Coalition to Focus on Health Disparities Black Men with Prostate Cancer Face

As CEO of Myovant Sciences, the biopharmaceutical company developing the novel hormonal treatment relugolix for men with advanced prostate cancer, Seely knows that the disease occurs more often in Black men than it does in White men, killing them at a higher rate.

She also knows that the COVID-19 pandemic has created barriers for all men with prostate cancer because social distancing has closed many of the places they go for information and support. Compounding this problem is the fact that COVID-19 and its complications have disproportionately affected the Black community.

For those reasons, Myovant Sciences teamed up with three other organizations to form Forward Momentum, a men’s health coalition with the goal of improving the lives of patients with prostate cancer.

“Our men’s health program is really focused on health disparities and, in particular, African American men,” Seely said. “Oftentimes, they’re not adequately studied, they’re not adequately researched, and they have worse outcomes or more aggressive prostate cancer, but a lot of that is because they don’t have the same access to care and the same awareness, or they come in later for treatment. We’re trying to get them much more involved in research, so we get more information about them — ideally, so they get better health care.”

Myovant’s collaborators are BlackDoctor.org, a consumer website that shares health and wellness news with the Black community and helps readers find doctors who are likely to be culturally sensitive based on interviews or the populations they treat; patient advocacy group Movember, which is dedicated to reducing the rate of premature death among men from prostate cancer, testicular cancer and suicide; and Evidation Health, which conducts research on inventive methods of capturing, quantifying and analyzing health data.

An initial project will study the effects of the COVID-19 pandemic in a group of people representative of the racial makeup of America and the men affected by prostate cancer. The COVID-19 Experience study, conducted in collaboration with Mount Sinai’s Icahn School of Medicine and the New York City Department of Health and Mental Hygiene, will measure the effects of the pandemic on men’s mental health over the course of five months.

BlackDoctor.org and Evidation Health also are including a focus on men with prostate cancer
in the study to measure how these patients are coping with the pandemic’s effects. The study’s results will be shared so that the public understands how the pandemic is affecting diverse people across the United States.

Men can check their eligibility for the study, and sign up, at forwardmomentum.com.

“Representation truly matters in studies of all kinds,” Christine Lemke, president and co-founder of Evidation Health, said. “It’s especially critical for diverse voices to be heard and counted given the disproportionate impact of COVID-19 on communities of color. We’ve designed our study to lower the barriers to participation and capture our collective lived experience of the pandemic.”

Simultaneously, the coalition will work to develop digital tools that empower men to better understand and manage their prostate cancer journeys, including their mental and physical health. This will be accomplished through Movember’s True North website (truenth.org/en-us), which provides information and resources to improve the quality of life and care for men with prostate cancer and their families. Improving access to accurate tools for tracking mental and
physical health, such as wearables, will be part of this effort, as well as learning more about the healthcare-related challenges and opportunities for men during the COVID-19 pandemic.

“Our True North platform is designed to help men navigate their prostate cancer journey, beyond the cancer itself,” said Sam Gledhill, global director of digital health at Movember. “We

are committed to creating innovative tools and resources that can help men track their health and talk about their experiences with the disease, which can impact all dimensions of their lives. We are confident that through partnership we can accelerate this mission.”

Those concerns dovetail with Myovant’s motivation for starting the coalition.

“We are a life sciences company, but it’s very important to us to actually engage with the communities that we serve to help elevate health care,” Seely said. “We like to do this
in what we hope are creative and new ways, and to bring together different organizations that approach problems from very different perspectives to make a major impact in health care. It’s so important to us because there are many who are getting left behind and don’t have access to care.”

The ultimate goal is “to educate the patient and get him back in the center of the conversation,” she said, “so that he is comfortable talking about these problems and getting the help from a health care provider that he needs.”

Undertaking A Challenge

But when dealing with an underserved group of patients, securing participation can be easier said than done, and it will be up to BlackDoctor.org to pave the way. CEO Reggie Ware is thinking about how to meet that challenge as his organization takes on the task of recruiting patients for the COVID-19 Experience study.

“The patient journey is different for our audience,” Ware said. “The biggest difference is the question of: ‘Can we trust the doctor, or not?’ The other piece that’s really big is that we did a study on our site, and it showed that only 10% of our audience feel that they will be treated fairly in the health care system. If a person doesn’t feel that they’re going to get a positive outcome, they’re less likely to go to the doctor.”

Distrust of the health system among Black patients dates in part back to the 1932-1972 study of untreated syphilis in black men, conducted by the U.S. Public Health Service and the Tuskegee Institute, Ware said. Participating men were not given the opportunity to provide informed consent or given adequate treatment to cure their illness, even when penicillin became the standard of care in 1947, according to the Centers for Disease Control and Prevention.

“I’ve never run into a Black person who didn’t know about the Tuskegee experiment,” Ware said.

That has had a chilling effect on Black participation in clinical trials, he said, and is something Forward Momentum is committed to overcoming as it recruits men to be part of its study.

“Oftentimes, when there’s research done across the country, there’s super-low representation of our audience — Black or brown people — and so we’re recruiting minorities for the study,” Ware said. “This is going to be one of the first times in the country’s history that there’s a group of patients in a study who are representative of what this country looks like.”

Seely said she has high hopes that Black patients will participate because the study will seek information rather than offering medical care. She expects the project to be a good way to create comfort with the trial process. Along the way, researchers are likely to learn that members of the Black community have had some concerns in common during the COVID-19 pandemic, Ware said.

Relatively few Black people have jobs that allow them to work from home, he said, “so our message isn’t ‘Work from home,’ but ‘How do you stay safe when you still have to go to work every day?’”

He added that, based on recent research by BlackDoctor. org, 50% of the organization’s audience members expect to refuse a COVID-19 vaccine, while another 20% will have serious reservations about being vaccinated. “We’re brainstorming ways to turn that around,” he said.

Ware praised Myovant and Seely for putting the coalition together.

“They understand that if you bring people to the table and you have meaningful conversations, then it’s going to go well,” he said, “and people are going to look at you differently than the rest of the market, which pretty much just takes your existence for granted. They’re a beacon of light in an industry that I think could use some light.”

He added that, “Once we get everybody to take the vaccine, I think that there are going to be some pretty powerful changes and opportunities for us to come together and really work on health equity and health disparities and really afford some meaningful partnership. I’m hoping that this becomes the first of many partnerships that are going to help people manage their lives.”