Analysis

Will Renewed Attention to Climate Change Bring Back “Population Control?”

Jade Sasser

The attention being paid to climate change is much deserved but some advocates worry that it will revive many of the old alarmist debates on population and with it the calls for "population control" that almost always target poor women and women of color.

This fall, world population will reach seven billion people at a time of accelerated environmental disruption. This article is part of a series commissioned by Rewire, with Laurie Mazur as guest editor. The series examines the causes and consequences of population and environmental changes from various perspectives, and explores the policies and actions needed to both avoid and mitigate the inevitable impacts of these changes.

Here, graduate student Jade Sasser discusses the danger that the renewed attention to climate change will revive some of the old debates about population and that arguments in favor of “population control” will resurface.

All of the articles in this series can be found here.

Who’s afraid of climate change? Well, I am but not necessarily for the reasons you may think. I’m afraid that the recent, much-deserved attention to climate change will revive some of the old alarmist debates on population. And with those debates, I’m worried that the specter of population control will rear its ugly head again.

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You see, as a woman of color, I am particularly sensitive to population control arguments. After all, claims of “overpopulation” usually target women who look like me.

Throughout the 20th century, coercive welfare policies led to thousands of African-American women in the United States being sterilized without their consent in a procedure that came to be known as the “Mississippi Appendectomy.”  In the 1950s, Puerto Rican women’s bodies were used as the testing grounds for controversial and experimental contraceptive trials, in part due to government perceptions that these experiments could help solve the island’s “population problem.” Around the same time, population control became enshrined within development programs in India and Bangladesh, where use of contraceptives and permanent sterilization were attached to food aid programs and the allocation of land and medical care. And, as recently as the late 1990s, hundreds of thousands of poor and indigenous women were sterilized against their will by the government of Peru under the banner of fighting poverty and overpopulation.

What does all of this have to do with the environment? Well, a lot. In the United States, fears of a “population crisis” exploded onto the scene back in the 1960s and 1970s with the rise of the environmental movement, with environmentalists blaming population growth for everything from deforestation and desertification to global food shortages. Neo-Malthusian scholars and activists called for reducing food aid to starving populations in developing countries, and one well-known biologist famously suggested that sterilizing agents be placed into the American water supply.

Population alarmism gained quite a bit of support at the time, both among the general American public and among some members of the international development sector, who felt that controlling and reducing population growth would be beneficial to the global environment and the security of U.S. borders.

Luckily, population controllers were stopped in their tracks by a coalition of women’s health and rights reformers in the mid-1990s. At the 1994 International Conference on Population and Development (ICPD) meetings in Cairo, world leaders agreed that universal access to reproductive health services, within a broader focus on women’s rights and empowerment, would replace population control as the leading paradigm for the international family planning movement. Focused on meeting women’s reproductive health needs, as opposed to controlling and reducing their fertility, this new paradigm was enshrined in a document known as the Cairo Consensus, which was ratified by 179 countries.

At around the same time, the population bubble burst. According to the Population Reference Bureau, nowadays the average woman in a developing country gives birth to 2.5 children, compared to 6 children in 1950. In the industrialized world, this figure is even lower, with women having an average of 1.64 kids. Although in some regions like sub-Saharan Africa, rapid population growth continues to be carried along by demographic momentum, the trend toward the average woman giving birth to fewer children is a long-term, global phenomenon.

But is this enough to keep population controllers at bay? I’m not sure. Climate change has received much well-deserved attention lately in the news. And along with it comes the old, familiar population debate.

In 2009, the Vice Minister of China’s National Population and Family Planning Commission told an international audience that the Chinese one-child policy had proved to be an environmental success, adding that the 400 million births that have been prevented since the introduction of the policy have resulted in 1.8 billion fewer tons of carbon dioxide being emitted into the atmosphere. At the same time, several professors in the United States and Australia have proposed carbon taxes for every child born beyond the replacement fertility level of two children per couple.

In addition, the British charity Optimum Population Trust published a report arguing that spending just $7 on international family planning projects could reduce carbon emissions by one ton, concluding that family planning as a method of reducing future emissions of carbon dioxide is significantly cheaper than many low-carbon technologies. The organization created a website which offers consumers the opportunity to offset their carbon footprint by investing in family planning in developing countries. The site argues that investing in family planning is a “cost-effective and permanent way of reducing CO2 emissions and climate change” with “no downsides,” and  offers wealthy Westerners the opportunity to consume their way into reducing their carbon footprints through reducing the childbearing of other women, rather than changing their own greenhouse gas emitting behaviors.

Not only do these approaches get into an ethical gray zone, they are based on faulty logic. We have to remember that the United States is the leading global emitter of greenhouse gases, producing 25 percent of the world’s emissions every year, even though our population accounts for just 4.5 percent of the world total. Many global South countries with rapidly growing populations, like Kenya, emit far fewer greenhouse gases than we do; the average Kenyan produces 0.3 tons of emissions every year, compared with the average American’s average 20 tons of emissions. Clearly, it is what we do, rather than how many of us there are, that drives the climate bus.

As Lisa Hymas argued in her recent article, not all Americans consume the same volume of resources in the same way. Middle and upper class Americans who drive multiple vehicles, build vacation homes, and race to buy every new technological gizmo that comes on the market have a significantly higher carbon footprint than the working class and poor. At the same time, we have to think about the bigger actors that dwarf all of us in their climate-changing behaviors. Mega oil corporations, for example, earn billions of dollars in profits when they extract, burn, refine, and sell fossil fuel products.  And, how could we ever forget the role of the military in this conversation. Its atmosphere-polluting activities are often hidden in the debates over climate change and population growth—a shocking fact, considering that the U.S. military is the single largest consumer of oil in the world.

Despite the fact that they consumer fewer environmental resources, women, communities of color, and the poor suffer more of the impacts of climate change. Climate-related natural disasters, which are on the rise, disproportionately impact women around the world, who are much more likely to drown or die in accidents. Those who survive are more likely to experience domestic violence, sexual abuse, and poor reproductive health outcomes.

Climate change does, however, offers us opportunities to address women’s human and reproductive rights, but the connections must be made in the right way. Ensuring universal access to comprehensive reproductive health services, including emergency obstetric care, both hormonal and barrier methods of contraception, diagnosis and treatment of sexually transmitted infections, HIV testing, counseling and treatment, and referrals for services for gender-based violence, promotes basic human rights–all women have the right to control their reproductive and sexual lives–and are important components of a gender-sensitive approach to adapting to the effects of climate change. Supporting coercive population interventions among the poor as a means of mitigating or preventing climate change, on the other hand, is not a defensible approach.

We must be ever vigilant, keeping the principles of reproductive health, reproductive rights, and reproductive justice for women at the heart of the approach. Through this framework, and the protection of women’s rights to have children, not to have children, and to parent the children that they do have, we can remain on the right side of both the climate justice and reproductive justice debates.

Analysis Politics

Advocates: Bill to Address Gaps in Mental Health Care Would Do More Harm Than Good

Katie Klabusich

Advocates say that U.S. Rep. Tim Murphy's "Helping Families in Mental Health Crisis Act," purported to help address gaps in care, is regressive and strips rights away from those diagnosed with mental illness. This leaves those in the LGBTQ community—who already often have an adversarial relationship with the mental health sector—at particular risk.

The need for reform of the mental health-care system is well documented; those of us who have spent time trying to access often costly, out-of-reach treatment will attest to how time-consuming and expensive care can be—if you can get the necessary time off work to pursue that care. Advocates say, however, that U.S. Rep. Tim Murphy’s (R-PA) “Helping Families in Mental Health Crisis Act” (HR 2646), purported to help address gaps in care, is not the answer. Instead, they say, it is regressive and strips rights away from those diagnosed with mental illness. This leaves those in the LGBTQ community—who already often have an adversarial relationship with the mental health sector—at particular risk.

“We believe that this legislation will result in outdated, biased, and inappropriate treatment of people with a mental health diagnosis,” wrote the political action committee Leadership Conference on Civil and Human Rights in a March letter to House Committee on Energy and Commerce Chairman Rep. Fred Upton (R-MI) and ranking member Rep. Frank Pallone (D-NJ) on behalf of more than 100 social justice organizations. “The current formulation of H.R. 2646 will function to eliminate basic civil and human rights protections for those with mental illness.”

Despite the pushback, Murphy continues to draw on the bill’s mental health industry support; groups like the American Psychiatric Association (APA) and the National Alliance on Mental Illness (NAMI) back the bill.

Murphy and Rep. Eddie Bernice Johnson (D-TX) reintroduced HR 2646 earlier this month, continuing to call it “groundbreaking” legislation that “breaks down federal barriers to care, clarifies privacy standards for families and caregivers; reforms outdated programs; expands parity accountability; and invests in services for the most difficult to treat cases while driving evidence-based care.”

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Some of the stated goals of HR 2646 are important: Yes, more inpatient care beds are needed; yes, smoother transitions from inpatient to outpatient care would help many; yes, prisons house too many people with mental illness. However, many of its objectives, such as “alternatives to institutionalization” potentially allow outpatient care to be mandated by judges with no medical training and pushed for by “concerned” family members. Even the “focus on suicide prevention” can lead to forced hospitalization and disempowerment of the person the system or family member is supposedly trying to help.

All in all, advocates say, HR 2646—which passed out of committee earlier this month—marks a danger to the autonomy of those with mental illness.

Victoria M. Rodríguez-Roldán, JD, director of the Trans/GNC Justice Project at the National LGBTQ Task Force, explained that the bill would usurp the Health Insurance Portability and Accountability Act (HIPAA), “making it easier for a mental health provider to give information about diagnosis and treatment … to any ‘caregiver’-family members, partners or spouses, children that may be caring for the person, and so forth.”

For the communities she serves, this is more than just a privacy violation: It could put clients at risk if family members use their diagnosis or treatment against them.

“When we consider the stigma around mental illness from an LGBT perspective, an intersectional perspective, 57 percent of trans people have experienced significant family rejection [and] 19 percent have experienced domestic violence as a result of their being trans,” said Rodríguez-Roldán, citing the National Transgender Discrimination Survey. “We can see here how the idea of ‘Let’s give access to the poor loved ones who want to help!’ is not that great an idea.”

“It’s really about taking away voice and choice and agency from people, which is a trend that’s very disturbing to me,” said Leah Harris, an organizer with the Campaign For Real Change in Mental Health Policy, also known as Real MH Change. “Mostly [H.R. 2646] is driven by families of these people, not the people themselves. It’s pitting families against people who are living this. There are a fair number of these family members that are well-meaning, but they’re pushing this very authoritarian [policy].”

Rodríguez-Roldán also pointed out that if a patient’s gender identity or sexual orientation is a contributing factor to their depression or suicide risk—because of discrimination, direct targeting, or fear of bigoted family, friends, or coworkers—then that identity or orientation would be pertinent to their diagnosis and possible need for treatment. Though Murphy’s office claims that psychotherapy notes are excluded from the increased access caregivers would be given under HR 2646, Rodríguez-Roldán isn’t buying it; she fears individuals could be inadvertently outed to their caregivers.

Rodríguez-Roldán echoed concern that while disability advocacy organizations largely oppose the bill, groups that represent either medical institutions or families of those with mental illnesses, or medical institutions—such as NAMI, Mental Health America, and the APA—seem to be driving this legislation.

“In disability rights, if the doc starts about talking about the plight and families of the people of the disabilities, it’s not going to go over well,” she said. “That’s basically what [HR 2646] does.”

Rodríguez-Roldán’s concerns extend beyond the potential harm of allowing families and caregivers easier access to individuals’ sensitive medical information; she also points out that the act itself is rooted in stigma. Rep. Murphy created the Helping Families in Mental Health Crisis Act in response to the Sandy Hook school shooting in 2012. Despite being a clinical psychologist for 30 years before joining Congress and being co-chair of the Mental Health Caucus, he continues to perpetuate the well-debunked myth that people with mental illness are violent. In fact, according to the Department of Health and Human Services, “only 3%-5% of violent acts can be attributed to individuals living with a serious mental illness” and “people with severe mental illnesses are over 10 times more likely to be victims of violent crime than the general population.”

The act “is trying to prevent gun violence by ignoring gun control and going after the the rights of mentally ill people,” Rodríguez-Roldán noted.

In addition, advocates note, HR 2646 would make it easier to access assisted outpatient treatment, but would also give courts around the country the authority to mandate specific medications and treatments. In states where the courts already have that authority, Rodríguez-Roldán says, people of color are disproportionately mandated into treatment. When she has tried to point out these statistics to Murphy and his staff, she says, she has been shut down, being told that the disparity is due to a disproportionate number of people of color living in poverty.

Harris also expressed frustration at the hostility she and others have received attempting to take the lived experiences of those who would be affected by the bill to Murphy and his staff.

“I’ve talked to thousands of families … he’s actively opposed to talking to us,” she said. “Everyone has tried to engage with [Murphy and his staff]. I had one of the staffers in the room say, ‘You must have been misdiagnosed.’ I couldn’t have been that way,” meaning mentally ill. “It’s an ongoing struggle to maintain our mental and physical health, but they think we can’t get well.”

Multiple attempts to reach Murphy’s office by Rewire were unsuccessful.

LGBTQ people—transgender, nonbinary, and genderqueer people especially—are particularly susceptible to mistreatment in an institutional setting, where even the thoughts and experiences of patients with significant privilege are typically viewed with skepticism and disbelief. They’re also more likely to experience circumstances that already come with required hospitalization. This, as Rodríguez-Roldán explained, makes it even more vital that individuals not be made more susceptible to unnecessary treatment programs at the hands of judges or relatives with limited or no medical backgrounds.
Forty-one percent of all trans people have attempted suicide at some point in their lives,” said Rodríguez-Roldán. “Once you have attempted suicide—assuming you’re caught—standard procedure is you’ll end up in the hospital for five days [or] a week [on] average.”

In turn, that leaves people open to potential abuse. Rodríguez-Roldán said there isn’t much data yet on exactly how mistreated transgender people are specific to psychiatry, but considering the discrimination and mistreatment in health care in general, it’s safe to assume mental health care would be additionally hostile. A full 50 percent of transgender people report having to teach their physicians about transgender care and 19 percent were refused care—a statistic that spikes even higher for transgender people of color.

“What happens to the people who are already being mistreated, who are already being misgendered, harassed, retraumatized? After you’ve had a suicide attempt, let’s treat you like garbage even more than we treat most people,” said Rodríguez-Roldán, pointing out that with HR 2646, “there would be even less legal recourse” for those who wanted to shape their own treatment. “Those who face abusive families, who don’t have support and so on—more likely when you’re queer—are going to face a heightened risk of losing their privacy.”

Or, for example, individuals may face the conflation of transgender or gender-nonconforming status with mental illness. Rodríguez-Roldán has experienced the conflation herself.

“I had one psychiatrist in Arlington insist, ‘You’re not bipolar; it’s just that you have unresolved issues from your transition,'” she said.

While her abusive household and other life factors certainly added to her depression—the first symptom people with Bipolar II typically suffer from—Rodríguez-Roldán knew she was transgender at age 15 and began the process of transitioning at age 17. Bipolar disorder, meanwhile, is most often diagnosed in a person’s early 20s, making the conflation rather obvious. She acknowledges the privilege of having good insurance and not being low-income, which meant she could choose a different doctor.

“It was also in an outpatient setting, so I was able to nod along, pay the copay, get out of there and never come back,” she said. “It was not inside a hospital where they can use that as an excuse to keep me.”

The fear of having freedom and other rights stripped away came up repeatedly in a Twitter chat last month led by the Task Force to spread the word about HR 2646. More than 350 people participated, sharing their experiences and asking people to oppose Murphy’s bill.

In the meantime, Sen. Lamar Alexander (R-TN) has introduced the “Mental Health Reform Act of 2016” (SB 2680) which some supporters of HR 2646 are calling a companion bill. It has yet to be voted on.

Alexander’s bill has more real reform embedded in its language, shifting the focus from empowering families and medical personnel to funding prevention and community-based support services and programs. The U.S. Secretary of Health and Human Services would be tasked with evaluating existing programs for their effectiveness in handling co-current disorders (e.g., substance abuse and mental illness); reducing homelessness and incarceration of people with substance abuse and/or mental disorders; and providing recommendations on improving current community-based care.

Harris, with Real MH Change, considers Alexander’s bill an imperfect improvement over the Murphy legislation.

“Both of [the bills] have far too much emphasis on rolling back the clock, promoting institutionalization, and not enough of a preventive approach or a trauma-informed approach,” Harris said. “What they share in common is this trope of ‘comprehensive mental health reform.’ Of course the system is completely messed up. Comprehensive reform is needed, but for those of us who have lived through it, it’s not just ‘any change is good.'”

Harris and Rodríguez-Roldán both acknowledged that many of the HR 2646 co-sponsors and supporters in Congress have good intentions; those legislators are trusting Murphy’s professional background and are eager to make some kind of change. In doing so, the voices of those who are affected by the laws—those asking for more funding toward community-based and patient-centric care—are being sidelined.

“What is driving the change is going to influence what the change looks like. Right now, change is driven by fear and paternalism,” said Harris. “It’s not change at any cost.”

Commentary Sexual Health

What the New Breast Cancer Screening Guidelines Mean for Real-Life Women

Martha Kempner

The American Cancer Society recently released new guidelines, raising the minimum age of regular mammograms for women with no known risk factors from 40 to 45. While these guidelines may make sense when you look at population statistics as a whole, on an anecdotal level, they alarmed me as a 43-year-old.

For my 35th birthday, my gynecologist gave me a prescription for a mammogram. It was a little early, according to the American Cancer Society (ACS) guidelines at the time, but she believed a baseline mammogram was important so that radiologists would have something to compare it to in the future. When I hit 40, I got a new prescription from a new gynecologist, who told me that as someone with no other risk factors, from then on, I should get one each year.

I don’t find mammograms all that unpleasant, but I do find them scary because of the inherent “what-if-the-worst-is-true” factor: It’s easy to push it to the bottom of the to-do list instead, to instead ignore the possibility altogether.

Then I heard the story of a friend whose mammogram picked up her breast cancer. Like me, she’s 43, and she’s going through treatment now. It was enough to make me schedule the appointment. “What-if” is scary, but the prospect of having breast cancer and not knowing it is even scarier.

Just days after my all-clear results came in this time around, however, ACS released new guidelines, raising the minimum age of regular mammograms for women with no known risk factors from 40 to 45. The new recommendations are based on research showing early mammograms don’t save many lives and have the potential to cause false positives, unnecessary biopsies, and even unneeded cancer treatment.

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While these guidelines may make sense when you look at population statistics as a whole, on an anecdotal level, they alarmed me. As women in our early 40s, my peers and I were being bombarded with mammogram reminders as recently as last month. Suddenly, we’ve been told not to bother. In fact, we’re not supposed to screen for breast cancer at all (self-exams fell by the wayside years ago, and the new guidelines say in-office exams by doctors are not useful either). Yet, we all have friends our own age who have or have had breast cancer, and we’ve seen enough pink ribbons to remind us just how many more peers will get it in the next decades of our lives. Is it really safe to do nothing?

New Recommendations

ACS’ new guidelines were released last month in the Journal of the American Medical Association (JAMA). They suggest that women who have a normal risk of breast cancer—that is women with no family history, personal history, known genetic mutations, or other diseases that could make breast cancer more likely—can wait until 45 for a mammogram, should get one every year until 54, and then start getting them every other year for as long as they’re healthy and likely to live for ten more years.

The organization also changed its stance on clinical breast exams, which it had recommended annually starting at age 40. The new guidelines do not recommend these for women of any age, unless they have symptoms or breast abnormalities.

But ACS is not the only organization that puts out guidelines on breast cancer screening. The American Congress of Obstetricians and Gynecologists (ACOG) has its own guidelines, which suggest women get a mammogram every year or two between 40 and 49, and annually after that. The National Comprehensive Cancer Center says women should start at 40 and get one every year after that. And, the United States Preventive Services Taskforce (USPSTF) currently says, somewhat vaguely, that the decision to start mammography before age 50 should be an individual one. The recommendations issued by these groups all have varying levels of impact and influence on the medical community, insurance coverage, and public opinion as a whole.

But all of that could be changing based on current research. ACOG told the New York Times that it was going to hold a meeting in January to discuss recommendations and that the ACS would be invited. In response to ACS’s new recommendations, USPSTF said that it would examine the evidence on the cost and benefits of mammography. That group’s statement did add, however, “There are health benefits to mammography screening for women in their 40s.”

Such cautious wording may be a result of a 2009 controversy, which happened when the USPSTF revised its breast cancer screening guidelines and actually recommended against routine mammograms for women under 50. This made a lot of people very upset, because women in their 40s do get cancer and the USPSTF’s opinion on screening tests impacts whether certain tests will be covered under the Affordable Care Act (ACA). The group walked those recommendations back and said instead that women in their 40s should work with their providers to make their own screening decision and then should have annual mammograms from 50 to 74. The USPSTF released a draft of updated recommendations in May and didn’t change anything.

All of these groups review the best available data to come up with their recommendations. However, the data varies widely, both in terms of methodology and potential for interpretation. So it’s not surprising that different experts arrive at different conclusions.

The Science Behind ACS’ Guidelines

Ruth Etzioni, a statistician in the ACS Guidelines Development Group (GDG), which came up with the new recommendations, explained in an interview with Rewire, “Screening as an approach has limitations because you have to screen everybody to save a relative few.” This means that determining whether it’s worth getting screened relies on looking at population trends as a whole. No one, for example, is suggesting that all women in their 20s get regularly screened, because breast cancer is so uncommon at that age. So the panel looked at the risk of getting breast cancer, the possibility of saving lives with screening, and the downfalls of the screening itself.

The data show that the risk of getting breast cancer in the next five years is only 0.6 percent for women ages 40 to 44; it jumps to 0.9 percent for women ages 45 to 49, and 1.1 percent for those 50 to 54. But it’s not simply the risk of getting breast cancer that the panel was looking at; it’s the risk of dying from it, a fairly typical framework of evaluating the efficacy of mammograms. Many of the studies the panel examined review whether mammography at a certain age can lower the risk of death from the disease. The ACS review acknowledges that it can. The article states, “For women of all ages at average risk, screening was associated with a reduction in breast cancer mortality of approximately 20 percent.” But the number of women who will get breast cancer in their early 40s, and the percentage of those who will die from it, is still so small that it might not be worth screening everyone every year, the ACS panel determined.

Another thing the panel took into account was potential downsides of mammograms. No one is suggesting that the x-ray itself has risks. Rather, it’s what happens next—false positives, anxiety, unnecessary additional tests, and over-treatment—that has some researchers concerned. Essentially, the ACS panel determined that the risks of mammography outweighed the benefits until age 45.

According to a 2011 study, 61 percent of women who have mammograms starting at 40 are likely to have a false positive by the time they’re 50. Starting later can cut this number down, as can getting mammograms every other year. Still, the USPSTF, for example, calculated that if 1,000 women follow its current advice and have mammograms every other year from 50 to 74, 146 of them will go on to have an unnecessary breast biopsy and 18 of them will be diagnosed and treated for a cancer that would have never harmed them, which experts call “overdiagnosis.”

An editorial accompanying the JAMA article calls the review an important step forward and notes: “There is uncertainty about the magnitude of mammography’s benefits and harms and how to select patients and screening strategies to optimize the balance between benefits and harms. In the face of such uncertainty, thoughtful, evidence-based guidelines can play a powerful role in shaping policy and practice, supporting decision making by clinicians and patients, and identifying key research priorities.”

The Correct Outcomes

But some medical professionals question the new recommendations. John Cunningham, a breast surgeon with Summit Medical Group in New Jersey, told Rewire that he worries many of the standards and definitions used to judge whether widespread breast cancer screening is effective may not be giving us the right answers.

First, he explained: “I think mortality is the wrong end point. It’s hard to prove to the end result of mortality when there are so many things in between—like the course of treatment—that alter reduction of mortality.” In other words, it’s unfair to hold mammography solely responsible for saving lives, or not doing so, when the decisions made after a cancer is detected—such as how aggressively to treat it—may have more impact on a woman’s survival. Cunningham thinks that a screening test can be considered successful if it finds the disease it is screening for.

In addition, he thinks some of the additional tests that are run after something potentially suspicious is spotted on a mammogram are necessary. For the purposes of the research reviewed by ACS and other groups, every biopsy that comes back as benign is considered a false positive. Dr. Cunningham thinks this unfairly inflates the rates of false positives because sometimes biopsies find something else. “My feeling is that if it finds anything that is pathologically different than normal breast tissue it is not a true false positive,” he said. Even if it’s not cancer, it could require additional treatment, including surgery, or it could help indicate women who might be at a higher risk of developing cancer in the future.

As for overdiagnosis, or the treatment of cancer that would not have hurt patients, Cunningham thinks this label is used too much as well. Most women who fall into this category have something referred to as DCIS, ductal carcinoma in suti, which are tiny growths in the milk ducts. These may or may not become invasive cancer. Cunningham explained: “There are some patients with DCIS who would probably digress to invasive cancer if left long enough, but we don’t know whether that would be a year, ten years, or 20. Since we can’t quantify that, I don’t think we’re over-diagnosing. It’s appropriate. Then we have [to] decide what should be the management.”

Are These Results Really Harmful?

Cancer treatments are unpleasant at best and debilitating at worst. No one wants to be treated for a cancer that they could simply live with, but given that we don’t yet have the tools to know for sure which cancers will and will not become life-threatening, or how long that will take, some women might choose treatment  as the lesser of two evils. Similarly, the panel points to anxiety as one of the harms that comes from false positive tests. Certainly, the days or weeks spent between hearing that your mammogram wasn’t perfect and ultimately finding out that you don’t have cancer are going to be anxious times, but many women might feel it was worth it to know for sure.

Etzioni said she understood that this argument, but thinks women need to have more information about breast cancer and what it takes to screen everyone. She told Rewire that when it comes to individual’s health, “Breast cancer is only one of the things that we have to monitor for, and we need to have perspective. It’s not like taking your pulse or your blood pressure—mammograms, ultrasounds, MRIs, biopsies—everyone coming in to get these, it’s a huge endeavor.” And it makes sense to focus that endeavor on those most at risk. Etzioni added, “Breast cancer is just not a huge risk in your 40s.”

It is true that in absolute numbers you have to screen a lot of people to save very few; approximately five of 10,000 women in their 40s and ten of 10,000 women in the 50s are likely to have a breast cancer death prevented by regular mammography. And though mammograms are relatively inexpensive tests to conduct, nothing is inexpensive when applied to a whole population. Many experts believe that this is just not the best use of our limited health-care resources.

Outlying Stories Are Scary, But Not Typical

This argument makes a lot of sense until it comes down to the individual level—some women do get breast cancer in their 40s and do find out about it through mammography. Take the friend I mentioned in the beginning, Rachel.

“I felt something,” she said to me last week, “in the shower and thought that does not feel normal.” Rachel, like other women my age, was taught to perform self-examination once a month by standing in the shower with one arm over your head and making gentle circles all around each breast. This practice is not taught anymore because research suggested it led to false positives but didn’t necessarily save lives. Still, people our age often do it, and for Rachel it turned out to be important.

Her annual exam with her gynecologist was scheduled for the following week, so she waited and pointed it out to her doctor. The doctor didn’t feel it and said there was nothing to worry about. But Rachel was worried. Luckily, she said, she had already scheduled her annual mammogram because, at 43, she’d been following the old guidelines and was ready for her third exam.

Within half an hour of her mammogram, Rachel got a call recommending further tests, an ultrasound, and another mammogram. Ultimately, a needle biopsy confirmed that the lump was a malignant tumor.

Rachel has since had a lumpectomy and one round of chemotherapy. She’s starting another round of chemotherapy soon because they found some cancer cells in her lymph system. She has an amazing attitude about the whole thing and seems to spend no time wallowing in the “why me.” She was shaken, though, when she heard about the ACS’ new guidelines: “I was shocked and quite frankly really disappointed that the ACS would go on record suggesting that people would wait that long. If I’d waited two years, I would be terminal because that’s how aggressive this was.”

Of course, Rachel is an outlier. And as scary as her story is, it’s far from typical. Remember, there’s only a 0.6 percent risk of getting breast cancer in the next five years for someone her age.

What’s a 43-Year Old to Do?

None of the guidelines—whether they’re from ACS, ACOG, or USPSTF—are binding. Women are free to decide when they start getting mammograms and how often they get them. In fact, the newest guidelines from most of these groups encourage women to work with their providers and make their own decisions. And no one expects the ACA, which takes multiple groups’ guidelines into account, to stop covering mammograms for women in their early 40s.

I’m a cautious person who is prone to dwelling on mistakes. I would gladly exchange a few false positives for the peace of mind that knowing my breasts are fine from year-to-year will bring me. But not all women feel that way. My friend Catherine, who works in public health, said she’s refused mammograms thus far despite the recommendations of her gynecologist. She told me, “I’ve had a ton of radiation in my life, I have a lot of test anxiety, and I have no history of breast cancer in my family. So given the numbers, I’m going to wait until I’m 45.”

Many women will likely do what their own provider recommends, and Cunningham said it’s unlikely that health-care providers will change their advice based on the ACS guidelines. If the medical expert community, including ACOG or the USPSTF follows suit, however, that shift may trickle down.

Cunningham, for one, said he will continue to recommend mammograms beginning at age 40. He pointed out: “ACS’ own discussion says there’s no question that screening mammography reduces mortality—we just can’t quantify how much it reduces mortality but it could be as high as 20 percent. How can you say that’s not beneficial?”

In fact, he said of the JAMA article, “I read it and I think you could come up with your own conclusion. My own conclusion is you just proved to me I should be doing it more.”

One thing that everyone seems to agree on is the need for tests that are more accurate than mammograms, and new ways to determine risk factors so that those tests can be targeted at women most likely to get breast cancer. Unfortunately, these may be years away. And for now, many women, and even health-care providers, are confused.

Etzioni said, though, that this could be a good teachable moment. “People don’t understand the point that screening has limitations and they have a lot of anxiety” about cancer. This, she said, is “understandable, but this is a great opportunity to educate people.” She added, “The guidelines provide guidance and control to do what they feel will work best for them.”