When experts and policymakers from the National Institutes of Health and the Centers for Disease Control and Prevention landed in Bakersfield this week, they were met by many smart, well-meaning individuals hoping for better treatments for valley fever and, ultimately, for a cure.
But they were not met by a movement.
Despite its severe toll in California’s Central Valley and other hot spots, valley fever has remained overlooked and underfunded for decades. The absence of a strong patient advocacy movement has contributed to the chronic neglect, experts say.
“We’d like to live in a world where the diseases that cause the most harm would get the most funding,” said Dr. Barron Lerner, a professor of medicine at New York University and author of “The Breast Cancer Wars: Hope, Fear and the Pursuit of a Cure in Twentieth-Century America.” “But the fact of the matter is, the groups that scream the loudest and have the best stories often get the most resources.”
Strong patient advocacy raised the profile of breast cancer, which for years was referred to in hushed voices. Those who suffer from AIDS, once heavily stigmatized, now count upon celebrity supporters for help, along with ordinary citizens, who embark on AIDS rides and walks across the country. Sophisticated grassroots movements helped create widespread popular support and good will, accompanied by open spigots when it came to research funding.
The Reporting on Health Collaborative interviewed nonprofit patient groups large and small to understand their successes and failures in creating a groundswell. Their insights could provide a blueprint of sorts for valley fever patients and their families as they look for ways to build momentum and to take advantage of the newfound attention to the disease since the collaborative launched its Just One Breath series a year ago.
Their tip sheet for a successful patient movement:• Create opportunities for patients to share their experiences with a disease.
• Find a high-profile champion who shines light on the disease.
• Tap into emotions to generate action.
A small group of volunteers has formed to lobby for attention to valley fever. Observers and participants say they must hit certain milestones before they can hope to have impact.
CREATING A SPACE TO SHARE
Manny Hernandez first grasped the power of community as he struggled to cope with his Type 1 diabetes.
He participated in a group of insulin pump users in 2006 and “in the course of that first meeting, in a matter of an hour, I learned more than I’d learned on my own in a full year of wearing an insulin pump,” he said.
Out of that experience, Hernandez, a technology expert and author of “Ning for Dummies,” and his wife, Andreina Davila, co-founded the nonprofit Diabetes Hands Foundation in 2008. It features three online programs intended to connect, engage and empower people with diabetes, including social networks in English and Spanish, a resource for diabetes advocates, and a program that allows users to experience and share the impact of exercise in diabetes management.
The foundation is “driven by the belief that nobody with diabetes should ever be alone,” Hernandez said. Today, the foundation’s two social networks – TuDiabetes and EsTuDiabetes – have close to 54,000 registered members combined. Its online programs attract about 3.5million unique visitors each year, he said.
Sharon Filip has similar aims for her online patient community, Valley Fever Survivor, which she and her son, David, started in 2002 after she was diagnosed with valley fever. Their website includes an online message board with more than 10,000 posts and about 1,300 users. Valley Fever Survivor also has more than 1,100 friends on Facebook, and about 200 people have joined a private support group on Facebook, Filip said.
Filip says her online sites have opened up an important and ongoing conversation.
“People were able to open up and say all the things that have been bothering them,” she said.
But the challenge for a fledgling online community such as Valley Fever Survivor is turning conversation into action, Lerner said.
“You don’t only want them to sit and talk about it behind their desks,” Lerner said. “You want them to say, ‘OK, we’re going to schedule a rally at the state Capitol building, and all you people that have been really good bloggers, it’s time to get up from behind your computer and come to Sacramento to protest, and let people know that you care about the disease.’”
Members of the Diabetes Hands Foundation’s TuDiabetes social network did just that.
In 2011, Donna Hill, who is now the organization’s volunteer board chairman, posted a message that urged members to email a pharmaceutical company that had bought a diabetes therapy but had not begun human testing, a key step for making it commercially available. Encouraging people to raise their voices, she wrote: “It could mean a cure and, at the very least, it would vastly improve the way we manage our diabetes.”
“Interestingly enough, not long afterwards, it went to human trial,” Hill said. “They are not going to say, ‘We received letters, and this is why we’re doing it,’ but I want to believe this influenced it.”
FINDING A CHAMPION
Ryan White contracted HIV through a blood transfusion and was diagnosed at age 13. He was barred from attending school because of his diagnosis. And, for the next five years, he and his mother gave speeches, met with policymakers and reminded audiences that HIV caused a disease that could affect anyone. With a maturity beyond his years, White handled the crowds of TV cameras and the taunts of protesters with an easy smile and a sense of optimism. White died in 1990 at age 18. Later that year, Congress passed the Ryan White Comprehensive AIDS Resources Emergency Act.
“For people living with AIDS, we had to destigmatize the gay aspect; we had to make it just a disease,” said Bradley Land, a member of the Los Angeles County Commission on HIV and a longtime advocate for HIV awareness and funding. “It wasn’t until (Ryan White) couldn’t get into school that it really became an issue.”
Children such as White often serve as the compelling, public face of a health campaign. The women of Mothers Against Drunk Driving did an exceptional job of sharing stories of children’s lives cut short to build support for their cause, Lerner said.
These parents were effective because they “took the tragedies in which their children were killed and used them to mobilize support,” said Lerner, who chronicles similar case studies in his book on the campaign to raise awareness for breast cancer. “The stories were what made it so compelling.”
Emily Gorospe, an 8-year-old Delano girl who suffers from valley fever, was featured in the Just One Breath series and then shared her experiences with the disease at an October 2012 public meeting in Bakersfield hosted by then-state Sen. Michael Rubio. She was also featured in an NPR report and on the CDC’s valley fever web page, and her image was included in a BBC article about the disease.
Her mother, Valerie Gorospe, said Emily seems like an unofficial spokesperson for the disease, and could envision her daughter taking on that role in a larger capacity. But she would have to fit those duties in between her already busy schedule.
“She has dance on Wednesday, she has school, she’s got soccer games every Saturday,” Valerie Gorospe said.
Patient movements gain a big boost from celebrity champions willing to speak publicly about their diagnosis. Consider actor Michael J. Fox, who has raised awareness of Parkinson’s disease, or cyclist Lance Armstrong, who created Livestrong, a movement around cancer that seems to have weathered the athlete’s doping scandal.
That leaves advocates for lesser-known diseases waiting for their own celebrity champions.
“I walk around and say, ‘I hope someone who’s in a place of power has a close family member who comes down with Chagas disease, because then maybe it will get some attention,” said Sheba Meymandi, who started the country’s first Center of Excellence for the Diagnosis and Treatment of Chagas Disease.
An estimated 8million people in Mexico, Central America and South America are infected with the parasite that can cause inflammation around the eyes and the liver and can be life-threatening. But in the United States, it’s estimated that just 300,000 people are infected with the parasite.
There have been some high-profile cases of valley fever among Major League Baseball players — including retired player Conor Jackson, who became sick while playing for the Arizona Diamondbacks, and Ike Davis of the New York Mets. But valley fever advocates are doubtful that infected athletes will take the disease on as a cause because their career can rise or fall even on the rumor of an injury.
PUTTING EMOTIONS INTO MOTION
Kelly Trout’s daughter, Caroline, was diagnosed with a very rare disease called WAGR syndrome when she was 3 months old. For years, she fought a lonely battle to gain the interest of clinicians and researchers.
The disorder is caused by a missing group of genes on Chromosome11. Symptoms can include genital abnormalities, a type of kidney cancer and developmental delays.
“Caroline was 17 years old before we ever met someone else who had it – we had never even met a physician who had seen another patient with it,” Trout said.
But as Trout did meet people, she found that they, too, were passionate about raising funds to research the disease. Together, they founded the International WAGR Syndrome Association.
The scientific community had paid scant attention to the syndrome. So the association drafted and circulated a simple survey of the symptoms and features of the disease. A physician used the survey for an article published in 2005 in the journal Pediatrics.
“Our hope with the survey and with the article was just to attempt to educate physicians so they could care for people with the disorder a little better,” Trout said.
But the effect of the survey far exceeded those hopes when a researcher at the National Institutes of Health read the journal article, contacted the association and started the first-ever comprehensive study of the disorder.
“That came about because we got together and began to do this ourselves,” Trout said.
“It doesn’t matter that there aren’t a whole lot of us,” she said. “It doesn’t matter that we don’t have money. What matters is that we have a passion. We are going to make something happen. We are going to move forward and create hope for our loved ones, and this is a very effective way to do it.”
Valley fever advocates hope that all the recent attention will prompt the NIH to pay attention. With the head of the agency, Dr. Francis Collins, spending two days in Bakersfield starting on Monday, they have the opportunity to make their case to someone who oversees more than $30billion in health research spending annually.