/ Updated July 27th, 2026

Racial Disparities in CLL Outcomes and the Push to Improve Access to Care

Dr. Jacqueline Barrientos, a chronic lymphocytic leukemia (CLL) specialist at Mount Sinai Medical Center in Miami Beach, explains how access to modern treatments may help reduce racial disparities in outcomes.

: Dr. Natalie Rafaeli Medical Source: Dr. Jacqueline Barrientos
Mount Sinai Medical Center - Miami Beach Written by: Kavontae Smalls

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Addressing Disparities in Access to Cancer Care

Recent research has suggested that racial disparities in cancer care, and worse outcomes for Latin American and Black patients, may not be driven by biology, but by unequal access to care, Dr. Jacqueline Barrientos, Chief of Hematologic Malignancies at Mount Sinai Medical Center in Miami Beach, tells SurvivorNet.
When these patients receive modern targeted therapies and can stay on them, their survival matches white patients, even with disease that is considered higher-risk, according to Dr. Barrientos.
Research is evolving, but unequal access remains a clear problem.
This is why patient advocacy remains essential. Experts urge patients to seek medical evaluation at academic cancer centers, push for better‑tolerated drugs where side effects are easier to manage, and use legal rights under the Americans with Disabilities Act to secure time for care.

For years, Hispanic and Black patients with chronic lymphocytic leukemia (CLL) were often told their disease carried “worse biology” and poorer odds. But as Dr. Jacqueline Barrientos, Chief of Hematologic Malignancies at Mount Sinai Medical Center in Miami Beach, tells SurvivorNet, newer research suggests barriers to accessing care may play a major role in the outcome differences seen among racial and ethnic groups.

“We’ve looked at outcome disparity research and followed these patients, and what makes a difference is not the biology. It’s access to care. Patients treated with the novel agents, they have the exact same [rate of] survival as white patients,” Dr. Barrientos explains.

However, whether modern targeted therapies have fully eliminated survival disparities remains an evolving area of research. While some studies support the view that equal access to newer treatments can lead to comparable outcomes across racial and ethnic groups, other research continues to find persistent survival differences, particularly among Black patients.

“The national cancer database study found a persistent survival disadvantage for Black patients even after propensity score matching,” says Dr. Natalie Rafaeli, a hematologist and oncologist at UT Health who specializes in malignant hematology and blood cancers. “While some registry data support comparable outcomes, evidence is mixed.”

What the Published Research Shows

The published research continues to evolve. Dr. Barrientos points to studies suggesting that access to modern targeted therapies—not underlying biology—is the primary driver of outcome differences among racial and ethnic groups.

A CLL Society-highlighted analysis by Dr. Adam Kittai, an internationally recognized expert in the care of patients with CLL and lymphoma at NYU Langone, found that fewer Hispanic patients received preferred first-line CLL treatment compared with white patients, suggesting unequal access to care contributes to the disparities seen.

Other studies, however—including a large National Cancer Database analysis published in the American Journal of Hematology in 2023—found that Black patients remained independently associated with shorter overall survival even after adjusting for other factors, while Hispanic and Asian patients did not show a significant survival difference compared with white patients.

The researchers also noted that the survival gap between Black and white patients appears to be narrowing in more recent years.

Dr. Rafaeli adds that studies have found that African American patients have higher rates of high-risk genetic features like unmutated IGHV and del(17p), and a 2025 genomic study identified increased DNA damage repair mutations and telomere loss in African American CLL.

Steps Towards Improving Access to Care

Even when a targeted drug is approved by the Food and Drug Administration (FDA), Dr. Barrientos says insurance companies don’t always make it easy to access these treatments.

“Sometimes even though these drugs are approved, insurance will fight with you and say, ‘Oh no, this is not needed,’ and you just need to fight with insurance sometimes to get access,” she says.

In addition to financial barriers, some patients from diverse backgrounds also experience transportation and language barriers, with limited health literacy, and limited access to clinical trials.

“Underrepresentation of minorities in CLL trials limits the generalizability of efficacy/safety data of the trials and is an important avenue for patients to access newer therapies,” Dr. Rafaeli said.

Dr. Barrientos recommends a multi-step approach for patients running into resistance when seeking quality care:

Get evaluated at an academic medical center, where there tend to be more resources dedicated to appealing insurance denials.
Let the academic center handle the insurance fight. Dr. Barrientos says she has personally called insurers on behalf of patients (including friends) to advocate for access to newer, better-tolerated drugs.
Continue ongoing care with your local oncologist once access to the recommended treatment is secured.

“I usually say, it might be easier if you go to an academic center where there are more resources to fight for that drug, and then go back to your local doctor,” Dr. Barrientos explains.

WATCH: How to Address Racial Disparities in Cancer Care

Asking About Alternative Treatment Options

Dr. Barrientos emphasizes that patients should feel empowered to ask their doctor about alternative drug options if side effects are hard to manage.

“You have to be your own advocate,” she says. “You have to ask your doctor, ‘Please, can you consider doing this drug — it may have a better tolerability.’ Because if you have a drug that works, but you’re not able to tolerate it, then it’s not working for you.”

Dr. Barrientos also points to a legal protection many patients aren’t aware of: the Americans with Disabilities Act (ADA).

“The Americans with Disabilities Act considers cancer as a disability, and any company should make reasonable accommodations to allow you to see your doctor,” she says. “This is something that many patients don’t know … they cannot be fired because they have cancer, because they cannot control it. It’s a disability.”

According to the U.S. Department of Labor and the Equal Employment Opportunity Commission (EEOC), which enforces the ADA’s employment provisions, employers must provide reasonable accommodations — such as adjusted schedules or leave for medical appointments — for limitations caused by cancer or its treatment, unless doing so would pose an undue hardship on the business.

The American Cancer Society notes that cancer is “often” considered a disability under the ADA because of how it can affect major bodily functions like cell growth or the immune system — but the EEOC clarifies that this determination isn’t automatic in every case; it depends on how significantly the condition limits a major life activity. Again, not every cancer diagnosis is defined as a disability; it depends on whether the condition substantially limits a major life activity.