[Congressional Record Volume 154, Number 96 (Wednesday, June 11, 2008)]
[Senate]
[Pages S5518-S5519]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




 PSORIASIS AND PSORIATIC ARTHRITIS RESEARCH, CURE, AND CARE ACT OF 2007

  Mr. DODD. Madam President, I rise today in support of S. 1459, the 
Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act of 2007, 
and to encourage my colleagues to lend their support to this important 
legislation. Psoriasis is a chronic, inflammatory, painful, and 
debilitating disease that affects as many as seven and a half million 
Americans. Ten to 30 percent of people with psoriasis also suffer from 
psoriatic arthritis, which causes pain, stiffness and swelling in and 
around the joints. The National Psoriasis Foundation estimates that in 
the state of Connecticut as many as 89,000 adults live with psoriasis, 
psoriatic arthritis, or both.
  No one knows exactly what causes psoriasis. With very few effective 
treatments and no cure, this disabling disease often strikes between 
age 15-25, marking the beginning of a lifelong struggle for psoriasis 
sufferers. Psoriasis is often minimized and undertreated because 
treatments are considered ``not medically necessary'' or ``cosmetic''. 
If a patient is accurately diagnosed, the search for an appropriate 
treatment can prove exasperating because treatments vary widely in 
effectiveness, can have serious adverse side effects, and can stop 
working without warning.
  Often misunderstood to be contagious or due to poor hygiene, 
psoriasis causes many patients to experience social discrimination and 
stigma. Studies have shown that psoriasis causes as much disability as 
other major medical diseases. In fact, lost productivity and forgone 
future earnings create an estimated burden of $114 million annually for 
Americans with psoriasis.
  Unfortunately, research on psoriasis and psoriatic arthritis has not 
been made the priority it should be. S. 1459 would direct the National 
Institute of Arthritis and Musculoskeletal and Skin Diseases to expand 
biomedical research on psoriasis and psoriatic arthritis and to 
coordinate research efforts across the NIH. The bill would also direct 
the Centers for Disease Control and Prevention to develop a national 
patient registry for collection and analysis of longitudinal data on 
psoriasis and psoriatic arthritis. Without such a resource, we will 
remain limited in our ability to evaluate the usefulness--and side 
effects--of the therapies that patients must endure throughout their 
lifetimes.

[[Page S5519]]

  Those suffering with psoriasis are also at an increased risk for 
numerous other serious, chronic and life-threatening conditions such as 
heart disease, diabetes and mental health conditions. These co-
morbidities inflict a significant economic and social burden on society 
in addition to the individuals with psoriasis. This legislation would 
direct the Secretary of Health and Human Services to convene a summit 
of researchers, public health professionals, patient advocacy 
organizations, academic institutions, and Federal and State 
policymakers on the current research, treatment, education, and 
quality-of-life activities conducted or supported by the Federal 
Government with respect to psoriasis and psoriatic arthritis, including 
psoriasis and psoriatic arthritis related co-morbidities. A 
comprehensive report from this summit would provide a roadmap for 
future activities necessary to address current gaps and better our 
chances of finding a cure. Lastly, the bill would require a study and 
report by the Institute of Medicine to address health insurance and 
prescription drug coverage as they relate to medications and treatments 
for psoriasis and psoriatic arthritis. We must ensure that these 
patients receive the best regimen and most appropriate care for their 
disease.
  In closing, I would like to commend the National Psoriasis Foundation 
for their more than four decades of leadership and work to improve 
quality of life for people with psoriasis and psoriatic arthritis. I 
would also like to extend great thanks to my constituents, John and 
Vivian Latella, who have shared their personal stories of the 
difficulties of living with psoriasis. For them, and for the millions 
of Americans suffering from this disease, I urge my colleagues to join 
me in cosponsoring the Psoriasis and Psoriatic Arthritis Research, 
Cure, and Care Act.

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