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What's at Stake
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The federal government spent one dollar per patient on psoriasis research last year. Read on to learn why that is woefully insufficient. Then join our battle to increase research on psoriasis and psoriatic arthritis.
What is psoriasis? What is psoriatic arthritis?
The impact of psoriasis: physical, emotional, economic.
How is it treated?
What is being done to find better treatments and a cure?
What is being done to ensure patient access to the full range of treatments?
How can I help?
What is psoriasis? What is psoriatic arthritis?
Psoriasis is a common, incurable, non-contagious, genetic-linked disease of the immune system that negatively impacts people’s skin and, sometimes, their joints.
Psoriasis is common. According to the National Institutes of Health, as many as 7.5 million Americans have psoriasis. It can first strike at any age.
Psoriasis is incurable. While it can go into remission for some patients, there is no diet, medication, lifestyle change or operation that can cure it.
Psoriasis is non-contagious. While skin with psoriasis can sometimes look like a rash or contagious condition, psoriasis is never contagious.
Psoriasis has a genetic basis. While much more research needs to be done in this area, psoriasis runs in families and there may be as many as 12 or more different genes that can give people susceptibility to psoriasis. That said, many children who have a parent with psoriasis will never get psoriasis themselves; and many children whose parents do not have psoriasis may one day get psoriasis themselves.
Psoriasis is a disease of the immune system. In ways still not fully understood, psoriasis is triggered by an immune system that “misfires” in some way. Some of the leading psoriasis treatments reduce psoriasis symptoms by addressing the immune system—but not without side effects or potential risks.
Psoriasis is known as a skin disease, because it creates patches of dry, itchy, flaky, scaly skin that can crack and bleed. These patches often appear on the elbows, knees and/or scalp, but can appear anywhere. Some patients never have more than a patch; others are covered from head to toe with psoriasis. In very rare cases, psoriasis can be life-threatening (and the side-effects from a life of psoriasis treatments can also occasionally be life-threatening).
In a significant minority of psoriasis cases, the person also gets psoriatic arthritis, pain and inflammation in the joints similar to rheumatoid arthritis. More than a million Americans have psoriatic arthritis, although there is reason to believe it is under-diagnosed.
Click here for more information on psoriasis.
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The impact of psoriasis: physical, emotional, economic.
Psoriasis can have severe physical, emotional and economic impacts on patients, and is costly to our nation’s economy and health care system.
For more than one-third of psoriasis patients, psoriasis is a daily problem in their lives. That means more than 2 million people face significant, daily challenges from their psoriasis. But even for those with milder psoriasis, many report that they are dissatisfied with their psoriasis and/or its treatment.
Because psoriasis is such a visible disease, it can severely impact one’s sense of self and one’s intimate relationships. Researchers are just beginning to see how negatively psoriasis can impact people’s lives. One patient study found that psoriasis causes reductions in physical and mental functioning comparable to that seen in diabetes, heart disease, hypertension, and depression. In fact, the incidence of depression is higher among patients with psoriasis, and a significant minority of psoriasis patients has even contemplated suicide. (If this includes you, please get professional help. Don't give up.)
Living with psoriasis can also be expensive, with some treatments costing $15,000 annually. Psoriasis is estimated to cost the U.S. economy billions of dollars annually. Yet federal funding for research on the disease was just $6.5 million in 2004.
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How is it treated?
Because each case of psoriasis seems different from the next, and because there is no cure, psoriasis treatments are varied, and run the gamut from cutting-edge prescription medications to flim-flam artists selling potions that do nothing but separate psoriasis patients from their money. Even among legitimate psoriasis treatments, the range is vast, and includes ultraviolet light treatments, topical creams and lotions applied directly to the affected skin, pills taken orally, injections administered by the patient at home or by a nurse at a medical facility, and things like stress reduction techniques.
Access to treatments is increasingly a challenge for psoriasis and psoriatic arthritis patients, as some of the newer treatments can cost $15,000 or more annually.
Click here for more information on psoriasis treatments.
We are building a new part of our website that will examine treatments in detail. Here are some links to the biologics that are receiving a lot of attention:
Remicade (infliximab)
Raptiva (efalizumab)
Humira (adalimumab)
Enbrel (etanercept)
Amevive (alefacept)
See also:
Soriatane (acitretin)
Methotrexate
Cyclosporine
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What is being done to find better treatments and a cure?
While biotech and pharmaceutical companies are investing in psoriasis and psoriatic arthritis research in the hopes of finding more effective (and thus profitable) treatments, the federal government has not made the commitment to psoriasis research the way it has for so many other diseases.
In fact, psoriasis research has lost ground over the last decade, despite the largest increase in medical research in world history occurring during that time. The federal government increased funding on other medical research by 99% since 1995, even after accounting for inflation, while psoriasis research funding fell by 8%.
This is unacceptable, and we need your active involvement to change it.
There are many exciting genetic, immune system, vascular and other research avenues ready to be tapped for psoriasis and psoriatic arthritis. What is missing is the federal funding to support it.
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What is being done to ensure patient access to the full range of treatments?
While some insurers are providing their psoriasis and psoriatic arthritis patients coverage for the full range of treatments, others are unfairly refusing coverage for effective (but expensive) treatments, or are imposing costly roadblocks or delays to discourage use of certain treatments. Psoriasis Cure Now is educating federal and state lawmakers and the media about such practices, encouraging lawmakers to demand full coverage for all psoriasis patients.
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How can I help?
We need you actively involved to win these battles! Click here for ways you can help TODAY!
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