The Prostatitis Foundation
 

Testimony
to

U.S. House of Representatives Appropriations Committee
Subcommittee on Labor, Health and Human Services, and Education

May 9, 2002
Room 2358 Rayburn House Office Building
Washington, D.C.

By
Clark J. Hickman

Mr. Chairman and Members of the Committee:

My name is Clark Hickman and I live in St. Louis, Missouri. I appreciate the opportunity to share with you some personal as well as anecdotal insights regarding the insidious disease of “prostatitis.”

I first came down with this disease when I was 25—in 1979. Despite having intense urinary burning and pain, a feeling of pelvic pressure, and a chronic fever—all the classic symptoms of prostatitis--the first 3 doctors I consulted misdiagnosed the problem. One suggested I might have an appendicitis, one thought I had a bladder infection, and one thought I had chapped skin between my legs! Over the next 10 years, I floated between a total of 8 urologists and 3 primary care physicians trying to find someone to cure this malady. Most would simply ask what I had taken, and prescribe something else for the requisite 10-day period. If I returned later, they would often shrug their shoulders and say I’d have to “live with it.” Over the course of 10 years I heard I was over-anxious, depressed, too focused, and a hypochondriac. One urologist, sensing my frustration and exasperation, suggested castration as a possible cure.

When the Prostatitis Foundation was formed, and I became involved with them in the early 1990s, I found that my case was not unusual. Connecting with other men from throughout the country and the world informed me as to the breath and scope of this terrible disease, but more importantly on the devastating effect it has on these lives. When I formed the Prostatitis Foundation’s Telephone Support Bank in 1997, we were and continue to be, flooded with calls from men in all walks of life who are as anxious and confused as I was back in the early 1980s.

In a study I did of 70 prostatitis patients in 1999, I found the disease struck men from the late teens to the early 80s. In fact, the Centers for Disease Control estimates that 50% of men will experience symptoms of prostatitis at some point in their lives. And, the medical literature is rife with estimates that prostatitis is the most common illness in middle aged men and accounts for the majority of urological visits in men under the age of 50. In this study, men reported greater-than-normal levels of anxiety, depression, and social isolation than a control group of similar men. Most men had eventually been labeled, as I was, hypochondriacs by their physicians, and a significant number had also been labeled as “sexually maladjusted” or “latent homosexual.” Or, that the “problem” was merely “psychosomatic.”

These are stories that I continue to hear regularly from men throughout the country who call the Support Bank to talk about this condition. They are, for the most part, confused, angry, frustrated, and absolutely bewildered with the lack of adequate treatment they get from physicians. Some are suicidal. I can hear the worry in their voices: Will I become impotent? Will I develop cancer? Can I infect a partner? Will this ever go away? When? How?

These men convey stories of ruined relationships, derailed careers, untold expenses of endless physician visits, prescriptions, and expenses on try-it-yourself remedies ranging from herbs to enemas. Nothing works. The inadequate attention these men receive, and the lack of coordinated information about this disease that affects so many men is a national scandal.

For the physician’s part, most would gladly treat prostatitis effectively if they knew how. The frustration that patients feel with this condition is equaled only by the frustration felt by physicians in their inability to isolate and define specific causes and prescribe effective treatment. In 1996, Dr. Richard Alexander of the University of Maryland School of Medicine testified before this Committee as to the dearth of knowledge in the medical community regarding prostatitis and outlined systematic steps to empirically research this problem. In the ensuing 6 years, some progress has been made in this area, especially through the Chronic Prostatitis Collaborative Research Network. Scientific work is continuing in this area to learn as much about the multiple facets of this disease as possible. Therefore, I am asking for an increase in funding for the Chronic Prostatitis Collaborative Research Network, currently being funded in the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at NIH, which is due to expire to fiscal year 2003, a modest amount moving the budget up to $3.5 million. This would allow for additional research centers and continue the progress they are making. We also want a scientific and clinical workshop with international expertise to be held in FY 2003 to disseminate the finding of the Research Network and develop a strategic plan.

Thank you for your attention to this very important problem.

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CONGRESSIONAL TESTIMONY

February 4, 1998

I am________________and I have Chronic Prostatitis. I was diagnosed with the disease at the age of 16, in 1959, about a year after recovering from a urinary tract infection and well before I was sexually active. At first, antibiotics relieved my symptoms; however, episodes were recurring about every 18 months to two years. As I grew older, these episodes became more frequent and more intense.

I flew more than 100 missions as a pilot in Vietnam and I remember wondering on several of my sorties, whether the pain I was enduring while sitting in the cockpit would interfere with completing my mission.

I would like to share with you what it is like to have Chronic Prostatitis. I wake up each and every morning with low back pain. I have moderate pain when voiding and can never seem to void completely. This is why I have to make frequent visits to the bathroom during the day, and at least once during the night. There is always a sense of great urgency when I have to void.

I have spent many a day, sitting in a hot bathtub in order to get relief from the pain deep within my pelvic area. Most over the counter drugs provide just temporary pain relief. Prescription drugs would disqualify me from performing my job, besides, most sufferers report getting hooked on those drugs after just a short time of use. Even my marriage has been severely affected by this disease because of the moderate to severe pain that accompanies intercourse.

Since my initial diagnosis I have seen over 25 different Urologists, spent thousands of dollars on drugs, doctor bills and traveling, not including the loss of work caused by incapacitation. I have sought medical care abroad living for more than two months in a Third World country where there were rumors of a possible cure.

While abroad, I met many Americans afflicted with Prostatitis. They all had very similar stories regarding the progress of their disease especially regarding the treatment received in America. Many of them were so upset that they held their personal physicians responsible for their condition. There is no standard of treatment for Prostatitis. Most Urologists give antibiotics without properly culturing the patient in order to determine the proper antibiotics to use. In time, most antibiotics become ineffective against the disease as a result of resistance. The Urological community is not only split on the causes of the disease but also its management. That is why finding the cause of this disease is so important. The cure rate for American patients seeking help in the overseas community I visited was dismal, just as it is in the United States. Additionally, my medical insurance company refused payment for any of the treatments or drugs I received overseas, because they considered it experimental. I returned home quite depressed to say the least. Psychologically, I have learned to cope with the ramifications of the disease with the help of counseling.

To top this all off, both my sons were diagnosed with Prostatitis at ages 16 and 17 respectively. Their diagnosis was also made before they were sexually active! Dr. Attila Toth, M.D., a fertilization specialist and director of the MacLeod laboratory in New York City first brought the possible familial aspect of this disease to my attention. He was of the opinion that prostatitis was a bacterial or viral infection that could be carried into the egg by the sperm during the fertilization process and for unknown reasons, not express itself until adolescence when the prostate begins its growing process. Clearly more research needs to be done to get the answers we need to understand and treat this disease.

The Internet News Groups are full of horror stories from fellow sufferers desperately seeking advice regarding what doctors to see, what medicines or therapies to try in order to get cured or find some relief from this disease. Many of these victims have gone to the professional journals as I have and gained an enormous amount of information on this subject. In fact, many prostatitis patients know as much as, or more than the doctors who are treating them.

Many years ago, it was thought that Ulcers were caused by psychological problems. Today, we know that the bacteria Helicabacter Pylori is the culprit in the majority of cases. Moreover, this bacterium has now been implicated in Adenocarcinoma (cancer of the GI tract). In other words, a bacterium caused the development of a cancer. It would be less than a coincidence if our researchers were to find that the same mechanism i.e. a bacterial infection, at play, in the development of prostate cancer. Is it possible that underlying each and every case of prostate cancer there was a case of prostatitis, silent or otherwise? Can you imagine the ramifications of such a discovery? There is only one way to find this answer and in addition stop the needless suffering or loss of life that, at some time or other, will impact nearly two thirds of the male population of this country. That way is through research, research and more research until we find the answers and create the cure.

On behalf of all those men whose lives have been adversely affected by diseases of the prostate, I want to sincerely thank you and the members of this committee for your past support of the NIH in their search for clues to solving this mystery. Continuing this support is absolutely essential to solving this debilitating disease.

Respectfully submitted,

_______________________
(name on file with foundation)

 

 

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We're sorry you are having to learn about prostatitis, but we're glad you came here, because we think we can help. Please be advised that the Prostatitis Foundation does
not warrant, support, sponsor, endorse, recommend or accept responsibility for any health care provider or any treatment or protocol performed by any heath care provider.

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