November 24, 2002
 
The Honorable

United States Senate [United States House of Representatives]
Washington DC 
[For address and email contact info see - http://www.senate.gov and 
http://www.house.gov]
Dear Senator [Representative] ______________:
I am writing to you as a concerned [patient][parent of a child] suffering from a 
life threatening illness called Recurrent Respiratory Papillomatosis (RRP). RRP 
is a disease in which tumors grow in the respiratory tract, threatening the 
lives of children and adults through suffocation. A decision was recently made 
to divert CDC funding away from studying this disease so that there could be 
more money for other priorities. I understand the need for CDC to focus on 
bioterrorism and West Nile Virus at this time, but RRP remains a critical public 
health problem that would greatly benefit from a continued effort between CDC 
and its collaborators in clinical medicine. I am writing you in hopes that after 
learning more about this devastating disease, you will use your political 
influence to vigorously advocate for restored CDC funding.
The financial and human toll of patients and families affected by RRP is 
catastrophic. There is no known cure for RRP, with surgery under general 
anesthesia being the accepted method of intervention. Some children require 20 
or more surgeries per year, and a few children younger than six years old have 
had hundreds. Estimates indicate that upwards of $200 million each year are 
spent on child and adult surgeries and hospitalizations related to RRP. (See 
www.rrpf.org, www.rrpwebsite.org and www.alpf.org for more information.) 
Since 1996, a Multi-disciplinary CDC directed Task Force of physicians, 
researchers, CDC personnel and patient advocates, have been studying this 
disease through the establishment of an RRP patient Registry and coordination of 
research efforts. Through this important and successful effort, they have 
collected data on over 600 children, tracked them through more than 10,000 
surgical procedures and published results in several peer-reviewed articles. It 
is estimated that as many as 1500 new juvenile cases of RRP are diagnosed yearly 
in the U.S. However, the work of the RRP Task Force is far from being done. They 
still do not understand the pathogenesis and immunology of the disease, the risk 
factors for developing aggressive disease and the role of adjuvant medical 
therapies. CDC is the only institution that can address this sort of public 
health problem and, as you may be aware, the CDC funding for this initiative has 
run out. 
Strides have been made through the establishment of the Registry but there is a 
need to be able to take the next step forward in the creation of a Tissue Bank 
and the expansion of the Registry to include site-specific disease information. 
In addition, there are potentially helpful adjunct treatments in need of 
testing. In particular, a randomized, placebo-controlled trial of one of the 
promising anti-virals, Cidofovir, is very much needed, but this cannot be 
accomplished without CDC's assistance. At a minimum, required funding to 
continue these RRP related efforts at CDC is estimated at about $500,000 over 
the next three years.
As of October 1, 2002, the CDC effort has been defunded. The RRP community 
urgently needs politically connected champions at this time. We hope that you 
will be responsive to this appeal and that you will help us get funding 
restored. If you need any further information, please refer to the websites 
listed above. Thank you for your consideration of this matter and I look forward 
to hearing from you in the near future.
Sincerely,