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RRP ISA Survey Results


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    Sanford Foundation Initiative

     

    RRP ISA sent the following letter to the Sanford Foundation, which is making $400 million available, to be directed at one of four disease entities. Our hope is that HPV is selected. For more, see http://www.argusleader.com/apps/pbcs.dll/article?AID=
    /20080418/NEWS/804180327/1001/news
    .

    _____________________


    April 24, 2008


    Sanford Health Administration
    c/o Andy Wentzy
    Sanford Health
    1305 W. 18th Street
    Sioux Falls, SD 57117

    Re: Allocation Selection Process

    Dear Sanford Health Administration:

    I am the executive director of the International RRP ISA Center. We are a 501(c)(3) non-profit organization serving the Recurrent Respiratory Papillomatosis (RRP) community. ISA stands for Information, Support and Advocacy.

    I wish to present a rationale for encouraging Sanford, in its allocation selection process, to give favorable consideration to HPV as its main funding priority.

    The CDC has, for many years, estimated the number of active “HPV cases” in the United States to be somewhere around 20 million. I think that this number may be misleading, however. Today, the CDC seems to be using a somewhat different yardstick than it used in 1993, when it estimated that there were more than 40 million cases. If the CDC were to count not only the active but also the inactive cases of HPV, many experts think that HPV will have infected almost everyone who has reached sexual maturity. Put another way, there is almost no one who has not been infected. Given the fact that active and inactive cases both work a lot of mischief, the 20 million figure has become something of an anachronism.

    While the other three disease entities that Sanford is considering are all very worthy, it is impossible not to be impressed by the astronomical numbers involving HPV. Nor does HPV just infect women (we all know about cervical HPV/cancer). Not only does it cross the gender lines, but it also affects people of all ages - infants through adults .  This may be the only disease Sanford is looking at with that broad of a scope in its potential to impact and benefit mankind.

    (Data below quoted from http://www.rrpwebsite.org/images/downloads/RRP
    Focus Sessions/RRP Focus 2007/Michael/2007 RRP ISA Presentation.ppt
    .)


    Excluding non-melanoma skin cancers, 6-10% of the estimated nine million cases of cancer worldwide per year may be attributable to HPV infection. 20-24% of all cancers in women from Latin America, Southwest Asia, and Sub-Saharan Africa are attributable to HPV.

    There’s more data:

    ·        rectal cancer, >50% of all anogenital cancers; 40,000 cases/yr

    ·        penile cancer, 70%; 1,400/yr

    ·        oropharyngeal cancers, 20%

    ·        larynx and aerodigestive tract, 10%

    Three more items are of interest:

    ·        Johns Hopkins has said that 25% of head and neck cancers are caused by HPV. Almost all of it in non-smokers/non-drinkers may be HPV-related.

    ·        Many lung cancers are also caused by HPV.

    ·        Breast cancer biopsies in several different countries have come up positive for HPV.


    For an equally alarming report, see http://health.usnews.com/articles/health/2008/02/19/clueless-on-stds-
    throat-cancer-and-oral-sex.html
    ,

    "Increasingly, scientists are implicating HPV-16, and in some cases 18, the same ones that causes cervical cancer. In 2006, a Swedish study of preserved surgical specimens from excised oropharyngeal cancers going back over 30 years identified HPV-16 in less than a quarter of specimens removed in the 1970s. By the 1990s, the proportion was 57 percent. After 2000, it was 68 percent. In 2007, a study published in the New England Journal of Medicine found HPV-16 in 72 percent of oropharyngeal cancers in the United States. Not proof, but based on correlations with sexual behavior, and an abundance of similar findings both here and around the world over the past few years, there is credible if not alarming medical concern that the infection is being acquired through unprotected oral sex."

    "That our children might be at growing risk for this deadly cancer is particularly unnerving." The article refers to it as a "virtual epidemic in the making" and it is currently under way.

     

    Last but not least, there’s Recurrent Respiratory Papillomatosis (RRP), which figures in the name of our organization (www.rrpwebsite.org). Recurrent Respiratory Papillomatosis is caused by HPV 6, 11 and 16.  In RRP, tumor-like lesions grow on the larynx and, in some cases, in the trachea and lungs. They invariably cause voice difficulties, including hoarseness and vocal fatigue. They 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. There is no cure. Infants and young children sometimes have to undergo biweekly surgery just to keep their airway open. Some children have undergone many hundreds of surgeries.

    While the human cost of RRP is devastating, the economic cost is staggering. In the United States, the lifetime cost for RRP can run into hundreds of thousands of dollars. Single mothers are especially hard-hit because 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. In developing countries, treatment is often marginal to non-existent. Untreated, this disease is as deadly as cervical cancer. To say the disease is a heart breaker is an understatement.

    The point I wish to make goes way beyond RRP, however.

    Many people are infected with HPV today. Teens and young adults are not even aware of it, nor will they be until the virus surfaces, perhaps 15-20 years later.  Despite Gardasil, there are a lot of people who will need a therapeutic treatment.  I believe statistics show that the incidence of head, neck and oral cancers in young adults (under age 50) is on the rise.

    Gardasil, the recently developed quadravalent HPV vaccine, has opened a doorway through which, in a generation or so, epidemiologists are hoping to achieve a kind of “herd immunity,” where new cases of HPV will become a rarity. The hope may or many not materialize. Furthermore, it doesn’t address the huge numbers of people who are already infected by HPV. Prophylaxis is very different from treatment. In some ways, prophylaxis can lead to a curious kind of complacency, and actually discourage research toward a cure. It would be a major mistake for us to slow down our efforts to find a cure for HPV. There have been some core advances in creating vaccines, and it is accurate to say that therapeutic vaccines are already on the drawing board.

    In these times of scarce resources, economies of scale count. An allocation of up to $400 million in Sanford funds could galvanize coordinated efforts to develop an effective cure for HPV, perhaps in the form of one of these new therapeutic vaccines. It could usher in an era of cooperation.

    This letter, in the end, isn’t specifically about any one disease, to the detriment of any other. It’s about a HUGE class of very serious diseases caused by an almost ubiquitous virus. It’s about advocating that something be done for the tens of millions of Americans—and potentially billions of people elsewhere in the world—for whom HPV is nothing less than a ticking time bomb, often with fatal effects.

    I know of no treatment-oriented solutions projected by Merck nor Glaxo, the latter of which is also developing a HPV vaccine. They’re working on prevention, and treatment is not their main goal at this time. An infusion of $400 million, assuming it is properly managed, might be used to find highly effective treatments, even a cure, for HPV. Needless to say, it could also cure many of concomitant diseases that HPV causes.

    Deciding in favor of funding HPV research would, I believe, give Sanford the greatest bang for its bucks. With that thought in mind, I wish Sanford an abundance of compassion and wisdom in reaching its final recommendation.

    I am available to answer any questions at (206) 200-6158. I could, if requested, also travel to your headquarters to give testimony.

    Respectfully, 

    Michael Green, MSW, LICSW
    President and Executive Director
    International RRP ISA Center
    PO Box 4330
    Bellingham, WA. 98227
    Phone: (206)200-6158
    www.rrpwebsite.org

    RRP ISA is a non-profit, charitable 501(c)(3) corporation, Federal ID 91-2156850.

    cc (to our scientific advisory panel, as follows): Bettie Steinberg, PhD; Tom Broker, PhD; Keerti Shah, PhD; Richard Schlegel, MD, PhD; Farrel Buchinsky, MD; Robert Bastian, MD; Vincent Bonagura, MD; Lisa Orloff, MD; Robert Horlick, PhD; Ben Heath, PhD.