Vol.3 No.1 An RRP Foundation Publication 1994 Spring

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From the Editor
This issue of the RRP Newsletter is dedicated to Brigid G. Leventhal, noted RRP researcher and advisor to the RRP Foundation.
Some features include:
• An overview of the HPV meeting hosted by Johns Hopkins this past fall.
• In the Research News section, an update on indole-3-carbinol/cruciferous vegetables plus trials using other adjunct therapies for RRP
• This issue's RRP Patient Update presents a letter from the parents of 2 1/2 year old RRP patient, Ariel Bandasch.
• Included in the RRP Patient Gallery and Perspectives, is a brief case history of 14 year old Allan Williams, who has had a rare malignant transformation of a laryngeal papilloma.

The RRP Newsletter is vital to our support services and networking efforts. We welcome your comments and suggestions. Your feedback will be very helpful in improving this publication. We are seeking people from the RRP community to serve as an RRPF Board member and/or officer (see page 2). Also we need more people to be part of the RRP Newsletter. This includes practitioners, researchers, patients and families. Please send articles, notes, etc. for future issues to the address below. Thank you.
The RRP medical reference service is now available for an annual tax deductible donation of $25 or greater. Upon request, we will provide you with lists of RRP related medical references updated semi-annually.
We are asking for your help in supporting this newsletter and other RRP support services. Although all of our time is donated strictly on a volunteer basis, it costs money to publish and distribute this newsletter, to maintain a long distance telephone network, to run periodic medical literature searches, and to carry out additional support and awareness activities . Any donations from individuals or from the business community will be very much appreciated. Tax deductible contributions may be made to:
_{RRP Foundation
50 Wesleyan Drive
Hamilton, NJ 08690}
Bill Stern

In Memory of Dr. Brigid G. Leventhal

Dr. Brigid G. Leventhal, professor of oncology and pediatrics at the Johns Hopkins School of Medicine and the first director of the Pediatric Oncology Division at Hopkins' Oncology Center, died of cancer on the 6^th of February 1994 .
Dr. Leventhal, who was 58, was an expert on the development of new chemotherapy treatments and the assessment of their toxicity in children.
Brigid Leventhal will most certainly be missed by the RRP community. Among her many achievements is her pioneering work at Johns Hopkins in collaboration with Dr. Haskins Kashima, in developing a successful interferon protocol for treatment of RRP patients.
In honor of Dr. Leventhal an endowed lectureship bearing her name is being established at the Oncology Center.

HPV Meeting Highlights
by Bettie Steinberg and Bill Stern

The 12th International Papillomavirus Conference, held September 26 - October 1, 1993 in Baltimore, Maryland reflected the growing number of people studying this virus. There were 436 talks or posters describing advances in the field. The sessions could be grouped into several topics: epidemiology, molecular biology of the virus itself (regulation of virus expression and replication), transformation, therapy and diagnosis, genetics and immunology.
Most striking at this meeting was the increased emphasis on immunology and the whole area of genetics and host response to virus infection. There appears to be an increased awareness that in order to understand HPV-induced disease we must not only understand the functions of the virus but also the interactions between the virus and the host.
With our knowledge that these viruses are ubiquitous, present in 15% to 30% of the population with no evidence of disease, we must now ask why one person exhibits disease while others do not. This is particularly the case with RRP, since as many as 10% of people carry HPV in their respiratory tract and only 1:100,000 (estimated) has RRP. Although such studies are still at an early stage, increasing evidence points to the immune response for

HPV meeting, continued on page 3

To physicians and nurses: Please distribute copies of this newsletter to your RRP patients.

RRPF Officers, Directors & Advisors

Marlene Stern
President and Director *
50 Wesleyan Drive
Hamilton, NJ 08690
(609) 890-0502

Bill Stern
Treasurer and Director
50 Wesleyan Drive
Hamilton, NJ 08690
(609) 890-0502

Henry Woo
Secretary
600 New Hampshire Ave., N.W.
Suite 720
Washington, D.C. 20037

Susan Woo
Director
7107 Georgia St.
Chevy Chase, MD 20815
(301)652-6826

Scientific Advisory Committee

Thomas Broker, PhD, University of Alabama at Birmingham Schools of Medicine & Dentistry

Haskins K. Kashima, MD, Johns Hopkins University School of Medicine

Linda Miller, RN, MSN, Children’s Hospital of Philadelphia

Robert J. Ruben, MD, Albert Einstein College of Medicine

Bettie M. Steinberg, PhD, Long Island Jewish Medical Center

Kathleen Sullivan, RN, Children’s Hospital of Boston
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* After serving for nearly a year and a half as a member of the board and vice-president of the RRPF, Michael Green is stepping down. Until a replacement is found Marlene Stern will fill his position on the board. We are asking members of the RRP community (patients, parents, doctors, nurses, researchers, etc.) to consider an active role in the RRP Foundation. If you have any interest please contact one of the directors or officers listed above.

RRP Network News
Patient/Family Support Network:
Our national support network has grown to over 100 respiratory papilloma families. Responses include patients ranging in age from 1 to 76 years, located in 33 states, two Canadian provinces and Great Britain . Furthermore, a survey of practitioners indicates that our newsletters are potentially reaching over 1000 RRP families/patients.
We have received questionnaires from about 70% of the families who have responded. If you have not filled out a questionnaire before or would like to provide updated information for the RRP Foundation Patient/Family database, please take a few minutes to fill out the accompanying form to the extent needed to bring the information about yourselves up-to-date. Please return them to Marlene and Bill Stern.
Encouraging communication among support group members remains a primary focus of the foundation. When providing your phone numbers also indicate your long distance carrier so as to take advantage of group discounts (eg., MCIs Friends & Family). Let us know if you have access to a computer and a modem or other networking capabilities. The RRPF maintains an account with America-On-Line (AOL) and has access to Internet (see page 8 for the specific address listings). If you have a Macintosh computer and a modem, we now can arrange for you to have a limited amount of free time on AOL to communicate your questions, comments and/or suggestions; just get in touch with Bill Stern. Please let us know your ideas on additional ways to provide for cost effective communication among members of the RRP community.
RRP Practitioner/Researcher Network:
The RRP Foundation continues to actively participate as part of a group called the Task Force on Respiratory Papillomas. This group is comprised of a number of otolaryngologists, RRP researchers, RRP support groups, immunology/epidemiologists (including the Centers for Disease Control [CDC] ) and gynecologists. In February of this year the chairman of this group, Dr. Craig Derkay, initiated the mailing of over 1000 questionnaires to a geographically diverse group of board certified otolaryngologists throughout the United States. This initial survey represents an attempt to define the national scope of RRP as well as examine issues regarding epidemiology, transmission, therapy and the advisability of recommending cesarean section in selected cases. The next phase of this project will involve a more intensive investigation of cases at major clinical centers. Associated with this phase is a comprehensive questionnaire which would probably best be completed via an interview between a clinical nurse or physician and the RRP family or patient. The results from this study will be forwarded to the CDC for tabulation / analysis serving as the basis for a national registry of RRP patients. CDC has offered the use of their facilities and is quite supportive of this effort, however, outside funding for a person to perform the analysis of this data at CDC is still being sought.
continued on next page
We continue to urge you to let your congressional representatives know about RRP and how a national registry could significantly help research and more clearly document the extent to which this disease represents a public health threat. Ask them to contact the director of CDC, regarding a national registry of RRP patients. His address is:

David Satcher M.D., Director
Department of Health and Human Services
Public Health Service
Centers for Disease Control
Atlanta, GA 30333

The RRP Foundation continues to gather general statistics regarding the population of RRP patients from
practitioners. Thus far approximately 33 hospitals and/or private practices with respiratory papilloma patients have returned the single page RRP Medical Practitioner Questionnaire. If you are treating RRP patients and haven’t filled this form out, please help us by completing the form and returning it to the address indicated at the bottom. Thank you.

RRP Patient Stats

The statistics that follow are based on RRPF patient and practitioner questionnaires. There has been no attempt to determine statistical significance, so caution is urged in drawing conclusions from the numbers below.

Tables 1 - 3 provide a breakdown of the patients in the support group based on sex and age; the sample size for these tables is 117.

Table 1. Total number of females and males

Table 2. Distribution of patients based on current age brackets and sex

Table 3. Distribution of patients based on diagnosis age brackets and sex

Birth Statistics:

Cesarean birth in 3 cases - 78 responses
juvenile onset: 2 of 60
adult onset: 1 of 18
Patient is first born in 34 cases - 59 responses
juvenile onset: 30 of 46
adult onset: 5 of 13
Patient was adopted in 17 cases- 68 responses
juvenile onset: 17 of 53
adult onset: 0 of 15


Thus far we have received practitioner questionnaires from about 33 otolaryngology departments who are treating RRP patients. There is a total of approximately 880 patients, 411 pediatric and 469 adults.

Table 4. Females and males (based on 556 patients)

Table 5. Surgical interval (based on 512 patients)

Practitioner responses to date have indicated that 229 of the approx. 880 patients in their practices are following (or have followed) other therapies in addition to surgical removal of papillomas, with a breakdown as follows:

Table 6. Number of patients using alternative therapies

In addition ultra-sound has been used on one patient.

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HPV meeting, continued from page 1

answers. Several talks and posters suggested that the particular genetic composition of some people may reduce the ability of their immune system to "see" HPV-infected tissue, without altering immune response to other infections. In addition, two papers described clever ways that the virus can hide from the immune system. Once we understand all of this, perhaps new therapies can be developed to overcome this immune "blindness".
Several new or improved therapies were discussed. These included photodynamic therapy, interferon, dietary supplements, retinoic acid in combination with interferon and vitamin D3, Acyclovir and new therapeutic vaccines. There were heated discussions regarding whether we know enough yet to do clinical testing of vaccines. One therapeutic vaccine (as opposed to a vaccine designed to prevent infection) has begun testing for advanced cervical cancer caused by HPV 16. All will be watching the results of that trial.



continued on next page

Fourteen year old Allan Williams (pictured above with his sister Daphne) was first diagnosed with RRP at the age of 16 months, although his parents, Joe and Claude, had noticed a loss of voice by the age of six months. RRP has been particularly unkind to Allan. He has endured numerous laser surgeries ( 86 through March 94), interferon therapy, and radiotherapy in 1986, when at the age of 6 he experienced an extremely rare malignant transformation - probably one of the youngest patients in whom this has ever been observed. Although the respiratory papillomas remained aggressive, there was no reoccurrence of the cancer for eight years. Just this past August, however, another malignancy was found and removed. He is currently undergoing radiotherapy for a second time in his life. Despite this Allan remains active, enjoys skiing and continues to thrive at home and in school.
The Williams are a remarkable family. They experienced the tragic loss of a daughter to cancer at the age of three, have been coping with RRP for nearly 14 years and now this malignant relapse. Yet, they have not let disease keep them from trying to live life to its fullest.
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HPV meeting, continued from previous page

Two sessions took place to discuss the objectives of the Task Force on Respiratory Papillomas. The meetings were chaired by Craig Derkay of the Eastern Va. Med. School. Other attendees included Tom Broker and Louise Chow from UAB, Bettie Steinberg from LIJ, Haskins Kashima and Keerti Shah from Johns Hopkins, Susan Bathgate from Geo. Wash. Univ., Elaine Smith

Cheryl Downey and Peter Bandasch, parents of two and a half year old Ariel, offer their experiences and perspectives in the form of a letter which was primarily intended for those physicians who have not had experience with RRP. We feel it is of general interest to the RRP community. Please see the RRP Patient Update section starting on page 7 for details.





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from Univ. of Iowa, Bill Reeves and Joe Icenogle from CDC and Michael Green, Marlene Stern and Bill Stern from the RRPF. Although there was not general agreement on the issue of when a C-Section is indicated in pregnancies that involve condylomata acuminata, there was a clear consensus (including the CDC representatives) for the establishment of a CDC coordinated national registry of RRP patients. Possibilities for funding such an effort were discussed . One could be a congressional line item mandate to the CDC - but rather unlikely given their tight budget situation. A more likely possibility would be to fund a visiting scientist or medical graduate student through a grant to work with CDC personnel at CDC on this project. Overall the feeling was that these sessions were fruitful and that we are getting closer to making a national registry of RRP patients a reality.

The HPV conference bottom line is that we are learning much more about the HPV's, but with each new bit of information, we are reminded of how much we still do not know. These viruses evolved over millennia to infect and co-exist with people. They are very successful in their strategies, and it is with increasing awe that we realize just how much we need to learn. However, there is great excitement at the progress we have made.

RRP Research News

The following reports of clinical research involving RRP therapies, represents a best effort to make an accurate and objective presentation of information through personal communications and reference to literature. Where appropriate the RRPF has provided its input in a constructive manner which we hope will best serve the RRP community.

Bill Stern
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Indole-3-Carbinol / Crucif. Vegetable Study

Approximately a year ago Long Island Jewish (LIJ) Medical Center, Department of Otolaryngology, began a human clinical trial to determine whether dietary indole-3-carbinol (I3C) (found in cruciferous vegetables) could alter metabolism of estrogens in RRP patients and as a result reduce the regrowth of respiratory papillomas after surgical removal. Preliminary results were presented at the HPV meeting this past September. The most definitive result was finding a nearly linear relationship between the ratio of estrogen metabolism pathways and the severity of RRP disease. For more background information on I3C, estrogen metabolism and respiratory papillomas, see RRP Newsletter, Fall, 1993 and Newfield et al., Anticanc Res 13:337-342 (1993).
There are approximately twelve patients formally enrolled in the LIJ study. Based on this sample, the principal investigator, Dr. Karen Auborn, suggests that approximately half have had some positive response, as evidenced by a change in the estrogen metabolic ratio, as well as a reduction in severity of their RRP.
As this study has evolved, several issues have surfaced which deserve some further attention.
Although cruciferous vegetables are quite natural and have probably been consumed by humans for our entire existence on this planet to date, one cannot unconditionally rule out the possibility of “side effects” from diets that involve very large quantities. Through various sources, one of which is Dr. Jane Guiltinian at the Bastyr College, the RRPF has learned that cabbage family vegetables contain varying amounts of a substance called goitrin, which might exacerbate an innate tendency toward goiters (i.e., for those people who have a tendency toward hypothyroidism). Goitrin presumably acts to block absorption of iodine. It should be noted, however, that neither Dr. Guiltinian nor Dr.Auborn (after doing an extensive literature search dating back to 1966) could find any clearly documented evidence of a human developing a goiter solely due to a diet high in cruciferous vegetables. Furthermore, although Dr. Guiltinian is concerned about the theoretical possibility of goiters being induced by high cabbage diets, she did note in a personal communication (March 1994) that she has prescribed up to a quart of cabbage juice a day for treating some ulcer patients for periods of a month and has not seen this treatment induce a goiter.
This clinical trial was motivated by an earlier study involving mice (Newfield et al., 1993). In this study, human laryngeal tissue was infected with papillomavirus and then implanted in immunocompromised mice. They were divided into two groups, one group received I3C while the other did not. In the I3C group 75% of mice did not show papilloma growth , while all of the mice in the untreated group did develop papilloma tumors. Why has this degree of success not been seen in humans consuming large amounts of cabbage family vegetables? There are many possibilities. To name a few: There is no guarantee that humans will respond in an identical fashion as do the mice; sample sizes are probably not statistically significant; there are differences in the way the mice and humans acquired RRP; and the mice were given pure I3C while the humans are consuming cruciferous vegetables. It is of particular interest to pursue that last factor in more detail. LIJ did not propose the use of I3C to treat RRP patients because of their concern that the FDA has not formally approved I3C for therapeutic purposes in humans. (Ironically, however, the FDA has no problem with I3C being used for metabolism studies.) But the reliance on human consumption of large quantities of cruciferous vegetables as a source of I3C, appears to introduce a variable that is at best difficult to quantify. Even if those patients enrolled in the study religiously comply with the consumption requirements as outlined in the LIJ protocol, there appears to be a great variability of the amount of I3C contained in the vegetables themselves. Not only is there significant variation of I3C from one cruciferous species to another (with savoy cabbage and purple broccoli having higher amounts of I3C), but more importantly there is great variability of I3C from plant to plant within a species. For example I3C typically ranges from 4.5 mg / 100 g to 97 mg / 100 g for green cabbage ( Dr. Leon Bradlow, personal communication ). Therefore it is possible for an adult who is following the LIJ protocol, by consuming approx. 1 pound of cabbage (or the juice therefrom) a day, to be getting anywhere from 20 mg to 440 mg of I3C per day! Estrogen metabolism studies conducted by Bradlow and others (personal communication) indicate that in adults 200 mg is likely sufficient and 400 mg is clearly sufficient to induce the desired shift in metabolic pathways (from 16a-hydroxylation to 2 hydroxylation) in most people. ( For children under 50 lbs. Bradlow suggests that 100 mg would induce the desired effect. ) Based on this information it follows that one needs to be consuming cruciferous vegetables that contain at least an average amount of I3C to have some assurance of getting enough. Unfortunately, there is no easy method for most people to directly determine how much I3C is in a particular head of cabbage. However, indirectly, one could be reasonably assured that they are getting enough I3C if their urine samples indicate that their ratio of estrogen metabolism pathways has improved. Before leaving this issue, it should be noted that the role of stomach acids is quite important to further the breakdown of I3C into dimers and trimers that are the real “players” responsible for the shift in estrogen metabolism ( Preobrazhenskaya et al, Food Chemistry, 48:57-62, 1993 ). In this regard it makes sense to avoid neutralizing agents such as antacids while following this protocol.
I3C is a rather benign substance compared to powerful ( and sometimes toxic ) drugs such as interferon
and 13-cis-retinoic acid. The RRPF is hopeful that this

continued on next page
clinical study will continue to evolve so as to be able to accurately determine just how effective I3C is for RRP.

For more clinical trial details, please contact:
Dr. Allan Abramson
Dept. of Otolaryngology
Long Island Jewish Medical Center
270-05 76^th Ave.
New Hyde Park, NY 11402
(718)470-7555

For those interested in obtaining indole-3-carbinol as a nutritional supplement, the RRPF has located two sources, as follows:

1. Enhanced Living
P.O. Box 50810
Provo UT 84605-0810
(801)489-8444 (ask for Dr. Cal McCausland, x304)
to order products: (800)832-7297

Their product is called Nutrin-3 it comes as a bottle of 100 capsules each capsule is guaranteed to contain at least 100 mg of indoles. Their “wholesale” price is $57.95 per bottle +$5 shipping. To be entitled to their wholesale price they will send you a one page “distributor agreement”. An order may then be placed by calling their toll free order number and charging the purchase. If you want to order without becoming a distributor the price is $20 higher.

2. Designed Nutritional Products
145 N. Geneva Rd.
Vineyard UT 84058
(801)224-4518

Designed Nutritional Products is a division of Parish Chemical. They produce nutritional products in bulk including pure indole-3-carbinol (catalog #2704). It can be purchased in 25 gram amounts (bulk powder, not capsules - a level 1/8 tsp holds approx. 350 mg) for $46.50 + $5 shipping. They are not equipped for credit card orders, so one must pay by check. The check should be made out to: Designed Nutritional Products and mailed to the address above. Include a note explaining that you want to order indole-3-carbinol catalog #2704. For those interested in very large quantities, you can inquire about the price of a kilogram or indole-3-carbinol.
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Clinical Studies with Acyclovir

Two institutions (UNC, Drake and U of Iowa, Endres, Bauman, Burke and Smith) are currently experimenting with Acyclovir. Theoretically, Acyclovir should not work. It affects an enzyme active in the herpes virus that doesn't exist in the papilloma virus. But for some reason, yet unknown, this drug appears to continue to have a clinical effect on at least some RRP cases.

Early results of the U. of Iowa study were presented at the HPV meeting this past September. The following paragraph is based on an abstract which appeared in the HPV meeting abstract volume.
Six patients with severe juvenile-onset RRP were treated with seven independent trials of acyclovir (one patient was given two separate trials). In two cases acyclovir was used in place of alpha -interferon. A quantitative assessment of overall disease for six months prior to administration of acyclovir and then while on acyclovir, showed a statistically significant decrease in RRP disease for those patients who were otherwise unmedicated. The two patients who discontinued alpha-interferon immediately prior to beginning acyclovir, demonstrated worsening disease. The U. of Iowa researchers feel that this is consistent with the “ well recognized rebound phenomenon” associated with sudden stoppage of interferon. This pilot study suggests that “acyclovir may decrease the extent of respiratory papillomatosis in patients with aggressive RRP. However, the benefit of acyclovir appears to be insufficient to counteract the rebound of disease when stopping interferon abruptly”.
At the U. of Iowa there are seven patients who are currently being treated with acyclovir (which includes three patients not in the original trials). Treatment in two patients was discontinued, one because the disease has gone into remission and in the other case there did not seem to be a response to the acyclovir.
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Clinical Studies using Trans-retinoic Acid

There have been a number of limited studies involving retinoids. The most widely used appears to be 13-cis-retinoic acid (also known as accutane). Some reports indicate that it may be effective in treating some RRP patients, while others report on its ineffectiveness and toxicity. (See RRP review article by Bent and Porubsky, Insight in Otolaryngology, June 1993). A similar drug, but with perhaps less toxicity, trans-retinoic acid, is currently being tested at the Medical College of Georgia ( Bent and Porubsky, 1993) and at the University of California, Irvine (Carol MacArthur, MD, personal communication). The early indications are that trans-retinoic acid may be as effective as 13-cis-retinoic acid with seemingly less toxicity.

The clinical trial at the University of California, Irvine has just recently commenced, with only two patients currently enrolled. They are interested in more RRP patients to enroll in their study. For more details contact:

Carol MacArthur, MD
101 City Dr., Bldg. 25
University of California, Irvine
Orange CA 92668
(714)456-5753
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The RRPF invites patients and doctors to learn more about these and other experimental therapies. The applicability of any treatment must be assessed within the context of the individual situation. The information provided above is intended to provide some guidance.

RRP Patient Update
There are several messages in this featured letter, by Cheryl Downey and Peter Bandasch. First is that although this is a rather rare disease, diagnosis should not be dismissed just because a physician has rarely seen it. A second issue presented here is the matter of transmission of the HPV virus from mother to child. Can this be prevented? Will C-sections greatly reduce the probability? Finally, the great need for a national epidemiological database of RRP patients to help researchers understand this disease.
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Dear Concerned Physicians:
Our adopted daughter was birthed vaginally at an LA County hospital 10/4/91. It was an open adoption. Sarah, the birth mother, was on MediCal and selected us prior to Ariel's birth. We had Sarah examined thoroughly by a reputedly excellent OB on a private basis. He seemed to have tested for everything, including HIV, but he didn’t test for condyloma. At Sarah's 6 week, postpartum pap smear/exam, Sarah got an abnormal pap result and I took her to my gynecologist. Ten minutes and a simple acetic swab of the cervix revealed condyloma. Fortunately, my doctor gave us informative materials they had developed re: "genital warts." Unfortunately, the news chilled my heart: the papilloma virus could be transmitted to an infant birthed vaginally.
I took my findings to my pediatrician who basically told me not to jump to any conclusions, that such transmission was rare, that Sarah's case was a "light, beginning one," and that "we'll keep an eye on Ariel's throat." In January '93, Ariel, at 15 months, became very hoarse, almost overnight, it seemed. She had just had her 15 month checkup and there were no other symptoms. I called my pediatrician and asked specifically if this could be a symptom of papilloma of the larynx. My doctor's counsel was "wait and watch; if anything worsens, come in." I called again in a month since the hoarseness had not gone away; neither had it worsened. We were advised to see an asthma specialist who "confirmed" that she was asthmatic, and ventolin, etc. were administered. I called again the next month and my pediatrician said if nothing improved by Ariel's upcoming 18 month checkup, she would refer us to an otolaryngologist. She did so, though she could discover nothing "wrong" with Ariel's throat, despite our continued question of papilloma. Now we know that the single most frequent and telling symptom of papilloma is voice change.
The otolaryngologist did not have an infant fiber optic scope, despite my having explained in detail her size and need for a complete look at the larynx in order to rule out papilloma. Due to his rather nonchalant "I'll put her under anesthesia over at the local hospital and take a look down there when I get back from vacation," we sought a second opinion. Again, we were very specific about her size and feared diagnosis and our dissatisfaction that the previous doctor did not have the fiber optic scope needed, and the doctor's office reassuringly booked an appointment. He didn't have the instrument either, but at least had the decency to say (after taking our money) he didn't do infants but he'd find us the name of the doctor at Children's Hospital who did specialize in infant throat work. The following week he gave us Dr. Jerome Thompson's name, thank God.
It was another week before Ariel could be seen; we were not upset, not having gotten any sense of urgency from any of the 4 doctors who had seen Ariel's throat in the last month (2 of whom were throat specialists who heard our questions regarding papilloma, of course). When Dr. Thompson's office fiber optic scope exam revealed that Ariel's larynx was so covered with papilloma that her airway was 95% obstructed, she underwent immediate life saving surgery .
Her prognosis is sobering; monthly laser surgery to manage re growth. Hopefully, she will outgrow this scourge when a teenager. She presently has no voice, merely a valiant whisper.
So, I write to you for three reasons: first, to point out how even an informed parent watching out for the disease, in the company of four excellent doctors who obviously were not well acquainted with the disease, could inadvertently endanger their child's life by letting time pass, in our case 4 months from voice loss (the most common symptom of papilloma) to diagnosis and life-saving treatment. Train doctors about this!!!
A second reason for writing is to urge the OB community to consider the morally and medically unjustifiably high cost of NOT advising a C-section delivery for a condyloma mother. Ideally, physicians would test specifically for condyloma in an 8 month pap, but to swab a cervix with cheap acetic acid and have a visual diagnosis immediately (no biopsy, lab, or waiting involved) is simple, to say the least. To say the worst, while not all condyloma, vaginal deliveries result in early presentation of papilloma of the larynx in the baby, and while no one wants unnecessary C-sections, nor the expense of same, the alternative of knowingly exposing a baby to this horrible, regenerative disease is reprehensible roulette, morally and fiscally. (Ariel’s medical bills last year were well over $60,000.)
Our third reason for this letter is to urge the medical community to lobby the Centers for Disease Control to start a National Registry for this potentially fast-escalating disease, which may affect more than 10,000 people nationally. With no cure and little research money on the horizon a registry is an essential beginning. It is personally appalling to me that virtually the only person who has known ANYTHING about RRP among the 150+ people I’ve told about Ariel’s condition (including many from the medical community) was a waitress who overheard my conversation with another couple. She said “Oh, I know all about that disease; I work for the county Coronor’s Office. Whenever we have an unexplained respiratory failure we immediately check the larynx and 9 times out of 10, it’s covered with papilloma.” I asked if this information was reported anywhere else, on a state or national level. “No, not required.” And yet, my Gynecologist’s office says Condyloma has long since outstripped Chlamydia as its most frequently diagnosed STD. We desperately need a national registry for RRP .
Any and everything you can do to raise consciousness about this disease and its transmission, and to bring about sensible guidelines about non-vaginal deliveries when condyloma is present, will be deeply appreciated by the already-too-many of us in this sad condition. Our thanks to those of you who are crusading for research and reform in this life-threatening and painful area.
Sincerely, Cheryl Downey and Peter Bandasch

RRPF Information and Support Centers:

Main Info. Center and Northeast
Marlene and Bill Stern
50 Wesleyan Drive
Hamilton Square, NJ. 08690 (609)890-0502
weekday phone - (609)452-6545, (609)258-2751
e-mail: billslins@AOL.com; mstern@pucc.princeton.edu

Mid-Atlantic
Susan and Henry Woo
7107 Georgia St.
Chevy Chase, MD 20815 (301)652-6826

Southeast
Wendy Bodner
4800 S.W. 64th Ave., Suite 110
Davie, FL 33314-4449 (305)581-3400

Mid-West
Carol Motley
1820 Brookview
Arlington, TX 76010 (817)261-1023

Georgia
Christina Lancaster
186 Pine Knoll Lane
Eatonton, GA 31204 (706)485-1016

South Carolina & North Carolina
Tami Elsey
2 Hill Trace Trail
Irmo, SC 29063 (803)781-2442

California
Susan and Bob Spock
1553 Via Allondra
San Marcos, CA 91606 (619)744-5022

Washington
Michael Green
12219 Phinney Ave. North
Seattle, WA 98133 (206)361-8185

Recurrent respiratory papillomatosis (RRP) is a disease in which tumors grow inside the larynx, vocal cords and trachea. It affects both children and adults. Research has determined that the Human Papilloma Virus (HPV), is present in these respiratory tumors. These growths are often associated with two specific types of the virus (HPV6 and HPV11) which are also found in genital and cervical warts.
There is no known cure for RRP, with CO₂ laser surgery under general anesthesia being the accepted method of controlling theses growths. If left untreated these respiratory tumors will continue to grow, blocking the patient’s airway with suffocation being the likely result.
The Recurrent Respiratory Papillomatosis Foundation was created to provide family support, promote public awareness, and aid in the prevention , cure and treatment of RRP.
Our organization is primarily focusing on the networking of the RRP community, including patients (both juvenile and adult), families, medical practitioners and researchers.
By coordination of the RRP community and enhanced awareness of this disease, our goal is to stimulate more RRP related research, which will hopefully lead to more effective treatments and ultimately a cure for this disease.

The Recurrent Respiratory Papillomatosis Foundation is pleased to publish this issue of the RRP Newsletter. We hope that this and future issues will serve to enhance the support network among laryngeal papilloma families and also help to provide accurate medical and scientific information about this disease.
Please help us with our RRP work, including this newsletter and other publications, networking RRP patients families and physicians, and creating greater public awareness of RRP. In order to succeed we need your support. We are a completely volunteer organization.
An annual tax deductible contribution of $15 or more will assure that you continue to receive the RRP Newsletter. In addition our RRP medical reference service, providing semi-annual updates of RRP related references, is available to those contributing $25 or more. For further information on our goals and objectives, please send a self-addressed stamped envelope to:
RRP Foundation
50 Wesleyan Dr.
Hamilton, NJ 08690

We are most grateful to those who have contributed to this cause, either financially or by volunteering their time.