Neglected, But Devastating: Who's Funding Research for a Misunderstood Disease?

 Photo: joker1991/Shutterstock

Photo: joker1991/Shutterstock

Psoriasis is one of those conditions that is dangerously misunderstood. Too often it's dismissed as little more than a rash or dry skin, when in fact it is a serious, autoimmune condition. Psoriasis is not a “skin problem,” but a chronic, inflammatory disease.

It’s also one of those conditions that doesn’t get much of a look from government research funders, making philanthropy’s role especially important.

More than 125 million people, or nearly three percent of the world's population endure symptoms of psoriasis, including men, women, children—even newborn babies. According to the National Institute of Health, as many as 7.5 million Americans—one in 49—have psoriasis. It can have profound effects on health and quality of life, and in moderate to severe cases carries an increased risk of heart attack, stroke, and premature death. It is not contagious, and while treatable, remains incurable.

The National Psoriasis Foundation (NPF) is dedicated to changing that.

NPF recently awarded $2.3 million in research grants and fellowships in 2018. Receiving over 140 applications from around the world, NPF is funding 45 projects focused on psoriatic disease and related comorbidities. This year's awards bring the total amount NPF has invested in the advancement of psoriatic disease research to more than $19 million.

Awards were distributed for discovery, translational, early career and the ever-important bridge grants. Bridge grants support researchers who have submitted meritorious but unfunded K-type (career development) or R-type applications to the NIH, or similar funding bodies, with a focus on psoriatic disease or related comorbidities. This grant provides a critical year of additional support to near-miss applicants so that they can collect data that strengthens a future successful NIH or similar funding application. 

New in 2018 was the Pediatric Psoriasis Challenge Grant. The NPF chose to focus the challenge grant on pediatric psoriasis and offered this grant in collaboration with the Pediatric Dermatology Research Alliance, PeDRA. 

What’s at stake?

Although some think psoriasis is simply a cosmetic condition, severe cases can shorten lifespans by an average of 3.5 years for men and 4.4 years for women. It also comes with many serious comorbidities, including heart attacks, ulcers and mild liver disease. 

And there’s an economic cost, too. In the U.S. alone, impact is estimated that Americans with psoriasis lose approximately 56 million hours of work and spend $2 billion to $3 billion to treat the disease every year.

Up to 30 percent of psoriasis patients also suffer from psoriatic arthritis, according to the National Psoriasis Foundation. Psoriatic arthritis (PsA) is a serious chronic inflammatory condition that can cause significant joint pain and disability. Those with PsA also face a 60 percent greater mortality risk, mainly due to increased cardiovascular disease.

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But the harms of psoriasis or psoriatic arthritis are psychological and social, as well. A World Health Organization study found that 54 percent of people without the condition said they did not want to date someone with psoriasis, 39 percent said they did not want to shake hands with someone suffering from the disease, and 32 percent said they did not want to have someone with psoriasis in their homes. 

Given this it is not surprising that 60 per cent of psoriasis sufferers have a clinically significant psychiatric illness. Suicide attempts among psoriasis sufferers are 10 times higher than the general population. 

How far have we come?

Psoriasis continues to be a problem—first because there is no known cure—but also because there is a severe lack of recognition and awareness, a lack of correct diagnosis, and a lack of understanding the nature of the disease, by both patients and the public. 

Despite the large and growing prevalence of psoriasis across the world, the disease still receives considerably less attention and research funding than some other diseases. 

Beyond the stigma is the inability of research to come up with a cure. Identifying the molecular pathways that underlie the pathogenesis of psoriatic arthritis is particularly challenging because the disease can affect many parts of the body, and multiple cell types.

But there is hope for research advances. Recently developed technologies for gene editing such as CRISPR are providing opportunities to generate mouse models that may more closely approximate the disease in humans, potentially speeding development of better treatments or a cure.

This is what makes the NPF’s funding so valuable. As the largest nonprofit funder of psoriatic disease research in the world, NPF’s investment of over $15 million focuses on drug development and other approaches to improve health outcomes for everyone with psoriatic disease.