Tackling Colorectal Cancer Care Inequities Through Patient Advocacy Groups

In the second part of this interview, we discuss findings from a recent Takeda study on health care disparities that patients with colorectal cancer may face, especially Black and Hispanic patients, and the promise of patient advocacy groups (PAGs) that support diversity, equity, and inclusion (DEI) efforts.

Key goals of the Colorectal Cancer Alliance include improving patient education with culturally relevant materials, encouraging shared decision-making, and increasing awareness of biomarker testing, says Kim Newcomer, director of volunteers, Colorectal Cancer Alliance.

This transcript was lightly edited and captions are AI-generated.

Transcript

The study found that 58% of patients had to decide between affording treatment or meeting basic needs, especially Black and Hispanic patients. How might the Trump administration's lack of favor toward DEI affect this population of patients?

Yes, there is a lot of change happening right now, and we know historically, Black and Hispanic communities already face significant disparities in colorectal cancer care, including a later stage diagnosis, lower access to biomarker testing, and higher financial burdens. With the new administration shifting policy, there is some uncertainty about how it will affect this population. However, advocacy groups like the Alliance [Colorectal Cancer Alliance] are helping to fill those gaps through community outreach, financial programs, and policy advocacy to improve equitable access to care. We're also looking for ways to improve outcomes for patients, especially for those most in need. Raising awareness about this is a key goal of this survey.

What are some ways that patients could feel more empowered in the decision-making process?

I think there's a few things we can do; one is improving patient education. We need to provide clear, accessible, and culturally relevant materials for patients about treatment options, side effects, and clinical trials. We have to also encourage shared decision-making. We need to train health care providers to engage with patients in discussions, rather than making assumptions about the patient's preferences. And then, expanding access to patient advocacy groups is really key. Many patients don't realize how much support patient advocacy groups can offer.

We also have to think about increasing awareness of biomarker testing. This is so important, especially in metastatic colorectal cancer patients. They don't receive biomarker testing, which can provide a more personalized and effective treatment choices, but it has to be done at the beginning of treatment.

What are some ways that PAGs can help facilitate a better treatment experience for patients undergoing treatment for colorectal cancer?

Takeda was really great at bringing all of the patient advocacy groups together. We all do a little of the same, but we all do something a little different by providing peer support. The Alliance has a buddy program and a Blue Hope Nation, offering emotional support and practical support by connecting patients with others who are in the similar situation and had similar experiences. Also offering financial assistance guidance. Many patients don't know about the resources that are available to them in their local area. There are grants, co-pay assistance. There are other nonprofits and organizations that can really offer one-on-one financial navigation services. So, it's really getting that information out.

There's always advocating for policy change. Patient advocacy groups can push for additional insurance coverage, lower drug costs, and improve patient protections. The Alliance has our platform, bluehq.org, which can provide personal, patient-friendly resources to help patients navigate their treatment options. It's a really amazing website. The patient goes in and just adds a little bit of their information, and it curates everything they need to navigate their disease, and also can connect them to a patient navigator.

And then, last but not least, improving clinical trial access. Many of our patients, especially from underrepresented groups, don't know about clinical trial opportunities. And patient advocacy groups really have a really great spot where we can educate and connect patients with trials that could offer better treatment options for all patients. And we know by better strengthening education, financial support, peer-to-peer connections, and policy advocacy, patient advocacy groups can significantly improve that treatment experience for metastatic colorectal cancer patients. And of course, if any patients have any questions, they're free to reach out to the Colorectal Cancer Alliance. We have a website; it's colorectalcancer.org. So, those are just a few ways we can improve the experience for metastatic colorectal cancer patients.