On Jan. 11, 2018—on the cusp of her 30th birthday—Liya Shuster-Bier was diagnosed with a rare form of non-Hodgkin’s lymphoma. Over the past three years, Shuster-Bier taken the knowledge gained from her experience and channeled it into Alula, a new online hub of resources intended to support both patients as well as family and friends through the entire life cycle of cancer, from diagnosis and treatment to recovery and bereavement.
“When I was diagnosed with a rare lymphatic cancer three years ago, my life became completely unrecognizable: Everything from my physical and emotional well-being to my finances, work schedule, and even the way I viewed life itself, changed in an instant,” explains Shuster-Bier. “As many cancer patients will tell you, when the doctor walks in and mutters the words, ‘I’m sorry to tell you, but…,’ there is nothing that can prepare you for that moment. And, there’s little that prepares you for what comes next.”
What Shuster-Bier soon came to realize is that so much of that experience would extend far beyond getting the right curative treatment in the hospital. Beyond the hospital room, no one was helping her organize her life with cancer.
“There was no playbook to explain how I should tell my friends and family the news,” she says. “There was little guidance on how to prepare for the hair loss I incurred as a result of the chemotherapy; when the time came to purchase a wig, I wasn’t sure where and how to begin shopping for one.”
Other decisions, like whether or not to return to the office after a second radiation session of the day, added to the burden. It took a lot of time and work on Shuster-Bier’s part, scouring corners of the Internet to find information and learn tips via intimate conversations with friends also diagnosed with cancer to feel as if she had gained the knowledge and resources that she needed.
It was this learning process through her own treatment that inspired Shuster to launch Alula, with the intention of developing a platform that would help other patients feel more prepared than she was.
“The problem was that by the time I had learned everything I needed to know, I had fortunately completed treatment,” Shuster-Bier says. “The social network effect of cancer is a vast and underserved market. With this in mind, we built Alula to support people, families, and friends through the entire life cycle of cancer, from diagnosis and treatment to recovery and bereavement.”
Alula is currently assembling a team and medical advisory board, which consists of nationwide oncologists, nurses, social workers, caregivers, and patients to both inform product safety as well as build its close adjacency to the medical provision of care.
Shuster stresses that caregivers are an especially important part of Alula’s customer base as many cancer patients simply do not have the energy to organize the support coming their way throughout their treatment. Alula is set up to provide caregivers with tools to plan with patients’ wider support networks, so that patients can focus their own resources and attention on healing. For those who may not have access to this kind of support, Alula says it is developing targeted programs to help these patients through the process as well, in partnership with medical providers.
Slightly akin to a gift registry, Alula hosts a marketplace of products, curated by cancer patients and approved by medical experts, with the ability to create personalized registries for the items a patient really needs, as opposed to what Shuster describes as motivational socks and pink blankets.
Each of these products is then vetted by Alula’s medical advisory board. Shuster’s own oncologist, Dr. Paul Hamlin, is the inaugural member of the board, also joined by Dr. Brandon Hayes-Lattin, from the OHSU Knight Cancer Institute, and Susan Marchal, director of outpatient oncology social work at New York–Presbyterian. Shuster notes that both Hayes-Lattin and Marchal are cancer survivors, and it’s important that her team include people who have been through this experience.
Alula also features digital tools, such as easy-to-set-up calendars and spreadsheets, which help cancer patients organize the outpouring of support from the people who love them—whether finding the right words for difficult emails or finding a friend or family member to drive you to the doctor through shareable treatment calendars.
Initial financial backers for Alula include Chelsea Clinton’s Metrodora Ventures, BBG Ventures general partner Susan Lyne, and Bonobos cofounder Andy Dunn.
“I met Chelsea and her partner, Caroline Kassie, early in my fundraising process, sharing a cup of coffee—back when you still met investors in person,” Shuster-Bier recalls. “My conversation with them reverberated a theme that kept coming up throughout my fundraise: No one is untouched by cancer. What captivated Chelsea about Alula was that it was something she wished had existed when she wanted to be a better support system for her close friends who are breast cancer survivors.”
In the near term, Alula is working to get its platform into patients’ hands, with immediate plans to expand its digital tools and product offerings this spring.
Also on the horizon are establishing partnerships with hospital systems and providers. Through these partnerships, Alula wants to be able to uniquely uplift standards of oncology care by providing a holistic view of patients’ relationship with cancer while helping doctors, nurses, and social workers better integrate inpatient treatment with at-home care. That includes medical interventions such as over-the-counter treatments, and educational tools to better communicate patient side effects and at-home remedies.
“Physically dealing with cancer is taxing enough, and we at Alula want to ensure that more burden doesn’t fall on the patient,” Shuster-Bier says, “Our goal is simple: to make cancer less lonely.”
More health care and Big Pharma coverage from Fortune:
- Vaccinating the world against COVID is off to a slow start. These firms think A.I. and blockchain could help
- Timeline: From the first coronavirus cases to the first vaccinations
- It’s the New Year, and pharma companies are already hiking prices for popular drugs
- Commentary: In the COVID vaccine rollout, our expectations don’t match reality
- The COVID recession may kill more Americans than COVID-19 does