Creating connections: Arin Ahlum Hanson, LBBC’s director of outreach

For more than a dozen years, Arin Ahlum Hanson, MPH, has been shaping programs and services that bolster LBBC’s leadership in providing breast cancer support and education. Her work centers on reaching often overlooked and under-resourced special populations, including young women, women of color, and those with metastatic disease.

“I’ve always been passionate about health issues and health equity issues, working with communities to give them information that is tailored to their needs,” she says. “I’m really proud of what we’ve created with the LBBC projects I’ve been involved with.”

Among her roles, Arin manages the Young Women’s Initiative, a program focused on concerns of women diagnosed with breast cancer before age 45. The initiative provides young women with information, support services, and opportunities to connect, and trains healthcare providers in caring for them. Its projects have grown over time, funded by grants from the Centers for Disease Control and Prevention (CDC).

In July 2022, the CDC appointed Arin to be a voting member of its Advisory Committee on Breast Cancer in Young Women. The committee evaluates evidence-based activities designed to prevent breast cancer, address higher risk, and support young women after diagnosis. It also advises on ongoing research directions.

Arin takes on this new commitment in addition to directing engagement and outreach at LBBC, becoming a mother in 2021, and living part-time in rural Maryland where she’s helping to renovate a family home. “One thing I’ve learned is how you spend your time and limited energy is precious. I learned this from my work at LBBC, working closing with our volunteers and others navigating breast cancer, but I think about this even more as a new mom.” she says.

Arin spoke with LBBC contributor Robin Warshaw about the CDC committee’s work and how LBBC programs are making a difference for young women and others.

Robin: Why is it important to young women that the CDC advisory committee exists?

Arin: It’s rare to be diagnosed with breast cancer under age 45. But from research—and from Living Beyond Breast Cancer’s experience working with young women since our founding over 30 years ago—we know that young women have unique needs that are not being addressed through our medical system and standard care. Often these needs are even greater for communities of color and other under-represented groups. We need more tailored interventions, tailored treatments, and tailored support systems for younger women.

The CDC and federal government have recognized this through the advisory committee and specifically the EARLY Act, first passed with the Affordable Care Act. EARLY Act legislation was led by Rep. Debbie Wasserman Schultz (D-FL-23), who herself was diagnosed with breast cancer at age 41 and is BRCA2 positive. She has been a champion of young women diagnosed with breast cancer and the necessary funding needed for this work.

The committee provides advice to federal agencies on how to best steward this money and make the biggest impact for young women. It looks at issues such as how do we educate young women about signs and symptoms to how to have conversations with their doctors to help people navigate a diagnosis.

Robin: LBBC’s Young Advocate Program trains volunteers to use their personal breast cancer experiences to reach others in their communities. As a key project of the Young Women’s Initiative, how has it grown?

Arin: The Young Advocate Program started in 2013, and we’ve trained almost 250 young advocates so far. These amazing women represent the vast diversity of young people impacted by breast cancer in this country. We’ve been able to get to know them, support them, and have them share LBBC’s messages, resources, and their experiences through programs and blog posts online. Many have become key advisors to LBBC, helping us make sure our programming for younger people is headed in the right direction.

The Young Advocate Program has a strong curriculum and model. One thing we learned early on is that we could have great training but need to keep volunteers engaged through ongoing support and touch points. That helps them feel connected and get the skills and tools to do outreach in their communities. We now have more staff supporting them, a program calendar, continuing education, check-in calls, and coaching calls.

From the beginning, we recruited a diverse group of young advocates. We looked at diversity in terms of race and ethnicity, but also region, income, sexual orientation, and experiences with this disease, such as metastatic or early-stage breast cancer. This makes the learning environment strong, and helps the organization connect with and hear from all types of people. We’ve also built up an alumni network to connect newer advocates with those who are more seasoned to facilitate support.

It's been a great grassroots opportunity to connect other young people to LBBC and its resources through the work of trained advocates.

Robin: Why has the Young Women’s Initiative also focused on health provider education?

Arin: One of the main ways to move the needle in care for young women is to make sure that health care providers are better equipped with resources for young women and better trained to meet their needs.

Since 2013, when we shared the results of our first national needs assessment of young women with health care providers, we have offered webinars to help health care providers build skills for better care. All the topics have a connection to the care of young people. As many as 600 people register for those webinars.

We’ve also created our Survivorship Series for Young Women, which trains oncology nurse navigators at selected community cancer centers to implement a four-part education series with their young patients. This program is a great way to bring high-quality patient education to centers that don’t have the capacity to create them.

Information that nurse navigators receive through the program reaches young women who might not learn it any other way. They know their navigator and trust their navigator. It’s a cool program. I loved creating it, and it’s fun to be implementing it. We are working on expanding the model to address quality of life needs of those living with MBC.

Robin: I’m guessing that the videos for young women on LBBC.org, such as a series on Sex, Intimacy, and Breast Cancer, have been popular?

Arin: We’ve done a number of video projects. Some I was very involved with and some my role was as an advisor. The sexual health topic came from a needs assessment we did in 2020. Not surprisingly, young women noted sexual health as a key education need. They wanted more information about lack of interest or low libido, in addition to the practical tips on managing the physical impacts of treatment.

The videos address the more complicated emotional communication with your sexual partners. In addition to the videos being very popular, we had nice comments from viewers on our YouTube channel. They connected with the content, talking about their experiences with sexual impacts after breast cancer and saying the videos made them feel less alone.

In August, we’ll provide webinars on sexual health to health care providers on how they can better support their patients. Providers have an awareness that they need more skills and education on this. It isn’t a topic that’s taught very well in medical school.

Robin: Support work and volunteering as an advocate can build personal bonds. Is that also a strength of LBBC’s services?

Arin: I feel incredibly lucky to have met so many amazing people, particularly through the Young Advocate Program and the Hear My Voice Metastatic Advocate Program. People are so generous with their time and talents. They connect with our organization and share some really hard, intimate aspects of their life. They share themselves to make a difference for those who will be diagnosed.

I remember at the very first Young Advocate training, seeing a woman with early-stage breast cancer meeting a young woman living with metastatic breast cancer. They formed a strong connection, and the woman with early-stage disease told her, “Metastatic breast cancer was my biggest fear, and then I saw you living and thriving.”

That moment stood out to me. We have a number of friendships develop from those programs. The trainings are structures for connections to happen, learning, and community to be built.

Robin: How do you handle the emotionally difficult times that can arise in your work?

Arin: What helps sustain me is a combination of gratitude for the personal connections I make with advocates, my co-workers, and others, and seeing the impact our organization is making every day. We manage some challenging aspects of this work, including the death of volunteers and community members. I try to maintain supportive practices I’ve built into my life: connection with my family, yoga, being outside in nature, and now snuggles with my young son. Those things recharge me and are pretty important.

Breast cancer diagnosed at a young age is very shocking. I’m proud that my work may have helped to lessen the impact of that and help people have the information they need to move forward.