For those who haven’t been directly impacted by the disease, Breast Cancer Awareness Month serves as a reminder for self-checks and an opportunity to participate in fundraisers. While survivors recognize the importance of these things, October is also about giving hope to patients with both early-stage and metastatic disease diagnoses.
That hope is generated in large measure by innovative organizations that are working to advance therapies, improve access to care, and foster better communication about the disease.
Hope can also emerge when survivors share our experiences.
Survivor stories matter
I was diagnosed with stage 3 triple negative breast cancer shortly after losing my mother from the disease. Candidly, it felt like a death sentence.
At 35, I was much younger than the typical patient, with an infant and a preschooler. Fortunately, a colleague introduced me to a 20-year survivor with a similar journey, and my mindset began to pivot.
Now in remission, it’s my turn to share, because I know what a difference it can make.
Last week, a fortune cookie reminded me about the fulfillment I gain from contributing to the good of others – specifically, the meaning my survivor experience brings to the work I do at Spire Communications. Every day, I come to the work we do with a sense of real purpose, because I know firsthand how important the work of our clients is to patients like me.
Here’s just a few examples.
Foundational research – ARPA-H
An all-new agency, the Advanced Research Projects Agency for Health (ARPA-H) is specifically charged with the kind of breakthrough science that could hold the key to advances in cellular therapies, precision surgical interventions, and more. These and other programs hold enormous potential to accelerate diagnosis and improve treatment for breast cancer and other diseases.
One of the drugs I took was brand new, so I’m a strong advocate for anything that could safely fast-track clinical trials.
In my role at Spire, I helped recruit and establish the incredible team of communicators who are helping ARPA-H amplify its programs and accomplishments. When I think about how important it is for that news to reach other scientists, the healthcare community, Congress, and patients, I know we’re doing work that matters.
Consumer advocacy – The Sequoia Project
The Sequoia Project fosters vital collaborations to inform health IT policy. One of its many initiatives elevates the voices of consumers – patients like me who know what’s it’s like to try to access their health information so they can advocate for their own care (#IYKYK).
The materials my team has designed for the Consumer Voices Workgroup help ensure that policies that govern health data sharing can fully factor in patient realities – demographics, logistics, privacy concerns, and everything else that affects our care and health.
Health IT policy – ONC
I’ve had the opportunity to support many communications for the Office of the National Coordinator for Health IT (ONC) over the years. And it’s easy to see myself as a beneficiary of just about every ONC rulemaking that the Spire team has supported.
Take data privacy and patient consent, for example. As any cancer patient can tell you, this is a big deal. While I’ve been fortunate, other survivors I know experienced stigma – and worse – at work and elsewhere because of their diagnosis.
Without the power of ONC regulatory drivers, we would all be at greater risk of exposure and health discrimination.
Health information exchange – Centralis, eHealth Exchange, and Kno2
Because my cancer was incredibly aggressive, I went from diagnosis to treatment in just two and a half weeks. To make that happen, all my providers needed to be able to communicate and share information in real time. I literally had no time to lose.
For me, information access also held the key to hope itself. On the day I had a critical scan, my surgeon was able to get the results and share some much-needed good news – within just three hours.
I think about this every time I get the chance to support clients who form the backbone of health information exchange in our nation, including Centralis Health, eHealth Exchange, and Kno2.
As regional and national health information networks, these organizations help make care coordination – and hope – a reality for thousands of patients every day.
The public sector as a means of good
As any of my clients and colleagues can tell you, I love what I do and take great joy in the design and communication challenges Spire tackles for all our clients.
I share a sense of deep purpose with the people I collaborate with at the agencies and organizations we support. Public policy, health research, and health IT are callings. Like me, many of my client colleagues chose their industry because of deep personal motivations.
As another October comes and goes, I celebrate the chance to share my story, my positive outlook for the future, and my love of design in service of our clients’ efforts to be a means of good for others.
