Review: Decoding Annie Parker

I finally saw Decoding Annie Parker and I have to say that my reaction was similar to Bryna’s over at Blogging BRCA. Go read her review here.

I was disappointed in this movie. It focuses mostly on Annie’s life with little attention paid to Mary-Claire King and the science behind the discovery of BRCA1. The film shows Annie learning about genetics, and it would have been easy for viewers to learn about it along with her: all the filmmakers would have to do is show someone explaining it to Annie or have Annie explain it to someone else. We get some of that, but mostly we see Annie bent over big books and constructing genetic models to help herself understand heredity. As viewers we don’t learn much.

There’s also little sense of why the discovery was so scientifically significant. I remember watching the nightly news back in the early 1990s and seeing the excitement around the discovery on television, even though at the time I had absolutely no idea that I was a carrier. It would have been easy to cut in some footage from the time in a montage of sorts, or have Annie watch Tom Brokaw reveal the discovery and explain its importance on the national news.

At the same time that they shortchange viewers on the science behind of BRCA mutations, the filmmakers missed a real opportunity to explore the life of a woman in genetics who triumphs over the misogynist tendencies of the scientific community, something King herself is interested in. King is a truly exceptional woman and groundbreaking scientist not only for her role in the discovery of BRCA1 but also her other work in genetics, yet she’s barely shown despite the fact that the film promos suggest the movie is equally about Parker and King.

Moreover, Annie Parker is a strange figure to focus on in some ways. As played by Samantha Morton, she seems smart, witty, tenacious, and very likable–all good qualities, to be sure. However, in the film, Helen Hunt (playing Mary-Claire King) calls Parker “a remarkable woman.” After watching the movie, it’s not clear to me what makes Parker so special beyond her great personality and unlikely survival after three (!!!) separate cancer diagnoses. Her story is similar to so many BRCA+ women and other cancer families. We see Annie doggedly researching cancer genetics at a time when the medical establishment didn’t recognize it as a viable field of inquiry, but what did her research actually accomplish? Not much.

I’m not saying that the film shouldn’t focus on Annie Parker or that she’s not worthy of our attention. Her story on its own may very well be worth a film. However, this film does a pretty flimsy job of connecting her to the promise of its title–to decode her genes in the discovery of BRCA mutations. In fact, King never decoded Parker’s genome, Parker’s genes were not part of the discovery of BRCA1 at all, and the two never even met; there’s no real tie between them beyond the fact that King located BRCA1 and Parker is a carrier of BRCA1. If you’re not going to focus exclusively on King and want to include a narrative about a woman with a BRCA mutation, then why not use a woman from one of the cancer families that King actually studied?

The filmmakers did invent a scene in which Parker and King meet. In it, Parker rushes in late after King gives a scientific lecture and introduces herself. King brushes her off impatiently and walks away, leaving Parker looking disappointed and awkward. King then returns a moment later and tells Parker that she’s remarkable before walking away quickly again. That’s it.

Quite frankly, King comes off as a bitch in the scene. Here viewers have just watch the funny and tenacious Annie Parker suffer through the deaths of her mother and sister from breast cancer, receive her own diagnoses of breast and then ovarian cancer, endure the truly horrific side effects of chemotherapy, and cast off an immature cheating husband, who then himself develops cancer and dies. And then this fictional King can’t be bothered to even have a polite conversation with her.

This is completely at odds with the reputation of the real Mary-Claire King, who is known for being a friend of the underdog and running a particularly diverse, inclusive lab–a rarity in the sciences, especially in the 1980s and 1990s.  This woman has revolutionized the study of breast and ovarian cancer, and had a palpable effect on the lives of millions of BRCA+ women the world over who now have the chance to avoid the genetic fates suffered by their foremothers. Mary-Claire King is the kind of hero you rarely see–one that actually exists. Yet here she’s depicted as at best aloof, at worst just plain cold. The filmmakers never contacted King when making the movie. I find that very strange considering that they were making a movie about her and she’s always been accessible to the BRCA+ community. Most of all, I find their depiction of her as an icy lady scientist in this fictional scene appalling and terribly cliche.

I see why BRCA+ women have been promoting to this movie. We want a voice in the mainstream. We want some cultural artifact that explains our situation–something that we can point to when explaining things to people and be like “see that? that’s what I have, that’s what my family has been through, this is why I do what do even if it seem extreme to you.” This is one reason why most BRCA+ women were mostly supportive of Angelina Jolie’s NYT op ed. Decoding Annie Parker isn’t a terrible movie, but the filmmakers really missed their chances to make it a great one or at least a good one.

 

The Neave Sisters

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I recently purchased Veronica Neave’s Pieces of Me, a documentary companion film  to her autobiography about her family’s experiences with BRCA2. Unfortunately, the DVD is coded for a different region and won’t work on my American DVD player (digression: DVD regions are a total scam). I found part of the film on YouTube, so you can watch about a segment in which the BRCA+ sisters grapple with how to manage their risk. At one point in the film, Veronica Neave says “knowledge is a gift–or so I thought” and notes how difficult it is to figure out to what to do with the knowledge of being BRCA+ when the options for managing high risk are so “barbaric.” I couldn’t agree more.

I am really disappointed that I can’t watched the entire movie, because Veronica Neave and her sisters Chrissy Keepence and Elisha Neave have such an amazing rapport and they instantly won me over (incidentally, Chrissy is wicked stylish). But in my quest to find the film online, I fell down a YouTube rabbit hole. It turns out that the Neave sisters often appear in the Australian media to discuss BRCA+ issues. You can find a really great interview with them here and here that was filmed some time after Angelina Jolie announced her mastectomy.

The interview reveals that Neave’s mother Claudette is fighting a recurrence of breast cancer, her youngest sister Elisha (who in the film put off prophylactic surgery because she felt that she had more time) was diagnosed with ovarian cancer at 33, and her father has also recently passed away. This is what it’s like to be in a cancer family: there is no reprieve.

The account of Elisha’s experiences with ovarian cancer is particularly gut wrenching (follow up on her here and here). It seems noteworthy that in the two BRCA1/2 documentaries that have been made–Pieces of Me and Joanna Rudnick’s In the Family–women in their 30s delayed prophylactic surgery and then faced cancer diagnoses a few years latter (in Elisha’s case ovarian cancer and in Rudnick’s case breast cancer). Mastectomy and oopherectomy are obviously very difficult, very personal decisions and not everyone chooses to go those routes. However, these films suggest that if you have chosen surgical risk reduction, then you should act sooner rather than later at the same time that they show that actually following through with surgery can be easier said than done.

Adding to the complexity of this issue is the fact that prophylactic mastectomy is considered “elective surgery” in Australia and not covered by the healthcare system there. This situation puts an appalling financial burden on BRCA+ Australian women to pay for their own risk-reducing surgeries if they can. In worst case scenarios, it makes risk-reducing surgery unavailable to those who can’t afford it.

UPDATE: I just discovered that you can rent the entire film on Amazon. Woot!

Joanna Rudnick’s In the Family

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I finally watched Joanna Rudnick’s documentary about being BRCA+, In the Family (2008). It is, obviously, required viewing for anyone with a BRCA mutation, but it’s hard to watch. I started to cry while the title credits began tracing out the cancers in Rudnick’s family and I didn’t stop until I had watched every bonus feature on the DVD.

The film begins with Rudnick’s horror at the idea of prophylactic surgery. She’s young and single; she wants to keep her breasts and ovaries until she can marry and have kids. As she begins to interview women with breast cancer, families with BRCA mutations, doctors, scientists, and various BRCA advocates, she seems to slowly realize that she ought to have a prophylactic mastectomy and oopherectomy. Still, as the film ends, she drags her feet.

I wanted to know what happened to Rudnick in the five years after the film’s premiere in 2008. After some quick googling, I found that she found a supportive partner, married, and had two daughters. Watching her film, it became clear to me what an important voice she is for the BRCA+ community. In it, Mary-Claire King tells two young women that they each have a BRCA mutation and she repeats several times that everything is going to be okay, that these women will not get breast cancer. Rudnick’s happiness–her supportive partner and chubby cheeked girls–gives me hope that King is indeed correct: that BRCA+ women are not doomed to repeat their foremothers’ experiences. Rudnick, it seems, has beaten the odds and so can we.

So I was disheartened to find that Rudnick was recently diagnosed with breast cancer at the age of 39. On a post over at the PBS blog, she writes: “The worst part about being diagnosed with breast cancer is knowing that I had the knowledge to prevent it.” After treatment, she had a double mastectomy. As she was recovering, Angelina Jolie’s NYT article was published.

In the Family captures the horrors of preventative surgery, but also provides strong arguments for the necessity of it. Rudnick interviews women with breast cancer who swear that if they could go back in time to have the prophylactic mastectomies and oopherectomies that they would in a heartbeat. But Rudnick herself is evidence that hindsight is 20/20: surgery provides the best protection for BRCA+ women, but many women don’t want to do it or can’t bring themselves to pull the trigger. And who can blame them?

I hope Rudnick is doing well. In making her film and speaking out about her experiences, she has done an incredible service for other BRCA+ women. She has sacrificed her own privacy to provide us with a glimpse into the everyday life of a BRCA mutation carrier. I am grateful to her.