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FlakeHQ Interviews:

Sheri Decker

Executive Liaison: International Relations & Special Projects
National Psoriasis Foundation

Interviewed by Ed Dewke  
in December, 2005

Sheri Decker was the first person I spoke to at the National Psoriasis Foundation in 1996.  Though I didn't know it at the time, she was already a seasoned senior staff member there.  Her affiliation with the Foundation began in 1974 as a volunteer and a decade later she joined the staff. In one role after another she's been a significant contributor to much of the output of the Foundation, especially in the areas of member services and publications. 

Three years ago her job focus shifted to the international arena.  Today, she works as a representative and officer of the International Federation of Psoriasis Associations, and we hear from her frequently in connection with World Psoriasis Day

Sheri published an article at FlakeHQ in 2002:  'Taking the Waters' at Soap Lake, a personal experience that continues to draw comment (e.g., What's Happening at Soap Lake?).  After conducting this interview with Sheri via email in December, 2005, I would love to read more personal essays from Sheri about her experiences abroad on behalf of the IFPA.  Everything she had to say in this interview points to an exciting future for psoriasis advocacy in the international arena. -Ed

*****

Ed:  Can you share the short history of the International Federation of Psoriasis Associations?

Sheri:  The International Federation of Psoriasis Associations (IFPA) was founded in 1971 by Gusta Karlsson, head of the Swedish Psoriasis Association. The original members were psoriasis associations from the Nordic countries and the U.K. Then more European countries and the U.S. became active. About five years ago, IFPA started to concentrate on becoming a truly international organization and today members are from 24 associations on six continents. The association’s purpose is to lessen the suffering of people with psoriasis and to improve methods of treatment and research for finding a cause and a cure.

IFPA is made up of the Council, which is one voting member from each member association, and the Coordinating Committee, which makes up the officers of the organization. Lars Ettarp from Sweden is IFPA president. Gail Zimmerman, U.S., serves as vice president.  Jan Monsbakken from Norway is treasurer. Dr. Hoseah Waweru, a dermatologist in Kenya, is member at large, and I am secretary. IFPA holds an official Council meeting every three years. The last official meeting was held in Cape Town, South Africa; the next will be held in Buenos Aires, Argentina, in 2007.  

 

Ed:  What are the potential benefits of a global psoriasis awareness initiative?

Sheri:  In the beginning, IFPA coordinated the communication between the various psoriasis associations around the world. The premise was that associations could benefit from sharing experiences, and learn from one another on how to build successful organizations serving people with psoriasis and psoriatic arthritis. Some organizations were already well established, like the U.S. and Sweden, and were able to help other organizations with logistics. That’s still a big part of the benefit of IFPA — sharing information and helping to build nonprofit associations. For example, I’ve been told by several foreign associations they would not exist if it weren’t for the National Psoriasis Foundation’s former newsletters the Bulletin or the present day magazine Psoriasis Advance. Their newsletters rely heavily on reprint permission to be able to provide information to their members.

This past year, IFPA held a two-day meeting in Amsterdam with approximately 25 representatives from 25 national psoriasis associations representing five continents. One afternoon presentation centered on the basics of good lobbying techniques. An IFPA member from Norway gave an overview of lobbying and advocacy issues. I presented a case study highlighting National Psoriasis Foundation’s Capitol Hill Day and the new e-advocacy tool found on our Web site. Each of the 25 countries was also asked to share their lobbying know-how. This information was then packaged and distributed to even more associations. That’s an example of how sharing information can increase an association's capabilities. It is also a vivid exploration of the world’s disparity. One country spoke about protesting for better care in front of government buildings; another expressed how they would be arrested for doing the same.   

Over the last several years, IFPA has been working to develop even greater recognition through more complex undertakings. IFPA is now responsible for World Psoriasis Day, which is a major step in bringing global awareness to psoriasis and psoriatic arthritis. World Psoriasis Day involves as many psoriasis patient associations and individuals as possible to give a "wake-up" call to policy makers, health care professionals, industry and the general public about the misery and social exclusion of psoriasis patients. We ask for their support in improving patients’ quality of life and access to care worldwide.

This year IFPA’s Coordinating Committee (its governing body) asked people to sign a petition on the World Psoriasis Day Web site that will be used to gain the World Health Organization’s (WHO) recognition that psoriasis is a serious disease. This is an arduous task because the WHO doesn’t add diseases to its list of serious diseases easily. In fact, only one disease has been added in the last three years and you can imagine the number of diseases that ask for this acknowledgment.

The point is that the omission of psoriasis from WHO’s list of recognized diseases infers that they might currently be unaware of the devastation psoriasis causes. By educating the WHO on the true extent and impact that psoriasis has on an individual may help to get them to provide proper acknowledgement of the disease. I would really appreciate your help in making that happen and continue to ask people to go to www.worldpsoriasisday.com and sign the petition.   

 

Ed:  How is IFPA funded?  What does its funding accomplish?

Sheri:  IFPA is funded by its member associations. Each association pays yearly dues based on the number of members it has. For example, associations with 100 or less members pay $25. Associations with memberships between 100 and 40,000 pay according to a set scale.  Associations with more than 40,000 members pay a maximum fee of $2,500.

IFPA has a very small budget because most associations are relatively small. The National Psoriasis Foundation pays the most. The budget typically pays a portion of representatives’ travel to attend IFPA meetings. Everyone working on IFPA’s behalf is a volunteer and there are no paid staff members. For example, I voluntarily write and electronically distribute the IFPA newsletter. The Psoriasis Foundation also voluntarily provides for the IFPA web site (www.ifpa-pso.org).  

The rest of the IFPA budget comes from corporate grants. This money is earmarked for specific projects such as World Psoriasis Day (WPD) and the 1st World Psoriasis and Psoriatic Arthritis Conference 2006. World Psoriasis Day had four sponsors in 2005, founding sponsor Serono, along with Wyeth, Biogen Idec and Schering-Plough. The World Conference, which will be held in Stockholm, Sweden, in 2006, has nine corporate sponsors, Abbott, Amgen, Astellas, Connetics, Genentech, LEO, Schering-Plough, Serono and Wyeth. This conference will focus on bringing dermatologists and rheumatologists from around the world together to identify future directions for research and identify critical needs in promoting better access to care.  

Sweden also receives some federal money allocated specifically to develop psoriasis associations where none exist. For instance, the chairman of the Swedish Psoriasis Association and IFPA’s president and the executive director of the Swedish Psoriasis Association have been working to form associations in Africa. They were actively involved in the development of the Psoriasis Association of Kenya, and continue to work with Botswana and Tanzania. I believe Norway is able to access the same kind of federal support and is gearing up to work in Africa as well. 

The National Psoriasis Foundation helps associations form by sharing its policies, educational information, “how to” manuals, providing guidance and encouragement. A few years back, I participated in a two-day workshop in Australia offering information about ways to build an association. Representatives from Australia, China, Kenya, New Zealand, South Africa and Singapore were in attendance and spoke about their most common barriers to progress in helping psoriasis patients. The biggest hurdles were lack of funding and manpower, language barriers and illiteracy.

Over the last several years, we’ve also lent a hand to form associations in Indonesia, Argentina and India, and provided support to Brazil, Mongolia, Nigeria, Panama, and the Philippines.  

 

Ed:  How can interested individuals become involved in IFPA?  Or can that only happen locally, through involvement in a Psoriasis Association?

Sheri:  IFPA is an organization for nonprofit psoriasis associations, not individual members, so the people involved are association leaders. The representatives that attend IFPA meetings are generally trustees or directors of associations.

 

Ed:  You’ve had the assignment for how long now?  What have you found most rewarding?  Most surprising?

Sheri:  I’ve been working with the Psoriasis Foundation’s international agenda for three years. The most rewarding aspect is the people I meet — dedicated people from all over the world working on behalf of people living with psoriasis and psoriatic arthritis. Our associations function under different healthcare systems, budgets, organizational structures, governments, etc., but when it comes right down to it, we share exactly the same agendas — working for greater awareness of the disease, access to care, improved treatment and a cure. We may do it in different ways, but that’s what we aim for.  

The most surprising aspect has been how difficult it is for individuals in some countries to access treatment. There are countries where no ultraviolet light equipment exists, access to biologics or even the basic psoriasis medications is nil and maybe a 50-mile walk is required to see a dermatologist. 

And awareness about psoriasis has also been an eye opener. I served on the first World Psoriasis Day Steering Committee and we had a general public survey conducted by a London-based market research company to find out some of the perceptions about psoriasis. Five thousand people were interviewed in five countries, UK, Spain, France, Germany and Italy, and here is some of what we learned.

  • nearly 50 percent of the European respondents would not kiss or hug someone with psoriasis;

  • 45 percent would not share a swimming pool with people who had psoriasis; and

  • 42 percent in Europe would not eat food prepared by someone with psoriasis.

I don’t care where someone lives, we all have a lot work to do to gain a far greater awareness of psoriasis. I’ve been involved in steering the development of two World Psoriasis Days and have observed the true meaning of “enthusiasm is contagious.” The amount of media, connection to the medical community and lobbying within certain countries is growing significantly. It has been extremely rewarding to be a part of World Psoriasis Day.      

 

Ed:  You've already touched on this, but please say more about how life as a flaker in the U.S. compares to other  countries.  How about life for psoriatics in those countries with socialized medicine?

Sheri:  We have a lot of work to do to make things better for people who live with psoriasis in the U.S., but compared to some, we’ve got it pretty good. As I mentioned above the lack of ultraviolet light equipment and access to treatments is a huge problem in some countries. Systemic treatments are out of the question because they are simply not available, poverty makes paying for treatment impossible, and cultural practices and illiteracy often dictate no access to appropriate treatment. In some countries, psoriasis patients still face ostracism by family or village members because of the lack of knowledge about psoriasis. In-patient treatment is often required because rural people don’t have access to a medical facility in their locale, lack transportation and have to walk miles for treatment or don’t have the basic sanitation to treat themselves, such as no access to water to wash treatments off their skin.

Thirty-five countries in Africa have less than 5 dermatologists and most people will never see a dermatologist in their lives. One African physician reminded me, “When you talk about Psoriasis: Gene to Clinic [a popular European dermatology meeting focused on psoriasis research], there are many in Africa who don’t have a clinic at all.” 

 

Ed:  Tell us a little about your psoriasis.  How long have you been afflicted?  What treatments have you tried?  What works for you?

Sheri:  I first got psoriasis when I was 28 years old. I was married with two little babies 18 months apart and thought life was all good. I was so baffled when a psoriasis lesion appeared on my knee. I had no clue what psoriasis was. No family history and had never seen it on someone else. I was horror-struck when that little patch bloomed into these huge ruby-red lesions all over my body. Even more horrified when I learned there was no cure! Much later, when I finally caught on to the true meaning of psoriasis, I considered myself very lucky to have made it 28 years before facing the battle.   

I availed myself of all the topical and ultraviolet light treatments and a few systemics. Nothing ever worked, or if it did, only for a few short weeks. In fact, treatments always seemed to make matters worse. It looked like the more I medicated, the more “it” fought back. After many years, I decided psoriasis was too depressing to look at and you had to look at it to treat it. So I pulled on a pair of pants, a long-sleeved turtle neck, got rid of any mirror described as “full length” and never looked down. Pretty soon I was feeling much happier and my psoriasis seemed more content as well.

Since then, I treat psoriasis with a great deal of gentleness. It’s like we have this agreement: “Don’t tick me off, I won’t tick you off!” It still scares me when it goes ballistic trying to get my attention. I soothe it with a little oil and a gentle shot of sunshine. Nothing too dramatic, don’t want to egg it on and make it think it rules. Sometimes I look at it as a spoiled brat throwing a tantrum to get to go to Mexico on vacation. “Okay, okay,” and I gladly grab my bathing suit and camouflage makeup.  

This past year, I finally bought “it” a 17 by 28 foot above-ground swimming pool.  I’m pretty jazzed about the pool, too. We spend a great deal of time under water and enjoy not having to play any games with the public. Pretty scientific stuff, huh?    

 

Ed:  Tell us about your history with the National Psoriasis Foundation.  When did you become affiliated?  —Start work there?  —Various jobs/assignments?  What’s next for Sheri Decker?

Sheri:  I first found the National Psoriasis Foundation in 1972, and was a volunteer on the first public education committee. Was elected to the Board of Trustees in 1974 and spent the next ten years helping to guide the organization. By 1984, I completed a master’s degree and had some significant program development experience under my belt. The foundation was at a point where they needed somebody with that kind of background and the rest is history, as they say. I’ve worked here now for 21 years. 

For the most part, I developed the educational components of the foundation’s program — patient education materials, newsletter, support groups, annual conferences, exhibits, professional membership program, etc. That adds up to 33 years affiliated with the foundation.

Right now I’m very involved in helping to raise money and plan the 1st World Psoriasis and Psoriatic Arthritis Conference 2006. Once that has been completed, you can find me and you-know-who in the swimming pool fulltime.   

 

Ed:  Sheri, thank you for your time.  And I mean both the time you've spent addressing our questions, but more importantly, the 33 years you have contributed to making all flakers' lives a little easier.  Speaking as one of the 6 million of us who flake in the U.S., I am delighted that you are representing us internationally. 

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