Empowering Patients: Lymphoma Research Foundation’s Approach to Addressing the Challenges Faced

It’s an honor to introduce Meghan Gutierrez, a passionate blood cancer patient advocate, and the Chief Executive Officer of the Lymphoma Research Foundation.

Meghan, I'm very grateful and impressed with all the work you've done for patients with blood cancer at Lymphoma Research Foundation. What are some of the most pressing challenges these patients face, and how is the Foundation helping to address them?

One of the primary challenges we continue to see is that patients do not always understand or are not provided complete information about their diagnosis, thus not exposed to all the available treatment options nor activated to seek support from advocacy organizations. The Lymphoma Research Foundation attempts to address this through widescale educational initiatives like those during Blood Cancer Awareness Month. We also have ongoing, robust programs that help patients understand their diagnoses, including their lymphoma/CLL subtype and treatment options, providing them with the necessary educational tools and direct support services.

It's great that the Foundation has invested in these initiatives, Meghan. How do the patients and their caregivers find out about these, and how do you ensure they get the correct information?

There seems to be a trend towards patients seeking out more information about their diagnosis online, through search engines.1 We try to address this with online and digital efforts to meet patients where they are, by directly delivering information about the Foundation’s programs. Another way we’ve found to be successful in reaching patients, particularly at that moment in time when they're either newly diagnosed or have experienced a relapse, is through our Scientific Advisory Board and healthcare practitioners across the country, who can directly share information and materials about our free programs and services. ?

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This year, during Blood Cancer Awareness Month, the community is bringing focus to the impact of blood cancer on mental health. How do you see this as a challenge in the patient journey, and what is being done to address it?

Hearing those words, “you have blood cancer,” is traumatic for not only the patient, but also their community. We are seeing that in addition to addressing a patient's physical health, the impact of their diagnosis on their social and emotional well-being is of equal importance and can affect patient outcomes.2

Many patients express a desire to meet others in the blood cancer community. With this in mind, we've developed the Lymphoma Support Network, a one-to-one peer support program for patients and their caregivers. The Lymphoma Research Foundation has the ability to match a newly diagnosed patient and their caregiver with someone who is later along on their treatment journey or someone who has gone through a similar circumstance. This allows them to meet someone who has walked in their shoes and receive the emotional support they need.

It's wonderful knowing your organization provides a critical network for patients and caregivers, which can make a significant difference in their journey with coping with the challenges they face with blood cancer. I know you’ve been in this field a while and have seen great advancements in a short time. How do you see the landscape of blood cancer research and treatment evolving?

I don’t think we have lived in a more exciting time with the advent of so many new and effective therapies. We have been at the forefront, not only in funding lifesaving and innovative cancer research, but also in bringing the results of that research directly to patients.

Our mission in the blood cancer community is to one day eradicate this disease. It’s very exciting to see that healthcare practitioners now have more tools in their armamentarium than ever before. It’s an important message to broadcast during Blood Cancer Awareness Month because it holds tremendous hope and promise for the community.

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It is invigorating to see all these new modalities and treatments, not only in the research and development phase, but also now approved – where these therapies are reaching patients. How do you ensure the latest information is out there?

We have an incredible team that oversees our education programming and support services. They work daily with our Scientific Advisory Board to ensure the latest information and materials are available for patients on our website and social media.

As one example, typically, within 24 hours of a Food and Drug Administration approval, our Foundation sends an update to the patient community. Once we’ve issued these communications, we get to work and update all relevant materials.

Do you see anything on the horizon that looks promising that we are not pursuing as an industry?

?It's a great question. I think now, more than ever before, two things come to mind. The first is recruiting the next generation of researchers. There's such a need for mentoring and financial support to retain talented young researchers and clinician scientists in our field. It’s vital that our partners can help contribute and support these programs.

?We’ve also seen great success with some of the international disease-specific consortia that the Lymphoma Research Foundation has convened, and AstraZeneca has been a part of some of these efforts. We're taking a global perspective to identify new therapies, treatment sequencing and develop a better understanding of the biology of some of the ultra-rare lymphoma subtypes in particular, some of which don’t even have a standard of care. I think that's an area where multiple stakeholders, advocacy groups, academia, industry and regulatory agencies should continue to work together. I think it's been established that no single laboratory, organization or company on its own will be able to identify a cure for these diseases.

?There's nothing more troubling to me than having to explain to a patient that there is no standard of care, that there's more we don't know about their diagnosis than what we do know. And collaboration is critical to answering those questions.

?Any patients or physicians interested in learning more about our free programming and support services can visit our website (lymphoma.org) to learn more.

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Thank you for taking the time to share all this invaluable information. Hearing everything your organization is doing for blood cancer patients is inspiring and I’m looking forward to continuing to work closely with you and the Lymphoma Research Foundation as we work to deliver innovative medicines that transform outcomes for patients living with hematologic malignancies.

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References:

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1.?????? Chua GP, Tan HK, Gandhi M. Information sources and online information seeking behaviours of cancer patients in Singapore.?Ecancermedicalscience. 2018;12:880. Published 2018 Oct 31. doi:10.3332/ecancer.2018.880

2.?????? Cancer.Net. Leukemia – Chronic Lymphocytic – CLL: Coping with Treatment. https://www.cancer.net/cancer-types/leukemia-chronic-lymphocytic-cll/coping-side-effects. Accessed September 2023.