Source: MSNBC News
Oral cancer is an insidious disease that too often is not discovered until very late in its development, as it might not produce symptoms the average person may notice. By then treatments are less effective, and because of late discovery in far too many patients, it has a five year survival rate of only about 57%, much lower than cancers we commonly hear about. Oral cancer has existed outside the awareness of much of the public, yet it will take one life, every hour of every day in the U.S. This year the combination of unprecedented efforts by the relatively small, non-profit Oral Cancer Foundation, a coalition of strategic partners they formed, and a dose of celebrity power, created what might be called a perfect storm; and one that potentially will change public awareness of one of the few cancers that is actually increasing in incidence in the U.S.
For thirteen years in a row, April has been oral cancer awareness month nationally. More than 85% of all head and neck cancers are oral and oropharyngeal disease. Historically, a loose coalition of stakeholders in the disease has mustered about 200 screening events in April in facilities ranging from large institutions to individual dental offices around the country. Those participants opened their doors for at least a half-day to opportunistically screen members of the public in their communities for free, to find early stage disease, and to raise public awareness.
This year the Oral Cancer Foundation, which assumed responsibility for the logistics and promotion of the April effort, was able to create nearly 2,000 sites/events, a ten-fold increase over any previous year. In combination with 4 major walk/run awareness events the Foundation coordinated in April, tens of thousands of individual screenings for this deadly disease were conducted.
When speaking of this unprecedented success, Brian Hill, the Executive Director of the Oral Cancer Foundation, who is also a survivor of a late stage 4 oral cancer, stated, “I think that several things impacted our success. As a small organization that routinely deals with limited funding and human resources, we historically build strategic alliances to accomplish our goals. As a result, we had established relationships with large and powerful organizations to tap for help. We have a significant membership base of private practice doctors and clinical institutions that were already in place to actually accomplish the screenings, and the foundation put some of its other agendas on hold during March and April, to apply ourselves fully to the task. Combine those assets with an “A-list” celebrity who has recently come out of treatment for the disease, award-wining actor Michael Douglas, altruistically choosing to use his significant celebrity and visibility to advocate for early detection. His prime time appearances on Oprah, The Today Show and The View, discussing the need for early discovery and asking the American public to get screened for the disease, and you have an optimum environment to be successful.”
Dr. Michael Alfano, Vice Chancellor of NYU, and one of the Oral Cancer Foundation’s advisors, was particularly impressed with the metrics at the end of the month. Dr. Alfano has been an oral cancer advocate for decades, and his insightful development of the Oral Cancer Consortium, a confederacy of allied universities, and medical institutions in NY, NJ, and PA began the April screening efforts in 1998. That group continues to be involved today. “I am very pleased that OCF continues to build on their many positive credits in the world of oral cancer. To see what this idea has now become is highly gratifying. Screening has enormous potential to save lives when applied in an opportunistic manner. When the dental community, which is routinely and daily involved in the oral environment, embraces this issue, they become an important first line of defense against these cancers through early discovery of suspect tissues. OCF’s ability to organize these dental practices, and move them to active participation clearly has made a difference.”
The screenings this April were primarily visual and tactile, though many offices used some adjunctive devices in their efforts. None of these devices like the VELscope which uses a wavelength-specific beam of blue light to identify tissues with abnormalities in the oral cavity, are in any way invasive to the patients. Jamie O’Day, the Treatment Facilities Coordinator for OCF observed, “This particular cancer lends itself well to a screening methodology which is quick, painless, and even outside the realm of April’s free events, very inexpensive to accomplish. It is primarily visual and tactile, with the medical and dental professionals looking for things that a layperson may not notice, since they are often painless. Something as simple as a tissue discoloration, a hard painless lymph node in the neck, or in a patient’s verbal history taking, the statement that when swallowing they feel like something is painlessly stuck in their throat, or swallowing has become more difficult, are just a few of the signs and symptoms that professionals know are red flags. While there are more potential symptoms, I state these to illustrate how someone might easily ignore them, allowing a potentially deadly situation to prosper to a more advanced stage.”
“This is the very reason that an annual exam by a trained professional is so important,” Brian Hill added. “There is no question that annual screening and testing for potentially life threatening diseases has become the norm in the U.S. today. There are legitimate concerns about the financial impacts of some of these screenings, whether private or third party paid, and the invasiveness of them as well. Oral cancer screening is likely the least expensive or invasive cancer screening a person can have. I often joke that it is so simple that in the five-minute procedure you don’t even have to take your clothes off. As to expense, many dental offices conduct this cancer exam just as part of their normal intra and extra oral exam with no additional charges.”
Several of OCF’s partners, which the foundation credits with much of the successful turnout this year, are heavy hitters in the world of dentistry, and included both professional organizations and private sector firms.
Dr. Ross Kerr, chair of the Oral Cancer Task Force of the American Academy of Oral Medicine, said of his organizations involvement, “Oral cancer is on the rise in the U.S.. A new viral etiology, Human Papilloma Virus #16 (HPV16) is bringing a new demographic of individuals to the disease. This is the same virus which is a cause of cervical cancers in women. A decade ago, we were confident that we knew who was at high risk for oral cancers, but today that is significantly less so with this viral component as a cause. Historically those who smoked for decades, or were heavy alcohol consumers, developed these cancers after their fifth decade of life. Today we are seeing young, non-smoking individuals as the fastest growing segment of the oral cancer population. While that historic group still is a concern, this new demographic makes differentiation of those at high risk much more problematic. I think that the foundation’s approach to this through opportunistic screening is particularly important today. We may in the future have biological markers that we could test through salivary diagnostics to isolate those most at risk, but today the conventional screening protocol is the tool that we can immediately apply to the problem with tangible results. We (AAOM) were very pleased to be a partner with the Oral Cancer Foundation this year, and will continue to be involved in their future efforts. They clearly understand and can apply the mechanisms to get results.”
Two other dental professional groups also joined OCF’s efforts: The American Dental Association, and the Academy of General Dentistry. Mr. Hill commented that this commitment from these two powerful dental organizations represented a partnership that he has been working towards for some time. “The April awareness initiative was the tipping point opportunity to formalize a joint effort with these two organizations,” said Hill, “and both provided the outreach we needed to bring on private dental practices as screening sites. AGD provided the foundation with a full-page ad in the March issue of their journal Impact, which reaches the vast majority of all general dentists in the U.S. This contribution helped greatly. The ADA also through their publications, encouraged the dental community to partner with us through targeted stories. I think the partnership was made possible this year by changes inside the ADA, particularly the naming of Dr. Kathleen O’Loughlin to the Executive Director position. She is an individual who brings a significant public health background, combined with her own social consciousness to the organization, and I am optimistic that this is just the beginning of things that we can accomplish together. We could not have reached the significant level of dental participations without them.”
In the private sector, the Foundation sought to expand an existing relationship with the world’s largest dental products distribution company and a Fortune 500 member, Henry Schein Inc. Chairman of the Board and CEO Stanley Bergman created a call to action letter directed at their tens of thousands of US customers, asking them to join the effort with OCF. When combined with the messages that were already on the dental community’s radar, this direct request for their involvement was pivotal. LED Dental Inc. also reached out to thousands of customers who use their oral cancer screening tool, the VELscope, and contributed to the dental outreach as well. Outside the world of dentistry, pharmaceutical giant Bristol Meyers Squibb partially supported the costs of the effort through a dedicated grant given to OCF. “This was our first year working with BMS,” observed Megan Cannon, OCF’s Director of Operations, “and I hope that this huge leap OCF was able to facilitate in public awareness, screening sites, and numbers of individuals screened, will fuel their desire to work with OCF in a bigger way in the future. For all the donated time by screeners and volunteers, there is a significant financial component to doing this annual event well. We could not have grown this awareness month program without that generous financial support.” The balance of the funding that the Foundation needed to accomplish this year’s success came from an unrestricted grant in 2010 from The Entertainment Industry Foundation, a longtime supporter of the Oral Cancer Foundation, through the affiliated Bruce Paltrow Fund. OCF Founder Hill stated, “Many of our most important accomplishments in the last couple of years have only been possible through EIF’s generosity. They have been the strongest of all OCF’s supporters, and valuable allies in the war against cancer. They are the powerhouse behind the highly visible and effective Stand Up 2 Cancer effort, that is a catalyst for breakthrough ideas and collaborations in medicine that have not previously existed. We are proud to be official partners with them in their Stand Up 2 Cancer program, and now with their financial support of our efforts, we have developed a more complex and productive synergy.”
According to Mr. Hill, “This year’s screening and awareness events were a huge success by past standards, and I am very proud of what The Oral Cancer Foundation has accomplished. In fact, the efforts were so successful, that we have extended the events into May, and some offices are even signing up to do events in June. My only regret is that we were asked to take on the April effort so late in the game, with only about 4 weeks to pull things together. I believe that next year, with plenty of time to fine tune what we have learned, drum up additional financial support for the national screening and awareness month, and add new components to the program, that we and our partners will be able to accomplish truly amazing things.”
Oral Cancer is not a rare disease. It kills one person every hour of every day in the U.S., and 100 new individuals will be diagnosed each day with oral cancer. These staggering statistics make these free events crucial, as awareness of the disease and its risk factors in the U.S. population is so low. Oral cancer is the largest group of those cancers which fall into the head and neck cancer category. Common names for it include anatomical sites where it occurs such as mouth cancer, tongue cancer, tonsil cancer, head and neck cancer, and throat cancer. While treatments for it can be effective, survivors are often left with significant quality of life issues, including impaired speech, swallowing dysfunctions, and facial disfigurements from surgeries.
Contact for further information: Brian Hill, Executive Director OCF, firstname.lastname@example.org (949)278-4362
Additional information can be found on the Foundation’s web site http://www.oralcancer.org
The Oral Cancer Foundation is an IRS registered 501c3 non-profit public charity.