In an op-ed published today in the New York Times, actor Angelina Jolie explains that as a result of genetic screening, she learned she has the BRCA1 gene — a “carrier” gene that increases a woman’s odds of developing both breast and ovarian cancer.
Based on her screening results and family history of cancer, Jolie decided to undergo an elective, preventative double-mastectomy — essentially removing all of her breast tissue — a decision that lowered her chance of developing breast cancer from 87% to 5%.
The rest of Jolie’s article provides details about her treatment and explains how she felt empowered in making a decision for her health and for the well-being of her family that “in no way diminishes [her] femininity.”
But all of those details are secondary to her larger purpose. Jolie decided to go public to let women know “it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.”
After I read Jolie’s op-ed, I did two things.
First, I sent emails to several cancer survivors in my family to ask if they were willing to share the details of their diagnoses with me. I also emailed two partners of family members who did not survive for details on the cancers that claimed the lives of their loved ones.
Second, after I sent those difficult emails, I dug through my filing cabinets for my insurance information, looking to find out whether my health care covers genetic cancer screenings.
Despite having a significant family history of both breast and ovarian cancers, I had no idea…
I didn’t know there were different types of either cancer.
I didn’t know genetic cancer screenings even existed.
Now I know. As strange as this feels to write, I’m grateful to Jolie for making me aware.
According to her op-ed, that’s exactly what she aimed to do. Jolie uses her own medical details as a vehicle to promote awareness, to urge women to get screened, and if necessary, to take action (even if ‘taking action’ means a double-mastectomy).
Deservedly, Jolie has been praised for her decision to share her story in order to promote awareness.
But there’s also been a quiet undercurrent of criticism against Jolie for her privilege, and for her focus on agency rather than on the availability of affordable heath care that would enable agency.
That recognition — of privilege and of appalling heath care inequity — is not unwarranted. After all, Jolie has agency to make informed medical decisions — she has access to the finest doctors, the latest technology, the most-effective treatments, and the means to pay for it all. Many women do not. Jolie can afford to take off work during treatment and ensure her children are cared for during her recovery. Many women cannot.
Without adequate health care, the price of genetic screening alone is cost prohibitive for most women. Preventative treatment like elective mastectomies are not often covered under health insurance policies, and certainly, coverage for reconstructive procedures is very rare. Too many women in the United States have no health care coverage at all.
Recognition and criticism of the sad state of health care is justified, but criticizing Jolie is not. While many writers, bloggers, and public figures lauded Jolie’s decision to come out, several prominent voices also tempered their praise with almost postscripted disappointment that Jolie used her voice as a means to promote agency. Instead, it seems many would have preferred Jolie use her voice and her personal disclosure as a vehicle to discuss the more important and more far-reaching issue of affordable health care.
This is troubling to me for a number of reasons.
- Jolie does, in fact, mention health care. It’s secondary to her main purpose, but it’s there.
- What she chooses to disclose and the rationale behind her disclosure is her own business. While I agree public figures should use their voices responsibly, Jolie isn’t obligated to say anything. Certainly, her promotion of awareness and agency is not an irresponsible use of her public voice.
- Some women have the means to make informed decisions about their medical care and some women do not. It’s not fair, but it’s reality. The women who do have agency, those that have the means to obtain their medical information and have the power to make informed decisions should be encouraged to do so.
- That message — ‘those with agency should use it’ — is diluted by combining it with messages about the desperate need for health care reform. They’re topically related issues, but they’re entirely separate because of their immediacy — women who have agency can make informed decisions about their health right now. Obtaining health care that would enable the same agency for countless women without adequate coverage will take more time. That’s the awful reality. Certainly, we can discuss both issues at the same time, but not by using this short op-ed by a single woman as a vehicle for both. There are other ways to advocate that would be more effective for proponents of both causes.
Praise Jolie for her bravery, for her actions, and for her willingness to come forward. Praise Jolie for her mission to encourage women with agency to make good use of it — to know their options and make informed decisions about their health.
Praise her for what she did.
Don’t dilute the good that might come of her actions by criticizing her for what she didn’t do.
1. “It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.” (Jolie, “My Medical Decision,” para 16)