Todd Gates: Building Pathways to Better Cancer Care

Age: 62Cattaraugus Territory of the Seneca Nation

Todd knew his PSA levels were high. So, last year, when he started having trouble going to the bathroom, he went to see his doctor right away. In late July 2023, after undergoing tests, he was diagnosed with prostate cancer. “I was suspecting it. But I was worried about what was going to happen to my family,” Todd said. He was also worried about his treatment. Thankfully, Todd had a great relationship with his doctors as well as with Roswell Park Comprehensive Cancer Center even before his diagnosis. Todd’s wife had been diagnosed with breast cancer in 2019 and received care at the cancer center.

Todd discussed his treatment options with his care team. “We went through several options about how to treat the cancer. They talked about surgery, radiation, chemotherapy, and some other things. I elected to have the operation.” Todd remembers being informed of clinical trials but preferring surgery. “I had friends of mine who had gone through it and they seemed to be doing fine,” he said. After discussing his options, Todd decided to have a prostatectomy, which is a procedure in which the surgeon removes the entire prostate gland plus some of the tissue around it.

Todd’s recovery has been slow. He experienced some side effects from his procedure, including urinary incontinence. It has been difficult to sleep through the night. As a result, he feels tired and fatigued more easily. “It seems like I have not gotten any rest since my diagnosis. I have to get up to go to the bathroom frequently and am not sleeping well
at night. And by the end of the week, I am exhausted.”

One of the barriers Todd faced during his care was related to his health insurance coverage. “They didn’t want to pay for the MRI,” he recalled. As a result, his surgery got delayed. “And then, when it came time for my scheduled surgery, I came down with COVID, and that pushed everything back over a month,” said Todd. “I am a patient guy and, you know, finally got my operation, and here we sit today.”

A former president of the Seneca Nation, Todd said there is an urgent need for patient education among members of his tribe. Increasing awareness of the signs and symptoms that individuals should pay attention to and seek medical care for is vital. Remembering a friend who passed away from cancer, Todd said, “Me and my buddies tried to tell him, you need to get treated, there is something wrong. He did not, and it developed into stage IV cancer. By the time he started treatment, it was too late.”

Additionally, Todd believes that more patients in his Nation and other Indigenous communities need to be made aware of clinical trials. “It should be more available to everybody.” Todd also highlighted the community-based services and educational programs at the Roswell Park Comprehensive Cancer Center. “They help people by making it easier for them to even go to treatment. Some people do not have rides. For someone to take them there or even to sit with them through the whole process would be helpful.” Todd emphasized the logistical problems experienced by many patients in his community and the vital role of patient navigators. “Help with making appointments, keeping appointments, and having someone walk you through what your next steps are can help, because many people just don’t know enough about it.”

As the former elected tribal president, the former tribal treasurer, and the former tribal council leader, Todd is fully aware of the challenges, including financial strains and economic barriers, experienced by his community. Addressing those barriers requires building relationships and collaborating with all partners in the community. “When I was part of the [the leadership of the] Nation, I was always trying to develop relationships with educational institutions, medical institutions, and health organizations because I knew those relationships would create opportunities for our younger people and help our nation. Those are some of the biggest issues, health and education. And when you take care of that, even the sky is not the limit.”

Todd highlighted the vital importance of funding the Indian Health Service (IHS), which cares for all the tribes, nationwide. “It is still discretionary funding through the federal government. That is one of the treaty related items. They need to take care of our health, education, and welfare and make that mandatory funding at the federal level. But also appropriate the dollars carefully,” said Todd. He further emphasized the value of relationships with the local institutions and partners. “The better relationship we have with people and their communities the better cooperation we will receive and that will help their members.”

Todd also highlighted the importance of funding medical research. “Because of all the research, prostate cancer has become one of the more treatable diseases,” he said. Todd attended a conference recently where he spoke about what is needed to make more progress against cancer. “There are three things you need. The first one is funding. If you are going to get serious about it, provide the funding. The second one is funding, money for the research programs, and the third one is funding. The research and all that stuff takes money.”