| Recurrent Respiratory Papillomatosis (RRP) 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. Some individuals--even young children--have undergone hundreds of surgeries. RRP 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. They invariably cause voice difficulties, including hoarseness and vocal fatigue. They can occasionally convert into cancer. Left untreated, the lesions may grow, causing suffocation and death. The incidence of RRP is spread fairly evenly between children and adults. The lesions often 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 many hundreds of surgeries under general anesthesia. RRP is NOT the same thing as vocal cord polyps or nodules. Nodules are often treated with speech therapy and polyps are easily removed, rarely come back, and do not cause long term voice problems once they are removed. RRP can cause years of hoarseness or worse. Few people have ever heard of RRP. Although the HPV virus that causes Recurrent Respiratory Papillomatosis is widespread (the CDC has estimated that tens of millions of people in the United States are infected with HPV), the prevalence of RRP is very low. It has been estimated that there are 10-25,000 people in the United States with this disease.
There is no known cure for RRP, with 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.
| | What is the cost of RRP?
Assumptions and Conclusions:
Let us assume that the "average adult-onset patient" in the United States has a mild to moderate disease process requiring 40 surgeries over the course of his or her working career, and let us also assume that the average cost of surgery is somewhere around $7,000 [allowing for inflation, that is a VERY low estimate]. The total surgical cost will therefore be around $280,000 ($7,000 X 40).
Then there's the lost time from work, etc., figured at 40 surgeries X 10+ days per surgical event=400+ days of work. Many surgeries will require more, few will require less, so this time loss expense could easily top $60,000 (includes benefits), depending on the patient's income level, and that does not factor in the inflation index over time. It also fails to include time loss that may result from long-term or temporary disability.
Then there are the non-surgical interventions (adjunctive treatments, speech therapy, psychotherapy, antidepressants, ancillary medical treatment, etc.) which may exceed $60,000 over the course of a lifetime.
Thus it is that an average per adult patient cost of $400,000 might be incurred. This figure may be conservative.
Now, it is estimated that there are between 5,000 to 25,000 RRP cases in the United States. If there are 7,500 adults with Recurrent Respiratory Papillomatosis (a very conservative estimate), this suggests a total cost of about $3 billion ($400,000 X 7,500), assuming that every adult patient got what he or she needed in the way of care. [Note: Not everyone gets this, of course, but this estimate is probably still valid when one allows for cost sharing.]
Assuming that there are another 7,500 cases of juvenile-onset RRP, which usually requires many more surgeries and which often persist into adulthood, this $4 billion figure is probably quite low.
If that is true, the total lifetime cost of 15,000 RRP cases (adult and children combined) may exceed $6 billion (=3 + 3 billion).
How do patients pay for all these surgeries? Our database shows that this can be a problem for some patients, especially those who lack insurance. RRP ISA endeavors to address some of this unmet need and to provide ample support and advocacy for those patients who require it. We can't even begin to imagine how this disease impacts healthcare providers, patients and families in third world countries.
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