| 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.
.......................................................................................................
CONGRESSIONAL TESTIMONY
February 4, 2022
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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