International RRP ISA Center

 

What is RRP?

RRP (Recurrent Respiratory Papillomatosis) is a disease of the respiratory tract caused by the Human Papilloma Virus (HPV).  It causes tumor-like lesions to grow on the larynx and, in some cases, in the trachea and lungs. Left untreated, the lesions grow and can cause suffocation and death.

Few people have ever heard of RRP, and the media has paid it scant attention.  Although the HPV virus that causes Recurrent Respiratory Papillomatosis is widespread (the CDC estimates that over 50 million people in the United States are infected by it), the prevalence of RRP is relatively rare. A low estimate is 10 people in a million (Steinberg).  A high estimate is .005-.01% of the population. One does not catch RRP from someone else who has it. It does not show up as an opportunistic infection even amongst patients diagnosed with advanced AIDS, and most people couldn‚t contract it even if they tried. Genetic factors and impaired immune responses at the cellular level of the respiratory tract appear to play a key role in determining who is or is not susceptible to contracting this disease. 

The incidence of Recurrent Respiratory Papillomatosis is spread fairly evenly between children and adults. The lesions tend to recur, even after repeated surgical excisions. Infants and young children sometimes have to undergo biweekly surgery just to keep their airway open. Some children have undergone hundreds of surgeries. Children contract the disease from mothers who have genital HPV. Babies are infected as they pass through the birth canal.  It is imperative the OB/GYN‚s and pediatric physicians know what to look for in diagnosing and preventing this disease.

However challenging the disease itself is, the story does not end there.  Treatment-induced injuries˜called iatrogenic injuries˜can lead to hoarseness and permanent vocal scarring. These preventable events that arise from over-aggressive treatment may account for a substantial proportion of the complications associated with a RRP diagnosis. 

While there is no cure for this disease, there are treatment strategies, some of which appear to work better than others.  Physicians and patients alike need to be aware of the pros and cons of these various treatment strategies.

There are many „myths‰ about RRP that need to be dispelled.  Society often responds to RRP patients with fear, and schools and employers have been known to discriminate against them. The disease may flare up even after a 20-year hiatus, and the effects of RRP can extend over decades. Clinical depression and a sense of profound hopelessness and isolation are not unusual in patients and their families.

While the human cost of RRP is devastating, the economic cost is staggering.  See www.rrpwebsite.org for the breakout, but the lifetime cost for adult-onset RRP can easily exceed $650,000. Similar costs can apply to children. Single mothers are especially hard-hit, for they have to choose whether to stay home and care for a child with a life-threatening disease or work several jobs just in order to pay their rent and cover their medical bills.

To say the disease is a heartbreaker is an understatement.

The International RRP ISA Center

The International RRP ISA Center operates as a charitable, non-profit tax-exempt 501(c)(3) organization, as determined by the Internal Revenue Department. It betters the lives of RRP patients throughout the world and helps educate and network the RRP treatment and research communities.

Our Goals  

(1) To provide information, support, advocacy (ISA) to patients, families, and healthcare providers regarding RRP;

(2) To educate the general public regarding RRP;

(3)To create a supportive community network for those afflicted with RRP;

(4) To improve treatment of RRP;

(5) To empower patients and families;

(6) To make distributions to RRP-related organizations, and to RRP patients and families who cannot afford medically necessary treatment. Includes purchasing medicine/supplies for patients inside or outside the United States.

Our Activities

We maintain the RRP Website, which includes pages on frequently asked questions (FAQ), treatment trends, research topics, advocacy/self-advocacy, and links/resources. We also have a library featuring hundreds of abstracts and articles, an RRP chat room, and over 10 message boards containing thousands of messages. The entire website includes nearly a hundred linked pages on the ISA Center server alone, plus several PowerPoint presentations, an in-service training, and more. Our Guestbook contains hundreds of positive comments signed by patients and physicians alike.

Besides maintaining the RRP Website, we also maintain the RRP Advocacy Project, and the RRP ISA Foundation. 

In addition to the above activities, we have also made a commitment to:

(1) Maintain a presence in medical conventions in order to provide information and support to physicians and their patients;

(2) Offer physician-facilitated presentations on RRP in many cities across the country for patients and interested physicians;

(3) Raise media awareness of RRP through specific strategic initiatives;
 
(4) Advocate on behalf of patients whose insurance coverage has denied benefits for RRP;

(5) Develop and maintain a RRP case management program that can assist patients in need;

(6) Develop and maintain a powerful database that will become a research-standard for RRP. Members of the RRP community will access it over a secured website connection. Statistical analysis of non-private data will be publicly available in real time over the web;

(7) Advocate with pharmaceutical and medical supply firms to make medications and resources available to those in the United States and in other countries who can't afford them.

 

Board of  Directors 

Michael D. Green, LICSW (President. & Treas.)
Sherry H. Osinga, RN (Vice-Pres.)
Susan D. Artof, MA (Secretary)
Dr. B. Heath, PhD
Arturo Avila Chavez, MD
Bernard Stachell
Denise M. Griffin (RRP parent)
Kristina Vanderpool (RRP parent)

Executive Director & Webmaster