ALABAMA (ADPH/WIAT) — The Alabama Department of Public Health (ADPH), working in conjunction with Auburn University, has conducted a review of cases of uveal melanoma among former Auburn students and employees. Based on the best available information, the study did not identify a cancer cluster among Auburn students and employees from 1980 through 2017.
Uveal melanoma is a cancer of the eye involving the iris, ciliary body, or choroid, collectively referred to as the uvea. According to the Ocular Melanoma Foundation, there is no known cause for uveal melanoma. This disease occurs more frequently in whites than any other races. According to the Alabama Statewide Cancer Registry (ASCR), the annual incidence rate in Alabama among whites is 0.7 per 100,000. From 2006 through 2015, there were 316 cases of uveal melanoma among Alabama residents for an average of 31.6 new cases each year.
This study the ADPH released comes after a previous study that shows five people who were either students or who worked on the campus during a specific time have been diagnosed with Uveal Melanoma. That’s five cases among thousands for a disease that typically affects five in one million.
Dr. Marlana Orloff is a Uveal Oncologist at the Sidney Kimmel Cancer Center. She’s investigating patient accumulations of Uveal Melanoma in Alabama and North Carolina.
Dr. Marlana Orloff told CBS 42 they’ve learned lessons from a similar investigation in Huntersville, North Carolina they conducted where more than 20 young women were diagnosed with Uveal Melanoma within a 15-mile radius. Their investigation in North Carolina is ongoing.
ADPH was provided a list of Auburn University students and employees that had reported being diagnosed with this disease. ADPH reviewed medical information for these individuals to verify the cases. Once the cases were verified, Auburn University verified the attendance or employment of each individual. Auburn University then provided a population file for ADPH to calculate the expected numbers of uveal melanoma cases. The analysis was conducted for students who attended or employees who worked for Auburn University at any point from 1980 forward. The study included confirmed cases that were diagnosed any point between 1990 and 2017. Seventeen people, 9 males and 8 females, met the criteria to be included.
Allyson Allred is one of the women CBS 42 first featured in an investigation of an accumulation of women who attended Auburn University at the same time and who were diagnosed with this rare cancer, Ocular Melanoma, which is usually found in 5 in 1 million people.
Allred provided the following statement in response to the ADPH release stating there is no uveal melanoma cluster in Auburn.
“ I understand there are certain criteria that has to be met for them to call it a cancer cluster.The number of people that have been diagnosed with Uveal Melanoma that had connections with Auburn is significantly more than what the department of health has reported, which is 17 . When actually Over 3 dozen people have reported to our task force that they lived in Auburn and have Uveal Melanoma. I would be interested to find out why Auburn University and the Alabama Department of Health have not reported this number. The bottom line is many of us with this disease are fighting for our lives. I am currently in Philadelphia for 3 months getting treated at the Thomas Jefferson University Hospital where they specialize in treating Uveal Melanoma. My cancer has spread from my eye and metastasized to my brain, liver, lung, kidney, breast, ovary, thyroid and several other places. There is no known cure for Uveal Melanoma and that is why we are raising money at www.eyepatchchallenge.org to determine what the common denominator is among the former Auburn students who have Uveal Melanoma. The fact that Auburn University and the Alabama Department of Health are not calling a cluster doesn’t change the fact that too many people are dying from this disease and we must find the cause so we can find the cure. Dr. John Mason in Birmingham is the only Uveal Melanoma specialist in Alabama and he will lead the research project which will cost approximately $200,000. We have raised a little more than $60,000 and anyone who would like to help us find the cause of this cancer can make a donation by going to www.eyepatchchallenge.org and make a tax deductible contribution.”
“Auburn University officials have been incredibly helpful throughout the entire process that began this spring,” Justin T. George, director of cancer epidemiology, ADPH ASCR, said.
Study findings include the following:
· Based on Alabama rates and the population file provided by Auburn University, the expected number of cases in this time frame is 8.6 for white females and 13.6 for white males. In each instance, the expected number exceeds the number of observed cases.
RELATED: Allies for Allyson: GoFundMe page to help Auburn Ocular Melanoma patient
· The Standardized Incidence Ratio (SIR), a measure of the observed cases divided by the expected cases, was less than 1.0 for each group indicating less than expected occurrences of cancer. The SIR was not found to be statistically significant.
Health care professionals should advise anyone who may have concerns about having uveal melanoma to schedule an eye exam with an optometrist or ophthalmologist.
In addition, Ashley McCray of the Auburn Ocular Melanoma Group released the following statement in response to the CDC’s report that there is no evidence of a cluster of uveal melanoma in Auburn:
“We appreciate the work and time that Justin George and the Alabama Department of health have put into their analysis. However, we always knew that this would not meet the definition of a cluster. This does not change our course of action nor does it change the course of action by the University. As found in the statement released by the University today, “Regardless, Auburn will continue to partner in research efforts toward identifying the cause or causes of uveal melanoma and possible treatment or cure.”
In addition, through this analysis we have learned it is difficult to verify cases through state cancer registries. A number of the patients in this cohort were diagnosed out of state. The Alabama Department of health has acknowledged that some of the patients who were reported to the state were not able to be verified due to flaws in the cancer registry systems. This is an issue we were aware of at the onset.
On behalf of the 45+ people who self reported their diagnosis and affiliation with Auburn, we resolve to continue our efforts to work with State and National Researchers to determine if there is anything that links us together or any genetic or environmental causes to this rare cancer.
Therefore, if you would like to contribute to the research efforts you can donate at eyepatchchallenge.org“