Yesterday, I opened my laptop to see an article on Vox, “Angelina Jolie’s breast cancer op-ed may have cost the health system $14 million in unnecessary tests”, written by Julia Belluz. As I poured through the article, a research study by two health policy professionals on BRCA genetic testing before and after Jolie announced her own BRCA status, I could not believe that Vox felt it wise to publish an article with such glaring flaws in a time when “fake news” is swaying elections and public opinion.
To back up and explain — I am a BRCA1+ woman who underwent a preventative double mastectomy over a year ago. Everyone has the BRCA gene but the mutation (BRCA1 and BRCA2) increases one’s risk of breast cancer by 87% and ovarian cancer by 50%. So, as I read an article that whittled down a deeply complex and nuanced medical test to a celebrity fad, my anger — as a journalist, as an informed individual, and as a BRCA1 woman — raged inside me.
I quickly penned an email to the author of the article, as well as her editor. I explained that her click bait title “Angelina Jolie’s breast cancer op-ed cost the health system $14 million in unnecessary tests” (which has since been changed to denote a more vague conclusion) implied that $14 million of medical costs were the responsibility of insurance companies and the government, which is simply untrue. The study, limited in its scope and conditions, based this dollar amount on insurance claims, not what insurance (or anyone, for that matter) actually paid.
Her article went on to discuss the study, implying that a surge in BRCA testing seen after Jolie penned her Op-Ed in the Times followed by unchanged mastectomy rates meant that the “unnecessary tests” were negative. The period of time during which they consulted mastectomy rates was 60 days after the BRCA test. This limited time frame was the sole basis of the article’s claim that women ran out to be tested, regardless of their risk, because Angelina Jolie did it.
In response to my initial email which threatened her weak point, Belluz wrote: We know that there’s a lot of overuse, and over-testing in the health system, so it wouldn’t be all that surprising if that’s happening in this case, too.
It wouldn’t be all that surprising.
The gross liberties Belluz took with this article just to make an absurd, and quite frankly misguided, point are nothing more than journalistic malpractice.
I responded to Belluz, more thoughtfully this time, pointing out that at no point in her article did she point our the glaring assumptions made in a research study with such narrow guidelines, especially the point in which she states that in 60 days after testing, mastectomy rates were stagnant. The trouble with this window, I explained, is that being tested for BRCA is akin to getting an abortion in the US.
You’re required to receive counseling and prove a detailed family history including BRCA test results and cancer diagnoses from other family members (if you do not have a strong family history, you can still take the blood test but will likely not be covered under insurance). Only then can you take the blood test — the results of which take at least two weeks to receive. Should you test result be positive, you are referred to a breast surgeon and a gynecologic oncologist. Even if you call these doctors to schedule a visit the day you receive your results, you likely won’t have an appointment for at least another week. We are now three weeks into a 60 day window. Once meeting with a breast surgeon, you’re presented with the option of surveillance or surgery, patient’s choice.
Regardless of the choice, you’ll need a baseline mammogram or MRI before discussing your surveilance or surgical plan. It’s safe to say this occurs within the second month of the window, possibly at week 5 or 6. If you elect to have a mastectomy, your surgeon will probably have you sit with the decision for a period of time. If they book your surgery without a waiting period, it’s not likely that the surgery will happen within two weeks because surgeries on cancer patients often take precedent over preventative surgeries.
The 60 day theory of negative test results is debunked.
Before responding to my email, the piece was edited to remove this quote from the study and adjust the headline, as it clearly poked a hole in her invalid point.
Not wanting to mince words, my final response to Belluz is copied below. During our entire exchange, the editor of Vox’s health vertical, Eliza Barclay, never spoke up. Yet, she is equally as responsible, if not more, for publishing such lazy reporting based on one deeply flawed report.
In short: Vox fucked up and should retract the article. At a time when most readers see headlines and make a decision on the article in an instant, Belluz, Barclay, and Vox equated genetic testing to something Gwyneth Paltrow touts in her GOOP newsletters. It placed the burden of $14 million in healthcare expenses on people taking charge of their health. They painted a portrait of hysterical women running to take an “unnecessary test” without so much as alluding to how this test is possibly the most difficult thing someone can do, for the results hold the power to change their life. Nor was it mentioned that preventative medicine, including a false test, is far less costly to the American taxpayer than treating illness.
From the BRCA Community to you, Vox, we’re not at all sorry we spent $14 million on unnecessary tests.
By amending your article, you furthered your erroneous point through the power of omission. While your title still suggests it’s the health system bearing the burden of the cost, the body of the article calls it “heath care spending” without denoting this spending is not all bore by insurance companies, etc. Again, when you’re in a position to influence people on healthcare laws, making the claim that people taking a genetic test are causing undo burden on the healthcare system is irresponsible. You also misquote the actual cost stated in the report, which is $13.5 million and in no way suggests the costs were placed on insurers and not the insured.
You’ve now omitted the 60 day figure in an attempt to legitimize your claims, where you should have included the following:
Limitations of study
Because we did not observe test results, we did not measure benefits associated with knowing one’s BRCA status such as peace of mind or increased vigilance after learning one’s risk factors. Moreover, as our data did not allow us to identify preventive mastectomies, preventive mastectomies among women who tested positive for the BRCA mutation may have increased after Jolie’s editorial even though overall mastectomy rates remained steady. Moreover, rates of mastectomy among women who tested positive for the BRCA mutation could have increased after the time captured by our study period.9 10 Finally, although our study population was more general than that of previous studies, certain populations such as Medicare enrolees were not represented.
Stating that BRCA testing went up while mastectomy rates remained the same shows simply that more people are aware of their health options. It does not mean the grave details of Angelina Jolie’s op-ed made people fear double mastectomies. It also doesn’t consider that in both scenarios, doctors have always advocated for a waiting period in which the patient is monitored before jumping into a serious surgery.
I find it questionable that the article has been edited to prove your invalid point without any note from an editor stating the article has been changed nor has a comment been made.
Just as you assume people made decisions based on Jolie’s op-ed, others may make important decisions based on the ridiculous point you’re attempting to prove (for what reason, I really don’t know) in the article. The article confuses correlation with causation thus misleading people about government healthcare spending (a hot button issue for many people right now) and essentially paints the women who took the test as hysterical because the tests “proved nothing”, considering they did not undergo an mastectomy within 60 days.
To give you a more intimate picture of what you are implying, I took the BRCA test at the end of March 2015. The PA who drew my blood said “It will probably come back negative, the mutation is so rare.” (Perhaps you should have interviewed her for your inane article.) I found out the test was positive the same day Jolie’s second op-ed was published — the irony of which was not lost on me. I met with a breast surgeon and gynecologic oncologist mid-April. I was presented with my options: surveillance or surgery. Then, I had an MRI in May, which showed shadows that were either fatty breast tissue or a growth. I decided to have my mastectomy. Simply due to the surgeons schedules, I wasn’t able to schedule my surgery until October of 2015. So, 13 days shy of my 28th birthday, I had two healthy breasts removed and learned pre-cancerous cells were found in the breast where my MRI showed shadows. None of this was entered into lightly nor was it easy to recover from emotionally. My aunt and two female cousins have not been tested and, while I’m not a religious person, I pray to whatever higher power is listening that none of them have this genetic mutation.
Eliza — I would encourage you to publish any part of my emails to create a well-rounded perspective on a poorly reported piece. This article in it’s current and original iteration are the definition of fake news.