10th anniversary of the resolution on psoriasis – Germany

“Before the resolution, many people did not fully understand that psoriasis is a serious complex systemic disease”

03 May 2024

By IFPA

The 2014 WHA resolution on psoriasis is a milestone for the psoriatic disease community. Under IFPA’s leadership, many people worked hard to put psoriasis on the agenda of the World Health Organization. With the resolution as a new tool in their advocacy toolbox, many national psoriatic disease organizations reached out to their policymakers to demand change. Anette Meyer from the German Psoriasis Association (Deutscher Psoriasis Bund – DPB) describes the successes and the disappointments in the implementation of the resolution in Germany.

What was it like growing up with psoriatic disease in Germany? Can you tell us more about psoriatic disease in Germany, for example, how many people are diagnosed?

I am 58 years old. I have had psoriasis since I was a child. My father also had psoriasis. When he saw the first flares on my elbow, he said: "That's psoriasis. Here's a skincare cream. You can use it. You don't need to go to the doctor. He can't help you." So I took the cream and hid my skin under long clothes. Nobody knew anything about the disease - neither the doctors nor the patients.

Things are different today. A lot is known about psoriatic disease. Research interest increased with the emergence of biologics around 20 years ago. In Germany, between two and three percent of the population is affected. That is at least two million people. The first biologic was authorized in Germany in 2004. There are now around 30 biologics and biosimilars and two small molecular antagonists for the treatment of psoriasis. Around 60 percent of German dermatologists now prescribe these drugs.

How important was the WHA resolution on psoriasis for people living with the disease in Germany? What did it mean?

The German Psoriasis Association (DPB) was very aware of how hard IFPA and individuals were working to get the resolution passed, as several dermatologists from Germany were actively involved. These dermatologists were and still are members of the DPB's Scientific Advisory Board. We at the DPB therefore celebrated the resolution at the time. It was first and foremost an ideal confirmation that the work we all do in the patient organizations is very important, because the disease was recognized as a serious illness at this globally important institution. However, we mainly shared the joy internally with our members and our Scientific Advisory Board. Unfortunately, the public has taken little notice.

What changed after 2014 in Germany, after the resolution was adopted?

In Germany, there was a translation of the Global Report into German. It was received with great interest by DPB members. I believe that some DPB members only really realized what a serious disease they have as a result of the WHA resolution and the Global Report itself. Despite all the information we provided - through our magazine “PSO Magazine”, brochures, and translation of the "Psoriasis vulgaris guideline" into patient-friendly language - many members did not fully understand before the resolution and the Global Report that psoriasis is a serious complex systemic disease.

In addition, the resolution opened doors to the Ministry of Health. There was even a meeting with the minister of health and some members of the Board. Together with dermatologists, there had also been a meeting with a member of the Ministry of Health, in which we jointly made it clear that the Federal Republic of Germany, as a member of the WHO, was required by the WHA resolution to work for better care and against stigmatization. The result was a large research project on stigmatization in chronic skin diseases, the ECHT project, launched by Prof Augustin with the involvement of the DPB. The aim was to develop formats that could be used to train people who deal with psoriasis patients in their professions. Surveys have shown that stigmatization also frequently occurs, for example, at hairdressers, doctors, physiotherapists, and in nursing.

What was Deutscher psoriasis bund’s role in pushing for that change?

The DPB held a series of talks with politicians from the health sector and even with the then Minister of Health. The WHA resolution and the Global Report in German language opened the door. The attention for psoriasis was great for a moment, but not sustainable on the political side.

Do you have examples of real impact and differences that have arisen since?

The large ECHT project ran from 2018 to 2020, after which a follow-up project was launched, again in cooperation with the DPB: the BEGINN study. In this, the training developed in the ECHT project was carried out with people who come into close contact with psoriasis patients in their profession (e.g. careers, hairdressers, physiotherapists, medical students).

What still needs to change?

Germany was already at a relatively high level in the treatment of psoriasis 10 years ago. The real-world data from the Institute for Health Services Research in Dermatology and Nursing (IVDP), led by prof Augustin, show that 60 percent of dermatologists in Germany today treat patients according to guidelines. However, this also means that 40 percent do not, and therefore many patients do not receive the treatment they need. We often have these desperate people on the phone. The DPB and the Psoriasis Network of Dermatologists are therefore working to ensure that the number of dermatologists who take psoriasis seriously as a complex systemic disease continues to increase. And we are continuing to work together to combat stigmatization. There is still a lot to do.

What hopes do you have for the future?

We hope for even better care for patients with psoriatic disease. We hope for even more well-educated patients and even more well-educated doctors. We hope for more attention to the concerns of people with psoriatic disease in politics and the public. And we are working on it!