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Breast cancer summit tackles disparities

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A frightening diagnosis with breast cancer in 2007 led Lisa Hayes to leave behind her legal career and devote herself to serving others facing health crises. Hayes is the director of women’s health services at Gennesaret Free Clinics in Indianapolis and executive director of the R.E.D. (Reaching to End Disparities) Alliance, which works to reduce breast cancer late-stage diagnosis and death rates for African-American women.

As the R.E.D. Alliance’s annual Breast Health Summit scheduled for March 8 and 9 at the Marriott Hotel East nears, Hayes gave this interview:

What do you consider the most important health care work that you do?

My primary role is to work for better access to those who are underserved, particularly women who are uninsured or face other barriers, and in particular breast health services. Studies have shown that African-American women in Indianapolis are 42 percent more likely than Caucasian women to die of breast cancer.

What motivates you to do your work?

I was diagnosed with breast cancer at a time when I was in between jobs and did not have any health insurance. For the first time in my professional life, I did not have insurance, and that was the time I needed it the most. My husband had been laid off from his job, and we had three children in school. It was very scary to find a lump and not have insurance, and to wonder whether I should ignore it and hope it goes away, whether I should use funds we really need for other things to get checked out.

I was lucky enough to get connected to community resources for diagnostic tests and even my treatment. I discovered that there were families and churches and friends to help. But that is not everyone’s experience.

So, just eight weeks after I finished my own breast cancer treatment, I started working at Gennesaret Free Clinics. I don’t think that was a coincidence whatsoever. God directed me there. This was my opportunity to give back to women in the same situation I was in. I had been blessed with a very fulfilling career as an attorney, so the folks at Gennesaret were surprised I was interested in the role. They told me I was overqualified and would not make the money I made in the past.

But this is the ministry that God directed me to. After I was diagnosed, I had a sister-in-law and mother-in-law who both died from breast cancer. They were in that number of African-American women who face those higher mortality rates. God spared my life here, but He did not spare me so I could just sit around and enjoy being a survivor.

What are the biggest challenges you — or those you care for — face?

The mission of the R.E.D. Alliance is not just to raise awareness of that enormous disparity, but to partner with research to discover why it exists. It’s not just the mortality rate: African-American women tend to be diagnosed at a later stage of breast cancer, and at an earlier age. 

We approach this challenge from two directions. The first is through the individual women affected, making sure that each person is aware of the screening, diagnostic and treatment services available and can access them. The second approach is more systemic: We are asking why this disparity exists. Are Black women choosing to delay their treatment? Or are there barriers in the system preventing them from accessing what they need?

So we partner with an Indiana University Fairbanks School of Public Health researcher who is tracking African-American women throughout their treatment, trying to determine what barriers they may be facing. One of the things we heard was that, in the existing cancer support groups, they did not see people who looked like them or had similar experiences. So we worked with our partner organization Pink-4-Ever to form S.I.S., Sisters Inspired to Stand, to create a community of support for both the survivors and their caregivers. 

What do you think the U.S. health care system should look like?

I believe that the health care system in the U.S. should be one that assures that everyone has appropriate, timely access to quality care. I believe that is a basic right. How that happens, I am not sure about yet. Maybe it looks like Medicare for All, or a system where people can buy in to Medicaid to get affordable health care.

But it can’t end there. Once you get that access, there are still potential barriers that have to be addressed. For example, I learned a few years ago that women on Medicaid do not have better mammography screening rates than women not covered. That was puzzling to me, because Medicaid covers that screening cost. Then, once you look behind the data, you see that people may not have the transportation to get to the screening, or difficulty setting it up, or family pressures like a sick child the day of the screening.

That is what my work at Gennesaret is about. We provide the care services, but we do not stop there. I ask the patients if they can get to the appointment, whether it conflicts with their work hours, etc. In our current health care environment, primary care doctors under pressure to get reimbursement don’t always have the time to ask questions like that. What if we had a health care system that valued patients enough to make sure that a physician encounter is followed by a conversation with a community health worker to make sure that the patient understands everything? What if we had a system that ensures there is always follow-up?

What role do you see people of faith and faith communities playing in making the needed changes?

What we learned at the R.E.D. Alliance is that one of the best ways to reach African-American women with health education is by going through the churches. Research shows that is a place they consider to be one of safety and comfort and reliability. And they go — if you ever go to a Black church, you see mostly women! So we provide a lot of our resources in church settings. That is a place of trust for women, which is not always the case in a hospital or a social worker’s office.

We believe that one of the reasons why African-American women are being diagnosed so late is fear: fear that paralyzes them, and they don’t get it checked out. Or they decide it is destiny and they will just pray about it. We need pastors and churches to say, “No, we will pray about it, but we are going to take action as well.”

Churches can also play a role in advocating for some of the systemic changes we need. A lot of the impetus behind the civil rights movement was the Black church. Churches can play that same role in the health care field as well.

 To learn more about the R.E.D. Alliance, and its annual Breast Health Summit scheduled for March 8 and 9, click here.

Fran Quigley is the editor of the free weekly newsletter, Faith in Healthcare, www.faithinhealthare.org , and is director of the Health and Human Rights Clinic at Indiana University McKinney School of Law.

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