New treatments like the tyrosine kinase inhibitors (TKIs) have steadily improved the outlook for people with chronic myeloid leukemia (CML). But not everyone has benefited equally from these advances.
Although leukemia survival has improved in all racial and ethnic groups over the last few decades, Black people have made the least gains. In contrast, Asian Americans have had the biggest improvements in leukemia survival.
Barriers like a lack of health insurance and access to doctors keep some people of color from getting the treatment they need to get good results. If you’re a person of color with CML, there are things you can do to ensure you get good medical care.
What Causes CML Disparities?
A few things are behind the racial and ethnic differences in CML treatment and outlook.
Health insurance. CML drugs are expensive. A month's supply of a TKI costs more than $10,000. These drugs may not be affordable for people without good health insurance coverage.
Black and Hispanic Americans are more likely to be uninsured than White Americans. Research shows that people with CML who lack health insurance wait longer to start treatment or stop taking their medicine too early, which could lead to worse results.
A lack of health insurance is also a barrier to stem cell transplants for people with low income. Though stem cell transplant isn't used as often for CML today, it's the only proven way to cure this cancer. The cost can be more than $250,000 because of the long hospital stay afterward.
Access to health care. You can't get a cancer diagnosis without a doctor. Nearly 35% of Hispanic Americans say they don't have a primary care doctor. Location also affects health care access. Research finds that getting treatment at a specialized cancer center gets better results. People who live along the U.S.-Mexico border, for example, don't have access to cancer centers. In El Paso, TX, where 83% of the population is Hispanic or Latino, the nearest cancer center is more than 200 miles away.
Taking part in clinical trials. Every breakthrough CML drug that's available today was first tested in clinical trials. Typically, these trials include a lot more White people than people of color. Out of 41 studies on leukemia and multiple myeloma, almost 82% of the people studied were White. Less than 4% were Black, 9%were Asian, and fewer than 1% were Native American.
Equal access to clinical trials is important for a few reasons.
For starters, people who enroll in a study get early access to breakthrough cancer medicines and top-quality care.
Clinical trials also give researchers a chance to see how the new drug works in people of different races and ethnicities. People's genes can affect how well a drug works for them. For example, in one study, young Black women with CML were less likely to survive than White women. One reason was that they didn't respond as well to the TKI drug imatinib (Gleevec) because of differences in their genes.
Without knowledge about how drugs work in people of different backgrounds, doctors may prescribe a medicine to everyone with CML when it only works in some people with CML.
How to Ensure You Get the Best Care
Your race and ethnicity could affect your access to CML care and your odds of surviving this cancer. But you can take steps to have a better outcome.
Get regular checkups. One way to detect CML is with a routine blood test at your annual physical exam. If you don't have a doctor because you lack health insurance, check healthcare.gov. You may qualify for a low-cost or free insurance plan under the Affordable Care Act or Medicaid. Community health centers are another place to go for free or low-cost doctor visits.
Listen to your body. Watch for CML symptoms like unexplained weight loss, fever, night sweats, and weakness. See a doctor about them right away. Though these symptoms might not be cancer, they do signal a possible health problem.
Become a CML expert. If you have CML, learn everything you can about your cancer and its treatments. Read about CML on reliable websites, like those of the American Cancer Society and the Leukemia & Lymphoma Society. When you're well-informed, you can take a more active role in your own care. You’ll know what questions to ask your doctors and be able to form an opinion about their recommendations.
Enroll in a clinical trial. Ask your cancer doctor if you qualify for any CML clinical trials. If you don't have health insurance or your plan won't cover the cost of the study, help is available. Organizations like the Lazarex Cancer Foundation and TRICARE cover the medical expenses of clinical trials. Organizations like Mercy Medical Angels, Air Charity Network, and Hope Lodge may help you pay for travel and lodging if the nearest clinical trial is far from where you live.
Find a doctor who listens to you. Research finds that doctors don't communicate as well with people of color or involve them as much in decisions about their care. You might get better care with a doctor who is the same race or ethnicity as you. If you can't find someone of the same racial or ethnic background, make sure your doctor listens to your concerns and involves you in decisions about your care.
Resources That Can Help
These organizations empower and advocate for people from minority groups who have cancer:
- The American Indian Cancer Foundation gives indigenous people access to cancer prevention and treatment programs.
- Asian American Cancer Support Network has resources for Asian Americans with cancer.
- Black Women's Health Imperative helps women of color improve their health.
- Latinas Contra Cancer makes cancer care more accessible to the Latinx community.
Show Sources
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SOURCES:
American Cancer Society: "Can Chronic Myeloid Leukemia be Found Early?" "Signs and Symptoms of Chronic Myeloid Leukemia," "Stem Cell Transplant for Chronic Myeloid Leukemia."
American Indian Cancer Foundation: "About AICAF."
American Health & Drug Benefits: "The Cost of Hematopoietic Stem Cell Transplantation in the United States."
Asian American Cancer Support Network: "About Us."
Black Women's Health Imperative: "Eliminating Barriers to Wellness for Black Women and Girls."
Blood: "Racial and Ethnic Disparities in Survival Outcomes in Chronic Myeloid Leukemia."
Cancer: "Running the Marathon of Chronic Myeloid Leukemia with No Shoes (or Without the Right Shoes)!"
Cold Spring Harbor Molecular Case Studies: "Blood Cancer Health Disparities in the United States Hispanic Population."
Facing Hereditary Cancer Empowered: "Financial Assistance and Resources for Clinical Trial Participants."
Frontiers in Oncology: "Editorial: Advances in the Treatment of Chronic Myeloid Leukemia."
Healthcare.Gov: "Health Coverage Options If You're Unemployed," "How to Find Low-Cost Health Care in Your Community."
JCO Oncology Practice: "Trend in Tyrosine Kinase Inhibitor Utilization, Price, and Out-of-Pocket Costs in Patients with Chronic Myelogenous Leukemia."
Journal of Clinical Oncology: "Are Pivotal Clinical Trials for Drugs Approved for Leukemias and Multiple Myeloma Representative of the Population at Risk?" "Survival Differences in Chronic Myeloid Leukemia by Race in Pre- and Post-Imatinib Era."
Journal of Racial and Ethnic Health Disparities: "The Effects of Race and Racial Concordance on Patient-Physician Communication: A Systematic Review of the Literature."
Latinas Contra Cancer: "Achieving Health Equity in the Latiné Community."
Kaiser Family Foundation: "Health Coverage by Race and Ethnicity, 2010-2021."
PLOS One: "Racial/Ethnic, Age and Sex Disparities in Leukemia Survival Among Adults in the United States During 1973-2014 Period."
Preprint, medRxiv: "Racial and Ethnic Disparities in Access to Health Care Among Adults in the United States: A 20-Year National Health Interview Survey Analysis, 1999-2018."
The Commonwealth Fund: "Inequities in Health Insurance Coverage and Access for Black and Hispanic Adults."
United States Census Bureau: "QuickFacts: El Paso County, Texas."
