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The Long Road to Relief From a Painful and Embarrassing Malady
April 08 , 2008 by EditorHis marriage failed, his life was becoming more miserable with each passing day, and San Diego businessman Timothy Burks wanted to die. For almost a decade, Burks, now 62, found the unremitting pain and urgent feeling that he needed to urinate at least 20 times a day more than an inconvenience. For years Burks lived a lie, telling no one except the parade of doctors he consulted what he was going through. “How do you tell people your penis hurts, that it was a big factor in my divorce? This affliction was controlling my life so I made excuses at meetings, at dinners – I have to make a call, I have to blow my nose, I need a smoke.” (Burks doesn’t smoke).
“I can tell this story now,” he says. “I was in an airplane, stuck on the runway, and they told us we’d have to stay in our seats. I had gone to the men’s room before we got on the plane, but now I had to go again so badly that it was either they shut off the engines or I would urinate in my seat. So they shut the plane down. I can still feel the humiliation of walking down that aisle, but what could I do?” The urologists I went to tried really hard, but they had nothing for me. Then, thank God, I found the top guy, Dr. Parsons, and the new treatment he helped create. Nobody should have to suffer the way I did!”
Today Burks reports, “I can drive for nine hours straight, as I did recently, and not have to stop once.” He is pain free – and although not “cured,” he definitely has his life back. He is also seeing someone and hopes to remarry.
Interstitial cystitis, or painful bladder syndrome, is a recognized medical condition with increased frequency of diagnosis. IC/PBS is characterized by bladder pain, urinary urgency and frequency, as well as interrupted sleep and even bed-wetting, but few IC treatments exist and no approved therapies are available for PBS. Today, there are an estimated 10.5 million women and men in North America who suffer from IC/PBS.
The story brings together Dr. Lowell Parsons and Urigen Pharmaceuticals, a small public specialty pharma company dedicated to the development and commercialization of therapeutic products for urological disorders is also the story with a hopeful ending for millions of sufferers who had nowhere to turn. Recent results of a clinical trial for their new drug have been successful. Urigen’s URG101 is a proprietary pharmaceutical treatment comprised of lidocaine and heparin.
Almost 70% of those with IC/PBS are women. One female patient, Atlanta resident Tia Emerson, 30, a chemical engineer for Coca Cola, first experienced symptoms when she was 20, so she too had to endure a decade of horror before she took part in a clinical trial, was treated with UGR 101, and got relief, as did Burks. “From the very first treatment. It felt like a miracle. It still does,” she says. Her trial was presided over by another urologist who participated in the clinical trial, Dr. Jeffrey Proctor, at his private practice, Georgia Urology PA, outside Atlanta.
“I felt like I had to urinate constantly. I also had chronic pelvic pain and frequent leakage,” Tia relates. “I would get up from my computer and there would be a small puddle in the chair.” She also consulted several urologists, was given all kinds of drugs, alone and in combination. Nothing helped. “After a really painful cystoscopy, they found lesions on my bladder. They don’t know yet what causes them –but I was told the mucus membrane of my bladder was deteriorated. Still, this didn’t help my symptoms and things kept going from bad to worse. So I went online, went to chat rooms full of people desperate for help. Finally, someone told me about Dr. Jeffrey Proctor. My pain was a 10, the worst ever, the day I saw him, but it was my lucky day. He put me right into his clinical trial and I got the URG 101. Almost immediately, the difference was amazing. That night I slept through the night for the first time in years. For the next 2 to 3 weeks, the pain, the urge to urinate all the time and the leaking were 90% gone, and this continued for the next three months. Now I’m a new woman.”
In Fresno, Ca, Christine Barreto, a bright, brown-eyed seventh grader, lives the fun-filled life of a normal twelve-year-old girl. But just three years ago, Christine, who has three older brothers, was wearing “pull-up” diapers and was in the same extreme pain that both Burks and Emerson described. “The disease does not discriminate by age, gender or ethnicity,” Drs. Parson and Proctor relate, although it is underreported, and much more prevalent in children than reported, Dr. Parsons relates. He now has 75 children with this condition under his care. Christine’s condition was so bad that at one point, her parents, Winona and Wilson, report, doctors wanted to remove her bladder, which they said the most inflamed bladder they had ever seen…she would have had to have an ileostomy, and perhaps wear a colostomy bag forever,” adds Winona Barreto, who is a nurse. “Imagine our relief to find this new drug!”
“Some people are in such constant pain that they contemplate suicide, says William Garner, M.D., who founded Urigen Pharmaceuticals after a visit with Drs. Parsons at his urology clinic. There Dr. Garner met many patients and realized the shocking truth of how much these people were suffering, often in silence.
In New York City, noted urologist Dr. Elizabeth Kavaler, author of “A Seat on the Aisle, Please! The Essential Guide to Urinary Tract Problems in Women” (Copernicus Books: 2006), says that URG 101 cannot come on the market soon enough. Dr. Kavaler, who is one of only five hundred women urologists practicing in the U.S., treats many patients with the condition, many of whom come to her after having been told "it's all in your mind."
Urigen Pharmaceuticals (www.urigen.com) announced the exciting and most encouraging results of its Phase II multi-center, double-blind, placebo-controlled, crossover designed clinical trial of URG101 in patients with Interstitial Cystitis / Painful Bladder Syndrome (IC/PBS) on March 12, 2008. The drug was found to significantly reduce painful bladder syndrome or interstitial cystitis symptoms following a single dose. The results are based on an interim analysis of 21 completed patients. Additional analyses are ongoing, the results of which will become available over the next weeks, at which time a decision will be made regarding enrollment of additional patients, Dr. Garner reports.
