Q&A with Candace Henley, Fight CRC Health Equity Committee Member

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Candace is a tireless advocate for colon cancer prevention and support. Candace was a single mother who was raising five children when she lost her car and home while battling colon cancer. Her own battle and the devastation it left on her life and that of her children inspired her to create The Blue Hat Foundation. The organization is founded on unconditional support and compassion for people fighting colon cancer. Their mission is to provide education, information, and free screenings for colon cancer in minority and medically underserved communities. The Blue Hat Foundation started as a single event “Blue Hat Bow Tie Sunday” at one church in Chicago. The program is now in 15 churches and promotes “education through participation” by asking the congregation to wear blue in honor of someone who is fighting or passed away from colon cancer. In addition to the Sunday events, The Blue Hat Foundation raises awareness about the disease’s signs and shares stories of personal experience through speeches, podcasts, articles, and community partnerships.

Candace is a relentless advocate and member of Fight CRC’s Health Equity Committee.

How did your Blue Hat Foundation get started?

I started Blue Hat Foundation after asking other organizations to do more minority outreach and I kept getting pushed back or told they didn’t have the funding. We started by launching Blue Hat Bow Tie Sunday and it grew from there. I realized it doesn’t take much money to do community outreach and sit at a church, community hospital, or clinic and talk about colorectal cancer. It didn’t cost me anything! After meeting a patient who didn’t have any resources, who didn’t know where to go, and then died, I decided, “You know what, we need to do this.” Eventually, others saw the potential in what I was doing and the need for minority outreach so they helped me get my 501(c)(3). No one else was talking about it and there weren’t enough minority faces represented within the colorectal cancer space. I decided to become the unofficial place for Black faces of colorectal cancer so more people could come out and share their stories.

What kinds of changes have you seen happen because of the Blue Hat Foundation’s work?

I’ve been in tears because I’ve seen more Black and Brown faces talking about colon cancer. They’re not hiding, they’re advocating and they’re involved in research—talking about things like clinical trials, genetic testing, and policy. It’s so heartwarming because when I was going through this starting in 2003, that wasn’t happening.

There’s more spaces opening up for people of color to share their stories now, and this is encouraging other people of color who are looking for faces that look just like them who are surviving. They’re connecting. I’m seeing so many more Brown faces tied to colon cancer than I’ve ever seen, and it’s amazing. I don’t know if it had to do with Chadwick Bozeman dying, because now everybody’s pushing out stories of survivors and caregivers. But it’s heartwarming to see. I feel that the advocacy work I’ve been doing—sharing my story, going into avenues to meet people, and encouraging other patients—is helping others join me. It can’t just be me, I tell them there’s a space for their story and encourage them to get involved.

I feel comforted knowing that maybe a small portion of that is something we’ve done.

You partner with several hospitals and other nonprofits. How do you choose your partners?

Priorities and alignment. I am all about the patient voice. I’m all about health equity and disparities, healthcare disparities, and social determinants of health. I’m very strategic with my partnerships. When I look at activities I want to do, I look for organizations that are looking to do something similar within health equity, raising awareness, community outreach, community engagement, educating communities of color, and research and clinical trials and the importance of participation. It’s equally important that our partnerships understand the social determinants of health (SDOH) in communities of color and that they are doing the work to understand what it takes to do this work.

How does it feel to reflect over the progress you’ve helped make so far?

It’s amazing because this is something I never thought would happen, but it is. We’re on grants with different hospitals and a community Federally Qualified Health Center. I’ve been asked to form a community advisory board, I’m giving lectures and presentations to researchers, geneticists, and other members of the medical community. I’m looking forward to my presentation to the National Institutes of Health (NIH). If the pandemic gets better, I’ll be going to London to present to a genomics group about communities of color and the historic nature for fear of genetic testing and research.

What role do you see advocacy playing in terms of health equity conversations?

Our advocacy is worthless if we’re just talking and not acting. We need to ask for more money and more access. We need more information. We won’t have these changes if the institutions don’t change. Our advocacy has to challenge the institutions because we can advocate for money for patients to have access, but if the institutions aren’t giving the patients access, we’re still missing the mark.

Are there any other examples of disparities or unfair assumptions being made that people of color constantly deal with?

One challenge is for Black men—I hear a lot about how when Black men go into the hospital, it’s a challenge to be treated in the ER and get pain medications because of implicit bias and assumptions about the patient being a drug seeker. For many Black people, they face the challenge of receiving inadequate medications for pain. One time, I was offered Tylenol in the ER. Why? I could take that at home. Why is there a fight for pain medication? Race-based medicine and treatment should not be happening in 2021.

People are not all treated like people. What about my skin color makes someone think I’m not a viable human being, that I don’t hurt, that I don’t cry, that I don’t feel? How can someone look at me and determine there’s something not right about me because they’ve watched the movies or have had a bad experience with another person who looks like me, and now they have a negative view of everyone they come into contact with who looks like me?

I’ve had to fight to receive the health care I know I deserve. When people realize I’m a knowledgeable patient, the conversation changes. But every patient does not have my voice. Part of my mission is helping share this knowledge and education.

Where does your hope come from and how do you persevere after all these setbacks?

I made a promise to God that if I survived, this is what I would do. And I have done it to the best of my ability. My favorite scripture is Philippians 4:11-13: “I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.”

When I think about where I was, I know there’s another patient out there who needs to see me, someone who is going through what I went through. Every day when I talk to my children and I see my grandchildren, I’m reminded that everybody deserves the opportunity to fight their best fight. It doesn’t matter who you are. Everybody deserves this, everybody deserves to live.

As a very well-respected survivor on the Fight CRC Health Equity Committee, what do you hope this group can accomplish together?

Challenge the medical community, challenge processes, challenge institutions, show we can’t affect change if we’re not hitting it from all sides—inside and outside the institutions. We can’t achieve health equity in a system that was never designed to treat minorities in the first place. We’re continuing to piecemeal our health care system without removing old things that were in place, historic things that have caused division. For example, some clinics are still using machines based upon race to determine blood pressure, some practitioners are still saying Black people have a high tolerance of pain.

We have to challenge the historic teachings of institutions. If a patient has Medicaid insurance, they can only get so much treatment compared to patients who have corporate insurance, like a PPO or HMO. Why are we still having inequities based upon insurance and the ability to pay? There’s a lot of challenges we’re facing that we need to look at and expose.

One thought on “Q&A with Candace Henley, Fight CRC Health Equity Committee Member

  1. Oh this makes me so happy and gives me hope. I truly believe we need to see changes in the health care system and the way cancer is treated based on racial bias, ability or zip codes. Your work helps all of us. Thank you Candace and fightCRC!

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