Summit Seeks to Create a Coalition for People Living With Chronic Health Issues

One in four Americans is currently living with at least one chronic health condition, such as heart disease, stroke, cancer, HIV, autoimmune conditions or diabetes -- an estimated 3.5 million people in Oregon and Washington alone.   Executive director BJ Cavnor's opening remarks at Wednesday's Chronic Health Advocacy Summit at the OHSU Center for Health & Healing emphasized the breadth of the issue -- and the fact that many people with chronic illnesses have similar needs, such as food and safe, consistent housing -- and expressed his hope to build a coalition of advocates, rather than organizations that work in silos and only advocate for their specific issue.   "Let's look at what we have in common and what can make our voices stronger to help build a coalition," Cavnor told the group of about 40, who introduced themselves during a break. Most represented advocacy groups connected to specific conditions or condition categories (such as mental illness), and some attendees represented pharmaceutical companies.    Cavnor said his nephews are five and six years old, and when he tries to describe his job to them -- "even adults' eyes glaze over when you tell them you work in public policy" -- he says his job is to tell stories and help others tell their stories.   "You cannot talk about the patient advocacy movement without talking about the AIDS movement," Cavnor, a self-described HIV survivor, said. "That's where the modern patient advocacy movement was created."    Cavnor noted that when the virus first appeared in 1981, it was affecting marginalized groups with little political capital: gay men, intravenous drug users, sex workers, poor people and people of color. They were able to come together and mobilize politically, resulting in legislation that fast-tracked approval for life-extending antiretroviral drugs.    "You had people that nobody cared about that were sick and dying, that were able to get these drugs taken out of storage," Cavnor said, ending the presentation with a photo of himself in 1997 in front of the AIDS memorial quilt, "when I had hair." Brian Kennedy, president of Woodberry Associates, an Iowa-based advocacy management firm specializing in healthcare and education policy, who also serves as director for the Alliance for Patient Access, and a former advisor to Gov. Mitt Romney, as well as Sens. Elizabeth Dole, John McCain, Lamarr Alexander and Bill Frist, discussed the basics of advocacy. Noting that the Arab Spring protests started with a handful of university students, Kennedy stressed that when working with legislators or members of Congress, it's critical not just to work with people from one's own district -- but those who sit on the relevant committees and are therefore in a position to take action on the issue.    Finding those who care for a personal reason is also critical, he said: "You want somebody who is a true believer, somebody who can relate." He closed by contrasting the case of William Dawes -- who rode through the Massachussetts countryside to warn townspeople of the impending British invasion -- with that of the more celebrated Paul Revere, who took to his horse the same night.   "The difference between William Dawes and Paul Revere is that Paul Revere had relationships with people in the towns he rode through," Kennedy said.   Rachel Hooper, director of public affairs for the western region of Pfizer, talked about ways to use social media to reach potential supporters, noting that users of Facebook and Twitter are more likely to vote, more likely to encourage others to vote and more likely to influence others' decision to vote than the general population. Social media success is usually a combination of consistency and variety, she said.    Following Hooper's presentation, Cavnor asked the audience who was missing from the afternoon discussion. Audience members said those who should be part of the coalition include representatives from organizations advocating for Parkinson's and Alzheimer's diseases, brain injury, autism and hepatitis C. Cavnor said he hoped the conversation would be the first of many.   "This is our birth. There wasn't any screaming, I didn't have any drugs," Cavnor said, laughing. "We are happy to be the middle of this."   1 in 4 was founded this spring as a program of Molly's Fund Fighting Lupus, and grew out of the Northwest Patient Education Network. It’s intended to serve as a collaborative to ensure consistent access to treatment and medication and help create good health policy.    Christen McCurdy can be reached at [email protected].