Form Letter for Senators

November 8, 2014 The Honorable SENATOR’S NAME Unites States Senate ADDRESS OF WASHINGTON DC OFFICE Dear Senator LAST NAME, I am writing to request your urgent support for Americans with a disease known as interstitial cystitis/pelvic pain syndrome (IC/PPS). IC affects millions of Americans, yet remains decades behind in funding, treatment, clinical education, and public awareness proportional to its prevalence and the suffering it causes. Interstitial cystitis (IC) has had profound effect on me and my family. It is a chronic condition that is most common in women and is the consequence of the spontaneous breakdown of the bladder lining. Cases of IC can range from mild to severe. Symptoms consist of bleeding, urinary frequency (needing to go often), and urinary urgency (feeling a strong need to go), debilitating chronic pain, and bladder ulcerations. IC can affect anyone - men, women, and children of any race can develop IC. According to Harvard Health Publication, the quality of life of an IC patient “resembles that of a person on kidney dialysis or suffering from chronic cancer pain”. 3 to 8 million women and 1 to 4 million men in the US may have IC(1). Estimating conservatively, that's 1 out of 77 people who have IC. However, due to the fact that IC is predominantly a women’s disease and its lack of effective treatments have caused it to be considered “an economic drain on a urologic practice”(2), research, public awareness, and clinical education have been held back. Only in the last few decades has it even been acknowledged as a legitimate diagnosis by the medical community. 30 years ago the severe and life-altering symptoms were attributed to hysteria and emotional imbalance. Today, due to the lack of awareness, it takes an average of 5 to 7 years to get a diagnosis. Even after a diagnosis, many patients, such as myself, are told not to get their hopes up for a cure in their lifetime and are left on their own. The cause of IC is unknown. There are no definitive diagnostic tools available to clinicians and there is no cure. Although there are programs researching promising new treatments, they are in desperate need of more funding for further research and trials required for FDA approval. With so much still unknown about this disease, increased IC research is vital to the understanding and eventual cure of IC. Therefore, I request your support in the following areas: 1. Maintain/increase the portion of the federal budget allocated to the National Institutes of Health, particularly the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). 2. Encourage NIH to expand the interstitial cystitis research portfolio, conduct online conferences on pelvic pain conditions, and recognize one researcher on pelvic pain per year to promote research and interest in the field. 3. Support funding for the Centers for Disease Control and Prevention to raise awareness about IC and collaborate with community partners on getting the word out about this chronic condition. I would greatly appreciate your consideration and support on the above items. They are extremely important to me, my family, thousands of other sufferers, and their loved ones. Thank you for your consideration of these requests. Sincerely, YOUR NAME YOUR ADDRESS (1) Statistics for women are based on the findings of the RAND IC Epidemiology Study, the largest IC epidemiology study ever undertaken and survey of more than 100,000 US households while prevalence estimates for men are based on the findings of the Boston Area Community Health survey conducted in 2002. (2) Forrest, John B. "Economics of Interstitial Cystitis in Clinical Practice." Reviews in Urology 4 (2002): n. pag. NCBI. Web.