Why we’re moving from awareness to action

| Steve Bieler

“October is National Psoriasis Awareness Month” was the headline in the July/August 1997 issue of the Bulletin, forerunner of Psoriasis Advance. It was NPF’s “first full-scale national public awareness campaign” with messages about psoriasis and NPF set for newspapers, radio and TV.

The messages of the campaign, as quoted in the Bulletin:

  • Psoriasis is not contagious
  • It is a serious public health problem and not a joking matter
  • Psoriasis is a chronic skin disorder that can be quite severe for some people, even disabling
  • It is important for people with psoriasis to know about NPF

“It was a way to get media coverage, in addition to the small bits of coverage we got through pharmaceutical company grants or connections,” former NPF Executive Director Gail Zimmerman recalled. “Our membership strength gave us a way to leverage media coverage in certain locales. Also, people were contacting us wanting to do something for us and it seemed this was a good way to use their energies.”

Recognizing that, in the words of the 1997 Bulletin article, “it is always more persuasive for a reporter to receive a request from a reader or viewer,” NPF sent media kits to volunteers with pointers on what to do next. 

Kids helped, too

Spencer Erickson, 10, of Grand Island, Nebraska, was the grand prize winner of a contest NPF ran for kids to create posters about their disease. His winning entry, “Psoriasis and Me!” was distributed as part of Psoriasis Awareness Month. 

“It’s supposed to be me, but I did forget to draw my glasses,” Spencer told the Bulletin. “I was trying to say that it’s OK to wonder about psoriasis, but that it’s not contagious.”

The Bulletin requested that members put up Spencer’s poster “in your doctor’s office, grocery store, pharmacy or hair salon (after asking permission, of course).”

Initially, NPF had only enough money to print 3,000 copies of the poster. The pharmaceutical company Savage Labs provided the funding to print 15,000 posters. The Foundation was then able to give copies to members of the American Academy of Dermatology, the Dermatology Nurses’ Association, the American Osteopathic Association and NPF professional members. Five thousand copies were distributed to physicians by Savage Labs field reps. One poster ended up on the set of the NBC-TV series “ER.”

A celebrity steps forward

Next, NPF appealed to its membership to help us find “a rock star, actor, Olympic athlete or other celebrity” who could be our spokesperson, “whether they have psoriasis or not.”

Remarkably, somebody answered this call: country singer Joe Diffie. Diffie at that time was riding a string of Top 10 hits, including “Third Rock From the Sun” and “Bigger Than the Beatles.” 

Diffie didn’t have psoriasis, but his manager did. “One of my best friends has struggled with psoriasis for over 20 years, so I know how hard this disease can be on a person,” Diffie said in an NPF press release dated Oct. 7, 1997. “Physically, emotionally, and even financially, psoriasis can be devastating.” 

Diffie conducted 13 live and a number of taped interviews about psoriasis with TV and radio stations around the U.S. via satellite hook-up from his home in Nashville, Tennessee. Diffie was paired with Michael Zanolli, M.D., a Nashville dermatologist and twice a member of NPF’s Medical Board, “for a grueling round of reporters’ questions” throughout October.

Psoriasis Awareness Month eventually moved to August, because there were already so many awareness days in October and because “the August date gave us more options for themes around skin, swimming pools, sunbathing, sun helps psoriasis, etc.,” Zimmerman recalled. 

The golden age of psoriasis treatments?

During the very first Psoriasis Awareness Month campaign in 1997, Zimmerman said, “This is such an exciting time for the person with psoriasis. Until we find a cure for this devastating condition, we welcome every new treatment option. Recent advances have made more psoriasis treatments available than ever before.”

Zimmerman referred to 1997 as “an exciting time” because two new treatments – the oral systemic Soriatane and the topical Tazorac – had become available. But the primary treatment options of the late 1990s were not much advanced over the 1970s: coal tar, photo therapy, topicals and systemics such as methotrexate and cyclosporine. 

Twenty years later, our knowledge of psoriasis has exploded. We have more treatments – safer and more effective treatments – than we could have dreamed of in 1997. That’s why we’ve changed Psoriasis Awareness Month to Psoriasis Action Month. We believe today’s treatment options can help you achieve the treatment targets for clear or almost-clear skin that we published last year.

Follow along in August as we roll out interactive quizzes, Facebook Live interviews and resources you can use to take an active role in treating and managing your disease. Psoriasis Action Month is all about helping you set goals, take control, work with your health care provider to create the best possible treatment plan, and maybe even change your life!

(Editor's note: Collage of past Psoriasis Awareness Month logos assembled by Lindsay Boysen.)

Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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