HOME / Black Data Matters

#BlackDataMatters

#BlackDataMatters (#BDM) is our movement to mobilize the Black community to participate in clinical trial research.

Starting with Black Breast Cancer, the mission of #BDM is to put Black patients in a position of power to change clinical research and to catalyze change in the medical system that often fails us.

#BDM was founded in June 2020 on the premise that Black Breast Cancer deserves special attention and focus from the breast cancer ecosystem. Black breast cancer patients die at a 41% higher rate than white breast cancer patients—this devastating mortality statistic will not change until we better understand the physiology of Black women.

Therapies and drugs currently available for breast cancer have not been effectively tested on Black women, who make up less than 3% of breast cancer clinical trial participants. We just don’t have the science to know if approved treatments work on our bodies. And since Black women with breast cancer have a 71% higher relative risk of death than white women and a 39% higher recurrence rate, we know that current treatments aren’t working as well as they need to for us.

The thought of a clinical trial can be scary. In fact, part of Black women’s reluctance to get involved in medical research may be attributed to the fact that nearly one-third of us believe scientists cannot be trusted, compared to 4% of white women. Frankly, with stories like Henrietta Lacks and the many Black men who died at the hands of the Syphilis study at Tuskegee, the medical industry has earned our mistrust.

But without our participation in clinical research, Black women are missing out on access to the newly emerging and often life-extending treatments that could save us. Until we have more Black women included in research, we cannot put an end to the disparities that Black breasties face.

If you want to participate in a breast cancer clinical trial, we are here for you.

If you want information, have any fears or concerns, or just want to talk about it, call us at 443-758-1924.

#blackdatamatter
#blackbreastcancermatters

Starting with Black Breast Cancer, the mission of #BDM is to put Black patients in a position of power to change clinical research and to catalyze change in the medical system that often fails us.

#BDM was founded in June 2020 on the premise that Black Breast Cancer deserves special attention and focus from the breast cancer ecosystem. Black breast cancer patients die at a 41% higher rate than white breast cancer patients—this devastating mortality statistic will not change until we better understand the physiology of Black women.

Therapies and drugs currently available for breast cancer have not been effectively tested on Black women, who make up less than 3% of breast cancer clinical trial participants. We just don’t have the science to know if approved treatments work on our bodies. And since Black women with breast cancer have a 71% higher relative risk of death than white women and a 39% higher recurrence rate, we know that current treatments aren’t working as well as they need to for us.

If you want to participate in a breast cancer clinical trial, we are here for you. If you want information, have any fears or concerns, or just want to talk about it,

call us at 443-758-1924.

#blackdatamatter #blackbreastcancermatters

The thought of a clinical trial can be scary. In fact, part of Black women’s reluctance to get involved in medical research may be attributed to the fact that nearly one-third of us believe scientists cannot be trusted, compared to 4% of white women. Frankly, with stories like Henrietta Lacks and the many Black men who died at the hands of the Syphilis study at Tuskegee, the medical industry has earned our mistrust.

But without our participation in clinical research, Black women are missing out on access to the newly emerging and often life-extending treatments that could save us. Until we have more Black women included in research, we cannot put an end to the disparities that Black breasties face.

If you want to participate in a breast cancer clinical trial, we are here for you. If you want information, have any fears or concerns, or just want to talk about it,

call us at 443-758-1924.

#blackdatamatter #blackbreastcancermatters

Listen to some experts in this recent discussion about clinical trials from The Doctor Is In:

Demystifying Clinical Trials: Why aren’t more black breast cancer patients participating?

Let’s talk about fear.

1

There are now laws in place to prevent unethical research. After the Syphilis Study at Tuskegee, the government changed its research regulations to ensure safe research practices for all patients. In the early 1990s, a National Bioethics Advisory Commission was created to review current regulations, policies, and procedures to ensure all possible safeguards are in place to protect research volunteers.

4

Open your medicine cabinet. Every drug there has been in a clinical trial. Advil, Tylenol, Nyquil, Children’s Motrin… you name it, it’s gone through a clinical trial.

2

You could think of clinical research as an experiment, but clinical trials give patients access to innovative, life-saving treatments. We need a clinical trial system that enrolls Black patients at higher rates, produces treatment advances more quickly, and improves breast cancer patient outcomes. We need better science. Because the truth is, the standard FDA-approved chemotherapies that our oncologists put us on were barely tested in Black women. They don’t know if those drugs work in our bodies; they don’t know the side effects we may experience. With so much unknown, approved treatments are essentially unofficial trials (without any of the benefits) for Black breasties.

5

At any point during a clinical trial, you can drop out of it and/or change to the standard of care treatment.

3

There is no “sugar pill” in cancer research. You are given a new drug being tested or Standard of Care (an FDA approved treatment that most medical experts agree they would recommend for your specific diagnosis). More than that, in a clinical trial setting you will be monitored more closely, have more frequent doctor visits, and get more attention from your medical team.

KNOW THE FACTS.

1

There are now laws in place to prevent unethical research. After the Syphilis Study at Tuskegee, the government changed its research regulations to ensure safe research practices for all patients. In the early 1990s, a National Bioethics Advisory Commission was created to review current regulations, policies, and procedures to ensure all possible safeguards are in place to protect research volunteers.

2

You could think of clinical research as an experiment, but clinical trials give patients access to innovative, life-saving treatments. We need a clinical trial system that enrolls Black patients at higher rates, produces treatment advances more quickly, and improves breast cancer patient outcomes. We need better science. Because the truth is, the standard FDA-approved chemotherapies that our oncologists put us on were barely tested in Black women. They don’t know if those drugs work in our bodies; they don’t know the side effects we may experience. With so much unknown, approved treatments are essentially unofficial trials (without any of the benefits) for Black breasties.

3

There is no “sugar pill” in cancer research. You are given a new drug being tested or Standard of Care (an FDA approved treatment that most medical experts agree they would recommend for your specific diagnosis). More than that, in a clinical trial setting you will be monitored more closely, have more frequent doctor visits, and get more attention from your medical team.

4

Open your medicine cabinet. Every drug there has been in a clinical trial. Advil, Tylenol, Nyquil, Children’s Motrin… you name it, it’s gone through a clinical trial.

5

At any point during a clinical trial, you can drop out of it and/or change to the standard of care treatment.

KNOW THE FACTS.

Don’t let fear stop you from doing something that could save your life or your daughter’s life.

Help us increase research efforts to make precision medicine a reality for our entire community.

Alongside our founding partners, Morehouse School of Medicine and Ciitizen, #BlackDataMatters will drive access to research opportunities for our community. We’re democratizing precision medicine by giving patients the ability to control their own care, while contributing to research that will save lives. Because when we are empowered with our health data, we can drive change to eliminate breast cancer health inequities and increase research that can help our community.

To learn more about BlackDataMatters, visit: https://www.ciitizen.com/blackdatamatters/

When We Tri(al) Movement!

This is a call to action for our fierce, resilient community of Black women. As Black breast cancer patients, we have to advocate for ourselves and each other in order to get access to a better Black standard of care. This is a matter of life and death for Black women. Join our movement at www.whenwetrial.org

Looking for a trial?

TOUCH, The Black Breast Cancer Alliance partners with Ciitizen, a platform that makes it easy for you to be in control of your health data by collecting, digitizing and organizing your medical records. Because when we are empowered with our health data, we can drive change to eliminate breast cancer health inequities and increase research that can help our community.

If you’re interested in learning more about currently available clinical trials and research, visit www.ciitizen.com/touchclinicaltrials.

Or reach out to us at info@touchbbca.org with any questions or concerns!