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Psoriasis group calls on CDC to end confusion over number of Americans with psoriasis
(May 3, 2005) How many Americans have psoriasis? Is it “as many as 7.5 million,” “5 million” or some other number? Both of those figures have appeared recently in media reports on psoriasis, and millions of dollars in medical research funding may ride on the answer. To find the answer, Psoriasis Cure Now, a patient advocacy group, today launched an effort to get the Centers for Disease Control and Prevention (CDC) to conduct a definitive count of Americans with psoriasis.
“No one seems to be able to agree how many Americans have psoriasis, and this confusion may be hurting us in Congress,” said Michael Paranzino, president of Psoriasis Cure Now. “One of the most frequent questions I get asked on Capitol Hill is how many Americans have the disease, and the number of people impacted by a disease clearly affects its research funding. Given that psoriasis research funding is down 8% over the last decade as medical research funding for other diseases is up 99%, it’s time to get this question answered accurately.”
The National Institutes of Health’s (NIH) National Institute of Arthritis and Musculoskeletal and Skin Diseases says that there are “between 5.8 and 7.5 million” Americans with psoriasis, but some reports continue to suggest there are 4.5 million or 5 million Americans with the disease. Part of the confusion comes from studies that exclude all children, or exclude anyone with the disease who does not have a physician’s diagnosis to back it up, even though a group of dermatologists and primary care physicians recently surveyed by Datamonitor estimated as many as half of psoriasis patients may be undiagnosed.
“No one should be using figures that exclude my daughter Jessica or the hundreds of thousands of other children who have psoriasis,” said Marielle Gagarin of Grand Rapids, Michigan, whose nine year-old daughter has had severe psoriasis for three years. “We need the government to determine once and for all how many Americans of all ages have psoriasis and to commit the research funding to find a cure for this debilitating and currently incurable disease.”
Psoriasis Cure Now has launched an e-petition enabling Americans to urge the CDC to conduct an accurate count of all psoriasis patients, including children, as well as adults who have the disease but have not been seen by a doctor for it. It also asks CDC to determine how many Americans have psoriatic arthritis, another poorly-understood disease. CDC is currently preparing to release data on psoriasis, but its study reportedly will exclude everyone under age 20 and over age 59, meaning millions of psoriasis patients will be missed. The e-petition letter to CDC is available here.
Psoriasis is an incurable, recurring disease of the immune system that can first strike at any age, causing dry, painful skin lesions that can crack, bleed and itch. Many people with psoriasis also have psoriatic arthritis, a chronic, progressive and debilitating inflammatory disease that often causes joint pain, stiffness and swelling, as well as bone damage.
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