Many patient support associations, even big ones, don't have a large media relations function. However, even small organizations want to publicize topics related to their missions.
On a Friday night in late 2010, a member of one Inspire partner organization, a cancer survivor with a urostomy, posted a warning to fellow members. He stated he had a humiliating experience at Detroit Metro Airport in Detroit, MI, because the TSA agents' patdown resulted in the man's urostomy bag bursting and spilling all over him. At the urging of fellow members, the man agreed to go public with his story in hopes that travelers with medical conditions would not be treated the same.
The man indicated to fellow members that he'd write a letter to TSA and go public with his story, but it was clear he wasn't sure how to proceed.
Inspire, monitoring the online cancer support community, contacted the man after he indicated interest in going public with his story. That night, Inspire began organizing media coverage with MSNBC and the Detroit News, among other media outlets. Inspire also reached out to advocacy association officials to make them aware of the situation. By Saturday afternoon, MSBNC was interviewing the man and an association executive for a major story posted on its Web site Saturday night, about 24 hours after the man first posted his message to his online community.
The message delivered to news outlets by the association was prominent and unambiguous: No one living with an ostomy should be afraid of flying because they're afraid of being humiliated at the checkpoint. The organization was the only patient-focused association quoted in most of the news coverage.
"This was an unusual situation as we certainly don't look at discussions and journal postings on our Inspire communities as something to be published in the news media. Members' comfort as to what they post is paramount to us," noted Inspire CEO Brian Loew. "In this case, the man wanted to go public, but didn't have an immediate outlet, and we thought the situation was important enough to reach out to him and to our partner association immediately and offer our support."
Posted early Saturday night, the MSNBC.com story attracted more than one million page views and setting off weekend frenzy for other media outlets looking to catch up on the story. By Monday morning, the story was featured on segments on NBC, FOX, CNN, among other major media outlets worldwide. The man did 72 interviews in two days.
By early Monday afternoon, TSA director John Pistole personally called the man to apologize and invite him and association officials to come to Washington, DC, to meet with US federal officials to discuss ways that TSA, while ensuring security standards remain high, can more respectfully screen travelers with medical conditions such as urostomies and colostomies.
Several weeks after the story broke, the association wrote a letter to TSA with specific recommendations how to improve the screening process at airports. Nearly two-dozen patient support communities—and Inspire—signed on in support of the letter.
"This was an example of how Inspire can help our partner associations get their messages out through the online communities and beyond," Loew said.
With more than 80 partnerships with leading national patient advocacy organizations, Inspire (www.inspire.com) creates and manages secure online communities, organized by medical condition. Inspire communities are moderated, secure, and free to nonprofits. Inspire communities give nonprofits a turnkey social media platform for messaging, fundraising and more. Contact Danielle Leach, Inspire's Director of Partnerships, at email@example.com, to learn how your association can benefit from this free service.