On a weekday morning in 2019, Liya Shuster-Bier walked into her office at The Overton Project, an impact investing firm in New York City, and greeted her boss like she would on any other day. But today, she wasn’t there to chat about the day-to-day responsibilities of her role. Today, she’d be asking for a 100 day hiatus from work.
A year earlier, Shuster-Bier received the earth-shattering news that, at just 29 years old, she had a rare form of non-Hodgkin’s lymphoma. She spent the better part of the next year working as much as possible, juggling her treatment with professional responsibilities, and even achieved remission after 18 weeks of treatment. But when the cancer returned a few months later, she knew that this time, she’d have to take a different approach.
“When I first got diagnosed, I kept working as much as possible,” Shuster-Bier says. “[But eventually], I was too weak to take the subway to go to work. I could not open up my laptop, I couldn't read email. I was truly disabled. And that was when I took leave.”
Dealing with a cancer diagnosis is a reality for many Americans.
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For Shuster-Bier, her diagnosis wasn’t the first time cancer had turned her world upside down: In 2016, her mother was diagnosed with breast cancer, starting an 18-month treatment course that left both women feeling frustrated by the lack of guidance on navigating the everyday realities of the illness.
These experiences would ultimately inform Shuster-Bier’s professional path: Since 2020, she’s been the founder and CEO of Alula, a company that’s dedicated to making daily quality of life central to cancer care. She describes Alula as a consumer-facing “one-stop-shop” where patients and their caregivers can purchase products to help them cope with treatment side effects and access 24/7 support from professionals who can offer personalized recommendations and guidance.
But back in 2019, Shuster-Bier was still dealing with waves of anxiety as she kept her employer abreast of the changing realities of her cancer journey. And on the day she requested her leave — so she could undergo a mandatory 100-day quarantine to minimize the risk of infection following a bone marrow transplant — she started to reconsider her relationship with work.
“My cancer diagnosis really helped me pause and reevaluate what a lot of people are evaluating right now with the
Seeking support
By the time she took a break from work, Shuster-Bier was well versed in the stresses that come with being a cancer patient in the workforce. The financial burden of treatment weighed heavily on her, adding to the sense of isolation she felt as she navigated problems no one else in her professional orbit was contending with.
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“In 2018 and 2019, virtually all of my paychecks went to my hospital bills,” says Shuster-Bier, who calls chemotherapy “one of the most financially toxic treatments that exists.” In 2018,
While Shuster-Bier was able to rely on her husband’s health insurance, she recognizes that some people depend upon their own employer’s benefits to cover the cost of treatment, adding another layer of nuance to the decision to take leave.
Fortunately, Shuster-Bier’s employer was both supportive and responsive to her shifting needs. When she was still juggling work early in her treatment, her manager suggested she come into the office to hang out, just for a change of scenery. She remembers him saying, “you may not be able to get through very much, but maybe being in this environment will be supportive for you.” When it came time for her to take leave, her responsibilities were shifted to a colleague until she could return.
Susan Marchal, a licensed clinical social worker specialized in outpatient oncology, applauds that kind of open-mindedness. For employers who feel less sure of how to support cancer patients, she has a few suggestions.
After thanking the person for being vulnerable, employers should check their assumptions at the door, Marchal says. “Telling someone, ‘I'm so sorry that you’re going to lose your hair,’ or ‘I guess you’re going to have to quit,’ might be earth-shattering for an employee who isn’t going to lose their hair, or who may not even need chemotherapy.”
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If an employee is feeling well enough to work but isn’t up to making the commute, Marchal says that remote work could be one option to consider, especially as the past two years of working from home during the pandemic have created that precedent in many workplaces.
Marchal also notes that social interaction in the workplace can boost moods and mental wellness in patients. She’s a big advocate for Employee Resource Groups that workers can participate in either in person or via Zoom, to help them stay connected to coworkers.
Beyond emotional support, some companies have started to provide more specialized and focused
“If we don't support our people whatever their wellness needs may be, they can’t be the best colleagues they can be,” Julie Law, John Hancock’s global head of talent management, recently told EBN. “We really want to make sure that we support them professionally and personally, however we can.”
That kind of thinking and support can be life-changing for employees, and is vital to organizations’ lasting success, too.
“We know that when our employees are well, they're higher performing and our customers are also happier,” Law says. “So we're more profitable when our colleagues are healthy.”
Building community
These challenges were top of mind for Shuster-Bier during her post-transplant recovery. As she spent long stretches in the hospital navigating a confusing array of side effects, she began to formulate the idea for Alula.
The company is the result of countless hours spent in conversation with nurses and other patients at the hospital, and countless additional hours managing the life-impairing, symptomatic burdens of her own cancer treatments.
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Currently, visitors to Alula’s website can browse a wide array of cancer care products — from a medical mouthwash to combat mouth sores to a variety of starter kits for coping with treatment-induced nausea, aches and pains and menopause — filtering by treatment and side effect. They can also chat 24/7 with a specialist who can help the patient or their caregiver choose the best product for their situation.
Shuster-Bier envisions Alula not just as a product website, but as a revolutionary tool for people with cancer to seek the holistic support that they need. While she recognizes the integral role a patient’s treatment team plays in their cancer journey, she wants to take the cancer care model beyond the focus on physical changes of treatment to include the intense mental and emotional processing — and sometimes, even shame — that accompanies those physical changes.
Shuster-Bier says she struggled, for example, to communicate with her oncologist when she experienced incontinence as a treatment side effect. She wants to make those conversations, and the solutions stemming from them, more accessible for other patients.
With this in mind, the CEO is also building a clinical arm to Alula, gathering oncology nurses and nurses from other specialty care areas who can answer questions from patients and caregivers about life altering symptoms like alopecia, rapid hair loss from chemotherapy, constipation, incontinence, sexual health and more. Shuster-Bier is currently not planning on building an employer-provided offering as the company scales in the near-term, though she has received interest from that space.
“We want to really create a moat around radical conversations surrounding your care, that you're not having with your oncologist but that are impacting you on an everyday level,” Shuster-Bier says.
Bringing support to work
Since deciding to take an entrepreneurial leap and quit her role in impact investing to launch Alula, Shuster-Bier (who’s enjoying her third year of remission) has already built a robust team of seven people to manage the company’s growing range of services. Now, as both a leader and a people manager, she’s leveraging the lessons she’s learned as an employee with cancer to create healthy work rhythms for her own team.
In addition to providing a robust healthcare and benefits package that includes mental health support, telehealth tools and access to specialist providers, Shuster-Bier is equally focused on creating a supportive culture in the day-to-day. Among the measures she’s put in place is carving out nights from 7:00 PM to 8:00 AM for what she calls “protected time.” Between these hours, employees are not allowed to send emails or Slack messages to one another regarding anything work-related, unless there’s an emergency.
Employees who do opt to work during those protected hours can use the “schedule send” email feature to make progress on their tasks without disrupting the work rhythms of the rest of the team.
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For many, she points out, these hours are a critical window for sleeping, movement, nourishment and family time. Through consultations with her care team and survivorship doctors, she says she’s learned to think of these factors as some of the key building blocks for a healthy immune system that’s more resistant to chronic inflammation, which
“Those are such simple innovations, but they have been dramatic for expectations of how we restore ourselves at the end of the workday,” she says. “When you install work rhythms like that, it develops this DNA of compassion across the company and this celebration of healing and restoration.”
As an advocate for supportive workplaces, Shuster-Bier encourages companies to clearly outline their sick leave and disability leave programs as soon as employees are hired. Knowing what’s available to them from the start, she says, may help a workforce feel empowered to start the tough discussion when it’s time to actually use those benefits.
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The same holds true for caregivers. For Shuster-Bier, it was often her sister stepping in to care for her while her husband was at work — yet her sister’s job did not offer any provisions for sibling caregiving. Cancer patients depend on family members, friends and even neighbors at various points in their journey, Shuster-Bier says, and workplace flexibility is equally important for the people upon whom these patients rely.
Of course, she recognizes that work rhythms and benefits packages won’t look the same across companies or even industries, but she encourages other leaders to acknowledge and respect employees’ needs and time — regardless of what they may be dealing with outside of the office. It’s her guiding light as she scales Alula, working to deliver a better experience to both her customers and her employees.
“Whether you're sick or healthy, a parent, moving, whatever season of life you're in, that's impacting how you're showing up for work,” Shuster-Bier says. “The projects and the work that everyone on your team is delivering will flow from investing in employees and making them feel supported in their season of life.”
