The biggest drawback to eliminating cervical cancer is the stigma, Tamika Felder told the Lunch and Learn crowd at a recent meeting at Roche Molecular Systems in Pleasanton.
The human papillomavirus, which is sexually transmitted, causes more than 99% of cervical cancers worldwide.
"We need to move past the stigma of HPV," said Felder, founder of Tamika & Friends, which raises awareness about cervical cancer. "We have to get all women access to the latest and best resources."
Felder added a touch of humor as she talked about her diagnosis in 2001 at age 25 when she was a television producer in Washington, D.C.
"To talk about cervical cancer we have to talk about sex, right?" she started off. "And pap smears are not fun. I'm going to let you in on it -- yes, during your lunch."
She'd neglected having regular pap smears, she said, partly because she was busy interviewing presidents and producing her show. Also her body image kept her away from the doctor.
When diagnosed with cervical cancer, Felder immediately sought other opinions.
"Then a doctor said my cervix looked like it was chewed up meat," she related. "My life completely changed. I couldn't think of booking guests on my show anymore. All I could think of was having a radical hysterectomy and then chemotherapy, losing my ability to have children, my life's goals pulled like a rug out from under me."
HPV was seldom mentioned 10 years ago, and Felder found out about it on the Internet.
"When I asked my doctor why she didn't mention HPV to me, she said because everybody gets it," she recalled.
Some strains of HPV clear up by themselves while genotypes 16 and 18 cause about 70% of cervical cancer. A vaccine approved by the FDA in 2006 protects against these two types, and the vaccine is recommended for girls ages 11 through 26 and is also approved for boys.
"Although HPV infection is seen in all age groups, it tends to be highest in the younger age groups and decreases with age," said Dr. Catherine Behrens, director of Clinical Research at Roche Molecular Systems, in a later interview. "The high prevalence in younger women is likely due to the fact that they have more sexual contacts; fortunately, though, they tend to clear it more quickly than do older women."
Eventually Felder tried to get on with her "new normal."
"I created Tamika & Friends so no cervical cancer survivor will ever feel alone," Felder said.
The nonprofit organization educates about cervical cancer and its link to HPV, spreading the message that through prevention and treatment, it can be entirely eliminated.
Roche Diagnostics developed and manufactures the only HPV test that is FDA-approved, which identifies genotypes 16 and 18 as well as 12 other high risk HPV genotoypes, said Behrens.
"I want to remind you that behind every test, there's a woman," Felder told the Roche employees.
Tamika & Friends encourages House Parties of five to teach women about the HPV virus.
"We play games until we feel comfortable enough to ask them to pledge to get a pap test," Felder said. "Then they're empowered to go to the doctor."
Games include HPV bingo and one Felder invented based on Pictionary that is called Sex-ionary.
The group also provides financial assistance for women coping with cervical cancer.
"When I was 25 I had great insurance and a great salary," Felder said. But even the little expenses added up until a friend left a check for $500 on her dresser.
"She wouldn't let me pay it back so I'm paying it forward," Felder said.
Last January, Tamika & Friends converged on Washington, D.C., for Cervical Cancer Day on the Hill. Forty women from all around the country talked about ending the disease and lobbied for more funding to raise awareness. Now January is Cervical Cancer Awareness Month.
"A woman came to the event and said she'd never shared her story, she was so ashamed of her HPV," Felder recalled. "One thing we all had in common was that somehow cervical cancer came into our lives."
Cervical cancer causes 288,000 deaths every year, she said.
"No one should die for this disease," she said. "Thank you and every one of you for what you do.
"Your message was very emotional and very inspiring," an employee told her during a question-and-answer period that followed her presentation. "This type of thing makes us want to come to work."
He said his two pre-teen daughters received their first of the three HPV immunizations but were reluctant to continue. Felder noted that her website, www.tamikaandfriends.org, also has G-rated games for young girls to become comfortable with the process.
The treatment even for early stages of cervical cancer is a radical hysterectomy, Behrens said, although in young women, the ovaries may be spared.
"The treatment for pre-cancerous changes, on the other hand, is much less radical," she added.
It entails removing the abnormal cells by a surgical excision procedure or destroying them by an ablation procedure, such as a freezing or electro-cautery laser.
"Although relatively benign, these treatments are very effective - and this is why screening for pre-cancer is so essential," Behrens said.
"The war on this cancer could end," Felder emphasized. "We have the tools to do it."