On April 7, 2014 I had the honor to represent the Farrah Fawcett Foundation as their patient representative at the AACR, American Association of Cancer Research Annual meeting in San Diego.

I participated in the symposia - the President’s Cancer Panel Report “Accelerating the HPV Vaccine Uptake: Urgency for Action to Prevent Cancer” – Scientific Advances to Help Achieve Policy Goals.

Nearly 1 in 4 people in the U.S. are infected with at least one strain of the human papillomavirus. HPV related head and neck cancers are on the rise. Yet, vaccines that prevent infection with the two most prevalent cancer causing types are substantially underused.

Worldwide, every year, more than 600,000 new cancer cases are caused by HPV, an infectious disease. HPV vaccines provide an effective, safe means of prevention. 

In the U.S., only one-third of adolescent girls and less than 7% of adolescent boys have received all three recommended vaccines.

The CDC estimates that increasing the HPV vaccination rates from the current levels to 80% would prevent an additional 53,000 future cervical cancer cases in the U.S. among girls who now 12 years old or younger. 

The Presidents’ Cancer Panel finds underuse of HPV vaccines a serious but correctable threat to progress against cancer.

The vaccine uptake is a function of initiation - the first dose, and completion - getting all three doses.

Missed opportunities on the part of the provider to communicate with both parents and children, both boys and girls, is the most important reason the U.S. has not achieved high rates of uptake. The committee recommended that Providers discuss the vaccine, that receiving the vaccine doses should be made more convenient and also that health care payers should reimburse for this cancer vaccine

Widespread adoption of the HPV vaccine requires comprehensive, targeted interventions aimed at providers, parents or other caregivers and at the adolescents themselves.

Later that day, the press event Stand Up To Cancer and the Farrah Fawcett Foundation, along with the AACR, SU2C’s Scientific Partner, with an additional gift from the HPV and Anal Cancer Foundation, announced the formation of a new research team dedicated to HPV – related cancer.

Ellis L. Reinherz, M.D., Ph.D, chief of the Laboratory of Immunobiology at Dana-Farber Cancer Institute, Boston and Robert I. Haddad, M.D. disease center leader for head and neck oncology at Dana-Farber, received a 1.2 million dollar grant.

They will lead the research to develop new vaccines and immunotherapeutic approaches for treatment of patients with HPV-associated cancers, including head and neck, anus and cervix.

“Our project involves the development of vaccines that stimulate immune cells to attack HPV-driven cancer cells,” said Reinhertz. “While we have vaccines to prevent HPV infection from taking place, these vaccines will help attack the cancers once they have already developed.”

Alana Stewart, president of the Farrah Fawcett Foundation spoke of her friend’s struggle with anal cancer. Of the research Stewart said, “I know that Farrah would be very pleased to see this project going forward.”

My presence at both events was to give a real face to HPV related cancers and to tell my personal story.

With approximately 4 minutes for each presentation and about 10 pages of notes, I could have spoken for hours. In the end what I said came from my heart and experience and the experience of other survivors whom I’ve gotten to know. I tried to tell our story.

I didn’t need to tell the researchers that HPV related cancers are everyone's problem.

“If this could happen to me, this could happen to anyone.

"There’s this view that people with HPV associated cancer did something wrong. These cancers grow in inconvenient and sometimes embarrassing places. I call it the yuck factor. As a nurse, the body has no places like that for me. Maybe that’s why I’m alive today. I lived a life of prevention. Yet, a tumor grew. How can we pick these up earlier?”

I told those assembled for the President’s Report, that I had been a polio pioneer in the mid-50s. In those days polio was visible and scary. My parents signed me up to be part of a double-blind study to test the vaccine. Can you imagine that happening today?

Perhaps, if people in the U.S. could see the ravages of HPV related cancers – hear the stories of lives forever altered, perhaps we would be eager to see to it that our sons and daughters are vaccinated against cancer.

At one end of the day was the hope of prevention, at the other the hope for the future.

“I am lucky to be alive and am grateful for the opportunity to speak out. Perhaps some day prevention and early detection won’t be a matter of luck.”

Dr. Reinherz  shared some of his thoughts about what my presence meant.

“Advocacy is extremely important. We need to rid society of the mythologies and bring awareness and truth. …funding to do science will be greatly helped via thoughtful commentary, offering a patient’s personal perspective. It truly takes a village and we each have a part to perform to conquer this dreadful disease.”

Take it to heart. We are all important in this struggle.

What is being done to get the word out about the HPV vaccine? And how is the message being received?

The medical community and health officials promote vaccines as the greatest achievement in modern medicine, yet a growing fear still exists over vaccine side effects. A certain amount of skepticism is normal, but once relevant data is presented, why does the skepticism persist?

Resistance to the HPV vaccine has some of its origins in a mistrust of the relationship between the medical community and the pharmaceutical industry.

Critics assume someone must be gaining financially. Also, news reports and information on the Internet are designed to pique interest not clarify cause and effect vs. correlation.

Denial is a human defense that is less available to members of the medical and public health communities. Someone who has never seen polio sees no need for the vaccine. A Ventura California Public Health nurse recalled when she was a child, there was a boy in her neighborhood who was paralyzed by polio. She reminds resistant parents of diseases that exist, even though most people would rather not think of them.

HPV related cancers fall into that unseen group. The same nurse reports that acceptance of the vaccine was slow at first, because initially, “There was a lot of misinformation out there.” It can be difficult for the parent of a 13 year-old girl to imagine the day when the child will be sexually active. Recently, a mother refused the vaccine. “If she’s a virgin until she gets married, my husband doesn’t think she’ll need it.” the nurse pointed out that perhaps the girl’s husband wouldn’t be. The child got the vaccine.

A Pediatric Nurse Practitioner in Southern California strongly recommends the vaccine. “I’m all about prevention and alleviating suffering.” She approaches the parents with direct, easy-to-understand language. “After your child’s exposed, the horse is out of the barn. You won’t know until it’s too late.”

“It prevents cancer,” she tells them. She reminds the parents that the onset of cervical cancer affects the child bearing years. She mentions penile cancer, anal and even references Michael Douglas’ recent oral cancer.

Neither nurse reported any serious side effects beyond dizziness and local muscle soreness. The Nurse Practitioner says that 30% of her teenagers want the vaccine. "The resistance of the others has more to do with injection phobia than fear of adverse effects."

The mother of two teenage boys living in South Carolina told me that her decision to vaccinate was directly related to her trust in her pediatrician. She added that her 15 and 17 year-olds knew more about the vaccine than she did.

The mother of an 8 year-old girl who lives outside of Sau Paulo, Brazil, credited her government and their public service campaign for her knowledge of the importance of the vaccine. She says that in Brazil the vaccine will soon be covered, but at this time for girls only.

Another mother of an 11 year-old girl living in Los Angeles explained her acceptance of the vaccine this way. “You can read things online, but the parent need someone they trust.” In her case her “older, conservative pediatrician” explained, “it’s a vaccine to prevent cancer. That’s a no brainer.”

Public Health campaigns affect acceptance, but those who provide direct care should not underestimate their influence. Awareness is spreading, but it is the one-on-one interaction that can be a countervailing force against scare tactics and cynicism.

Prevention requires information, affordability, but above all trust.

Mary-Jo Murphy, MS, RN, CDE

Recently, I accompanied a friend to her doctor’s appointment. Over a year ago, she had been diagnosed with diabetes, my specialty. She is what Dr. Jerome Groopman and Dr. Pamela Hartzband refer to in their book Your Medical Mind, as a doubter. Over the past year she reluctantly embraced treatment. With medication and life-style changes she has lost 30 pounds and returned her Hbg A1C (a blood test that predicts complications related diabetes) to well below recommended levels. She’s a success story. So why was I not surprised when she declined to receive the flu and pneumonia vaccine that her doctor recommended?

Because, as a doubter, she’s also a profound skeptic. She questions how much benefit a therapy really offers and what could be the harmful consequences.

I’m what the book calls a believer. I approach my options with a sense that there is a successful solution for my problem somewhere.

The authors also define people as maximalists and minimalists. A believer can shun high-tech intervention and have a strong belief in the healing power of nature. Or a believer can embrace the latest technology modern medicine has to offer. If the person is a maximalist, they believe that more treatment is the best approach and that doing less is shortsighted. A minimalist will embrace only such treatments as are absolutely necessary. Doubters are usually minimalists. That’s my friend. We become doubters because of various life experiences – we saw someone suffer from  too much care, the wrong care or care that feel short of expectations.

Groopman and Hartzband tell us that another powerful influence on our thinking is the “focusing illusion.” When considering a decision about a medical treatment we try to focus on the future and a particular aspect of our life that would be negatively affected by the proposed treatment. What we might lose becomes the main factor in our decision-making. The book validates the difficulty many of us face in the health care arena – our doctors’ recommendations, dissenting expert opinions, confusing statistics, sensational media reports, our friends’ advice, Internet claims, and drug company ads. Conflicting information pulls us back and forth.

That’s how we make health decisions for ourselves but what about for our children? Two hot topics in the news caught my attention recently: cholesterol screening for children and the debate raging over the Center For Disease Control’s recommendation for boys 11 and 12 to receive the HPV vaccine. Both decisions force a parent to look into the future, a future that they may not even live to be part of, but which their decision will undoubtedly affect.

In one case, the testing for cholesterol, the parent can find out if their child is at risk for heart disease. Months ago on CBS news, Dr. Holly Phillips stated that 12.5 million kids in our country are obese, but not all have high cholesterol. The testing will give parents a heads up, so that they can intervene with healthful diets and exercise before changes to the blood vessels start occurring. To find out your child may have a higher risk of blood vessel disease may be disturbing, but it’s a warning that could lead to positive changes that alter the future. As I said to my friend when she was having her blood drawn  to see how her diabetes was doing, “It’s information. It’s not a judgment; it’s just information.”

Driving on the freeway the other day I saw a billboard that read: “He’s off to college. It’s too late to talk about alcohol.” How true! We parents have our chance to speak and be listened to before our kids hit puberty. After that, we’re out; it’s their peers.

So what in our medical mind allows us to process the yucky subject of a vaccine to prevent a STD? How do you look into the eyes of your prepubescent son or daughter and explain that they, as well as over 50% their friends could someday be infected with a virus that causes: oral cancer, cervical cancer, penile cancer, anal cancer and oral cancer? How do you explain the need for this vaccine when 11-year-old boys think that girls have “cooties” and girls their age think that boys are “gross.”?

How about telling them that the vaccine they are receiving prevents cancer caused by a virus? Now, you may have to explain what cancer is, maybe even what a virus is. I suppose it’s possible that an 11 year old will press for details as to how the virus is transmitted. Good. In that case you, and not their peers, get to be the one to explain. Remember though, it’s always good to start simple and only answer the question asked.

I’m reminded of the story of a child who inquired, “Mom, where did I come from?” Figuring the time had come, she took a deep breath and explained the birds and bees in great detail. The kid looked confused. “No, I mean; one of my friends said he was from Chicago. I was just wondering where I came from.”


http://www.latimes.com/health/boostershots/la-heb-promiscuity-hpv-vaccine-20121015,0,5783319.story?track=rss&utm_source=dlvr.it&utm_medium=twitter&dlvrit=53001