This week, Mark Hefti left behind the sun, sand and palm trees of his Los Angeles home for the Midwest tundra for screenings of his new documentary, “Someone You Love: The HPV Epidemic,” including one Nov. 24 in La Crosse But even if he was going to the Arctic Circle for a screening, it still wouldn’t match the journey he’s been on the past three years in making the film.
It started with a conversation Hefti had with a woman who worked doing education about cervical cancer and HPV – the human papilloma virus. In the course of their conversation, they decided it would make a great topic for a documentary, and coming from him, that wasn’t just small talk.
Since graduating from Onalaska High School in 1993, Hefti has become an award-winning producer and screenwriter as well as amassing credits acting on stage and screen. Not only that, his best friend since they met when Hefti was in college in Hawaii is Frederic Lumiere, an award-winning filmmaker with a lot of experience making documentaries. The woman agreed it would make a good film and one thing led to another and her organization underwrote the production of “Someone You Love.” Hefti took the role of writer, Lumiere the role of director and they both served as co-producers.
The past three years have been a major learning experience and emotional rollercoaster for the two. For one thing, Hefti needed to get up to speed on HPV and cervical cancer. “I knew practically nothing,” Hefti said by phone from California. “I had heard of HPV and had heard of women who had abnormal pap smears, but I never knew why that happened.”
Hefti and Lumiere soon learned that HPV is the most common sexually transmitted infection in the world, with an estimated 80 percent of the population having at least one infection by the age of 50. The vast majority of people will have no complications from their infections, but HPV also can be deadly. Two strains of HPV cause almost all cases of cervical cancer, which kills about 275,000 women worldwide every year, and HPV has been linked with other forms of cancer.
“It’s a very complex virus,” Hefti said. “It’s so easily transmitted because it’s a skin to skin virus. … People just don’t realize how easily it’s transmitted.”
The first vaccine for HPV was approved for use in the United States in 2006, but not quite 40 percent of girls ages 13-17 have been vaccinated. Since the government began recommending the vaccine for boys in 2011, about 35 percent of boys have been inoculated at least once.
When they started the documentary, Hefti said they didn’t really have a stance on vaccination, which some view as promoting promiscuity because it removes such a potent consequence. “It seemed like something that could be a good idea, but we didn’t have any details,” said Hefti.
“Every expert we interviewed was pro vaccine,” Hefti said, including Harald zur Hausen, a German researcher who won a Nobel Prize for confirming HPV as a cause of cervical cancer. “It’s the only weapon we have to eliminate it over the long term.”
But, he added, “we try not to make it seem like it is a commercial to go get vaccinated. … We’re trying to make (HPV and cervical cancer) something people can talk about and make it a discussion they can have with their kids and loved ones.”
Hefti also wasn’t aware in the beginning that there was an element of shame and stigma that went with cervical cancer. The stigma is less than it once was, but it’s still there, as Hefti and Lumiere discovered when they began interviewing women who had a diagnosis of cervical cancer. One woman’s husband blamed her so bitterly for her cancer that their marriage broke up. He blamed her, even though he was almost certainly the source of the HPV infection, though he’d never shown any signs of infection.
“It’s really hard to pinpoint where you got it,” he said.
In making “Someone You Love,” Hefti asked the questions while Lumiere took care of filming. In a way, Hefti said, he was learning on the fly how to be a journalist. All his previous film writing projects had involved creating characters and making up things for them to say. “This was a whole different process because your ending is being unfolded as you’re working,” he said.
In “Someone You Love,” Hefti and Lumiere focus on five women touched by cervical cancer. One is a woman struck down in her early 20s before filming began, and her parents poignantly tell her story. Three are survivors who have gone through much suffering to fight cervical cancer, including the woman whose marriage was destroyed. The fifth woman was supposed to be the story of another survivor, a tale of triumph, but just as they were getting ready to wrap up filming, they learned that her cancer had returned and things weren’t looking good for her.
With her encouragement, they continued to film her as she lost her battle, as she wasted away to nothing. “I don’t think I could have somebody with a camera in my face as I’m struggling to survive,” Hefti said. “She could barely talk. It was heart-wrenching.”
There was a sixth woman they interviewed for “Someone You Love” whose life was claimed by cancer, and her story, her life and death, was so compelling that Hefti and Lumiere decided she needed a film all her own. They met Michele Baldwin, a 45-year-old mother of three, just a few weeks before cervical cancer claimed her life. She gave them full access in documenting her death, and they also filmed her open pyre funeral in which her body was burned in front of loved ones in the chill mountain air in Colorado, the heat from her pyre giving them warmth.
As remarkable as her death was, her reaction to her terminal diagnosis was even more amazing. Rather than seeking comfort and solace in familiar surroundings, Baldwin set a world record, paddleboarding 700 miles on the Ganges River in India as she came to terms with her terminal diagnosis and to draw attention to HPV and cervical cancer in the developing world, where so many women don’t seek medical attention until they have a visible tumor.
The epic Ganges trip took place before Hefti and Lumiere met Baldwin, but her journey was filmed by a professional cameraman, and Baldwin’s family turned over the footage to Hefti and Lumiere, who are on the homestretch of their work on a documentary about Baldwin called “Lady Ganga,” which Hefti hopes to release next June.
“She did something truly remarkable and selfless,” Hefti said. “‘Lady Ganga’ is really about two things. It’s about spreading awareness globally on this issue, and it’s really going to be also about her story and how much you can accomplish in this life.”
To get funding to complete “Lady Ganga,” Hefti and Lumiere launched a Kickstarter crowdfunding campaign, setting a minimum goal of $50,000. Within five days they had raised $100,000, after which they set an “stretch” goal of raising $500,000, which would allow them to travel to India to get some additional material, talking to people about their encounters with Baldwin, and document her family spreading her ashes on the Ganges. It also would finance the dubbing of the movie into the world’s 50 most prevalent languages, which would allow the film to reach 5 billion people.
As of late Tuesday evening, the Kickstarter campaign was closing in on $150,000 with nine days to go until the Nov. 28 deadline. “What’s crazy about this whole thing is it’s donations. There’s no return on investment, just people who see this and want to help make a difference,” Hefti said. “I was getting tears in my eyes seeing them come in because you just realize how good people are and how gracious people are.”
Hefti figures “Lady Ganga” has the potential to be an Academy Award-caliber documentary and, more importantly, a vehicle to save a vast number of lives, especially in the developing world. For both Hefti and Lumiere, “Someone You Love” and “Lady Ganga” have been life-changing, deeply satisfying projects. The coming months will mean a lot of travel for Hefti as he hosts screenings of “Someone You Love” around the country and offers Q&A sessions afterward.
The discussions after “Someone You Love” screenings are as important for spreading awareness as the film itself, Hefti said. “The film leaves people with a lot of questions.”
The creation of the film also left Hefti with a strong desire to do something a little on the lighter side. “I’m always big on the duality of things,” he said.
On the other end of the spectrum, Hefti recently shot a parody music video for a potty training song for kids he wrote called “Doodoo Like Mommy Do,” performed by him and his bandmates in The Dimpals. “It’s kind of Spinal Tap meets The Wiggles,” he said with a giggle.
Source : http://lacrossetribune.com/couleenews/lifestyles/amazing-journey-cervical-cancer-film-project-turns-into-two/article_75c9c537-cca9-553d-9243-68ad86357253.html