Knowledge is power. These three simple words were used to conclude an eloquently penned op-ed piece in the New York Times this past Tuesday about a very private and important surgery. Angelina Jolie Pitt's decision to go public regarding her surgery for the removal of her ovaries and fallopian tubes, just two years after her New York Times op-ed about her bilateral prophylactic mastectomy, has had the impressive and positive effect of generating discussion about health. Once again, she has brought attention to understanding risk factors for certain diseases, and she has illuminated options women have to be proactive in making medical decisions. Critics, however, have missed the point of Ms. Jolie Pitt's articles, claiming that by sharing her story and her medical choices, she has wrongly incited a population of women to consider unnecessary genetic testing and surgery.
Ms. Jolie Pitt's intentions are crystal clear, and her actions are courageous. Her personal choices are not endorsements to remove healthy breast tissue or ovaries. Her medical decisions were not made in haste or out of fear, and she has not encouraged others to blindly follow the same path. Her purpose was simply to share her well-researched and informed medical decisions based upon facts and circumstances surrounding her personal medical history and the recommendations of experts in the field. In short, she is helping empower women to know the full range of their options in maintaining their own health.
In both articles, two themes ring true: These surgeries were Ms. Jolie Pitt's personal "medical choice," and she stresses that "knowledge is power."
The impact of Ms. Jolie Pitt's decision to speak publically on personal health issues mirrors that of First Lady Betty Ford in 1974, when she used her prestige to openly speak about her mastectomy. Women's health issues and related medical procedures and options have historically been hidden from public view, and were rarely discussed. From Ms. Ford's surgical procedure to Ms. Jolie Pitt's reference to genetic testing, these stories have done more than just educate and inspire women to take their lives into their own hands; they have been the catalyst that has ignited and continues to ignite social and governmental change. Because of the stories these women selflessly shared, it is now acceptable to talk about women's health in the mainstream media. Further, by simply sharing their stories, these women have precipitated legislation including the Mammography Quality Standards Act, the Breast and Cervical Cancer Early Detection Program and the EARLY Act. Increased attention to women's issues has also brought major growth in Federal funding for cancer research. Since the 1990s, government funding for breast cancer research increased from $81 million to more than $630 million, and there has been exponential growth in private donations and funding for women's cancers. Funding for cancer and genetic research today will lead to lives saved tomorrow.
The "Jolie Effect" has been studied in genetic clinics around the world. In a 2014 study, data shows that genetic testing referrals increased more than two fold from the time of Ms. Jolie Pitt's first article. That number has remained steady at that level ever since, with no increase in inappropriate or unnecessary referrals. The Jolie Effect has also sparked discussion about why family medical history is so pertinent to medical choices. Most importantly, the Jolie Effect ignited discussion about the availability, affordability and coverage for genetic testing, a problem which still exists.
Despite all the good that has come from sharing her private stories, we still hear from Ms. Jolie Pitt's critics. Were her articles meant to be medical advice? No. Did sharing her story cause an international panic? No. Did she trigger thousands of unnecessary surgeries? No. Has it increased awareness, encouraged education and shown that women can feel empowered by taking their health into their own hands by making the choices that are right for them? Yes! Jolie Pitt's story is simply the story of one woman who is not going to allow her quality of life to be adversely affected by disease she is genetically predisposed to. It is a story about a woman who has educated herself to make the best personal medical decisions, encouraging others to do the same.
As a breast cancer advocate, I have found that many people confuse the sharing of a personal medical story with medical advice or expertise. I am regularly asked what I think is the best medical course of action to take. Do I recommend prophylactic mastectomies? Do I believe a bilateral mastectomy after a breast cancer diagnosis is the best strategy? My answer is simple. I am a breast cancer survivor and I know my personal history. I am not a doctor, and I do not know anyone else's specific medical history, only my own. The decision to undergo any major surgery is a very personal one that is based upon many different factors, both physical and psychological. It is a decision that needs to be made by each individual based upon the advice of their personal physicians and the knowledge gained by research as it relates to their own situation. The answer is not simple, nor is there ever just one answer for everyone. As Ms. Jolie Pitt has written from experience, it is a personal medical choice.
I come from a family where every woman on my maternal side was diagnosed with breast cancer. With an understanding of my increased risk of breast cancer and my family history, I became educated on all options for at-risk women. After thoroughly investigating my options, I did not choose to have a prophylactic mastectomy before being diagnosed. Instead, I chose to regularly screen via mammography, MRI and ultrasound. In August 2013 at age 30, I was diagnosed with a very early stage of breast cancer, and I opted to have a bilateral mastectomy to remove the cancer in my right breast and prophylactically remove my left breast to lower my risk of recurrence. This was the decision that was right for me, and it was based upon an informed understanding of my options and strategic personal choices. Ms. Jolie Pitt opted to have a prophylactic bilateral mastectomy after testing positive for the BRCA gene mutation, and a laparoscopic bilateral salpingo-oophorectomy upon a screening that yielded early signs of cancer. These were decisions that were right for her. Both were informed decisions and based upon advice and consultation with medical experts. They were decisions made armed with the power of knowledge.
We are not all Angelina Jolie Pitt, and we are not all First Ladies. However, what we do have in common is the need to continue the discussion about women's health, and to make informed medical choices. Ms. Jolie Pitt leads by example. She has inspired global change, both socially and politically. She leaves us with a message of empowerment and encouragement, to know your family's medical history, to learn what you can do to protect yourself, to be aware of your body and to screen regularly if you are at high risk. As Ms. Jolie Pitt points out, your own course of action is your medical choice, and you possess the power to make that choice by being well informed. Knowledge is power.
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