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Text of Letter Sent to 48 Federal Leaders about Psoriasis among African-Americans
February 7, 2005
To: Honorable Members of the Congressional Black Caucus
Hon. Bill Frist, Senate Majority Leader
Hon. Harry Reid, Senate Minority Leader
Hon. Denny Hastert, Speaker of the House
Hon. Nancy Pelosi, House Minority Leader
Dr. John Ruffin, Director, National Center on Minority Health and Health Disparities at NIH
Dear Leaders:
We are writing to alert you to important new research, and to request your help.
A new study in the Journal of the American Academy of Dermatology (JAAD) has demonstrated that psoriasis is twice as common among African-Americans as previously believed. The JAAD study, conducted by a team lead by Joel M. Gelfand, MD of the University of Pennsylvania, found that 1.3% of African-American adults have been diagnosed with psoriasis, versus 2.5% of Caucasian adults. However, the previous best estimate was that only 0.7% of African-Americans had psoriasis. This means from half a million to three-quarters of a million African-Americans battle psoriasis.
But you would never know this from the internet. A new report issued by our group has found that African-Americans are mentioned on less than 1% of pages that discuss psoriasis on the internet, and you seldom find a picture of psoriasis on dark skin. This does a disservice to African-American psoriasis patients, increasing the isolation of those whose disease may already make some of them feel isolated.
The JAAD paper is also noteworthy in that it found hints (the authors could not say definitively, due to the size of their sample) that there may be disparities in psoriasis severity between whites and African-Americans, with Blacks reporting more extensive psoriasis than Caucasians. These possible differences, if they show up in larger studies, could be due to genetic differences, to a difference in access to health care, or to other causes. But whatever the cause or causes, the answer is important. If there are genetic differences that account for this, gene studies could help us further pinpoint genes that give rise to psoriasis susceptibility. If the results, instead, point to racial differences in access to health care, this would be important to know for ongoing public policy debates about insurance coverage, Medicaid, and access to cutting-edge psoriasis treatments.
The JAAD paper also suggested (again, limited by a small sample size) that African-Americans may be less likely to seek information about psoriasis form the internet. Again, this could be due to less access to the internet, or due to the lack of psoriasis information specific to African-Americans that the Psoriasis Cure Now! report identified, or due to other issues. We simply do not know.
This new information about psoriasis among African-Americans comes at a troubling time for all psoriasis patients. When they write the history of this Congress decades from now, your bipartisan commitment to increase biomedical research funding will be one of the signature achievements recognized by grateful Americans. Unfortunately, psoriasis patients have been left out in the cold during this historic decade.
While NIH funding is up 148% over the last decade, psoriasis research funding at NIH’s NIAMS has actually been cut by 13%. Today, the federal government spends just 77 cents per patient annually researching psoriasis and psoriatic arthritis for the 6.5 million of your constituents with these diseases.
This does not make sense in human terms or in economic terms. Psoriasis is an incurable, non-contagious disease of the immune system that can first strike at any age, causing painful skin lesions, and often, arthritic symptoms. A 1999 study found that psoriasis causes reductions in physical and mental functioning comparable to that seen in diabetes, heart disease, hypertension, depression and other diseases. Psoriasis costs the U.S. economy more than $2 billion annually, and the latest treatments can cost a patient $15,000 annually.
We urge you to increase the federal commitment to research on psoriasis and psoriatic arthritis, so we can share in the spectacular gains that the National Institutes of Health have made in so many other areas. In addition, we need your support in directing more research to the questions surrounding psoriasis among African-Americans, which will help not only these Americans but all Americans, as we try to unlock the mysteries surrounding psoriasis susceptibility, so we can find a cure for this often debilitating disease.
Please let me know if we can ever be of service, or if you have any questions. I would be happy to discuss this with you or your staff at your convenience. More information on this issue is available on our web site.
Thank you for your consideration and for your service to our great nation.
Very truly yours,
/s/
Michael D. Paranzino
President
Psoriasis Cure Now!
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