The National Black Breast Cancer Fund ( NBBCF), NBCI National Clinical Trial Strategic Plan (NCTSP), and the American Clinical Health Disparities Commission( ACHDC) join together to Promote Clinical Trials in the Black Community.

Introduction

The goal of the NBCI Interactive Clinical Trials Portal is to offer a centralized location with critical information about how to improve the health outcomes of African-American and Latino communities. Access to such information will ensure their awareness of critical features, benefits, and challenges of what clinical trials entail.

The website particularly provides scientific facts and data-driven information that may positively influence the viewpoints of African-Americans and Latinos regarding their participation in clinical trials. The website attempts to demystify any misconceptions about clinical trials of African-Americans and/or Latinos. The website further seeks to support the understanding of African-American and Latinos about what is needed to answer questions, seek information, and approach toward gaining important insight about overall health outcomes.

In effect, the NBCI Interactive Clinical Trials Portal is poised to enhance the level of participation of African-Americans and Latinos in clinical trials and their subsequent acceptance of clinical trials as a viable option.

I’m 27 With Stage 4 Cancer. Here’s Why I Advocate for Clinical Trials

Stage 4 cancer

If you had told me a few years ago that I’d be battling stage 4 cancer as a young Black woman in my 20s, I never would have believed you. But here I am, and I’m fighting.

It began before the pandemic when a seemingly harmless lump on my knee kept growing and restricting my ability to walk normally. Despite visiting an orthopedic surgeon, they just brushed it off as needing physical therapy. It took months of persistence and the tumor continuing to enlarge for them to finally order the scans and biopsy that revealed, in July 2020, I had synovial sarcoma, an extremely rare cancer.

After I got a second opinion at a more experienced and high-quality hospital, confirming that it was indeed cancer, I went through regular chemotherapy, radiation, and eventually an extraction of the tumor in November 2020. Despite being in remission for six months, the cancer decided to return and spread to my lungs. I had gone from what was once a minor knee issue to wrestling with stage 4 cancer.

knee lump
The inital lump in my knee.

My oncologist quickly presented me with two clinical trials that had shown remarkable initial success in keeping some sarcoma patients alive and disease-free for over a decade. Given my grim prognosis otherwise, it seemed like a no-brainer to sign up.

However, he did warn me that for reasons still unclear to researchers, Black and Hispanic people tend to lack the specific biomarkers required for one of the immunotherapy trials. Sure enough, while I qualified for the other MAGE-4 trial, I felt that sting of potential discrimination built into the medical system.

The MAGE-4 trial involved an incredibly complex process—extracting my white blood cells, genetically engineering them to contain the MAGE-4 protein so they could better detect my cancer, wiping out my existing immune system with harsh chemo, and then reinfusing those “supercharged” cells back into my body. It was brutal, but I was willing to go through it all if it could save my life.

For a while, it seemed to work like a miracle. Scans showed my tumors gradually shrinking with this experimental therapy. My family and I were overjoyed. But then the unthinkable—new tumors emerged.

My doctor’s words still ring in my ears: “We’re learning that synovial sarcoma can evolve and stop responding to therapies that were once effective.” Back to the drawing board while my care team searched for other viable clinical trials.

In the meantime, I’ve been managing my disease with chemotherapy, the same drugs. But I’m still grateful to be here and have access to these treatments at all. The medical costs have been staggering – even with my workplace insurance, I’ve racked up tens of thousands of dollars in out-of-pocket expenses. Without a good job and coverage, I’m not sure how I could have paid for it all.

smiling lady

That’s why I’ve felt so compelled to keep working full-time throughout this ordeal. The only extended leave I took was for three months surrounding the MAGE-4 trial when I was essentially hospitalized for the procedure and recovery.

Staying employed hasn’t just been about the money and benefits, though. It’s helped me maintain some sense of normalcy and a reminder of my identity outside of just being “the cancer patient.” My coworkers have been supportive, and knowing I have that community to return to has given me incredible strength.

Of course, I’ve found an even more powerful community by sharing my journey so openly on social media.

What started as a way to relieve boredom during chemo sessions has blossomed into an incredible network of other cancer warriors and chronically ill folks who simply get it. We understand the unique challenges of navigating healthcare as people of color and not always feeling heard by doctors.

That’s a big reason why I’m such a passionate advocate for more Black people considering clinical trials when possible. If our communities aren’t represented in the data driving new therapies, then there’s no way to ensure those treatments will be effective for us. By joining trials, we can play an active role in pushing research to be more equitable and inclusive.

For me, if I hadn’t taken those chances on clinical trials, I’m not sure I would even still be here. The treatments so far haven’t beaten my cancer for good yet, but they’ve continued extending my life and giving me more treasured days with loved ones. With more research and more diverse trial participants, I’m hopeful that a cure is on the horizon.

So I’ll keep fighting, keep sharing my story, and keep inspiring more people to seriously weigh these opportunities. Every person who joins a trial is participating in medical progress that could impact millions down the line. We owe it to ourselves and our communities to be part of that fight for better treatments and better representation in research. Our lives could literally depend on it.

By Taylyn Washington-Harmon | Published August 21, 2025

Mother with breast cancer

Black Women Research Gap

When We Tri(al) We are 41% more likely to die from breast cancer than white women. Know the facts. Change the numbers. When we tri(al), we make a difference in breast cancer research.

This Clinical Trial Is Testing a Breast Cancer Vaccine

Breast cancer clinical trial

Anixa Biosciences, a biotech company dedicated to fighting cancer, recently announced positive results from a Phase 1 clinical trial of their breast cancer vaccine. This vaccine holds particular promise for Black women, who are disproportionately affected by breast cancer.

Triple-negative breast cancer (TNBC) is an aggressive form of breast cancer with limited treatment options. It makes up a higher percentage of breast cancer deaths compared to other forms and has a higher recurrence rate. Black women are twice as likely to be diagnosed with TNBC compared to white women. This disparity highlights the urgent need for new and effective treatment options for Black women specifically.

How does the breast cancer vaccine work?

The Anixa vaccine targets a protein called alpha-lactalbumin, which is present in most TNBC tumors but disappears from healthy tissues after lactation. This “retired” protein essentially acts like a red flag to the immune system, allowing it to recognize and destroy cancer cells expressing it. This approach offers a unique strategy for preventing TNBC recurrence or even potentially preventing the initial onset of the disease.

“We’ve tested the vaccine on 25 women so far, and in most cases, we’ve seen a robust immune response,” Amit Kumar, CEO of Anixa, said in an interview with CW39 Houston. “In some of the women we’re seeing a more modest immune response, but what that means [is] their immune systems are reacting in a way that we hope will eventually prevent breast cancer just like how vaccines prevent other infectious diseases like smallpox and polio.”

The Phase 1 trial, conducted in collaboration with Cleveland Clinic, showed encouraging results. The majority of patients developed an immune response against alpha-lactalbumin, indicating the vaccine successfully activated the immune system. Importantly, the vaccine was well-tolerated with minimal side effects.

“We train the body’s immune system of a vaccinated patient to recognize breast cancer cells as they arise and we hope that the immune system will destroy those cells before [they] become a multibillion-cell tumor mass that you can see on a mammogram,” Kumar adds.

When will the breast cancer vaccine be available?

Anixa plans to continue studying the vaccine’s safety and effectiveness in larger trials with different patient groups. First, it will focus on preventing triple-negative breast cancer recurrence in patients who have already undergone treatment. Future studies may investigate its ability to prevent the disease altogether, particularly in women with a high risk of developing TNBC, including those with BRCA (breast cancer) gene mutations. Kumar expresses hope that a phase 2 trial will begin in 2025, anticipating that the vaccine will be available in the coming years.

This new vaccine technology offers a ray of hope for Black women facing a disproportionate burden of triple-negative breast cancer. While more research is needed, the early results are promising and highlight the potential for this vaccine to become a valuable tool in the fight against breast cancer, particularly for Black women.

How to participate in the clinical trials

Our goal is to encourage every one of our 27.7 million members to complete this course on Essential Tools for Participation in Clinical Trials

As an example. a 2020 report from the U.S. Food and Drug Administration showed:

stats

Description of the Clinical Trial Course for African-Americans

diversity

The course, Essential Tools for Participation in Clinical Trials, has been developed for African-Americans and Latinos to help them navigate and understand the benefits and risks of clinical trials.

Five learning objectives comprise this course:

  1. To expose historical and current trends involving the health status of African-Americans and Latinos. Students will review a 300-page booklet, as written for members of Congress, that details the health statistical picture of African-Americans and Latinos and why health continues to worsen under the current healthcare rubric.
  2. To utilize a video to show compelling issues involved with clinical trials and why African-Americans and Latinos need to consider it as a strategic health strategy. Students will be shown how a video can be used to generate attention to health in culturally relevant ways.
  3. To engage in an interactive booklet in learning the benefits and risks of clinical trials. Students will be engaged through an interactive booklet focusing on the benefits and risks of clinical trials.
  4. To highlight the need for a comprehensive website on clinical trial participation. Students will be shown how a website can be used as a research and teaching tool, particularly as it relates to clinical reference books focused on medical abuses of African-Americans and Latinos (i.e. the book Medical Apartheid by Dr. Harriet A. Washington).
  5. To demonstrate understanding of clinical trial participation using appropriate assessments (i.e. quizzes, essays, short answers). Students will be assessed using both formative (during the course) and summative (end of course) assessments.

Upon the completion of the course, Essential Tools for Participation in Clinical Trials, the students will receive a university-level certificate of completion.

Young woman with breast cancer

Course Curriculum

  1. Review the Health Status of African-Americans through the Black Health Booklet
  2. Review NBCI KEY Educational Clinical Trials Videos and Take notes
  3. Complete the Interactive Booklet of Learning on The Benefits and Risks of African-American Participation in Clinical Trials
  4. Review the video on A Historic Analysis of Medical Abuses and Promises of the Future https://blackchurchclinicaltrials.com/ethical.php And Review Black Clinical References Books https://blackchurchclinicaltrials.com/books.php
  5. Take the Quiz and Earn a Certificate of Completion

The National Black Church Initiative (NBCI) welcomes you to our newly launched clinical trial online portal! The portal provides education, information, and resources on the importance and benefits of African-Americans participating in clinical trials. NBCI developed this portal so that the African-American and Latino communities and others interested can have a one-stop resource that centralizes information on clinical trials that is culturally relevant, factual, and regularly updated given emerging and current developments in clinical research.

The NBCI clinical trial online portal is part of our innovative, science-based clinical strategic plan to promote clinical trials among traditionally underrepresented groups of African-Americans and Latinos. Increasing the involvement of African-Americans and Latinos within clinical trials serves as a conduit for improving the long-term effectiveness of medical prescriptions and treatments to combat leading chronic diseases (i.e. COVID, cancer, heart disease, stroke, diabetes).

If you want to understand more about clinical trials and the African-American and Latino communities, please view these three videos! (NBCI KEY Educational Clinical Trials Videos)

NBCI is ushering in a new era concerning the participation of African-Americans within clinical trials, particularly given the historic trauma resulting from the Tuskegee Experiment and other medical abuses. Thus, the NBCI National Clinical Strategic Plan (NCTSP), as a comprehensive program poised to enhance understanding, education, and participation of African-Americans and Latinos, focuses on reconciling the disproportionate representation of African-Americans and Latinos in clinical trials. Lessons learned from these traumatic occurrences provide us with the necessary insight about how to move forward with intentionality. The NCTSP is poised to provide access to 27.7 million African-Americans and Latinos with integrity, confidentiality, and health standards-based protocols.

Test your Knowledge on Clinical Trials by visiting the clinical trials booklet

Please Provide Your Feedback on this Section

Please take the NBCI NCTSP Survey

Clinical Trials Survey


  1. Under 18
    18 - 24
    25 - 30
    30 - 40
    40 - 55
    55 >

  2. Hispanic
    African-American/Black
    White/Caucasian
    Pacific Islander
    Native American
    Two or more

  3. Female
    Male

  4. Lower economic class
    Lower-Middle economic class
    Middle economic class
    Upper economic class

  5. Less than high school
    High school graduate/GED
    Associates degree
    Bachelors degree
    Masters or other professional degree



  6. Yes
    No
    Kind of, but I don’t know much

  7. Television
    Radio
    Newspaper
    Magazine
    Other

  8. Yes
    No
    Not applicable


  9. Fear
    Language barrier
    Financial barrier
    Other barriers (family obligations, transportation)
    I did not know about them
    I don’t know

  10. Poor
    Average
    Good
    Very good
    Excellent

  11. A family member/ friend told me about it
    My physician told me about it
    I read about it online
    I wanted to participate in the advancement of science
    Other



  12. Having the possibility of curing my condition
    The investigator or physician was same ethnicity as myself
    Investigator spoke my native language
    Feeling that the investigator truly cares about my health and well-being
    The investigator is attentively listening to my concerns and needs
    If I am offered some type of incentive to participate

  13. Yes
    No
    I'm not sure

Advertise your clinical trial!

Clinical Ad

The Official Explanation of NCTSP

The health equity gap in the US is so vast that you could refer to it as a chasm. Marginalized groups, especially African Americans and Latinos, have worse outcomes with various health conditions, and worse, when it comes to clinical research to treat and prevent, these groups are grossly underrepresented. Closing that gap has taken great effort, and the Black church has stepped up and taken the lead. The National Black Church Initiative National Clinical Trials Strategic Plan (NCTSP) (https://naltblackchurch.com/pdf/nbci-ntcsp-slides3.pdf) has mirrored the call by the National Academies report on Improving Representation in Clinical Trials and Research, and the organization urges the FDA to use it as a blueprint.

The National Black Church Initiative (NBCI) (http:// naltblackchurch.com), a coalition of 150,000 African American and Latino churches, has established a program to help close that gap. NBCI, representing 27.7 million members, is dedicated to eliminating racial disparities in healthcare, technology, education, housing, and the environment.

This program is in keeping with NBCI National Black Health Agenda (https://naltblackchurch.com/pdf/blackhealthagenda-congress.pdf). This report was sent to Congress, spelling out the needs of African Americans before the 2024 election election. The report is our bellwether on black health.

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