Want to advocate for cancer patients but not sure where to start? Whether you’ve got 10 hours or 10 minutes a day, we’re here to help you support your loved ones.
A cancer advocate doesn’t need to be someone who devotes their entire life to the fight against cancer. Advocacy takes many forms, from the lawyer pressing for congressional reform all the way down to the teenager organizing a fundraising walk at their high school.
So what makes a good cancer advocate? It’s not necessarily about how much time you devote or how much money you raise, it’s about the impact you make on patients and survivors — even if you’re helping just one person.
To help understand the best way to become an advocate, we spoke with three people well-versed on the topic of cancer and cancer care: Yaphet Smith, Julian Adams, and Barbara Segarra-Vazquez. In 2018, Smith’s wife Kelly was diagnosed with myeloma, just after the couple’s 20th wedding anniversary. Smith became Kelly’s primary caregiver, while also taking on the lion’s share of responsibility for their teenager Onyx. Adams is the CEO of Stand Up 2 Cancer, a non-profit that funds multidisciplinary, multi-institutional, collaborative research projects to address critical problems in cancer prevention, diagnosis, and treatment. Two-time cancer survivor and Puerto Rico native Segarra-Vazquez is a patient advocate for Hispanic and Latino families dealing with cancer. Frustrated with the lack of resources and services for Spanish-speaking cancer patients, Segarra-Vazquez now works with the National Health Organization’s Southwest Oncology Group to ensure her community has a voice in major healthcare policy decisions.
Smith, Adams, and Segarra-Vazquez shared five ways anyone can advocate for cancer patients and survivors and ease the burden of those battling this disease.
Make life easier
As a caregiver, Smith found some of the simplest gestures from friends and family to be the most impactful. “When we went to MD Anderson, a friend of a friend told us the most convenient hotel to stay at, and which elevators were least crowded in the hospital,” says Smith. “That was huge.”
Other small acts of kindness made life more bearable for the family, like how a home-cooked meal seemed to magically appear on their doorstep each night. “At the dinner table, Kelly, Onyx, and I have a tradition where we go around the table and say something we’re grateful for from that day,” says Smith. “I remember Onyx saying they were grateful for some doughnuts someone had given us.”
If the patient and their family are already swimming in home-cooked meals, consider another meaningful gift. Smith remembers the peace of mind he got from a book his friend gave to him: “It was called The Patient’s Playbook,” he recalls. “It really helped prepare me for what was to come. It advised avoiding expectations, asking questions, tracking medical records, avoiding unnecessary tests…all things I hadn’t considered before.”
Tap into your network
If you know someone who works in the medical field, Adams urges using these connections to help patients find and receive the best care available for their specific disease. “Find out if any of your friends knows an oncologist, or work at a cancer center,” Adams suggests. “Ask them who the best specialists are for the type of cancer you’re dealing with. You don’t need advanced scientific training to do this kind of outreach, you just need to be dogged and empathetic.”
In addition to medical professionals, tap into survivor networks: If you can’t provide advice from first-hand experience, find someone who can. “Speaking to someone who’s been down this road before can be invaluable in preparing a family for what’s to come,” says Adams. Seek support groups for the patient or caregiver where he or she can connect with others and share their emotions with people who fully understand.
Segarra-Vazquez says one way to make a monumental difference for Hispanic and Latino patients battling cancer is to connect them with doctors who speak their language. “Even with a translator, it can be really difficult to understand what’s happening when your doctor speaks a different language,” explains Segarra-Vazquez. “With all the medical jargon that comes with a cancer diagnosis, even English speakers have a hard time understanding what they’re being told. Then add to that the layer of an interpreter, and anyone would feel overwhelmed.” Segarra-Vazquez suggests seeking out Spanish-speaking professionals in the medical community and asking them to help explain a patient’s diagnosis to them. They may also be able to recommend a Spanish-speaking physician who could be a better fit for that patient.
Do the research
“If it’s possible, I always suggest patients look for clinical trials, especially when they need financial assistance,” says Adams. “In these trials, the costs are absorbed by the sponsor. The standard of care is also really high — there’s constant monitoring, pain treatment, and side effect management.”
But finding an appropriate trial can require doing some leg work and wading through medical jargon. With appointments piling up, emotions running high, and daily life upended, it can be hard for patients and caregivers to dedicate the necessary time to really get into the weeds.
Adams suggests cancer advocates can help by sifting through potential clinical trials and then contacting an expert at an organization like Stand Up 2 Cancer or American Cancer Society to determine if a patient might be eligible.
Use your skills and resources to your advantage
Volunteering often consists of grand, public gestures: bike rides, charity walks, or fundraisers. Although all advocacy is good advocacy, if you’re terrible at baking you’re not going to be much help at the bake sale. Use the expertise you already have to make the most impact. Ask your local cancer support center what they need – chances are you could be the answer to something on that list.
“One of our scientific advisors is a lawyer, and she’s used those skills to get legislation passed on pediatric cancer,” says Adams. If you’re a financial wiz, you could help patients navigate their treatment payments. Even something that seems simple, like a car, can be a great resource. Hundreds of patients need transportation assistance to and from appointments. Volunteering as a driver is a minimal time commitment but can take a huge weight off a patient’s shoulders.
If you have the same cultural background or speak the same language as a patient, you can help bridge communication gaps between them and their doctor. “Different cultures have different communication styles, and they respond to nonverbal cues differently,” explains Segarra-Vazquez. “Although you can’t generalize about every Hispanic person, there are definitely cultural differences doctors don’t account for when working with Hispanic patients. Hispanic people often appreciate warmth, they like to hug and make eye contact.”
But, Segarra-Vazquez warns, being able to translate doesn’t mean you should cut a patient out of making their own decisions: “While it can be crucial to help a patient understand what’s going on in their own language, make sure they feel empowered. Every patient should make their own decisions about their care based on what’s important to them.” Having a trusted translator impacts more than just a patient’s basic understanding of their disease. It can help them feel more comfortable and confident with their care.
Level up with certification or training
To grow your advocacy skills further, look for workshops and other training opportunities. With support from Exact Sciences, Segarra-Vazquez recently hosted the first-ever patient advocate training for members of the Hispanic cancer community. “Latinos are vastly underrepresented in clinical trials,” explains Segarra-Vazquez. “It’s not necessarily because they don’t want to participate — most people just aren’t aware of them, because there aren’t materials in Spanish that explain these options.” That’s just one of the myriad issues Segarra-Vazquez and her team of Latino cancer advocates is determined to influence, including changing policies and informing medical best practices to provide culturally competent care.
If you want to earn the official title of “patient advocate,” there’s a certification for that. Adams explains: “This is a credential you can earn by taking a certification exam to determine your level of ability to serve patients and families with a portion of their cancer journey.” Certified advocates ensure the patient or family fully grasp critical medical decisions, understand their rights, and feel emboldened to voice their own needs during treatment. The eligibility requirements depend on education and experience — so many board-certified advocates have nursing degrees or work in the medical industry — but with some studying, anyone can qualify.
