Tristan, Camille, and Justine with their late-mother Paulette, who passed away
from anal cancer in April 2010. (Photo courtesy HPV and Anal Cancer Foundation)
I want to share the story of a group of individuals who have taken a great tragedy and turned it into something positive.
My friend Camille lost her mother to anal cancer last April. Throughout her mother's final months, Camille learned a lot. She saw a lack of resources for anal cancer patients and their families. No fundraising walks to attend. Very few support groups. Little research and development into new therapies. People are not routinely screened for the disease. The standard of care of anal cancer patients hasn't changed for 30 years -- in Camille's opinion it's partially because the disease is so rare and partially because it's incredibly stigmatized.
A few months after her mother's passing, Camille and and her siblings, Justine and Tristan, established The HPV and Anal Cancer Foundation. All three siblings are all in their 20s.
According to the CDC, HPV, the human papillomavirus, causes 99 percent of cervical cancer, 80 to 90 percent of anal cancer, 70 percent of vaginal cancer, 40 percent of vulvar and penile cancers and 25 to 35 percent of head and neck cancers. HPV also causes genital warts.
High risk groups include women with a history of high grade dysplasia, immunocompromised people and men who have sex with men.
The organization aims to educate the public about anal cancer, to address the stigma associated with the disease, to advocate for prevention and improved early screening methods, to provide resources for patients, caregivers and members of the scientific and medical communities, and to invest in research for therapeutic treatments.
You can read an excellent profile of these three remarkable individuals at the New York Times.