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National Psoriasis Foundation Creates Patient Bill of Rights and Responsibilities

To ensure the 7.5 million Americans living with psoriasis and psoriatic arthritis are fully and fairly treated—and to help patients develop more effective relationships with medical providers—the National Psoriasis Foundation created its Bill of Rights and Responsibilities for People with Psoriasis and Psoriatic Arthritis.

The bill aims to help patients get the care they need by outlining their responsibilities in the health care relationship, and it encourages doctors to take psoriatic disease more seriously and keep informed about treatment options. Read the full Bill of Rights and Responsibilities.

Psoriasis is a chronic, genetic disease of the immune system that appears on the skin, causing it to crack, itch and bleed. It’s the most common autoimmune disease in the country, affecting as many as 7.5 million Americans. Up to 30 percent of people with psoriasis develop psoriatic arthritis, which causes pain and swelling of the joints. If left untreated, psoriatic arthritis can cause irreversible joint damage.

“For many generations, psoriasis was treated as basically cosmetic,” said Jerry Bagel, MD, member of the National Psoriasis Foundation Medical Board, and lead physician who worked with the Psoriasis Foundation Medical Board and Board of Trustees to create this bill. “Patients have a right to be treated by someone who understands that psoriasis and psoriatic arthritis are actually serious conditions.”

Among its provisions is the right to be treated by a doctor who is interested in psoriasis and psoriatic arthritis specifically and understands these are serious autoimmune diseases that require lifelong care. Other elements are the patients’ right to clear skin and the best treatments with the least side effects, the right to feel comfortable, and the responsibility to be actively involved in managing their disease.

“For many generations, [psoriasis] was a stepchild disease. Part of the bill is telling patients that they have the right to be comfortable, to speak to other people about psoriasis or psoriatic arthritis.” Bagel said.

The bill also serves as a tool for doctors, giving them a new depth of understanding about the impact of psoriatic disease. It will help physicians realize that if they are not comfortable discussing all the treatments available for psoriasis and psoriatic arthritis, their responsibility is to refer their patients to another provider. Learn more at www.psoriasis.org.

 

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