Bringing Peyronie’s Disease Out of the Dark Ages
Mark M. Newell Ph.D.

This year the American population reached the 300 million mark. The event occurs at a time when American and global medical science is making advances in technology and treatments that were simply unimaginable as little as twenty years ago. Yet, as most patients seeking care enjoy 21st century medicine, there is a significant portion of the American population – perhaps as many as 30,000,000 men, who have a condition that is largely, and erroneously, considered untreatable. The level of care most of these men receive is not much advanced from that given in the Sixteenth Century when the condition was first recorded!

This patient problem is now called Peyronie’s Disease. Guilio Aranzi wrote about it when medicine was emerging from the Dark Ages in 1571. Francois de la Peyronie gave it a name in 1743. The disease is caused by the growth of fibrous material, or scar-like tissue, beneath the skin of the penis. The scar tissue forms within the tough sheath of tissue that surrounds the chambers inside the penis that expand to create an erection. The scar creates a ‘crimping’ action on the chambers as they expand, forcing them to bend. The result is an erection that curves or bends. The deformity may be mild or severe, may be accompanied by pain, and in severe cases can prevent intercourse. When partners and family are considered, the number of people impacted by the disease may be more than a hundred million!

Recent research and clinical trials are telling us that Peyronie’s Disease may be successfully treated. Why is it then that research and treatment for Peyronie’s Disease is so far behind modern trends in medicine? The answer is threefold. It is due to issues of medical communication, commerce and demand.

The first issue, medical communication works primarily through medical journals and professional conferences. When a major development concerning a high profile disease occurs, the news will often spread through the mainstream media and word of mouth well ahead of the professional media.

Peyronie’s Disease was long thought to impact a low percentage of the population  - and for centuries has been untreatable. New advances are only just being reported through the professional media, and they will be slow to appear on the ‘radar’ of most physicians in regular practice. In one sense, this is not surprising considering the conservative nature of the average family physician, and, to a lesser degree, the specialist.

Secondly, the ‘commercial’ aspect of Peyronie’s Disease is again a result of past history. All physicians, from high profile specialists to your neighborhood GP, have bills to pay. Considering the cost of malpractice insurance, staff, data management and regulatory documentation, even the local GP has an ongoing financial burden that would be horrendous for the average small business. This places each doctor under pressure to generate as much revenue out of his overly long business day as possible.

In the past, as an ‘untreatable condition’, Peyronie’s Disease generated little more than the cost of a standard patient visit fee for the physician. When a patient presented with the disease the MD could do little more than check his patient’s vital statistics, and then explain the condition might go away with time. Alternatives were to suggest using vitamin A or Verapamil creams, neither of which have been proven to be effective.

MDs have to generate income, and they prefer to do it by offering medical expertise that can have a successful outcome for the patients.  Here is another reason why the past history of Peyronie’s Disease works against today’s patient. Most MDs still believe that it does not generate significant income, and cannot be treated successfully.

Another cost aspect is that of clinical trials. Any new treatment offered in the , whether it be with a device or a drug, must undergo clinical trials. The reason is twofold. The Food and Drug Administration wants to see the evidence of a trial to ensure a given drug or device is safe for the public. The medical profession wants to see the trial data for exactly the same reason.

Just one clinical trial – and sometimes many are needed – takes anywhere from six months to two years to design and organize. Well before the first patient is recruited for the study, an exhaustive justification, research design and procedural guideline has to be written and then approved by an independent panel of experts called an Institutional Review Board. Once the trial begins, the procedures and data management challenges and physician/researcher time involved can result in an end cost of $7,000 to $10,000 and above per patient.

This is another reason why devices and drugs that appear to offer less than major financial returns in the medical marketplace often get passed over for further study.

Lastly, there is the issue of demand. The single most powerful influence in a doctor’s office is the informed patient. When armed with the recent history of advances in Peyronie’s Disease treatment, the patient can alert his physician to these developments, and suggest sources for further information. Once thus informed, it is highly likely that the physician will review the new data – and make a decision to offer the treatment.  This is the positive impact of patient demand.

Here is what the informed patient should know: within the last two years there have been significant advances on a number of fronts with respect to treatment for Peyronie’s Disease. There are three areas in which advances are being made.

Surgical techniques for removal of Peyronie’s scar tissue, sometimes coupled with additional surgical techniques for correction of curvatures, have been greatly refined to the point where very high success rates are now being achieved.

The pharmaceutical industry is beginning to focus its own attention on the condition. Three drugs are being actively investigated for their ability to make changes to Peyronie’s scar tissue that result in improvement of the curvature. Verapamil has been in use for some time and is being injected intralesionally – that is direct into the scar tissue – with good results. Interferon is being used the same way. The latest drug to undergo clinical trials for this same application is Collagenase. Auxilium Pharmaceuticals, a company formed in 1999, is engaged in an FDA study using Collagenase – a major investment that, it is hoped, will prove worthwhile for the company and future patients.

There are also developments with medical devices. ‘Iontophoresis’ is a process by which drugs are introduced through the skin via a process of electronic attraction. An Italian company is marketing a device specifically designed to use this process to increase levels of Verapamil in penile tissue.

Another device manufactured by an American company offers the first medically acceptable process of mechanical traction therapy. Mechanical traction therapy for Peyronie’s Disease involves gently stretching penile tissues for an extended period each day for periods of up to six months. It appears that the traction has an effect on the scar tissue, causing internal remodeling and expansion, resulting straightening and lengthening of the penis.  The device is a spring-loaded cradle that is small enough to be worn under clothing in an office environment. The current clinical experience and anecdotal data appears promising enough that it has justified a clinical trial, by Peyronie’s researcher Dr. Laurence Levine in Chicago. Results are expected in the second quarter of 2007

The device is also being used with injected Verapamil.

If a cure for Aids or most types of cancer were announced this year, every MD on the planet would be well aware of the news in a matter of days or weeks. The news of a successful treatment for Peyronie’s Disease will not travel as fast. The recent developments covered above may well mean that firm evidence of such a treatment may well be available within the next few months.

If such news is announced, it will be up to sufferers of the condition to move the news forward by being informed and proactive with their own physicians, by supporting advocacy groups such as the Association for Peyronie’s Disease Advocates, and by communicating and updating other reputable sources such as WebMD. The impact of even a small portion of 30,000,000 voices can have a major effect.

A grass roots movement such as this will heighten awareness, generate demand for the treatment and even convince private and government funding sources that financing further research on Peyronie’s Disease can now be fruitful.

Resources:
Mark Newell Ph.D. is a heath writer and researches in sexual medicine, manages clinical trials and develops educational medical media for public use. He can be reached at marknewell@mac.com

The Association for Peyronie’s Disease Advocates is the premier source for further information on the disease and can be found at www.peyroniesassociation.org The site will also offer a downloadable (PDF format) booklet which is an expanded guide to Peyronie’s Disease and current research.