I believe we can change one small but key part about the Canadian health-care system by raising public awareness about the lack of organ donors. Using social media, we can encourage more organ donor registrations, shrink transplant waiting lists, reduce the cost of keeping patients on wait lists and make the health-care system more sustainable.
In Ontario, about 1,500 people are waiting anywhere from four months to several years for an organ transplant. Even though the health system makes major investments in patient care for those on the waiting list, one person on that list dies every three days. It’s hard to imagine a worse outcome.
For most Canadians, the sustainability of health care is measured in dollars and cents, and whether the costs of treatment are affordable. To those waiting for organ transplants, it means coping with great personal costs, both emotional and financial.
Those suffering from Idiopathic Pulmonary Fibrosis (IPF), my disease, face dual financial challenges. First, IPF removes the ability to earn an income. Second, those on the transplant waiting list must physically move near the transplant hospital.
There is a cost associated with each person on the wait list. To increase their ability to wait, there are frequent evaluations, changes in drug treatments, oxygen therapy adjustments, physiotherapy, and intensifying care. Eventually, as a patient deteriorates, hospitalization may be needed.
Social media offers us an unprecedented opportunity to shorten waiting lists for transplants. My own story shows how we can do it. The website alungstory.ca was developed by friends to raise money for my family to cope with the cost of relocation. When it was launched on Nov. 25, 2011, my IPF story was the only content. It received 100 views in fewer than 24 hours, and began to grow when the Ottawa media covered it. By Jan. 5, 2012, the site’s page-view count approached 30,000.
We had found a platform to increase organ donation registration awareness, and the main goal of alungstory.ca changed to a pledge of donor intent. In Ontario, organ donors register simply by going to beadonor.ca, so links were added to beadonor.ca, and similar agencies in other provinces and countries.
On Jan. 16, 2012, a video was posted to alungstory.ca. We asked people to reach out to Justin Bieber on Jan. 19 through Twitter, Facebook, and blogs asking him to help raise organ donation awareness. We requested a simple retweet containing the hashtag #BeAnOrganDonor to his 16.5 million Twitter followers.
The request spread virally on Twitter. #BeAnOrganDonor trended to #1 in Ottawa, and was in the top 10 topics in Toronto. Most important of all, that day 326 donors registered on beadonor.ca (compared to a daily average of 50).
On Jan. 21, not only did Justin Bieber retweet the message, but he had a Twitter conversation with me (@alungstory). The impact was huge! Traffic on alungstory.ca skyrocketed to more than 30,000 page views from 122 countries in 24 hours.
A similar social media request was made to The Ellen DeGeneres Show in February, 2012. My Feb. 16 interview, by Skype, on Ellen’s show led to 720 donor registrations at beadonor.ca that day.
The celebrity impact was wonderful. But even simply motivating people to talk about organ donation had a positive effect. At no cost, the need was made obvious, and the request was simple – register as a donor.
Raising awareness of the importance of organ donation, through social media, led to increased registrations. That offers the possibility of more transplants, which can shorten the waiting list for recipients. In the end, we can reduce both the financial and the human cost.
Hélène Campbell underwent a double lung transplant in Ottawa last spring.