Breaking Down Barriers Through Listening

As COVID-19 spreads across our country, the spotlight it casts on the inequalities that plague our most vulnerable and underrepresented communities has never been brighter.

“The disparities experienced by these communities, especially for people of color, have existed and gone unaddressed for decades. When COVID came along, everything boiling just under the surface rose to the top. There is no more ignoring the problem, so we must find a better way,” said Rudy Anderson, Executive Director of the CHEST Foundation.

Whether the cause is economic and social conditions, race-based discrimination, environmental factors, or genetics, the impact is the same – people of color suffer more, have worse health outcomes, and die of lung disease at a higher rate than any other group. In the United States, people of color are three times more likely to die of asthma, three times more likely to suffer sarcoidosis, and African American men are 50% more likely to get lung cancer (http://www.lavacamedcen.com/health-issues-impacting-african-americans-part-3-lung-disease/. Accessed Sept 29, 2020).

It’s time to make a change, and the only way to do that is by acknowledging and addressing these issues head-on.

LISTENING TO THE VOICES OF THE SILENCED

On September 17, the first of five online conversations took place in Jackson, Mississippi, as part of a five-visit, virtual Listening Tour led by the CHEST Foundation and supported by the Erin Popovich Endowment. Local health-care experts, community resource groups, civic leaders, and patients were invited to talk about the state of pulmonary health care in their communities and the barriers to treatment they face.

“Asking these questions in a community-led forum has never really been done by us. We tend to think we know the answers before we actually listen. That’s what makes this different,” said Anderson. Other virtual listening events are planned for New York, Chicago, San Francisco, and South Texas in October and November.

There is no doubt that these conversations are difficult because they expose issues that make us uncomfortable, like systemic racism, which is linked to a lack of opportunity and lack of resources to protect, improve, and maintain health.

“Asking these questions in a community-led forum has never really been done by us. We tend to think we know the answers before we actually listen. That’s what makes this different.”

The conversations focus on very basic questions that have been overlooked for years: What is your experience of health-care treatment at the local level? What barriers to access are you facing? How can we deliver resources to you more effectively? Can we create opportunities that bring out your voice?

We’ve started where we needed to: speaking with patients, caregivers, physicians, local community leaders, business leaders, and clergy members in our most disproportionately underserved communities. But this is just the beginning.

WHEN WE LISTEN, WE LEARN

The virtual Listening Tour is the most passion-driven approach we’ve ever taken in our philanthropic work. We are showing communities that the Foundation is open to hearing what is hard to accept. By bringing community members together and providing them with a forum, we are saying the problems that affect our underserved communities deserve to be heard.

So far, our community voices’ stories all touch upon the same issues: trust, access, and equitable resources. This might not sound surprising, but what is important is hearing what is behind those words.

Trust: Because of cultural stigmas that have existed for lifetimes and language barriers, patients and caregivers have lower trust levels with their health-care providers. This can reduce sharing and limit the understanding of crucial information needed to produce favorable outcomes.

Access: There is a lack of specialists to diagnose serious chronic lung conditions, particularly in Black, Indigenous, and people of color (BIPOC) communities, due to socioeconomic issues.

Equitable Resources: Due to barriers like inadequate health-care or public services, appropriate medical equipment (ie, inhalers, nebulizers, oxygen equipment) is not readily available.

REAL CHANGE TAKES GETTING UNCOMFORTABLE

To say the people living in these communities are fighting for every breath is not an understatement. The Listening Tour is going to take us all to some emotionally

“We’re done talking. It’s time to listen, really listen. The people living in these communities, the heart and soul of these neighborhoods, know what they need to make things better, but they don’t know the path forward. We’re going to shine a light on that path by illuminating their voices.”

“We’re done talking. It’s time to listen, really listen. The people living in these communities, the heart and soul of these neighborhoods, know what they need to make things better, but they don’t know the path forward. We’re going to shine a light on that path by illuminating their voices,” Anderson said.

Although we started the tour in Jackson, Mississippi, and identified five other locations, these communities exist everywhere. The first initiatives the Foundation will put into place will serve as a roadmap for the future, and with the help of our donors, we hope to be on that road for a long time.

MOVING FROM LISTENING TO ACTION

It’s the Foundation’s plan to elevate the communities’ needs to a national level, have them heard, and work to address them. This is not a short-term plan.

“Once we’ve experienced a few successes in amplifying the issues and put in place some strategies to overcome them, we can use those experiences as a blueprint for communities across the nation,” said Anderson.

The CHEST Foundation is on a long road for change that starts here and now. We are asking for your donations to help fund this initiative. We need to understand what barriers exist in as many communities across the country as possible, but we can only do it with your support. Every dollar you donate to the Listening Tour will help give one more person a platform for their voice to be heard. When enough people are talking, they can’t be ignored.

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