KEYNOTE: The Long Arc of Advocacy to Improve the Lives of Patients With Cancer

In 1995, when Matthew Zachary was 21 years old and at college, he went to a campus doctor because he had hand neuropathy, although he didn’t know at the time that was what it was called. He was prescribed Robitussin and went on his way.

By the spring, more symptoms popped up, including blurred vision, slurred speech, and headaches. The campus doctors began to realize that something might really be wrong, and that it wasn’t all in Zachary’s head.

Matthew Zachary | Image credit: LinkedIn

Except it was in his head: Zachary was diagnosed with medulloblastoma.
“Back then, it was basically Gulag craniotomies,” he said, showing the picture of a scar down the entire back of his head during his keynote presentation at annual Patient-Centered Oncology Care conference, presented by The American Journal of Managed Care.

During his keynote, Zachary, the founder of Stupid Cancer, discussed what advocacy really means and its importance through telling his personal story and journey with good humor, acerbic wit, and passion as a nearly 29-year survivor of cancer.

When Zachary was diagnosed with medulloblastoma, he was in graduate school to be a film composer, because he had been passionate about playing the piano since he was 11 years old. After surgery and radiation, everyone thought he was still going to die. On top of that, he couldn’t go back to school because he was a musician, and he hadn’t been able to rehabilitate his left hand.

“All of the training and the studying and the tutelage and the pedagogy was gone from this hand, [from] not using it for 6 months, and that was the worst day of my life at that time, when we had to pull back my application from UCSF film school,” Zachary said.

He kept surpassing his survival expectation, but after radiation, he was “a shell of a person. I lost my life, but I didn’t die.” His doctors wanted to give him chemotherapy, a mixture of vincristine and cisplatin. This combination would give him a 55% chance of surviving 5 years, they proudly told 22-year-old Zachary, which meant he would likely die at 27 years old.

Luckily, his father’s best friend and Zachary’s godfather was Jay Tischfield, Phd, MPh, the “foremost, unknown genomicist.” His Uncle Jay took a look at the recommended treatment, the highest possible dose of those 2 therapies, and told Zachary that he didn’t want to take the chemotherapy.

“Who says no to chemotherapy?” Zachary asked. His Uncle Jay knew that the vincristine would have rendered his hands inoperable as a pianist and the cisplatin would have made him deaf.

As Zachary recalled, “Things that matter to a pianist and a musician, but not to a prescriber.”

He walked away, and that was his last day of his cancer treatment.

Although he was dealing with terrible adverse effects from treatment and his quality of life was in the dumps, he needed something to give him a sense of purpose. He rehabbed his left hand, started recording, and self-released 2 albums that ended up being the “keys to the kingdom” to get him into advocacy. Someone learned the name of one of the medicines he was taking to manage his adverse effects from treatment and, thus, improve his quality of life was granisetron (Kytril), which led to a musical deal. In 2000, Zachary performed a concert on the National Mall, in Washington, DC, for 30,000 people, and suddenly he was being called the “cancertainer,” which “led to something really amazing.”

Seven years after being the only young adult he knew with cancer, he met his first cancer buddy, Craig Lustig, now the associate director at Georgetown Lombardi Comprehensive Cancer Center’s Ruesch Center for the Cure of Gastrointestinal Cancers, in Washington, DC. At the time, there were no peer-support groups; it was just “walk-it-off therapy.” But Lustig was then involved with nascent groups, and Zachary joined the LIVESTRONG Young Adult Alliance and learned about advocacy. The way Lustig explained advocacy was that it ensured the next person doesn’t get Robitussin for brain cancer.

“I learned…advocacy was all about, at the time, Gen Xers having a much less crappy time dealing with cancer,” he said. “I was like, ‘Hey, that’s me. What can I do? Count me in.’”

In 2007, Zachary created Stupid Cancer, “a very in-your-face, tongue-in-cheek, derisive anticancer brand for Gen Xers.” The idea was to “drop your cancer at the door” and “let’s do something huge.”

One of the more tangible things to come out of Stupid Cancer is the right to parenthood, Zachary said. While young adult cancer is not any better or worse than cancer at any other age, one way it is unique is that patients can lose their fertility and, thus, their ability to have kids.

Advocates fought for 12 years to create guidelines, standards, and best practices, and today only 18 states cover reimbursement for fertility preservation, but that’s still 18 states, Zachary said. Advocacy is a long game, he said.

Eventually, this advocacy hit home for him. He had met 2 women who had lost their fertility after receiving radiation treatment and started a nonprofit organization that gave money to young adults who couldn’t afford in vitro fertilization, preservation, or any other reproduction option. When Zachary got married, he and his wife decided they wanted to have kids, but he was sterile after his treatments. He had banked sperm beforehand because that was the protocol for his cancer treatments. Zachary and his wife knew their chance of conception was low. but they ended up with 2 viable embryos, and his wife gave birth to twins.

If the 2 women who weren’t able to have children hadn’t “taken up arms and done their hard work,” Zachary and his wife wouldn’t have known they had another option, wouldn’t have met the doctor who helped them, and wouldn’t have twins in high school today.

“In the young adult cancer space, in my world, it’s not about a cure,” said Zachary, who stepped down as CEO of Stupid Cancer a few years ago. “Access means dignity. Access means equity. And access means being able to live your life as best as you can.”