otohns.net Conference Coverage AAO-HNSF & OTO Expo 2000

otohns.net Conference Coverage
Annual Meeting of the AAO-HNSF and Oto Expo
Washington, D.C - 2000

"RRP - Recurrent Respiratory Papillomatosis Foundation"
Lea Harth, Managing Editor of MediSpecialty.com with Bill Stern of the Recurrent Respiratory Papillomatosis Foundation
Audio/Video Link
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Lea Harth: “I’m Lea Harth, Associate Editor of Medispecialty.com, and I’m here today with Bill Stern.”

Bill Stern: “Hello, I am with the Recurrent Respiratory Papillomatosis Foundation. Recurrent respiratory papillomatosis or RRP is a disease in which tumors grow in the respiratory tract, primarily in the larynx and around the vocal chords. However, it can affect the trachea and even seed down into the lungs.”

Lea Harth: “So this is something that’s pretty serious.”

Bill Stern: “Yes, indeed, it is very serious. Indeed, it can be quite life threatening in a number of cases especially when it gets deep in the respiratory tract and in the lungs where right now there is no effective treatment.”

Lea Harth: “Are there any tests that can be done to detect this before it becomes life threatening?”

Bill Stern: “The patient is usually seen by an ears, nose, and throat doctor and they will try to manage it surgically and with adjunct treatments to try to keep it contained, however, there is no guarantee that the disease will not seed down. Tracheotomies in this disease are contraindicated because we do know that that will help the disease to seed down certainly into the trachea. Now prevention of the disease is another issue, and in the juvenile onset situation, the disease is presumably passed from the mother via the birthing process. There is a lot of evidence that caesarean sections might be preventative. Let me just go over a bit of the demographics first.”

“The disease affects a full spectrum of ages from early childhood on up. We’ve seen patients diagnosed in their sixties, however, what we do see is a distinct bimodal distribution in diagnosis age. You have a large peak in early childhood around the age of two, and certainly often most of the time before the age of ten and then a gap. There are very few patients diagnosed between the ages of ten and twenty, and then there’s another broader peak of diagnosis in the thirties to forties. Now getting back to the issue of possible prevention of the disease in the juvenile onset. What we found is that there are groups that appear to be high risk of transmitting the disease, and this is situations in which the mothers are young, under the age of twenty, it’s their firstborn, the delivery is vaginal, and they also present with condyloma.”

Lea Harth: “What is condyloma?”

Bill Stern: “Condyloma is the human papilloma virus manifesting itself in the genital region primarily.”

Lea Harth: “As warts.”

Bill Stern: “As warts, that’s correct. The association is that the same human papilloma virus types that are most commonly found in the respiratory disease, which is HPV-6 and HPV-11, are those that are found in the genital region. Now as far as treatments for this disease, as I mentioned, the common treatment approach is surgical. Laser surgery is still the most widely used, but it does not cure the disease per say, it just manages the disease. Tumors will threaten the airway of the patient and so one needs to go in and remove the tumors to keep the airway open. Also, voice quality especially as one gets older becomes a main consideration as well. Now there are adjunct treatments that have been used; Interferon is perhaps the longest used adjunct treatment. It initially involves daily injections and then it may taper off to three times a week but the problem there is that there are significant side effects, sometimes elevated liver enzymes. So it is difficult for patients to remain on that protocol over a very long period of time, and then we often find that when that treatment is stopped the disease comes back. There’s a nutritional supplement that has shown some promise in a clinical trial and among patients that are currently taking it, and it’s called Indole-3-Carbinol.”

Lea Harth: “Are the clinical trials still ongoing with this?”

Bill Stern: “There is an ongoing clinical trial involving Indole-3-Carbinol run by Dr. Clark Rosen at the University of Pittsburgh so this is actually a fairly easy adjunct treatment in that it’s just a matter of taking a nutritional supplement orally.”

Lea Harth: “Let me ask you what would lead a patient or a potential patient to seek a doctor’s care? What symptoms might they notice or would a parent notice in their child that would lead them to take the child to the doctor?”

Bill Stern: “The most common symptom is hoarseness. In a young child, a low cry but in young children it would often be accompanied by breathing distress - what we call stridor - where you can see that the child, especially at night while they’re sleeping on their back, will have some stress breathing, their diaphragm and chest will show a lot of strain.”

Lea Harth: “Now is this noticed mostly on the inhalation?”

Bill Stern: “Mostly on the inhalation and are often associated with a kind of high pitch snoring type of sound as well. That would be a sign that this child needs immediate attention.”

Lea Harth: “Okay, because at that point it’s now becoming life threatening.”

Bill Stern: “That would mean that there is significant obstruction to the airway and it could very much be a life threatening situation.”

Lea Harth: “Would an adult notice the same symptoms in themselves?”

Bill Stern: “An adult tends to notice the hoarseness, the airway is larger, and you may have breathing problems especially under heavy exercise but the breathing problems would usually be a much later stage in an adult. If the adult had significant respiratory distress, they would be severely occluded.”

Lea Harth: “So you would seek the help of an ENT or an laryngology specialist?”

Bill Stern: “Yes, actually that’s a good point that you raised. There are some differing opinions. Obviously ENT’s can do the surgery to clear the airway, now those who are laryngologists also focus on voice and the preservation of voice is very important. Most ENT’s who have experience, and I stress experience, with this disease which is important are now more aware of how to do the surgery. There are certainly some very important considerations especially not being overly aggressive.”

Lea Harth: “Thank you very much, and we’ll be putting the URL for your website - http://www.rrpf.org on the Internet along with this interview.”

Bill Stern: “Thank you.”

Lea Harth: “It was nice meeting you.”