Participation in clinical trials is paramount for the Black community

UPMC hiring more minorities as ‘Clinical Trial Ambassadors’

by Renee P. Aldrich
For New Pittsburgh Courier

The fight against health disparities in this country has been an ongoing battle. African Americans lead the parade to the cemetery as they suffer and die disproportionately from chronic diseases such as diabetes, hypertension, heart diseases and most cancers—receiving more diagnoses at greater rates than Caucasians as well as other ethnic groups. If more minorities knew about and could participate in clinical trials, it could potentially help in the quest to reduce health disparities.

African American participation in clinical trials has been a significant challenge within the health care research systems. For that reason, last fall, UPMC implemented an initiative designed to build up participation. They began a hiring program where they added Clinical Trial Ambassadors (CTA) on staff to work with African American cancer patients. Yolanda Murphy was one of the hires. As a Clinical Trial Ambassador, she is tasked with meeting, recruiting, and educating cancer patients about the importance of clinical trials and then helping them navigate the system.

She shared that her main objective in working with her patients was to “first establish a level of comfort, and build trust, and this is aided by the fact that I look like them. The idea is that by working with me and hearing my story, we are able to connect because I have been where they’ve been”—receiving that diagnosis that no one wants to hear—“you have cancer.”

Murphy was only 35 years of age when she was diagnosed with stage 2 invasive ductal carcinoma. She was motivated by her own experience to get involved in educating other women. She was already employed as an outreach specialist in medical assistance with the insurance division of UPMC. It only made sense after her diagnosis to participate on every level to be of support to others, especially young breast cancer survivors.

Currently she has a dual role with UPMC; each is involved in bringing more women of color into the areas needed to help make a difference in health disparities. She’s a research specialist at the University of Pittsburgh School of Nursing, where they recruit Black and White women for research studies comparing and contrasting breast cancer. She’s also a Clinical Trial Ambassador. Both roles provide her the opportunity to connect with the women not just as a health care professional, but also as a person who has walked in their shoes—thus, providing the perfect segue to the conversation about clinical trials.

“Clinical trials are what makes and/or breaks what is new and innovative in medicine,” Murphy told the New Pittsburgh Courier. “Properly executed clinical trials saves lives.”

One of the medicines Murphy was on after her breast cancer first went through a clinical trial, and it determined what works and what wouldn’t work. “At 41 I’m still cancer-free, and this may not have been so had the medicine I’m taking not gone through a clinical trial.”

More African Americans need to be involved in breast cancer clinical trials. It is just that simple.

But it’s hard to blame some African Americans who have traditionally stayed away from medical “studies” or “research” experiments.

The federal government convened the Tuskegee Syphilis Experiment, beginning in 1932. The government public health agency recruited 600 mostly-Black men who were sharecroppers, and told them they had “bad blood,” and that they would receive free medical treatment. About 400 of the men had latent syphilis; the others were free of the disease. Though penicillin became the recommended treatment for syphilis in 1947, public health officials at the county level were urged not to give it to the research participants (even those who actually had latent syphilis).

As dozens of Blacks eventually died and hundreds more had excruciating ailments, it wasn’t until 1972 when the fraudulent and inhumane study was uncovered and shut down.

In an exclusive interview with the Courier, Lyn Robertson, director of UPMC’s Clinical Trial Ambassadors program, said that the program “came out of another trial, one that dealt with early-stage breast and lung cancer. After seeing the results we knew we needed to do something to build on the principles of the trial, which empowered individuals to become their own advocate—meaning if they were being treated and were not asked to participate in an available trial, that as the patient, they themselves would bring it up.”

She continued: “If there is a trial for whatever cancer you have, you should be offered it.”

There are stop-gap measures in place so that the detrimental and deadly actions of those in the past would never happen again. When patients agree to participate in a clinical trial, there are protocols to ensure the integrity of the process, and of methods used. Additionally, it is essential to understand that a cancer patient is treated with both the recommended treatment along with the clinical trial.

These protocols are put in place to get past the remaining myths and fears associated with clinical trials. Some object by saying, “I don’t want to be a guinea pig,” or they believe that they will be treated with something that is going to harm them.

That’s why UPMC is trying to hire individuals to work with new patients. “The bottom line is that unfortunately, our community has been misinformed and mistreated. The whole purpose is to ensure that those who do not know are educated around what the truth is by meeting them where they are and showing them that the long-term results of clinical trials can only be positive.”

Yolanda Murphy’s primary objective as a UPMC Clinical Trial Ambassador working with her patients is to “first establish a level of comfort, and build trust, and this is aided by the fact that I look like them. The idea is that by working with me and hearing my story, we are able to connect because I have been where they’ve been”—receiving that diagnosis that no one wants to hear—“you have cancer.”

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