Pregnancy, contraception, and misinformation on social media

A recent article in the Washington Post, “Women are getting off birth control amid misinformation explosion” (March 21, 2024), by Lauren Weber and Sabrina Malhi, discusses a recent explosion of misinformation about contraception on the Internet. More important, it notes the more serious result – women getting pregnant when they didn’t want to be because they believed this misinformation and acted on it by not using effective contraception. In many cases, according to anecdotal reports, women have sought abortions but found themselves living in states that made this difficult or impossible.

The article is not paywalled but does require (free) registration to read, so I will include some of the other important points in it.        

•  Much of the misinformation is especially found on sites like TikTok and Instagram that are followed by young people.
• Many of these sites and posts are by people with no medical training or credentials, but who cite their personal experiences, and such ideas as “natural” (whatever that is or isn’t).
• Many of the latter are folks trying (or succeeding) in developing careers as social media “influencers"; in addition to the usual ways of making money (advertising or payment from companies for promoting their products) they also can actually sell their services (one “charges hundreds of dollars for a three-month virtual program that includes analyses of blood panels for what she calls hormonal imbalances.”).
• An OB/Gyn physician in DC says that many of the women he sees “have traveled from states that have completely or partly banned abortions, he said, including Texas, Idaho, Georgia, North Carolina and South Carolina.”
• A variety of experts have cited the particular vulnerability of “Women of color whose communities have historically been exploited by the medical establishment may be particularly vulnerable to misinformation, given the long history of mistrust around birth control in this country… [including] forced sterilizations of tens of thousands of primarily Black, Latina and Indigenous women happened under U.S. government programs in the 20th century”.
• Much of the misinformation is propagated by those with political, social, and religious agendas.

This is a lot of things. Some of them need to be addressed on an individual basis by doctors and other health professionals when beginning women on contraceptive treatment. Especially important is identifying, which requires asking about, any concerns women may have, what the source of that concern is, and honestly discussing potential side effects. The discussion should address what those side effects do, and do not, indicate, ways of treating them, and effective alternatives if they get too serious. The most important point about both hormonal (oral contraceptive pills, implants, and some IUDs) and long-acting reversible contraception (LARC, mainly IUDs and implants) is that they effectively prevent pregnancy and are generally are what women who are having sex and do not wish to become pregnant should use. But if there is not (or is insufficient) discussion about worries that women have about the other effects of contraception, and as a result they are not used, or not used appropriately (e.g., oral contraceptives must be taken daily), unplanned and undesired pregnancy may be the result.

It is true that there is a horrific history of medical experimentation (and exploitation) of Black people in the US. The most famous is the Tuskegee Study, which followed a group of Black men with syphilis to study its “natural history” for years after treatment was available – but not given to them. Black women were victims of forced sterilizations, long after slavery, carried out by leading American physicians such as J. Marion Sims, whose statue in New York City was recently taken down (photo in this excellent review in The Intercept) and continued until relatively recently. A New York Times article from 2022 focuses on two sisters who were only in their early 60s at the  time, and were sterilized in 1973 at 14 and 12. It is unsurprising that, given this history, that Black and other minority women may legitimately be suspicious of treatments that affect their reproductive capacity.

It is also important to remember that all pregnancies, even when desired, carry health risks greater than that from any contraception. A recent piece in The Hill reports that nearly 40% of Black women of reproductive age are very concerned about the risks to their health should they become pregnant, especially with the repeal of Roe v. Wade and the restrictions on or abolition of abortion in many states. There is a great disparity in maternal mortality. As the Hill article notes

Studies show Black people who give birth are three to four times more likely to die from pregnancy-related causes than their white counterparts, while Black infants are two times more likely to die within their first year than white infants. Reasons for the disparities are nuanced, but many point to systemic racism in the health care system that dismisses Black women’s symptoms.  

That these fears are not unwarranted is horrifying, but to the extent that people are aware of them suggests that the misinformation on social media is not the only message getting out, and that accurate information is being provided by knowledgeable and trusted groups such as In Our Own Voice.

There is no question that right-wing, anti-abortion forces are behind much of the misinformation about contraception that is rampant on social media. But why? After all, if their concern is limiting abortions, the most effective way is to limit the number of unintended pregnancies, and this is what contraceptives do. While I have heard this argument made by a number of organizations and individuals who work for funding of contraception but not (necessarily) abortion, it doesn’t seem to get much traction with the bulk of the right-wing “anti-abortion” movement, which is also frequently are anti-contraception. What is this about?

There are a number of possible reasons. Perhaps it is related to the fact that often those providing contraception, such as Planned Parenthood, also provide abortions so that, in the thinking of these groups, contraception becomes tainted by association. It may also be a revulsion to sex, especially if undertaken for any purpose other than conception – in marriage.

But if sex is only ok if it is for conception and within marriage, why would they want to deny contraception to women who are having sex when they are not married and are not desiring to be pregnant? One answer is that they have an overall intent to control, restrict, and punish women, who they believe should have no agency. Men, of course, are just men and can be forgiven their “lack of control”, and even rape (like some presidents) but women are guilty and sinful even when they are the victims of that rape.

It is likely that the misinformation on social media is a result of all these factors, from “influencers” who are seeking fame and fortune to those promoting right-wing political and social agenda. Or maybe it is just all about providing misinformation so people can not effectively do what they want to. Whatever the reason, however, women should not be forced to risk pregnancy when effective and safe contraception is available, and certainly not be forced to find themselves requiring, and unable to get, an abortion.

Whatever the intent of the “misinformers” is, the result is the same, and bad.

COVID is still with us. Vaccine resistance is real, and it is dangerous

That there are a lot of people who are vaccine-resistant will be news to no one at this point. I wrote about this on May 17, 2021 (COVID, Vaccine, Racism, and Masks: Changing for better or for worse?), and while many people who were initially resistant have now changed their minds and have gotten (or in many cases, are trying to get) vaccinated, there is a hard-core residual group. There are a variety of reasons that people have, and sometimes articulate, for not getting vaccinated.  These include a lack of knowledge (hard, I know, given the amount of discussion) and a mindset that disbelieves those who are in power (also in some ways understandable; they do lie a lot). This is complicated for some parts of the population, particularly members of minority groups like African-Americans and Native Americans, by the fact that the US history is loaded with stories of exploitation and oppression and infection, from the passing out of measles and smallpox-infested blankets to Indians to the Tuskegee experiments that denied treatment for syphilis to Black men and many other crimes.

But at this point, there are no responsible people at all who are urging folks to not get vaccinated. Virtually all doctors, epidemiologists, and scientists have been (with some effectively evil exceptions, such as Joseph Mercola, DO (The Most Influential Spreader of Coronavirus Misinformation Online). Inversely, I mean anyone who is (which unfortunately includes many politicians, FoxNews personalities, and other “influencers”) is not responsible. COVID is real, it is infectious, the Delta variant is more infectious, it makes people really sick, and it kills people. A lot of people. Irrespective of whether they believe it is “real” or “dangerous” or not. Indeed, most of the people dying now (over 95%) in the US are those who have not been vaccinated. There is definite evidence that people who are vaccinated CAN get infected, and maybe even a few of them will die, but this is also definitely being overplayed by the media. Most of the media does not lie, exactly, but most people don’t go beyond the headlines and a very large number have no concept of relative risk or odds (I would assume, therefore, that poker players have been vaccinated!) You can cross the street very carefully, on a green light, at a corner, looking both ways, and still be hit and killed by a car driven by a lunatic speeding around the corner. But it is pretty unlikely compared to, say, running across a busy 6-lane highway without looking. Most folks can get that kind of relative risk, and it is not really unlike the risk of being vaccinated or not. This graphic illustrates that risk:                                                

Another way to express it, with a more traditional line graph, by county:

A recent article in the NY Times, “Workplace vaccine mandates reveal a divide among workers” describes another way that workers are being divided, not just by whether they are willing to be vaccinated, but by whether their employers are willing to mandate (and pay for) vaccination for them. Apparently, they are for white collar workers who they want back in the office (not clear why) but not necessarily for the blue collar workers, those who actually do work that cannot be ‘phoned (or Zoomed) in’ but requires their physical presence, those people who have often been called essential workers. Walmart, for example, ‘announced mandatory inoculation for employees at its headquarters and for managers who travel domestically. For a sense of scale, about 17,000 of Walmart’s 1.6 million employees are expected to work in new headquarters in Bentonville, Ark.’ The argument for this seems to be that companies like Walmart need lots of workers and don’t want to alienate those who don’t want to be vaccinated by mandating it. But somehow it is ok for office workers. I am not sure that I understand this, but it must have something to do with pay: if you get paid a reasonable living wage you are more likely to be willing to get a mandatory vaccine, and you should anyway. It seems to me that if Walmart and other companies wish to increase the demand for their jobs, the better way to do it is: pay more!

We read that ‘Trump's COVID-19 testing czar warns the unvaccinated: 'You’re going to get the delta variant' (The Daily Kos article’s author notes that they didn’t remember that #TFG had  a testing czar. Neither did I.) Of course, a lot of people regret having not been vaccinated once they end up sick, hospitalized, and on a ventilator, like conservative radio talk show host Phil Valentine and others covered in a recent article in Rolling Stone. The NY Times also had an article titled “They Spurned the Vaccine. Now They Want You to Know They Regret It”. I heard from a friend about a hospital-based health professional (not a physician) they knew who had been vaccinated but ended up on a ventilator, which was very concerning. A few weeks later, we called to follow up. Guess what? Turns out they weren’t vaccinated; they and their whole family were lying. Embarrassed. Reassuring, in one sense, but also very worrying that folks are lying.

I hope that others who have reservations will take their advice and get vaccinated. It is, of course, a bit disingenuous; if they knew they were going to get sick and maybe die they would have gotten vaccinated. If we had known  that the roulette wheel was going to come up black, we would never have bet on red! You can’t be sure what will happen to you, but the important point is that you have to do it because you might, and at least as important, because you can infect others.

But there are many people who steadfastly believe that being vaccinated is not for them, and some who believe that it is not for anyone. They are getting sick, and will continue to get sick, and infect others, and cause others to die. They will not wear masks, and they will not wear signs. When they say that vaccine mandates, or mask mandates, are oppression, they are being, frankly, ridiculous.

The pandemic is not over. Delta is very serious. Get vaccinated. Wear a mask indoors.

I cannot resist including two other posts that make that point: 

  

COVID, Vaccine, Racism, and Masks: Changing for better or for worse?

We are not yet out of the COVID pandemic. Not in the world, where hot spots linked to both bad luck and irresponsible arrogant governments continue to rage in such places as Brazil and India, as well as in some countries in Europe and in other parts of the world. Not in the US, despite the CDC indicating that it is now ok for those who are vaccinated to stop wearing masks. People are still dying in large numbers, people are still being infected, and this map of the US does not show all light-colored, low-risk counties (the gray counties, and state of Alabama, have to do with nonreporting).

But things are getting better. We no longer have an ignorant, evildoer in the White House who is intent on ensuring that as many Americans die as possible (while he himself got every a

vailable treatment when he was sick, and indeed got vaccinated), but there are still plenty of Americans who are loyal and faithful to him (or to the myth of him), and to the wacko conspiracy theorists on the dark part of the web. Many of these folks are vaccine-hesitant or vaccine-resistant.

A lot of the coverage of these attitudes has been in minority, and particularly Black, communities. There is definitely resistance there, and to a large degree it is based on the experiences of those communities with the health care system. Some of this may be, in fact, the oft-cited historical examples of exploitation and experimentation on Black people in this racist nation. These include (probably most famous) the Tuskegee study of the “natural history” of syphilis in Black men that continued even after a cure (penicillin) was discovered; they were not treated. They also include the work of the “father of gynecology”, Dr. J. Marian Sims, whose discoveries were based on non-consented (of course) surgery on Black slave women, for a foretaste of Nazi doctors. They include, more recently, the fact that the HeLa cell line, derived from a cancer in a Black woman, Henrietta Lacks, has been basis of many discoveries to treat cancer, but she was not cured and neither she or her family received recognition (or money, despite much going to researchers) for it.

Many Black Americans know these stories, and it is probably true that, to some degree, they influence the reluctance of some people to put their fates in the hand of the healthcare system and to trust the government, including the CDC. But I would posit that a larger reason is not these near-mythical (although very real) abuses, but the more mundane, everyday abuses that people, especially poor and minority people, have experienced at the hands of that system. It is no fun to be sick, no pleasure to need treatment, and the arrogance of much of our health-system culture to its patients is very often confusing, frustrating, unpleasant, and demeaning to even well-insured and well-to-do White people. How much greater are all of these indignities – and too often abuses – if you are not insured or poorly-insured? If the massive health care institutions that have been built in pursuit of profit do not really want to care for you, or offer you their special magic bullets available to those with more money? How much greater than even that is it when you are Black, and endure the overwhelming manifestations of American structural racism as delivered by the healthcare system? When the presumption is you are more likely to be the cause of your own problems, because of your behaviors, or your self-abuse, when the presumption is that you are guilty of not-always-clearly-stated malfeasances, that you are stupid and ignorant and not to be trusted?

Sure, Tuskegee and Sims and HeLa came from the same racism, but you don’t need to even know about them at all to know that the health system is stacked against your, and your family, and your friends, and your community, and not always to be trusted. So maybe you’re not sure about getting that vaccine. And many Black Americans, and other minorities are not sure. But they aren’t the majority of the “vaccine skeptical”, despite getting more attention. The “traditional” anti-vax community is largely White, educated, upper-income and centered on the coasts, especially the West Coast. It is represented by a legion of celebrities and other famous people, including Robert Kennedy, Jr., Jennie McCarthy, Mayim Bialik, even (until recently) Oprah Winfrey. In the COVID pandemic, they have been joined by another much larger cohort, overall less educated and wealthy but just as White – the Trumpers. Following the incorrect and dangerous information that continues to spew from their leader, they now believe that the vaccine is ineffective, probably bad for you, and likely a result of a conspiracy of foreigners. You can look into the Dark Web, or QAnon to find this information, or just turn your dial to FoxNews. And while there are organized efforts by Black leaders, including celebrities, to urge folks to receive the vaccine, there is no comparable campaign among by the heroes of the White right.

Many articles have appeared documenting the degree to which our emergence from the COVID shutdown is going to depend upon adequate numbers of people receiving the immunizations. Health authorities, nationally and in state after state, have dropped the age criteria for being immunized, so that at this point in many jurisdictions, only infants are ineligible. And folks are still being immunized; while the rate of immunization has decreased from the peak, it is still being actively pursued by many people. But what is scary is that there are so many who will not receive it. And they won’t wear signs.

Were you worried about a third wave of COVID? Or is it now fourth? I forget. Anyway, good idea to worry. The CDC has indicated that those people who are fully vaccinated can now not wear masks in public. There is actually good scientific evidence for this, and it would certainly help people to feel like a corner has been turned. Except – they won’t wear signs. As reported by the Associated Press on May 15, 2021, while many small businesses are embracing the new opening and taking down their signs requiring masks, not wanting to “have to play police” any more, many large chains are continuing their mask policies.

‘As many business owners pointed out, there is no easy way to determine who has been vaccinated and who hasn't.’ 

‘And the new guidelines, issued Thursday by the Centers for Disease Control and Prevention, essentially work on the honor system, leaving it up to people to do the right thing.’

Right. The honor system. The folks who stormed the US Capitol, who stood with guns outside the Michigan State Capitol to oppose masking (in the state which now has the highest COVID rates in the US), who believe that COVID is a hoax, that Trump won the election, that Nancy Pelosi is the devil, and that Jews have space lasers, will be honorable enough to wear masks when they haven’t been vaccinated.

Good luck with that.

What are the practical steps that we in medicine can take against racism?

This is a guest post by Seiji Yamada, MD, MPH & Gregory Maskarinec PhD, colleagues from Hawai'i

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In this essay, we discuss what we in medicine in Hawaiʻi can do about racism.

This NY Times opinion piece "It’s Not Obesity. It’s Slavery" by Sabrina Strings, an associate professor of sociology at the University of California at Irvine, decries the victim-blaming attribution of the disproportionate coronavirus risk among blacks to their co-morbidities. The essay starts off as follows: 

About five years ago, I was invited to sit in on a meeting about health in the African-American community. Several important figures in the fields of public health and economics were present. A freshly minted Ph.D., I felt strangely like an interloper. I was also the only black person in the room.

One of the facilitators introduced me to the other participants and said something to the effect of “Sabrina, what do you think? Why are black people sick?”

It was a question asked in earnest. Some of the experts had devoted their entire careers to addressing questions surrounding racial health inequities. Years of research, and in some instances failed interventions, had left them baffled. Why are black people so sick?

My answer was swift and unequivocal.

“Slavery.”

What Sabrina Strings is pointing out here is the importance of history and its legacy of ongoing structural violence. Interviewed by Fareed Zakaria on "Why COVID-19 hit black Americans so hard," Harvard School of Public Health Prof. David Williams notes that for every dollar of income made by white households, black households make 59 cents. For every dollar of assets owned by white households, black households own 10 cents, and Latino households own 12 cents.

The Academic Medicine article "Changing How Race Is Portrayed in Medical Education: Recommendations From Medical Students," outlines how American medicine was historically steeped in racism. We also have the historical legacy of the Tuskegee, a United States Public Health Service study in which 399 black men were observed for decades with their syphilis infections untreated. Who was the first to object? Dr. Irwin "Irv" Schatz, former chair of the University of Hawai`i Dept. of Medicine, in 1965.

Closer to us in the Pacific, we have the legacy of the Marshall Islanders, deliberately exposed to fallout radiation Project 4.1 of the March 1, 1954 Castle Bravo thermonuclear test, then subsequently subjected to human radiation experiments for which they gave no consent. 

That the Marshallese had their human rights denied in this way reflects how they were viewed as less than human. With regard to Utrik Atoll, in a post-Bravo 1956 research planning meeting of the Atomic Energy Commission (AEC) Advisory Committee on Biology and Medicine, Merril Eisenbud, the director of the AEC Health and Safety Laboratory, noted (as quoted by Barbara Rose Johnston 2007, 25):

They had been living on that Island; now that Island is safe to live on but is by far the most contaminated place in the world and it will be very interesting to go back and get good environmental data, how many per square mile; what isotopes are involved and a sample of food changes in many humans through their urines, so as to get a measure of the human uptake when people live in a contaminated environment.

Now, data of this type has never been available. While it is true that these people do not live, I would say, the way Westerners do, civilized people, it is nevertheless also true that these people are more like us than mice. So that is something which will be done this winter.

[Photo: Holly Barker, Bravo for the Marshallese]

 That migrants from Micronesia continue to be denied participation in Medicaid (Med-QUEST) also reflects how they continue to be viewed as the "other" - not deserving of the access to health care as the rest of us. Micronesians also experience racism within Hawai`i's health care system. (See "Discrimination in Hawai‘i and the Health of Micronesians and Marshallese" and "Chuukese community experiences of racial discrimination and other barriers to healthcare.")

The public policy is complemented by more overt racism. One of my Chuukese patients (a man with two jobs, while his wife worked another, but living out of their car) reported to me that he was stopped by the police, told to exit his car, and was slammed against the hood of his car by the policeman.

What are the practical steps that we in medicine can take against racism?

We need to address the systemic racism against Native Hawaiians and Pacific Islanders.

We need to address the distrust that Native Hawaiians and Pacific Islanders have toward the health system and its practitioners to improve access.

We need a health insurance system that includes Micronesians.

We must address the economic marginalization of people who work full-time but cannot afford a home.

We must address the catastrophic on-going military occupation of these islands.

This is a broad outline of the steps that must be taken. We call upon all involved in medicine in Hawaiʻi to make it a reality.

#BlackLivesMatter