This week, the leaders of the National Institutes of Health and the Centers for Disease Control and Prevention are joining leading doctors, researchers, lawmakers, and area residents at a two-day symposium on valley fever in Bakersfield. Experts and patients say the meeting is an opportunity to shine a light on the chronically overlooked and misdiagnosed fungal disease.
How can community members harness the momentum created by this meeting? And what lessons can the valley fever community learn from successful, grassroots patient movements? Earlier this year, FM 89 reporter Rebecca Plevin posed those questions to Barron Lerner, a New York University Langone School of Medicine faculty member, and author of ‘The Breast Cancer Wars: Hope, Fear and the Pursuit of a Cure in Twentieth-Century America.’ Below are some highlights of their conversation.
On what makes a patient advocacy group successful:
“What successful groups have done is what I would call a grassroots sort of campaign. They try to get as many people interested in the issue as possible. A lot of the people have either had the disease, or know someone who’s had the disease, and they start doing a lot of different activities. They try to get on TV shows and radio shows, they do lobbying, they go to their local legislatures and try to get attention paid by legislators, and funding, for the disease, they go to local public health officials and say, ‘this is a disease that’s been overlooked or neglected and you need to focus your energies not only on other diseases, but this one as well.’”
On the disease’s seemingly benign name:
“Another challenge for something like valley fever, ironically, is the name. I think if people hear ‘fever,’ they may say, ‘oh, all right, some people get a fever.’ They hear ‘valley’ - they don’t live near a valley, ‘why should I be concerned about this?’ The reality is that’s where the salesmanship needs to come in."
“You should at least acknowledge, perhaps in publicity efforts, why is it called valley fever. It doesn’t only occur in valleys, the fever can be very severe. Even though the name may sound not as dire as something like cancer, people do die from it. More people die from this fever than the fever caused by West Nile. Those sorts of comparisons I think could be very helpful in educating people to why a disease that has a name that might sound rather benign, nevertheless can be very serious.”
On the need for passionate advocates:
“Another things that’s been very helpful for these diseases is to get people involved who are very outgoing and won’t take no for an answer.”
“The people who start these campaigns and movements have to be so committed to it that they really devote an enormous amount of energy to it. Because otherwise, it gets subsumed by other worthy causes. I think we would love to live in a world where the disease that causes the most harm would get the most funding, and the diseases that weren’t so important would get less funding, but the fact of the matter is, the reality is the groups that scream loudest and have the best stories often get the most resources.”