A diagnosis of cancer is hard to deal with for anyone. Questions arise about the future, both health-related and practical, and understanding how to manage these can be a huge challenge. This is particularly true for men diagnosed with prostate cancer who, combined with the usual concerns, are challenged with issues regarding their sexual health and complicated treatment choices.
ZERO – The End of Prostate Cancer supports men with prostate cancer through patient support, early detection, raising awareness, and advocacy and research, with the mission to end prostate cancer.
In November 2016, the group launched ZERO360, a case management program, to help support people with prostate cancer and their families. Change Together spoke to Drew Saelens, Vice President of Government Relations and Patient Advocacy at ZERO, about the initiative.
Identifying a need
ZERO360 was created as a result of ZERO’s own survey research carried out two years ago. One of the questions in the survey asked what needs were not being addressed for prostate cancer patients – a question that returned a lot of suggestions for an ‘extra team member’ to help navigate the issues that come with a cancer diagnosis.
“From feedback given by our own community, many men don’t feel like they have enough support when it comes to managing the practical issues a prostate cancer diagnosis causes,” says Saelens.
ZERO360 helps patients by improving their health literacy, educating and supporting them to navigate the health system and the obstacles they might face. Armed with a better understanding of issues such as financial costs of treatments and possible sources of funding, those men with prostate cancer can feel more secure in their lives and access the treatment they need.
ZERO is currently running a survey evaluating the impact of its program, seeking to capture a numerical score for how distressed a patient feels at enrollment versus how they feel after their case is closed. The hope being that this information will prove the success of the program and can be used to gain support from future partners.
Anecdotal evidence is already showing the impact of the program. Saelens shares the story of a 56-year-old man diagnosed with stage 4 prostate cancer, who at the same time as being diagnosed lost his job. He reached out to ZERO360 and, with the support of a case manager, was able to put his affairs in order, enrolling for Medicaid and Social Security Disability Income. This helped with the costs of not only his cancer treatment, but also other comorbidities as well.
“What’s important is that the information he was given was simple,” explains Saelens. “Getting all of that help meant he could move forward with his treatment and his life.”
Reaching the community
ZERO makes good use of traditional digital and social media marketing to raise awareness of its activities; however, what really makes a difference are its Champions working in the community. The focus is now on accessing more disadvantaged communities that can benefit the most from the group’s programs. By working with established partners, ZERO can reach people that traditional methods don’t get to.
“If I were to say anything to a newly diagnosed prostate cancer patient, it would be to slow down,” advises Saelens. “As someone who has never been diagnosed, that is easy for me to say, but it is important that they search for the information they need because it does exist.”
In addition, though, it is the responsibility of the patient advocacy organization community to make that information available to patients, adds Saelens.