News Headline: Attend a Support Group…from Home
Outlet Full Name: WebMD
Author: Heather Millar
Each week, I get several notices about patient education programs, support groups, seminars and retreats. They all sound great, and I always have intention to participate. But alas, I make it to about one in ten of these events. Weekdays are tough. I’ve got to herd my kid through homework, piano practice, bath and dinner. Weekends are little better. And aside from busy schedules, most days I’m just too tired to muster the energy for a meeting or seminar. And I’m not even in active treatment!
But what I didn’t have to muster energy to get to a support group? What if I could attend a support group, get the skinny on the latest research, connect with other patients—all from the comfort of my living room?
That’s the idea behind “The Lung Cancer Living Room, a live-streaming monthly support group organized by the Addario Lung Cancer Foundation (ALCF).
It’s difficult for any patient to make it to a support group meeting, but it’s even more difficult for lung cancer patients. First of all, there aren’t that many lung cancer support groups. Then there’s the fact that many patients with lung cancer have a difficult time getting places because their disease has damaged their lung function. Here I have a hard time getting to a support group because of scheduling and fatigue, but what if I had trouble just walking from the car to the support group venue?
And the venues themselves don’t do much to encourage the effort – many support groups are held in less-than-cozy hospital settings. That’s why ALCF turned half of their headquarters in San Carlos, California into an inviting living room space for support group meetings. The first meetings were traditional, in-person meetings, the third Tuesday of every month, with wine, water and appetizers.
Then, in the summer of 2012, they decided that they wanted to reach even more people. They started streaming these meetings on the Internet. In just a year and a half, 10,000 people have watched the events live, and more than 443,000 people from 142 countries have accessed the archive on the ALCF website.
“Lung cancer is, sadly, an afterthought. And the reality is, many lung cancer patients don’t live long enough to benefit from support groups,” says Danielle Hicks, who manages the living room events. “But I’m willing to bet that patients who access the Lung Cancer Living Room events and get access to this information are living longer. Anecdotally, I know they are. If we can help people get access to quality first-line treatment, it makes all the difference in the world.”
Patients who watch the events live can submit questions to the world-class experts and to other patients, Hicks says. The last 30 to 45 minutes of each 2-hour meeting are devoted to Q&A. They’ve fielded questions from as far afield as Ghana and China.
The archives cover a wide range of topics: participating in clinical trials, new targeted therapies for lung cancer, cutting edge diagnostics, the role of patients in getting the best care.
If I had lung cancer, I would clear my calendar on the third Tuesday of every month. Have you watched The Lung Cancer Living Room? Did it help you? Let us know your experience here.