Fall/Winter 2005 Table of Contents
Oral Cancer Awareness and Early Detection Efforts Fall Short

OCF teams with 3-time Emmy winner Jack Klugman to talk about the early detection of oral cancer on national TV spots.

Agencies, Societies and Profession Not Doing Enough to Create A National Policy*

An editorial opinion by Brian Hill, Founder and Executive Director, The Oral Cancer Foundation; Late-Stage Oral Cancer Survivor

This year cancer replaced heart disease as the number one killer of Americans. Since 1972, when President Nixon officially declared a “war on cancer,” progress has been made, but we're still far short of conquering the disease.

Accordingly, while we continue to explore and digest the reams of new data that research is producing daily, we must also look to those strategies that have yielded the best immediate, tangible results. If you look at those cancers in which there have been palpable gains against the death rate, i.e., cervical, prostate, colon, among others, they all have two things in common. The first is that they lend themselves to early detection methods, even if the method is somewhat invasive, as in the case of a colonoscopy. The “Katie Couric effect” on the rise of colon exams is clear evidence that Americans will become engaged in early detection if public literacy and awareness become priorities.

The second thing they have in common is that in their early stages, they respond well to existing, conventional treatment modalities; specifically, surgery, radiation, and chemotherapy. The message is clear: while science works on ultimate solutions, there are existing, viable mechanisms available to reduce the deadly toll of cancer deaths in the U.S., and the proven vehicles for achieving this objective are public awareness and early detection.

Another example is the dramatic change in cervical cancer mortality. During a 10-year period, with only the adoption of an annual screening by asymptomatic American women, the disease saw an approximately 70% drop in mortality rates.

This is extraordinary by any standards, and it came about because a motivated and informed public was effectively served by a community of physicians engaged in early detection. A cervical cancer examination is primarily visual and tactile; if suspect areas are found, a tissue biopsy is performed. I could just as easily be describing an oral cancer examination. Even the precursor tissue changes are identical.

Importantly, there was no landmark study indicating that adoption of cervical cancer screening would result in saving unprecedented numbers of lives. But in the late 1940’s and 1950’s, the American public, the government, professional medical societies, and physicians drew on what they knew to be sound clinical experience to initiate screening. I mention this because the argument I hear most often from those opposed to oral cancer screenings is that there is a lack of published evidence of positive outcomes. But now, in addition to these examples, there is published data that refutes the naysayers’ claims.

A peer-reviewed, long-term (10 years), high population (170,000 individuals) study, published in the June 3, 2005, issue of no less an authoritative source than Lancet showed an almost 30% reduction in the death rate among a group of people who had been screened for oral cancer versus a group which had not been screened. When broken down by high-risk persons who smoked or engaged in other risk behaviors, the results were even more dramatic.

For more on the study, go to www.oralcancerfoundation.org/news/story.asp?newsld=804 and www.oralcancerfoundation.org/news/story.asp?newsId=801.

This study provides sound scientific data for what we have known intuitively for decades. First, that discovery of disease in its early progression (early staging) yields better long-term outcomes. Second, that the cancer in question must be one that, in its early stages, responds well to the three established therapies mentioned earlier. Given this information, I would like to pose a question. Of the billions of dollars spent annually by our government to bring down cancer in the U.S., why is less than 2% of that money applied to those areas that have historically yielded the best results — public awareness/literacy and early detection programs?

What would it take to turn oral cancer into a success story, like that of cervical cancer? Oral cancer is arguably the cancer that lends itself most readily to detection and cure at early stages. Screening requires no invasive procedures, is inexpensive, and can detect oral cancer in a three-minute exam by the naked eye or palpation, even in its precancerous forms. Further, oral cancer is easy to biopsy, and, as an early-stage cancer, responds well to conventional therapies.

In my opinion, here’s what it would take:

  1. Evidence that early detection is of value, which is now available.
  2. A governmental agency such as the CDC to establish recommendations for a national policy and guidelines with the support of its partner organizations in the NIH (such as the NIDCR, NCI, etc.) and the Public Health Service.
  3. The full cooperation of professional organizations and societies whose members would be mandated to implement a national oral cancer initiative and policy. These would be groups that represent the interests of physicians, dentists, nurses, hygienists, etc., such as the ADA and the AMA.
  4. Guidelines established by these professional groups so that state licensing boards would require a demonstration of knowledge or CE credits in screening and early detection. After initial licensure, some continuation of this regulatory oversight would have to remain in place as new techniques and data become available.
  5. The commitment of practicing medical and dental professionals and their auxiliaries to follow those guidelines in the daily conduct of their practices, and the establishment of a reimbursement mechanism, be it private payer or third party, for those who follow the guidelines.
  6. A long-term, cohesive public literacy and awareness campaign aimed at ensuring that the public understands the importance of an annual screening.
  7. A mechanism to attract and involve those segments of the American population that are burdened with socioeconomic issues and existing disparities in health care.

Unfortunately, my experience has taught me that all of the groups which would have to cooperate to make these things happen have their own, often competing agendas, their own budgetary constraints, their own profit motives, their own vested self-interest and their own institutional resistance to change. To develop a coalition based on agreement and consensus among them is a Herculean task. But the fact that neither consensus nor cooperation exists explains why oral cancer mortality rates have remained relatively unchanged for over 50 years, and why there is no likelihood that they will change in the near future.

Exactly what are we asking for here? Only that dentists become more conscientious about following a protocol that already exists. Dentistry has a well-defined referral process. A hygienist finds something that is suspect. It is referred to the general dentist for whom the hygienist works. Or a dentist finds a suspicious area and determines that it is something that he or she can or cannot identify, but which has existed for 14 days or longer. It is the dentist’s obligation to treat the patient or to refer the patient to a specialist for a biopsy and follow-up. If the dentist begins a treatment protocol, and no resolution occurs in a short, fixed period of time, the dentist must refer the patient to someone with more oral medicine experience. That new doctor, perhaps an oral surgeon doing a biopsy, assumes control of the diagnosis and with the help of a pathologist or an oral medicine specialist comes to a conclusive diagnosis. Should the condition be found to be malignant, the next step is a referral outside of dentistry to oncology. In this entire chain of events, the most important part is the initial discovery. Without that, an oral cancer is missed and continues to develop into a late-stage killer. No one is suggesting that hygienists or general dentists become pathologists; that’s why a strong referral chain exists. But DISCOVERY is key to making the system work, and the trained eyes and fingers of dentists and hygienists are the tools to early discovery.

Unfortunately, because early discovery is not occurring often enough, 66% of oral cancer patients are found with late stage 3 and 4 disease. If anyone were actually looking and referring the questionable patients, this statistic would be lower. It is this statistic that, in my opinion, cancels out all arguments that dentistry is meeting its obligation to be part of the discovery process. In dentistry’s defense, only 60% of the American population sees a dentist every year. Even so, there is no evidence that the other 40% make up the majority of oral cancer victims.

While I have painted things with a very broad brush, I will say that there are individuals, albeit a minority, in dentistry, medicine, otolaryngology, nursing and hygiene who are very actively pursuing change. But because not all the necessary parties are willing to come aboard and put their own agendas on the backburner, measurable change has not taken place. Governmental agencies that have the ability and, indeed, are mandated to set policy designed to improve the public's health, must finally take action. Professional societies entrenched in protectionism and decades of inaction must leave those policies behind and lead their members in implementing new guidelines. Private practitioners must shed their apathy about performing oral cancer exams and upgrade their knowledge to ensure that the exam is meaningful. Anything less is a disservice to the American public.

Mine is only a single voice, but my perspective is not new. For years there have been unheeded calls to action from editors of JADA, dental school deans, NIDCR scientists and others. I wasn’t angry six years ago when my dental team and my ENT team failed to diagnose my oral cancer for months while it developed into a late-stage disease. I was just glad to survive. Anyone can miss something, or make a mistake. Even in our litigious society, with failure-to-diagnose issues clearly on my side, my inclination was to try to turn a negative into a positive. My work through The Oral Cancer Foundation has been productive, and in areas including public awareness, patient support, and free public screenings, significant progress has been made. But in terms of developing a national policy that could reduce the death rate, those efforts have left me disappointed in the institutions and individuals I have sought to mobilize and, yes, finally angry.

While I have spoken out in public about the fact that organizations, policies, and individuals are resistant to change, I have not formally named names, because I feel that ultimately these entities must be part of the solution. I have chosen to try to stay within the system in order to effect change. But since tangible results have been scant, it may be time to drive change via a different type of public awareness. Perhaps the only way to get these policymakers to change is to open a very public debate on their inaction and the reasons for it, thereby bringing about a public cry for official guidelines that will provide the simple, basic services necessary to reduce the morbidity and mortality wrought by oral cancer.

Since such a move will almost certainly create controversy, I would prefer that responsible individuals and organizations step up to the plate voluntarily. So for now I will continue my efforts to establish a coalition that can bring together the people who are essential to making a national policy a reality. Those who choose to maintain the status quo will not be able to claim the moral or scientific high ground if they allow things to continue as they are.

I ask you to think for a minute about the issues I have raised. If you feel defensive, perhaps you might ask yourself if you are actively part of the solution or passively part of the problem. If you believe the situation demands change, why not play a proactive role in creating change? It takes a single person of conscience to begin to change the status quo. That person understands that you actually have to be the change that you wish to see in the world. It’s said that a man who wishes to move a mountain starts with a handful of pebbles and stones. I’ll be curious to see who chooses to help me pick up the stones to move this mountain, and who chooses to throw them at me.

The Oral Cancer Foundation Inc. is a 501 (c3) non-profit charity that provides information and support to the public and professionals via a Web site, (www.oralcancerfoundation.org), which currently receives over 15 million hits per month. It represents over 39,000 patients, survivors, family members, and medical/dental professionals as members.

*The views expressed in this article are not necessarily those of the NYU College of Dentistry and the editorial staff of Global Health Nexus.