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Richard D. Alexander M.D. House Appropriations Subcommittee testimony February 29,1996 I am Dr. Richard Alexander, an urologist and Associate Professor of Urology at the University of Maryland School of Medicine in Baltimore, Maryland. Chronic prostatitis is truly the forgotten disease of men in this country. You have heard in testimony and the written words of your constituents the frustration of patients with this disease. Urologists are the principal group of physicians who attempt to care for theses patients and we share their pain and frustration. I am here to tell you that we do not know what to do for these patients. We do not understand why they have symptoms. We can offer little more than empirical or palliative therapies that, for the most part, do not work. Often this results in a doctor-patient relationship where both are frustrated and the patient is prescribed anything that will get him out of the office. The state of research in this disease is woefully inadequate. At a workshop on chronic prostatitis held at the NIH last December a group of us from around the country could not even agree how to define the disease or even what to call it. Theories about the etiology of this disease and its name come from the belief that an infectious organism is the cause. And yet an infectious agent can be documented to be present and probably responsible for the symptoms in only 5% of cases. The vast majority of patients have a disease we are at a complete loss to explain. And a significant disease it is. I coordinated a survey of prostatitis patient using the Internet last fall. One hundred sixty three patients responded to a detailed 54-question survey over a 2-month period. These men are in the prime of their productive life with a mean age of 43 years. They describe a chronic, relapsing and episodic set of symptoms characterized by pelvic pain, irritative voiding symptoms and effect on their sexual life. The have been symptomatic for an average, an average, of 6 years. Half of the men have missed work because of the disease. Some are on permanent disability because of prostatitis. Over two thirds report minor or major depression because of the disease and 5% report thoughts of suicide. They have received a bewildering array of antibiotic medications prescribed by a mean of 3.2 different doctors for anywhere from 2 weeks an indefinite period at great cost to our health care system and at almost no benefit to them. There is simply nothing else to offer them. What needs to be done? To understand the disease will require research and hard work on the part of physicians, researchers and patients. This must consist of clinical investigation of patients with the disease as well as basic laboratory work. We must first create a definition, such as a set of symptoms or signs, which can reliably resolve the population of men with the disease from normal men or men with other benign disease of he prostate gland. We must then search for differences between such populations for factors, which might give insight into etiology. This should include detailed studies of, metabolic, neuromuscular, immunologic, micro biologic, and hormonal factors. Controlled trials of selected empiric therapies with evidence of efficacy in this disease should be performed so we can tell patients if such treatments have a chance of helping them with acceptable side effects. Only through such research will the truth about this disease be discovered. Ladies and gentlemen of the committee, my only desire is to find out the truth about this disease. The words of these men who are my patients and your constituents cry out to you for help. Please do not let their plight go unrecognized and their appeal for help go unanswered. Thank you. Dr. Richard B. Alexander, MD. Associate Professor Division of Urology, University of Maryland School of Medicine, 419 W, Redwood Street, Baltimore, MD 21201, USA. Tel: 410-328-5109 Email: ralexander@smail.umaryland.edu.
I am Martin Stevens and I have Chronic Prostatitis. I was diagnosed with the disease at age 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 and episodes were recurring about every 19 months to two years. As I grew older, these episodes became more frequent and more intense. I flew more than 100 sessions as a pilot in Vietnam and I remember thinking whether the pain I was enduring while sitting in the cockpit would be as bad as taking a hit. At least I would get to go home with an injury instead of a case of prostatitis! I would like to share with you what it is like to have Chronic Prostatitis. I wake up each 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 bath tub in order to get relief from 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 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 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 it's 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. Additionally, my medical insurance company refused payment for any of the treatments or drugs I received 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, Mark and Danny were diagnosed with Prostititis at ages 16 and 17 respectively. Their diagnosis was also made before they were sexually active! The possible familial aspect of this disease was first brought to my attention by Dr. Attila Toth, M.D., a fertilization specialist and director of the MacLeod laboratory in New York City. He was of the opinion that prostatitis was a bacterial or viral infection that could be carried into the egg by sperm during fertilization process and for unknown reasons, does 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 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 now 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 Pyylori is the culprit in the majority of cases. Moreover, this bacterium has now been implicated in the Adenocarinoma (cancer of the GI tract). It would be less than a coincidence if our researchers were to find that the same mechanism is responsible for cancer of the prostate. In other words, underlying each and every case of prostate cancer there was a case of prostititis, silent or otherwise! Can you imagine the ramifications if this is true? There's only one way to find this answer and in addition stop the needless suffering and loss of life that, at some time or other, will impact nearly two thirds of the male population of this country. We desperately need you to direct and fund the NIH in the research and development of a cure for this disease. Thank You." Respectfully submitted Martin A. Stevens The Prostatitis Foundation 1063-30th Street l Smithshire, IL 61478 http://www.prostatitis.org
Good afternoon. My name is Steve Tornetta, and I am a lifelong resident of Pennsylvania. I am here on behalf of the Prostatitis Foundation, which is a nonprofit group dedicated to promoting awareness and research of Prostatitis. There exists today in America a disease that can often rob a man of his job, sleep, sexual function, ultimate peace of mind and sense of purpose and sometimes with tragic results. Prostatitis in its various forms is currently the most common urologic diagnosis in men younger than 50 and the third most common in men ages 50 and older. It accounted for 2 millions physician office visits in 1996, and has statewide incidence of between six and eight percent. However, despite the prevalence of this disease and the severe impact it has both on economy and those afflicted, it receives very little attention from the medical community, the press and our government. There are several reasons for this apathy: First, the disease is not fatal. As you may know, the prostate is a walnut sized gland that surrounds the urethra, much like a doughnut, and is part of the male genitourinary tract. Its role is in the reproductive process. Thus, an inflammation of the prostate gland may cause many symtoms, as you will hear, but unless it completely closes the urethra and thereby prevents urination, it does not kill. Second, because it is involved in the male reproductive tract, many men feel embarrassed to discuss their condition, often avoiding a doctor visit until the disease has progressed to a severe condition. Even when these men see a doctor, they reluctant to engage in follow up visits because of the intrusive nature of diagnosing and treating the disease. They do not discuss their condition with outsiders and thereby raise awareness. Another reason that Prostatitis has received such little attention, is the disinterest of the medical community. Our medical system, like the rest of the economy, is market driven. Thus, most urologists and other medical practioners focus their only asset, their time on those conditions which provide the highest pecuniary reward. They are not be faulted for this; it is merely a fact of life. As a result, most urologists choose to focus their time and resources on the more serious and ultimate more profitable urologic maladies of prostate cancer and BPH. Both of these conditions often require surgery or other expensive procedures. Surgery and most other urologic procedures are almost never indicated for prostatitis. An illustration of this disinterest in the urologic community can be made from the most recent John-Hopkins White Papers, entitled ”Prostate Disorders”. While the good doctors go into great detail in laymans terms about prostate cancer and BPH, there is no mention of prostatitis. How can it be? Prostatitis is the unwanted stepchild of the urologic community; unwanted because it does not warrent expensive procedures, can be time consuming to treat, and the patients themselves are often desperate for help. Prostatitis patients are indeed desperate men. Imagine a life where you must awake 3 or more times at night to urinate, cannot perform sexually, and cannot sit because of excruciating pain in the perineum. Because of inflammation in a part of the body where there is a very high density of nerves and where most of the body weight rests when sitting, life becomes a hell. All that is important to a man is robbed, leaving him a tired, unemployed, and often lonely zombie shuffling through life unable to find help or a cure. Some forms of Prostatitis can be treated through conventional floroquinolone and other antibiotic therapy where the inflammation is caused by bacterial infection. However, bacterial infection is only one cause of prostatitis; there is an as yet unidentified cause of inflammation of the prostate in most men with the disease. Our congress last year authorized the allocation of money for a pilot study to better determine the cause of this inflammatory response. While this is an excellent start, much more must be done. Our congress can better serve the public through the allocation of additional funds to both expand this study as well as promote more research. The study currently consists if several urologic clinics in different parts of the country. Volunteers for the study quickly filled all available slots, sometimes within days of the opening of the local study. Additional sites or openings for additional patients would be warranted. Furthermore, our congress could authorize additional funding to promote research for more effective drugs that penetrate the prostate, which resists the introduction of many chemicals that are foreign to the body. Also, more research can be conducted on therapies that do not involve drugs. On behalf of the Prostatitis Foundation and the many men suffering from Prostatitis, I thank you for time and attention to our plea for help. The Prostatitis Foundation 1063-30th Street l Smithshire, IL 61478 http://www.prostatitis.org
Testimony before the Appropriations Subcommittee April 5, 2000 Mr. chairman and members of the committee. I am M. E. and I grew up in Fairfield County Connecticut and went to Weston High School. I was Varsity basketball player and class president. My mother has a MS in Social work and my father practiced law in CT. I graduate in 1987 from Weston High and went onto George Washington University here in DC. I spent one year abroad while getting a BBA in International business. I graduated in 1991. I worked for a telecom startup that went public in 1993 that was financially backed by the venture capital firm Patricof & Co. Towards the end of 1994 I was recruited to work as Sales Director for a telecom start up in London, England. I ended up being one of three equity holders in the UK Company. We sold the company for $86 million dollars cash to a US publicly held company in December of 1997. I contracted Prostatitis in the spring of 1997 "Suffice to say this changed an otherwise great life. I was diagnosed with abacterial prostatitis. Some physicians implied I was a moron and it was all in my head. It was stress related I was told by the Urology world. Needless to say this has been a terrible painful and depressing condition for an otherwise very fortunate person. I developed a frequent urge to urinate, which was accompanied by a discomforting burning sensation and a weakened stream. Tingling in the scrotom and inflammation in the tip of the penis contributed to the agony. Sitting for long periods of time became very difficult and walking in a bow legged manner gained some appeal. My mental condition was not helped by being told I was either crazy or not crazy but we have no clue how to treat you. I was 28 when we sold the company and if I wanted I never had to work again. I do not think stress was my problem. Three years later and several doctors later I am more or less no better off. I took a full two years off to try to deal with this problem of which a good portion of this time was spent in beautiful Colorado. I attended an NIH. Sponsored meeting which was focused towards the Urology profession, which has known of this problem for over 50 years. The Urologists are as confused and frustrated as the patients. As urologists are trained primarily for surgery other medical specialists should also be funded and focused on this research. The disease/infection should not be allowed to occur in modern day with the advances in technology. Normal tests are not sensitive enough to detect mycoplasma. I only recently had PCR tests for my prostetic fluid and guess what - they discovered stuff that shouldn't be there! Remember - both in the UK and USA I was told there is no bacteria and I was still put on antibiotics with the concept being - if you have anything this will surly kill it! I have come to learn that is a rather common and ineffective response and treatment. Feeling like you have a bowling ball between your legs and being told nothing is wrong with you along with a whole host of other symptoms is insulting to ones intelligence. I come from a very close and supportive family. I have a lovely girlfriend and money is not a problem but there is a problem and it is called Prostatitis. The public needs to be more aware of this disease that strikes down young men in the prime of their life. Additional funds need to be available for additional research centers. A new approach needs to be looked at. Therefore, I am today requesting the subcommittee's support for an additional $ 2, 000, 000 to the NIDDKD budget to increase the inadequate amount now allocated to prostatitis research. Mr. Chairman, we thank you for your continuing support. The Prostatitis Foundation 1063-30th Street l Smithshire, IL 61478 http://www.prostatitis.org
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 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 estimate 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 labelled, as I was, hypochondriacs by their physicians, and a significant number had also been labelled 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 equalled 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. The Prostatitis Foundation 1063-30th Street l Smithshire, IL 61478 http://www.prostatitis.org
Vi är mycket tacksamma för stödet från the Prostatitis Foundation! We are very grateful for the support from the Prostatitis Foundation!
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