Event Highlight: Duwamish River Bike Tour & Festival

Our Fearless Riders, © 2012 Jon Sharpe
Sixteen curious and cheerful bicyclists toured the South Park and Georgetown neighborhoods on Saturday morning under beautiful blue, sunny skies. The Duwamish River Bike Tour was a great success, and the ensuing Duwamish River Festival was festive indeed! There were wonderful dance troupes representing the diverse cultures who call the area home, free tamales and hot dogs for all, informative tables and exhibits, and fun activities like a bouncing structure and face-painting for the younger attendees. Mayor Mike McGinn even showed up and gave a short speech, saying that while as mayor he wasn't allowed to have a favorite neighborhood, he had to admit to having a special place in his heart for South Park. After spending the day getting to know the neighborhood, I could easily understand why.

CEEH researcher Wes Smith led the pre-festival bike tour, using a map that we created especially for the event (download the PDF here). Among the attendees were CEEH Community Advisory Board member Dennis Chao and CEEH Outreach Director Kelly Edwards. We stopped at various points of interest along the way to learn more about this unique part of Seattle where tribal, residential, and industrial history are so tightly intertwined. CEEH Outreach Manager, Marilyn Hair, and I staffed a table during the festival and enjoyed many great interactions with festival goers. We gave away lots of our new CEEH branded reusable grocery bags - and could have given away many more if we had them. Several people just walked up to the table and asked "so, what is ecogenetics?" - providing us with a great opening to discuss CEEH research and our core message that "ENVIRONMENT + GENES + CHOICES = HEALTH." For us outreach folks, it doesn't get much better than that! 

Visit our Flickr album to see photos from the day's festivities. 

Many thanks to the Duwamish River Cleanup Coalition for organizing this great day!

Media Experts on How to Pitch Public Health

© 2012, Jupiterimages
Frame the message. Be clear, effective, short, and timely. Give them someone to care about - it’s the emotional threads that bind humanity.

Five journalists and communication professionals formed a panel at the NWCPHP Summer Institute for Public Health Practice on August 8th. They represented public television and radio (Joanne Silberner, Patricia Murphy, and Lee Hochberg), the local newspaper (Carol Ostrom), and an online health guide (Michael McCarthy). The audience got to peek behind the closed door of the newsroom. Guess what: It's rushed and understaffed. Reporters are stressed and cranky. Don't let that throw you off, they said, but if you want their attention, get right to the point. Pitch your story fast. Tell them why it's important right now. Give them access to a source. They also want a good quote. If they talk to a researcher, they want one who's animated and funny, especially on the radio.

If you have a big complex story, like the Affordable Care Act, break it down into tiny pieces. If it's evolving, show the process – the process is the story. It's a tradition in journalism to tell both sides of the story, which the journalists admitted is a problem when you're arguing that something is true, like climate change.

Public health and the media have different goals. The goal in public health is to get our message out, and to change behavior. The goal in media is to tell the news, and to be read. We also have the same goal: To help solve the problems, to make things better.

If people who are trying to get a message across understood the media better, the media panelists told us, they might have more success. 

Event Highlight: A Rare Film Experience

©2012 Jupiterimages
The Seattle Science Festival is this month. It’s the first science festival here, in honor of the 50th anniversary of the Seattle World’s Fair. A few nights ago I attended one of many events happening at the Seattle Center and around town. This one was sponsored by NWABR, the Northwest Association for Biomedical Research. It was a screening and panel discussion of the documentary, Rare.

Rare tells the story of the patient advocacy group for Hermansky-Pudlak Syndrome (HPS), a one-in-a-million recessive genetic disease that causes albinism, blindness, prolonged bleeding, inflammatory bowel disease, pulmonary fibrosis, and early death.

HPS mother Donna Appell is the heart of the story. When her baby was diagnosed with HPS, she couldn’t just wait and hope someone would think of a treatment. Donna searched for others who had HPS, and when she found some, she made a cold call to the NIH and recruited the help of Dr. William Gahl, Clinical Director of the National Human Genome Research Institute (NHGRI).

While Donna started the HPS Network, the NHGRI research team took care of the HPS patients. Soon the team identified a potential treatment. Now patients who had HPS were needed for a clinical trial. Donna kept searching, even traveling to a corner of Puerto Rico where the incidence of HPS is 1 in 1600.

The clinical trial began, and the film shows participants coming to the NIH for blood draws, pulmonary function tests, and MRIs. The study needed more participants and the HPS Network kept recruiting.

Meanwhile, HPS Network membership was growing. The annual meeting is larger every year. Researchers provide updates, and patients and families share their stories and coping strategies: Who got a lung transplant? What make-up covers dark circles under the eyes? They held a festive dance and talent show. 2013 will be the 20th annual HPS Network meeting.

Back to the clinical trial. Several years in, an interim look at the data found that the study was too small ever to show whether the medication works for HPS. Everyone was disappointed when the trial ended. One participant was surprised when she finds out on camera that she was taking the placebo.

At the next annual meeting, a participant in the trial presents Dr. Gahl with a quilt made by the HPS community. The doctor fights back tears as his patient tells him, “It doesn’t matter that the treatment didn’t work and the trial ended. What matters is that you helped us and we did it. Thank you. You are my hero.”

After the film, NWABR facilitated a discussion by a panel of experts including Malia Fullerton from UW School of Medicine, Dept. of Bioethics and Humanities; Benjamin Wilfond, Director of the Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Hospital; Rare producer, Maren Grainer-Monsen, physician, Director of the Program of Bioethics and Film, Stanford University Center for Biomedical Ethics; and HPS patient Heather Kirkwood, Vice-President of the HPS Network who was featured in the documentary.

I already knew how clinical trials work: Participants have to meet the study criteria. Nobody knows whether they’re taking the treatment or the placebo. Clinical trials look for benefit to the whole treatment group, not for individual participants, the trial is for future patients and not likely to help participants.

But watching Rare brought these abstract truths to life. What a terrible disappointment for Donna Appell when her own daughter didn’t qualify for the study. We watched a participant monitor her symptoms, trying to guess whether she’s taking the treatment or the placebo. Researchers got to know the patients and worried about losing their objectivity. The clinical trial dragged on while precious time passed, patients got sicker, and some of them died. It was heartbreaking when, after all the effort to hold a clinical trial, it ended early. The film shows the toll of having a chronic disease, and the additional burden of having a rare disease.

The film will be shown in Seattle on KCTS, Channel 9, at 10pm on August 26th. There’s more information and a short film clip at www.rarefilm.org. Learn more about HPS at www.hpsnetwork.org/


Public Health Café on Seafood Safety held in October, 2012

The Community Outreach & Ethics Core (COEC) at the Center has been thinking about issues around seafood safety. On Tues, October 9th, we're offering a Public Health Cafe on the topic: Seafood: It's Healthy, But Is it Safe to Eat?

Here's why seafood safety is an issue: Eating seafood is extremely healthy. Fish and shellfish contain protein and healthy unsaturated fat. It also has B-vitamins, Vitamin D, and essential trace minerals. The American Heart Association recommends eating 2 fish meals each week. Yet fish contain persistent bioaccumulative toxics (PBTs) such as PCBs and PAHs that can cause cancer; hormone disrupting BPA; mercury that can cause neurological damage; and lead that affects the nervous system, reproductive fitness, and fetal and child growth and development.

Seafood is a hot topic in Washington right now. The Dept of Ecology (DOE) is working to revise the Fish Consumption Rate (FCR). The FCR defines the amount of fish and seafood consumed per day by residents of Washington. Presently, the DOE has 2 fish consumption rates: 6.5 grams per day or one fish fillet per month is the FCR used in water quality standards. 54 grams per day or 7 fish meals per month is the FCR used for cleanup regulations. Many Washington residents eat more seafood than that, and some populations are especially high fish consumers. Surveys show that an average adult in the Asian and Pacific Islander population in Washington eats 117 grams per day or 15 fish meals per month; an average adult member of the Suquamish Tribe eats 214 grams or one fish meal every day. One in twenty Suquamish tribal members eats 489 grams or two fish meals every day.

DOE believes the fish consumption rates should protect all people in WA. This means the present FCRs of 6.5 grams for water quality and 54 grams for cleanup standards are too low. Stricter emissions and cleanup standards in Washington will make seafood safer to eat. But increasing the FCR is contentious because setting stricter standards requires less wastewater discharge and more water treatment. This is expensive for business and industry. DOE must recommend an FCR and the WA State Legislature must approve it.

Our speakers at the Public Health Cafe are UW professor Dr. Elaine Faustman, toxicologist in the School of Public Health, Department of Environmental & Occupational Health Sciences, and; Alberto Rodriguez, Program Manager with the Duwamish River Cleanup Coalition. Elaine's research interests include risk assessment, developmental toxicology, and molecular mechanisms of metals and pesticides. Elaine was an expert consultant on the United Nations World Health Organization 2011 Report on the Risks and Benefits of Fish Consumption. Alberto works with community groups and government agencies to coordinate clean up of the Duwamish River, a Superfund site and the most polluted waterway in Puget Sound.

We hope you will join us:

What: Public Health Cafe. Seafood: It's Healthy, But is it Safe to Eat?
When: Tuesday, October 9th, 6:30 - 8:00 pm
Where: Chaco Canyon Cafe,  3770 SW Alaska ( 2 blocks east of 38th) in West Seattle
Who: Free and open to all ages. No science background required.