Katie Allen remembers sitting on the bathroom floor with a soapy washcloth, scrubbing her knee until it bled. It was the first day of kindergarten and, afraid someone would see a tiny birthmark that embarrassed her, she tried to wash it off.
Allen, now a senior at Tulane University, could still feel that cold floor when she wrote, "Now I have this secret inside my body that I'm embarrassed to share with my friends, my parents. How can I look them in the eye when there's so much I'm not telling?"
Allen, not her real name, records most of her thoughts in a journal now, part of what she describes as an emotional cleaning. She finished her entry: "I feel like my body isn't wholly mine anymore, like someone put something inside that I didn't agree to. I'm scared that this will affect all of my relationships for the rest of my life."
She is infected with the human papilloma virus (HPV).
HPV is the most common sexually transmitted disease in the United States and the major cause of cervical cancer worldwide. Half of the sexually active population is infected at some point. HPV often goes away on its own, or the body's immune system prevents it from doing any harm. But sometimes the virus survives for years and converts normal cells into cancerous ones. The infection can affect the genital area of men and women as well as the lining of the vagina, cervix and rectum. A hundred types of human papilloma virus have been identified. HPV-6 and HPV-11 are associated with most external genital warts. HPV-16 and HPV-18 account for most abnormal Pap tests (a microscopic examination of cells taken from the cervix) as well as cervical cancer. These four types are responsible for 70 percent of cervical cancers and 90 percent of genital warts.
An athlete and honors student, Allen met her boyfriend last fall and they fell in love. He was honest about having genital herpes, a sexually transmitted disease caused by the herpes simplex virus. "I immediately became guarded about my health and super cautious in our sexual relationship," Allen says.
As a precaution, she went to the Tulane clinic for a herpes test. While waiting a week for results, Allen experienced a burning sensation when she urinated. Sometimes it lingered and turned painful. She found several tiny, white bumps in her genital area and suspected herpes. Then the clinic called to tell her that her herpes test was negative. Confused and concerned, she returned to the clinic, and the physician told her that she had the genital warts associated with HPV and that he'd found a lesion on her cervix.
Allen was stunned. She knew almost nothing about HPV, except that it was sexually transmitted. She thought she'd heard something about a vaccine. Scared, in tears and feeling vulnerable, Allen scoured the Internet, but found little practical information about what HPV is, how you get it, how to avoid it or what to do if you're infected. After several keyword searches, she found a link to Gardasil, a vaccine that protects against most genital warts, pre-cancerous lesions and cervical cancer. The Web site said the Food and Drug Administration had already approved the vaccine. When she saw the date, June 6, 2006, Allen felt sick. She wrote in her journal, "We already have an effective vaccine against HPV and I didn't know. You'd think because of my age, because of my gender, because I'm living in an academic environment, that it would be everywhere. Had it been better publicized, I would have had that vaccine. I could have saved myself from this."
The clinic referred Allen to Dr. Rachel Reitan, assistant professor, obstetrician and gynecologist at Tulane, and a member of the team that conducted research on the HPV-16 portion of the vaccine at the University of California-Irvine Medical Center. Reitan, who was co-investigator to chief investigator Dr. Bradley Monk, says, "Of the 26,000 who participated in the study and received the HPV vaccine, no one developed HPV."
Monk says that studies are being conducted to determine whether the vaccine will prevent HPV infection and disease in males as well. He says that vaccinating males might prevent genital warts and rare cancers in men and have indirect health benefits for women by controlling the spread of HPV. "We need to move toward a paradigm where this is a universal vaccine," Monk says. "To have a vaccine that prevents cancer and not use it would be one of the greatest tragedies."
Reitan performed a colposcopy on Allen. Using a scope, the doctor examined a lighted, magnified view of her cervix. A biopsy revealed atypical squamous cells, a pre-cancerous condition. Allen was told that with both genital warts and an atypical lesion, she was infected with at least two types of HPV.
"Why do young people push things until they get caught, press it to the limit instead of being humane?" Allen wrote in her journal. "Why do they risk getting caught later in order to get what they want at the moment? Young adults are dealing with serious disease like little kids."
"Cervical cancer is, in many ways, a young person's disease," Reitan says. "That's why I'm surprised how little is known, particularly in a college community. I wonder why they don't talk about it. Students come in here with an abnormal Pap and I tell them they have HPV and that they need a colposcopy and biopsy. It takes a little while for it to sink in, for the light bulb to go on: I could have cancer. They are devastated. Without exception, I witness the same emotional aftermath: Why don't I know. Why didn't I hear?"
Recent studies show the infection rate in women under 25 is between 28 percent and 46 percent. In the population of 15- to 24-year-olds who are sexually active, there are 9.2 million infected. Of the 6.2 million who contract the disease each year, 74 percent are in this age group. Twenty-million people between 15 and 49 years old have HPV. Reitan says that by age 50, 80 percent of all women have contracted a genital HPV infection.
The FDA approved Gardasil for females from 9 to 26 years old. The Advisory Committee on Immunization Practices recommends vaccinating girls 11 and 12 years old and allows for vaccination at 9, and between the ages of 13 and 26. Recommendations become policy at the Center for Disease Control once they are accepted by the director, the Secretary of Health and Human Services, and are published in the Morbidity and Mortality Weekly Report. Clinical trials are under way on women older than 26. Ideally, Reitan says, the vaccine should be administered before females become sexually active, but that sexually active females who are uninfected would also receive the full benefit. Those already infected, like Katie Allen, would receive full protection from only the types they have not already contracted.
According to the World Health Organization, cervical cancer is the second most common cancer among women. Two types of cells on the cervix can become malignant: squamous and glandular. Recovery depends on the stage of the cancer, what parts of the cervix are affected, whether the cancer has spread to the lymph nodes, the size of the tumor and the type of cervical cancer. Treatment options depend on the stage of the cancer, the size of the tumor, and the patient's desire to have children. Current types of treatment include radiation, surgery and chemotherapy -- or a combination of these treatments. Those who want more information about cervical cancer can visit the National Cancer Institute's Web site at www.cancer.gov/clinicaltrials.
Although most women with cervical cancer have HPV, Reitan stresses that most women with HPV will not get cervical cancer. Still, Americans spend about $3.6 billion to follow up on abnormal Paps and the treatment of pre-cancerous lesions on the cervix. The United States spends another $150 million a year on the treatment of cervical cancer and about $170 million on the treatment of external genital warts.
Cervical cancer will still strike about 11,150 women this year. An estimated 3,670 will die. Worldwide, about 300,000 will die from it.
"This vaccine is more than a medical breakthrough," Reitan says. "It's the first time we've had a vaccine that prevents cancer."
When Allen talked to her boyfriend, he told her he knew nothing about the HPV virus that he carried. But after several discussions, he did remember that his ex-girlfriend had to have a biopsy of her cervix, but that he didn't know if the two were related. If they were, he had not put two and two together.
Allen felt confused. "What is this funny feeling in my stomach when I think about him and what he's given me?" she wrote in her journal. "It's uncertainty. It's worry. It's wanting and not wanting to be close. It's not knowing how to talk about it."
She finally opened up to her friends and found not only a support system but that she wasn't alone. Allen says she can name at least 10 women in her life that are infected. "I've found out that HPV is really common, yet everybody is afraid to talk about it," she says. She decided to do something to change that.
"I feel powerless and powerful at the same time," she wrote recently. Something's already been done to me, so now something has to be done about it."
Allen has decided not only to be proactive about her diagnosis and treatment, but also to educate other people. Less than two months after her diagnosis, she talked with the Tulane administration about increasing HPV awareness on campus. Right now her role will be that of spokesperson only. "I'm not ready to be known around campus as the girl with the genital warts," Allen says. "But I am working to become the girl around campus who advocates educating everyone about those genital warts, the HPV virus and the vaccine."
Reitan's mission is more far-reaching: to get the word out locally, educate the population nationally and bring global attention to HPV and the vaccine.
BOX: HPV at a Glance • Researchers have identified 100 types of HPV.
• HPV-16 accounts for 54 percent and HPV-18 causes 13 percent of cervical cancers worldwide.
• HPV-6 and HPV-11 are most often associated with genital warts.
• At least 80 percent of women will acquire a genital HPV infection by the time they are 50 years old.
• It is estimated there will be 6.2 million new HPV infections each year and 20 million active infections at any given time.
• About 9.2 million sexually active individuals between the ages of 15 and 24 are infected with HPV, and 74 precent of new HPV infections occur in this age group.
• There are 1 million new cases of genital warts diagnosed each year, and Americans spent $170 million annually to treat them.
"We need to move toward a paradigm where this is a universal vaccine. To have a vaccine that prevents cancer and not use it would be one of the greatest tragedies."
Dr. Bradley Monk, chief investigator of an HPV vaccine study