Angelina Jolie's "Medical Choice" Dominates the Internet

I woke up this morning to the quintessential Pop Health story.  Angelina Jolie published an op-ed called "My Medical Choice" in the New York Times.  She talks about undergoing a preventative double mastectomy in February 2013 after genetic testing revealed that she carried the BRCA1 gene.

As I inventoried her column and the online chatter today, I worried that I missed the boat!  Dozens of bloggers and news outlets wrote about her op-ed within hours of its posting...what else could I add to the conversation?

With so many posts for readers to sift through- many of which focus on very specific issues (e.g., the efficacy of preventative mastectomies)- I decided to add to the conversation by cataloging the public health implications being discussed:

Angelina as a "champion" for breast cancer prevention: will her celebrity status help or hurt the cause?:  Most of the articles and comments that I read in response to her op-ed were overwhelmingly positive.  This is exemplified by an open letter on KevinMD.com written by Dr. James Salwitz.  He praises Angelina for her bravery and leadership in the battle against breast cancer.  He goes on to state, "Your action will save more lives than all the patients I could help, even if I were to practice oncology for hundreds of years".  On the flip side, a few writers/commenters raised the concern that Angelina's influential status in conjunction with her decision to have surgery could cause women to panic about their own breast cancer risks.  For example, David Kroll writes for Forbes, "For all the bravery of Ms. Jolie and the positive groundswell that her op-ed generates, I also want to be sure that women with breast cancer - women who are already scared - do not feel the extra burden that they’re not doing enough if they don’t consider a double mastectomy".

I thought that Linda Holmes (of NPR's pop culture blog) did a really nice job of reconciling Angelina's role as both "celebrity" and "champion" in her post called "Why Angelina Jolie's Op-Ed Matters".

Legal and Policy Issues:  BRCA Genetic Testing:  On April 15, 2013, the Supreme Court heard oral arguments challenging Myriad Genetics' patents on "the breast cancer genes".  As a side note: I do not remember hearing about this story last month- perhaps because the Boston Marathon bombings also took place on April 15th?  The concern is that such patents inhibit scientific advancements, keep testing costs high- and therefore limit access to the testing.  Angelina alludes to this in her op-ed when she reveals that the BRCA1 and BRCA2 testing costs approximately $3,000 in the U.S.  Sarah Kliff from The Washington Post notes that this testing "is about to get significantly less expensive: The Affordable Care Act included the genetic test among the preventive services that insurers are required to cover without any cost sharing".

Health Communication- Risk Perception:  Nancy Shute wrote an interesting piece for NPR entitled, "Angelina Jolie and the Rise of Preventative Mastectomies".  She interviews Dr. Todd Tuttle, who raises concerns about women overestimating their risk of breast cancer (in the other breast after being diagnosed on one side) and choosing more invasive treatment like mastectomy when not medically necessary.  Shute also discusses some potential contributors to the increases in risk perception and preventative mastectomy. For example, she mentions advancements in breast surgeries/reconstructions and the "hyper-awareness" of breast cancer resulting from ubiquitous pink ribbon campaigns.  Many of these contributors were discussed two weeks ago in the must-read The New York Times Magazine article "Our Feel Good War on Breast Cancer" by Peggy Orenstein.

Reviewing the Evidence Base for Recommending BRCA Testing or Preventative Mastectomies:  Many articles focused on reviewing what we know about the effectiveness of (1) BRCA testing for predicting cancer and (2) mastectomies for preventing cancer death.  Several articles linked to the CDC feature, "When is BRCA Genetic Testing for Breast and Ovarian Cancer Appropriate"?  Sarah Kliff discusses why "Most Women Probably Shouldn't Get the Cancer Screening Angelina Jolie Did".  NPR linked to a 2010 Journal of the American Medical Association (JAMA) article that provided the "clearest evidence yet that women carrying the BRCA1 and BRCA2 genes should consider preventive surgery because they are at a very high risk for breast and ovarian cancers."

With so many articles and blogs to sift through, I could probably keep going.  But I'd like to stop and hear from you:

• What other public health implications could result from Angelina Jolie's disclosure in today's New York Times?
• How do you think her disclosure could impact the issues I've raised above- risk perception, policy decisions, etc?
• I've linked to some of the articles that I read today- are there others that you would recommend to me and Pop Health readers?

Kudos to The New York Times Magazine for Examining the "Feel-Good War" on Breast Cancer!

In last week's The New York Times Magazine, Peggy Orenstein wrote an article called "Our Feel-Good War on Breast Cancer".  The piece is lengthy but well researched, insightful, and well worth the reading time.

Peggy, a breast cancer survivor herself, hits every key public health issue- cancer screenings, treatment options, "awareness" raising, message framing, funding, and research.  As someone who has been critical of "awareness" raising, I was happy to see the issue discussed front and center.  For me, her interview with Dr. Gayle Sulik (Sociologist and Founder of the Breast Cancer Consortium) was the most striking.  A key quote from Dr. Sulik (I added the bolding):

“You have to look at the agenda for each program involved.  If the goal is eradication of breast cancer, how close are we to that? Not very close at all. If the agenda is awareness, what is it making us aware of? That breast cancer exists? That it’s important? ‘Awareness’ has become narrowed until it just means ‘visibility.’ And that’s where the movement has failed. That’s where it’s lost its momentum to move further.”

Peggy also tackles the issue that is an ongoing challenge in public health and medicine:  screening.  Screenings are tests that look for diseases before you have symptoms.  Ideally, screening will identify diseases early when they are easier to treat and have better outcomes.  For breast cancer, the key screening test is a mammogram (x-ray of the breasts).  However (as Peggy points out), we seldom hear about the research that demonstrates limited effectiveness of mammograms for reducing cancer death.  This is not the research cited in the communication materials from advocacy organizations.  We also tend not to hear about the negative side effects of screening large segments of the population.  There can be false positive tests: which subject the patient to unnecessary medical intervention and emotional distress.  There can also be over-treatment for the detected cancer, even if it turns out to be a non-aggressive tumor.

When I was working in suicide prevention, one of the best articles I read was "Screening as an Approach for Adolescent Suicide Prevention" by Dr. Juan Pena and Dr. Eric Caine.  The authors dedicate a section of the paper to key decisions and tasks to resolve before implementing a screening program.  While the public health issue and screening tests are different, I believe many of their decision points are generalizable to almost any health issue.  The table presenting these decisions and tasks is a great reminder to public health professionals and clinicians that recommending and undertaking a screening program should be strategic and the decision should be re-visited regularly.  For example, the authors highlight:

• Key Decision:  Population and Setting- Is the screening program consistent with the target population's community or cultural values?
• Key Decision:  Screening Instrument- What will be the false positives and false negatives rates in the population to be screened?  Are these rates acceptable?
• Key Decision:  Staffing and Referral Network- Are there effective treatments available for the types of conditions being screened for?
• Key Decision:  Quality Assurance- How will the screening program be monitored to ensure that protocols are followed?
• Key Decision:  Legal and Ethical Issues- Has sufficient informed consent been given to parents and youth about risks, benefits, and limits of screening?

Going back to the "Feel-Good War" article:  I like that Peggy did not just point out all the flaws in our current breast cancer screening and treatment systems.  Instead, she invited her interviewees to recommend potential improvements.  Some ideas were noted in two key areas:

• Message Re-Framing:  Rather than offering blanket assurances that “mammograms save lives,” advocacy groups might try a more realistic campaign tag line. The researcher Gilbert Welch has suggested this message, “Mammography has both benefits and harms — that’s why it’s a personal decision.”

• Funding Re-Distribution:  Peggy asked scientists and advocates how some of that "awareness" money could be spent differently. She highlights the February recommendations of a Congressional panel (made up of advocates, scientists and government officials) that called for increasing the share of resources spent studying environmental links to breast cancer. They defined the term liberally to include behaviors like alcohol consumption, exposure to chemicals, radiation and socioeconomic disparities. 

Tell Me What You Think:

• What do you think about the "pink culture" or awareness raising around breast cancer?  Will it effectively lead us to our goal of prevention?
• In addition to message re-framing and funding re-distribution, what else would you recommend to help improve the approach to breast cancer prevention, screening, and treatment?