Several years ago, while dining with Matthew Zachary, the founder and CEO of Stupid Cancer, the world’s largest nonprofit for young adult cancer survivors, he offered some sage advice to an eager newbie wanting to make a difference.1
When the newbie asked, “What words of advice would you have for someone who wanted to start a nonprofit?”
“Don’t,” answered Zachary. His point was that the number of cancer nonprofits has exploded, out of good intentions, but often resulting in duplication of resources and loss of valuable dollars when less experienced, smaller nonprofits invest startup funds to launch and later learn they aren’t sustainable.
Perhaps this dinner chat contributed to him more fully exploring this topic in a 2013 Huffington Post article, The Anti-Nonprofit: Risk, Chance, Timing, Innovation and No Regrets.2
I’m going to steal Zackary’s advice and apply it to healthcare organizations seeking to develop internal survivorship resources. If it doesn’t already exist in your organization, perhaps look to the nonprofit sector to see if they haven’t already created a solution that is working. Why? For, oh, so many reasons.
- If they’re successful, they’ve spent a lot of time and resources getting to know their audience and their needs.
- They or someone they love is or has been touched by cancer so they have personal experience and incredible passion.
- Other survivors relate to them and usually trust them faster (see #2 above).
- You most likely don’t have the time, money, or other resources to start from scratch.
- It will take you years to even begin to catch up to what they already know. In those years, thousands of your patients will be left waiting for resources they need now.
The first patient focused survivorship conference I attended was at MD Anderson in 2011. It’s no surprise that Matthew Zachary was a main part of their panel on what perhaps might be described as more grass roots cancer nonprofits—those created typically by someone touched by cancer who has a vision for something that could be done better or fill a gap where absolutely no solutions exist.
During a Q&A session, an oncology nurse who was in the audience stood up, tears welling up in her eyes, and offered words of gratitude to the panelists. She expressed how often young adults with cancer crossed her path and how, until that moment, she had very little to offer them as far as survivorship resources specific to their age group. She felt great relief knowing she could now share Stupid Cancer and other resources with them that she’d not known about prior to the panel.
Each year, I travel to quite a few survivorship conferences and interact with hundreds of healthcare professionals. I’m still stunned when I ask if they know about Stupid Cancer, Young Survival Coalition, Cervivor, National Coalition for Cancer Survivorship, Cancer Support Community, and more.3–6
Does your patient or their caregiver need to know about peer support like Imerman Angels, fertility options like MyOncofertility, insurance and workplace rights like Cancer and Careers, financial support like The Samfund, social media communities like #BCSM, local support groups, national events, clinical trials finders like Cure Forward, sponsored camps for children with parents who have cancer like Camp Kesem, wigs, and more?7–13
Even the American Cancer Society, which has a very high profile in most communities, is a deep resource that is often misunderstood and not fully recognized for the incredible depth of practical, important day to day needs such as transportation, travel assistance, and programs such as “Look Good, Feel Better.” Many people think they only raise money for research. While they play that important role, they are also a huge contributor to legislation related to cancer through ACSCAN.14, 15
As an oncology professional, no one expects you to have all the answers. No one expects every healthcare organization to develop support and survivorship programs and communities to meet the needs of such an incredibly broad population. You don’t necessarily need a comprehensive list of all the nonprofits providing valuable resources, information, and support. Just one is a great starting place as once inside that community, the survivors and caregivers who come together there typically share others.
Sharing nonprofit resources can empower your patients and caregivers while reducing some of the burden healthcare providers can feel in trying to provide comprehensive solutions to those they care for. Starting from nothing is a waste of valuable time, energy, and resources when solutions exist elsewhere.
What is one critical nonprofit you recommend to your cancer patients and caregivers that help them while also helping you feel like you’ve provided them with resources they need?
- Zachery M. The Anti-Nonprofit: Risk, Chance, Timing, Innovation and No Regrets. Huffington Post. 2013 Apr 12.