By Dr. Naomi Jay, RN, NP, PhD, SF Bay Times, December 2013
It’s been a wonderful month for anal health! Researchers and patient advocates had a busy pre-Thanksgiving week. You might have noticed the article published recently in the SF Chronicle Health Section on anal cancer? This was an absolute first. This was followed by the New York Times’ Saturday Nov 23rd report that the American Board of Gynecology had informed our nation’s gynecologists that they were no longer allowed to provide anal exams for men, creating an immediate fiasco for those receiving care or enrolled in treatment studies. A quickly organized letter-writing campaign by clinicians and advocates saw this decision reversed within days. The world is once again safe, regardless of gender, because anal exams can be performed by your local gynecologist or gaynecologist, providing they are trained in the procedures.
All of this happened while the inaugural meeting of the International Anal Neoplasia Society (IANS) was underway in San Francisco Nov 22-24. Over 170 enthusiastic participants from 17 countries attended the meeting, representing a variety of medical specialties as well as patients and community advocates. An opening ceremony that could only occur in San Francisco had Supervisor Scott Wiener declaring Nov 22 “Anal Neoplasia Day” and Senator Mark Leno reminding us that, in California, we know how to do universal health care. There was Myron Ho dancing the hula and Ethel Merman channeling Tina Turner. Justine Almada of the HPV and Anal Cancer Foundation opened with a reminder of the human face of anal cancer, and Dr. Lawrence Piro presented a beautiful montage of his former patient, Farrah Fawcett.
There was also science. Dr. John Schiller discussed developments in HPV vaccination. Sessions covered changes in the epidemiology of anal cancer (there’s more of it), and different approaches to screening and emerging new treatments. There were debates on whether or not to screen, or vaccinate HIV positive people for HPV, highlighting the different approaches in health care systems between the United States and Australia.
A panel on community advocacy included several anal cancer survivors and grounded the discussion with moving descriptions of the day-to-day struggle they contend with concerning the effects of treatment, particularly radiation. The panel represented patient advocacy groups including the HPV and Anal Cancer Foundation (www.analcancerfoundation.org) founded by the Almada siblings whose mother died of anal cancer in 2010. Other advocacy groups included were the Farrah Fawcett Foundation www.thefarrahfawcettfoundation.org and the Canadian organization A Bum Rap www.analcancer-abumrap.com. Besides its clever name, you can find this organization’s twitter support group at cancer@ABumRap. The organizations all have Facebook pages, which you can “Like” and show your support.
The never-tiring Dr. Joel Palefsky, who is president of IANS and director of the UCSF Anal Dysplasia Clinic, presided over a two-day meeting discussing the launch of the newly NIH-funded Anal Cancer Prevention Study (ANCHOR). Over 5,000 people with HIV will be enrolled nationwide in this 5-year study whose modest goal is determining the effectiveness of diagnosing and treating the precursor lesions to prevent cancer. San Francisco will be enrolling subjects beginning in April.
The conference was the culmination of two decades of work by devoted clinicians and scientists regarding a disease that gets little attention. The ANCHOR study will define the next decade of work. Based on the excitement among the conference attendees, it is clear we are ready to begin.
Dr. Naomi Jay is a nurse practitioner in the department of Infectious Disease at UCSF.