As we start 2013, we will continue to raise awareness about anal cancer and HPV and work with our community to address disparities in health care and support for people living with these diseases. We also want to take a moment to honor our colleagues in the fight who have passed away this year. Albeit on blogs or in books, these people spoke openly about their struggles and fought for the recognition that people with anal cancer deserve. Their families are in our thoughts and hearts.
In particular, we remember our friend and fellow advocate Bonnie Diraimondo who passed away from anal cancer and HPV-related complications in March 2012. Bonnie has been a prolific HPV advocate and author of the book Any Mother’s Daughter – One Woman’s Lifelong Struggle With HPV. She maintained the HPV Support Network website which became a nonprofit shortly before her death. She was a strong voice in shaping the HPV educational awareness movement through the use of internet and social media resources.
When we met with Bonnie in Berlin last September, she spoke about her frustration with the medical community, the lack of awareness and the inaccuracy of health information that some health practitioners provide regarding HPV diagnosis and treatment. It was inspiring to meet with Bonnie right after she took the stage as a guest speaker at the 2011 HPV Conference in Germany; she was extremely proud to be featured as the first patient speaker in the Conference’s history. We recall her enthusiasm speaking honestly about HPV and the importance of being your own advocate in the treatment process. Bonnie fought long and hard to dismantle the stigma surrounding HPV and anal cancer, and she will continue to be an inspirational thriver that patients and families of patients like ours looked up to for speaking out about a silenced and misunderstood disease.
In her book, Any Mother’s Daughter, Bonnie states, “when it comes to your health, however, you must be an active participant, questioning everything regarding your diagnosis, your treatment, and your prognosis. Without question, seek a second opinion to verify the diagnosis and suggested treatment if it is anything other than a minor situation.” From the Foundation’s experience speaking with patients affected by HPV-related malignancies, it is extremely crucial to supplement the knowledge your healthcare practitioner provides with additional medical resources and information. At this year’s HPV conference, we missed Bonnie’s presence and commitment to sharing her very personal struggle in hopes of addressing the pitfalls in HPV diagnosis and treatment.
Bonnie was a strong advocacy partner in helping the Foundation successfully petition the CDC for a routine male HPV vaccination recommendation. Bonnie’s legacy continues to live on and inspire allied organizations to further her work by highlighting the link between HPV and cancer and disseminating information, support and resources on the topic.