, and reluctance to seek care due to past experiences with interpersonal and/or structural racism.

Your health care team is composed of experts in medical care. They share your goal of achieving the best care possible. However, their focus on medical issues may not account for your beliefs, values and traditions. You should feel comfortable sharing any concerns you have. These may include treatment decisions, potential side effects, financial concerns, family responsibilities and end-of-life issues.

The effects of health care disparities on the LGBTQ+ community include:

  • Fear of discrimination. LGBTQ+ individuals may worry that disclosing their sexual orientation or gender identity will affect the quality of their health care.

  • Negative experiences. Fear of non-affirming interactions with health care providers can limit openness, safety and trust.

  • Lower rates of health insurance. Health insurance policies sometimes do not recognize unmarried partners. Legal protections against discrimination at both the state and federal level are inconsistent.

  • Denial of care. While acceptance of LGBTQ+ identities is rising, homophobia and transphobia remain a reality. Some people may find themselves having to fight for the care they deserve.

Health care providers may hold biases about the LGBTQ+ community, or simply not be aware of differences in their health care needs. This affects the types of screening that are recommended.

For example:

  • Lesbians are often screened at a lower rate for cancers associated with reproduction, such as cervical and ovarian cancer.

  • Doctors may not be aware that the human papilloma virus (HPV) is equally transmitted by anal intercourse as it is by vaginal intercourse. A growing number of health activists believe that routine screening, using an anal pap smear, could reduce the incidence of anal cancer in gay or bisexual men.

  • A transgender person might retain aspects of their biological sex that require certain forms of care. A trans man may need care from a gynecologist or continued breast exams. A trans woman may require care from a proctologist. However, many health care systems still rely on male-female binaries, reducing the quality of health care for non-binary or gender nonconforming patients.

The following organizations can provide a range of resources and support to members of the LGBTQ+ community who are facing health care disparities.

  • Gay and Lesbian Medical Association (www.glma.org). Utilizing the expertise of its diverse multidisciplinary membership to drive advocacy, education and research, the GLMA is a source of educational and informative materials. They also maintain a directory of providers dedicated to the support of the LGBTQ+ community.

  • National LGBT Cancer Network (www.cancer-network.org). The National LGBT Cancer Network works to improve the lives of LGBTQ+ post-treatment cancer survivors and those at risk through education about the importance of early detection and screening. They also train health care professionals on providing more competent, safe and welcoming care. They have an online database to help locate care providers.

  • National LGBT Cancer Project (www.lgbtcancer.org). The National LGBT Cancer Project seeks to improve the health of LGBTQ+ post-treatment cancer survivors with peer-to-peer support, patient navigation, education and advocacy by way of their online support group community, Out With Cancer.

  • Human Rights Campaign (www.hrc.org) and Human Rights Campaign Foundation (www.thehrcfoundation.org). The Human Rights Campaign envisions a world where every member of the LGBTQ+ family has the freedom to live their truth without fear, and with equality under the law. Information and advice on a range of topics, including health care issues, is available on their website. Comprehensive programs to support individuals, allies and institutions can be accessed by visiting their related organization, the Human Rights Campaign Foundation.

Due in part to stereotypes and prejudice, older patients sometimes receive inadequate health care. For example, surgery may be recommended less often, even if it is the most appropriate treatment option. Also, screening for certain cancers may be provided less frequently. Older patients may also face physical challenges that limit their mobility (ability to get around) and may also lack reliable transportation options.

The impact of age is often more severe in people from racial minority groups. They often have a lower quality of life, shorter life expectancy and more medical conditions than non-minorities. As such, they may require a higher level of support and attention.

Support from family and friends can make a significant difference. An older person should not hesitate to ask for help, such as:

  • Scheduling check-ins
  • Being explicit about what help is needed
  • Asking for rides to health care appointments
  • Reviewing medical concerns and the results of doctor’s appointments
  • Asking for assistance with meals, shopping or other personal care tasks

Being diagnosed with cancer without having health insurance is a leading cause of health care disparities. It can also bring challenges that are stressful and emotionally difficult. In addition to your place of employment, there are avenues you can pursue to potentially obtain health insurance.

  • Your spouse or domestic partner’s plan. If your spouse or domestic partner has a job that offers health insurance, find out if you’re eligible to be covered.

  • COBRA. If you have left a job recently and were covered by an employer’s health insurance, you may be able to continue your coverage under COBRA (the Consolidated Omnibus Budget Reconciliation Act). This law requires employers to make health insurance coverage available through their plan to former employees for a minimum of 18 months after employment has ended. Beneficiaries are required to pay the premiums plus an additional administrative fee. Visit the U.S. Department of Labor website (www.dol.gov) to learn if you are eligible.

  • Your school. If you are currently a full-time or part-time student, check with your college or university to see if they offer coverage.

  • Purchase it on your own. You can contact an insurance broker, or visit www.healthcare.gov to find the Health Insurance Marketplace in your state.

  • Medicare and Medicaid. Medicare is a government-provided health care plan for people 65 and older and those who have been receiving Social Security Disability Insurance benefits for a minimum period of two years. Medicaid provides health care services for people whose income falls under a certain level. Contact the Centers for Medicare and Medicaid Services (CMS) at 877-267-2323 or visit www.cms.hhs.gov to find out whether you are eligible for either of these programs.

  • Social Security. Social Security Disability Insurance or Supplemental Security Income may be able to help with the cost of health insurance. For eligibility requirements, call 800-772-1213 or visit www.socialsecurity.gov/disability/.

Q. What is the “digital divide?”

A: The digital divide is the gap between those who have access to technologies (and the skills to use that technology) and those who do not. Examples of digital technologies include telehealth, patient portals, mobile health applications and online appointment schedulers. For the most part, digital technologies require reliable internet access. Because digital technologies can have a positive impact on health outcomes, this divide can lead to health care disparities.

The Federal Communications Commission (FCC) has launched an initiative to narrow this gap. The FCC views telehealth care services—especially for underserved and marginalized communities—as a top priority. From their website: “Connected care services can lead to better health outcomes and significant cost savings for patients and health care providers alike. However, many low-income consumers, particularly those living in rural areas, lack access to affordable broadband and might not be able to realize these benefits. This is why the FCC is working hard to connect communities and support technologies that help connect Americans to critical health services.”

Q. Can you explain clinical trials and why they are important?

A: Clinical trials are the standard by which we measure the worth of new treatments and the quality of life of patients as they receive those treatments. For this reason, doctors and researchers urge people with cancer, including those who face the challenges of health care disparities, to take part in clinical trials.

Your doctor can guide you in making a decision about whether a clinical trial is right for you. Here are a few things that you should know:

  • Often, people who take part in clinical trials gain access to and benefit from new treatments.

  • Before you participate in a clinical trial, you will be fully informed as to the risks and benefits of the trial, including any possible side effects.

  • Most clinical trials are designed to test a new treatment against a standard treatment to find out whether the new treatment has any added benefit.

  • You can stop taking part in a clinical trial at any time for any reason.

Here is a list of questions to ask your oncologist if you are considering participation in a specific clinical trial. They may refer you to a trial representative (e.g., a Patient Representative or Case Manager) for some of these questions, but it’s best to begin the discussion with your oncologist.

Initial Questions

  • What is the purpose of the trial?
  • What are the eligibility requirements of the trial?
  • What kinds of tests and treatments are involved?
  • How long will the study last?
  • Will you and other members of my health care team still be in charge of or involved in my care?
  • Are there alternative treatments for me, other than what is being offered in the clinical trial?

Quality of Life Questions

  • Is a hospital stay required?
  • How many visits per week or month will I need to make?
  • How do the possible risks, side effects and benefits of the study compare with my current treatment?
  • Is long-term follow-up care part of this study?
  • How will I know that the treatment being studied is working?

Logistical Questions

  • Are there other drugs or supplements that I will be required to take during the trial?
  • Are there drugs or supplements that I cannot take during the trial?
  • Who will pay for the treatment? Will the trial, or my insurance, cover all or part of it?
  • Will I be reimbursed for any expenses, such as transportation?
  • Will the results of the trial be given to me?

Q. What can I do if I feel I have been discriminated against?

A: Section 1557 of the Affordable Care Act (ACA) prohibits discrimination on the basis of race, color, national origin, sex (including sexual orientation and gender identity), age or disability in covered health programs or activities. Health insurers, hospitals, clinics and any other entities that receive federal funds are covered by this rule.

If you believe you have been discriminated against in a way that violates Section 1557, you can file a complaint with the Office for Civil Rights (OCR) through their online portal at https://ocrportal.hhs.gov/ocr/smartscreen/main.jsf.

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This fact sheet is supported by Takeda Oncology.

Last updated January 10, 2022

The information presented in this publication is provided for your general information only. It is not intended as medical advice and should not be relied upon as a substitute for consultations with qualified health professionals who are aware of your specific situation. We encourage you to take information and questions back to your individual health care provider as a way of creating a dialogue and partnership about your cancer and your treatment.

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