IC is a chronic condition that is the consequence of the spontaneous breakdown of the bladder lining. Symptoms consist of debilitating chronic pain, bladder ulcerations, bleeding, painful intercourse, urinary frequency (needing to go often, up to 60 times a day in severe cases), and urinary urgency (feeling a strong need to go suddenly). 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. Estimating conservatively, that's 1 out of 77 people who have IC. Or, if further research supports the higher prevalence rate, that’s 1 out of every 28 people. 



However, due to the fact that IC is predominantly a women’s disease nor particularly profitable, research and awareness has been profoundly 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 most often attributed to hysteria. Even today, it takes an average of 5 to 7 years to get a diagnosis due to the lack of awareness. Even after a diagnosis, many patients are unable to function but left on their own by the medical community due to the lack of effective treatments. According to a 2012 study published by NIH, more than 1 in 10 IC patients are likely to have "had recent thoughts of suicide, a rate markedly higher than in the overall US population."



In 2004, a breakthrough was made by the doctors at the Interstitial Cystitis Research Center at the University of Maryland (one of the only research centers of its kind) and they discovered a protein, named Antiproliferative Factors (APF), uniquely present in the bladders of IC patients which prevented the bladder from repairing damage to its own tissues (the source of IC symptoms). However, in 2009, as a consequence of the financial crisis, funding was cut to the research center and it was forced to close. No further research has been done with regards to suppressing the APF’s effects despite the Research Center’s note that “greater understanding of APF's mechanism of action could aid in the diagnoses and treatment of interstitial cystitis.”



At this time the cause of IC is unknown, there are no definitive diagnostic tools available to clinicians, and there is no cure. Many IC patients ultimately require disability assistance because of the severity of their symptoms. Although there are promising treatments including the past work of the Interstitial Cystitis Research Center and the patient funded stem cell trials being conducted in California by Dr. Elliot Lander, these programs are in desperate need of funding.



With so much still unknown about this disease, increased IC research is vital to the understanding and eventual cure of IC. Therefore, I would like to request your support in the following areas:



1. $32 Billion for the National Institutes of Health, with a focus on expanding the interstitial cystitis research portfolio.

2. $660,000 for the IC Education and Awareness Program at the Centers for Disease Control.

3. The funding and re-opening of the University of Maryland Interstitial Cystitis Research Center.

Thank you for taking the time to read this letter.