Sunday, June 15, 2014

HPV Awakening: One Woman’s Battle against Silence and Ignorance

Not long after 25-year-old Tashia Ameneiro became sexually active, her body began feeling out of balance. She lost weight, developed back pain and noticed her period had changed.  So she made an appointment with her gynecologist, who diagnosed a cancer-causing strain of human papilloma virus, or HPV, a sexually transmitted infection.  She was treated and although she does not need to worry about developing cervical cancer, she is furious that she was infected in the first place.

What cultural norm gave Tashia’s boyfriend, who knew he was infected and contagious, the audacity to keep this information from her? Why is ignorance about HPV so pervasive?     How can others be protected from the pain and worry that Tashia experienced?

The answer is HPV Awakening, the fledgling organization that Tashia founded in 2011 to educate others about HPV and to advocate for better public health policies regarding all sexually transmitted diseases (STDs).

In schools, at health fairs, and wherever else she can get a platform, she spreads the word about HPV, a group of sexually transmitted virus strains that grow on the various soft, moist surfaces of the skin such as the tip of the penis, the cervix, and the throat.  HPV is so widespread, Tashia is quick to advise,  that almost every sexually active person will have it at some time. In most cases, it is silent, innocuous and becomes inactive within two years.  But some strains, notably HPV-6 and 11, cause non-cancerous genital warts, which can cause itching, burning, pain and emotional distress but which can be treated with medication and/or surgery. Twelve strains can develop into cancer.
HPV Awakening educates residents at The Lodge homeless shelter
In addition to education, HPV Awakening is focused on advocating for better sex education and better public health policies. Relating an incident where two middle school students were found engaged in fallatio, Tashia noted that syphilis is rampant, yet parents and teachers tend to be uncomfortable talking about sex.  Tashia says, “I’ve been in conferences where people would rather talk to you about suicide than talk to you about STDs. STDs are extremely taboo.”  

And so she pitches the merits of making screening for STDs, including HPV, a routine part of every annual check-up.  If everyone were routinely tested, she argues, the stigma surrounding testing would disappear, asymptomatic but potentially dangerous infections would be diagnosed and treated, and the spread of disease would be curtailed.

Tashia, who works full-time for an HIV/AIDS organization, is a woman on a mission.  Working on HPV Awakening only in her spare time, she put together a board and completed the paperwork to register as a 501 (c) (3) not-for-profit organization. She arranged for the law clinic at Florida International University to prepare bylaws, articles of incorporation, and other required papers.  She recruited her mother, now retired, to do community outreach and consulted with Heather Green, who devised the HIV/AIDS curriculum for the Miami-Dade County schools.  She underwent the training for the school speakers’ bureau, got her materials approved by the school board, and began lecturing in the public schools.
HPV Awakening distributes free condoms in packets adorned with its logo
She also began appearing at health fairs. In addition to local, mainstream fairs, she staffs a table at Exotica, an annual expo of love and sex, and the Anime Festival Orlando, a celebration of Japanese cartoons and animation that attracts many teenagers.  She expanded her lecture arena, appearing at colleges and universities.  She added in-service trainings for organizations like Pridelines and the Alliance, two LGBTQ support organizations. She established a partnership with Planned Parenthood, which provides free condoms and free STD testing.  And she built a social media presence.

In the process, mainstream media interviews came her way:  local public television and CNN Spanish. Largely as a result of her Facebook page emails began arriving from all over the world: India, Philippines, Russia.  Most recently, individuals and couples have begun coming to her privately for information: How can an HPV-positive person protect his partner who is negative? What are the benefits and limitation of the HPV vaccine?[i]  Are there foods that might combat the virus? How effective are male condoms?  What do you think about female condoms? Artificial insemination?

Tashia has accomplished all this in her spare time and with virtually no money.  She does not charge for her counseling or her lectures.  She has successfully negotiated to have fees at the events where she tables reduced or eliminated.  She estimates the work contributed by the FIU law clinic is worth about $5,000.  She distributes condoms that she gets for free from the health department and Planned Parenthood. With no office and no paid staff, her only regular expenses are the HPV labels she affixes to the condom packets she distributes and the organization’s brochures, which she prints herself from her home computer.  Tashia says she plows as much money as she can into the organization and admits she needs to learn how to grow the organization and raise funds.  At present she is working to raise $400 needed to properly register her 501 (c) (3).

HPV Awakening
P.O Box 940685
Miami, FL 33194
786-260-2092






[i] There are two approved vaccines for protection against HPV.  Six-year studies on thousands of people world over, the longest available, show the vaccines to be safe and effective with no signs of weakening at studies’ end. Gardasil and Cervarix both prevent HPV-16 and 18, which cause most but not all cervical cancers.  Gardisil, but not Ceravix, also protects against HPV-6 and -11, which are responsible for 90% of genital warts. For more information about HPV vaccination, see http://www.cdc.gov/std/hpv/stdfact-hpv-vaccine-young-women.htm and http://www.cancer.org/cancer/cancercauses/othercarcinogens/infectiousagents/hpv/humanpapillomavirusandhpvvaccinesfaq/hpv-faq-is-hpv