It’s HPV Awareness Day, and HPV vaccination is a powerful tool for cancer prevention among adolescents and young adults. Recommended for adolescents 11-12 and starting as early as age 9, HPV vaccination is a necessary preventive health measure for both young boys and girls. We discussed HPV and cervical cancer with Tamika Felder, founder of Cervivor, a non-profit that offers support to those diagnosed with HPV-related cancers and their care team of family and providers and engages in advocacy and awareness initiatives to strengthen vaccination conversations. Tamika, a cervical cancer survivor, joined Unity on our young adult led podcast, FACTSinnated, to share her story.
In 2001, At the age of 25, Tamika was diagnosed with stage IIb cervical cancer, meaning the cancer had spread from the cervix to the tissue around her uterus. She had not received the HPV vaccine because at the time of her diagnosis, it was not yet a recommended vaccine. That recommendation came later, in 2006. In 2001, the standard screening protocol was Pap tests. Having cervical cancer changed Tamika’s life. Tamika shared how, “I didn’t lose my life which I’m so grateful for, but I lost my fertility, and it literally changed my life.”
Learn more from Tamika about HPV and barriers to HPV elimination as well as her experience in becoming a vaccine advocate.
Barriers to HPV Elimination
HPV is the most common sexually transmitted infection in the United States, with most of those infected being in their teens and early 20s. HPV can be spread through vaginal and anal sex, and close skin-to-skin touching. While most HPV infections don’t lead to cancer, some types of genital HPV can progress to be cancerous. This means it’s especially important for all teens 11-12 and as early as age 9 to be vaccinated because we know HPV vaccination = cancer prevention. Widespread misinformation about HPV and the importance of HPV vaccination present limits to its power as a cancer prevention tool. Tamika shared that, “social media is a wonderful tool of dissemination and keeping people together, but it is also a terrible tool when it comes to making sure that the information that anyone can put out there is credible, sourced, and valid information. So, we have to be really careful about the messages that are going out there.” Young people, and their parents, are constantly exposed to health information through social media. Whether the information is based in fact is a different story. Because of this misinformation and disinformation on social media are some of the biggest barriers to HPV elimination.
With data and facts to combat misinformation, and proper screening and testing tools, it’s entirely possible to catch HPV before it progresses. But this effort begins with spreading positive and credible messaging to young people and teens: “At the end of the day everyone wants to do what is best for their child, unfortunately though if you are just relying on social media or what some random person is posting, you are not doing a service to yourself or your child, you’re actually doing a disservice.” Educating yourself through trustworthy organizations, such as Cervivor, or public resources such as those published by the Centers of Disease Control and Prevention, are a great way to discern myth from fact.
One common misconception about HPV vaccination, is that only young girls need it, and the truth meter on that reads: FALSE. Because when the HPV vaccine first came out it was only recommended for women, this led to an incorrect focus about the disease. In her episode, Tamika reiterates the importance of boys being vaccinated for HPV to make sure they don’t fall through the cracks. All young people ages 11-12 and starting as early as age 9 should get the HPV vaccine to protect against the disease and preventive tools such as screening and testing should be utilized to catch cases early on.
Vaccine Advocacy Through Storytelling
Tamika became a vaccine advocate through storytelling, and the power of sharing patient stories. She has dedicated her life to bringing HPV data to life by showing that cervical cancer, and other HPV related cancers, can happen to anyone. Tamika started her nonprofit, Cervivor, in 2005. At the time, stigma contributed to people’s lack of transparency in sharing their survivor stories, but now through sharing resources and evidence-based information Cervivor can bring patients together through hundreds of personal stories and experiences. Tamika says she, “couldn’t be prouder of those brave women who are helping change the narrative surrounding cervical cancer and the stigma.”
Cervivor offers several inspiring initiatives to support survivors, including Cervivor School and Pap Rally and Run. Tamika’s team has also been able to work with legislators and the Cancer Moonshot initiative to ensure cervical cancer patients are adequately cared for. When it comes down to it, Tamika shares the importance of incorporating patient narratives to show what a journey through cervical cancer is really like: “As a 25-year-old woman I didn’t think it was a big deal, that’s where I was wrong. Your health is your wealth and it’s always important.” As a vaccine advocate, Tamika strives to ensure that survivorship is something that speaks to people to reach the goal of eliminating cervical cancer. She hopes to share that young women should make sure they are going and getting screened, and all young people should engage in shared decision-making with their providers to make informed decisions as the co-pilot to their health.
Check out these resources to learn more:
