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.

PBMs, pharmacies, and insurance companies: Three legs of a many-legged stool. Or cabal.

PBMs. What are they? Pharmacy benefit managers. Oh, thanks. That clears up a lot!

Well, they are big and important in the health care industry, which should give you a clue: they are somewhere between “not about helping you” and “evil”. Unfortunately, this describes almost every big corporation (pharmacies, insurers, pharmaceutical and device manufacturers, and large health care “provider” corporations) that is involved in health care, or more realistically, sucking money out of the public (directly from you or your government) that was intended to provide health care.

But, back to PBMs. They are, as the name suggests, “managers”, in this and many other cases another word for “middlemen”, set up to be intermediaries between the pharmaceutical companies and pharmacies and insurance companies and you, the consumer (remember that last, “you the consumer”, the one entity in this calculus that has very little weight?). Much of what PBMs do, and a lot of the things that they do that make them more money (and thus could be called “abuses”, since they are not about the only important thing, maximizing the health of the people) are described in this piece from American Progress, “5 things to know about pharmacy benefit managers”. In addition to receiving payments for their services from insurance companies (presumably a legitimate fee, although perhaps for a service that benefits the insurers and not you, and as we shall see below, another scam as many of them are owned by insurance companies!), they also have other little “tricks”. Pharmaceutical companies (another huge pig at the trough of health care dollars) frequently offer discounts in the form of rebates on the cost of expensive drugs – and often, to be fair, negotiated by the PBM – intended to help the consumer. But the PBMs often keep a portion of that rebate. More insidious is that this rebate is a percentage of the price, so the higher the price, the more the PBM gets to pocket. This may (and often does) lead to their “preferred drug lists” having the most expensive drugs as preferred. While this does not cost the patient more (because it puts it in a lower tier), it does make more money for the PBM.

PBMs also engage in “spread pricing” where the amount they receive from the insurer for a drug is more than they pay the pharmacies. And they keep it. And the cost of your insurance and your co-pays can go up to “repay” the insurer for the payments that they make to the PBM. Most of us are familiar with paying for things at a discount, only to discover that the discount is from an inflated “list price”, which already includes a sizeable profit for the vendor. Nowhere is this as common as in drugs; if you have a drug plan (say, Medicare Part D) you are likely to discover that what you pay for your drugs (your co-pay) doesn’t count to your annual deductible, since the insurance company and PBM (now often one and the same) have decided you are already getting a good deal from the discounts that they have received, even when they are pocketing the spread. In 2018, Ohio discovered its Medicaid program was paying $220 million more to PBMs than the latter were paying to the pharmacies for them! Entrepreneurship? Criminal theft?

In a recent piece on his substack, Health Care Un-Covered, health insurance industry whistleblower Wendell Potter describes how ‘The PBM-insurer mafia comes for community pharmacies’. The first important item is contained in the title – “PBM-insurer mafia” – now these two entities are not in competition but in collaboration as two of the “Big 3” PBMs are now owned by insurance companies (OptumRx by United Health and ExpressScripts by Cigna), and the third (Caremark) by a pharmaceutical chain, CVS. This follow the pattern prevalent in all industries, but particularly in “health care” of increasing consolidation, vertical integration, and monopoly power. As Potter describes, one victim of this has been independent community pharmacies. Why such independents are good and of value is eloquently described by one such pharmacist quoted in his piece, so I  won’t re-quote it here; suffice it to say it is what you can imagine is lacking in corporate chains – personal service to people. The benefit to the PBMs of putting independent pharmacies out of business and shunting prescription business to the chains is obvious for CVS/Caremark, but also true for ExpressScripts since it has a deal with Walgreens. And, of course, for all in insurance companies to their owned mail-order pharmacies (which you may get regular emails urging you to use). As is always the case, the lowest income people (who often have the worst insurance coverage, or have Medicaid) are the worst hit, but increasingly insurers and their PBMs have found ways to screw all of us.

There has been increasing political pushback, finally. ‘Last year, Republican Ohio Attorney General Dave Yost said that “PBMs are modern gangsters.”’ This year, Senate Finance Committee Chairman Ron Wyden (D-Ore.) and Ranking Member Mike Crapo (R-Idaho) tried to get new legislation passed; ‘“The time for PBM reform was yesterday,” Wyden said. “It’s past time to crack down on the shady practices of these pharma middlemen that result in higher drug prices for consumers and threaten pharmacies across Oregon and nationwide. I’ll be working around the clock to get this done as soon as possible.”’ But it hasn’t yet passed; it is hard to get consensus on anything in Congress these days, and the insurance companies and PBMs have very powerful (and generous!) lobbies. ‘In recent months, an independent pharmacy, Osterhaus Pharmacy, in Iowa, sued the major PBMs over DIR* fees. In its lawsuit against UnitedHealth, it stated, “This vertical consolidation has served OptumRx well. It now controls not just the pricing of drugs, not just the selection of the drugs covered by Part D Plans, and not just the selection of pharmacy services providers in each Part D network; OptumRx also controls access to almost a quarter of the Medicare beneficiaries enrolled in PBM‐affiliated Plans.”’

Yup. If you are convinced that such consolidation (monopolization) of our health care system is a good thing for efficiency and effectiveness, you should have a UnitedHealth poster on your wall. They are the largest “health” insurance company, control the largest share of Medicare “Advantage” clients, own the doctors’ network Optum, and, as above, control OptumRx. The last two are very big moneymakers for them, and account for much of their growth and profit. But the others are just as bad and would like to be as big.

On the other hand, perhaps you are not so convinced. In which case you should be calling your senators and representatives and letting them know that they should be supporting legislation to rein in the PBMs. And, while they’re at it, the insurance companies. And all the big profit-making corporations jacking up the cost of health care while limiting the care.

They have the dollars. But we have our voices, and our votes!

 

*DIR: Direct and Indirect Remuneration fees, which are charged to pharmacies by PBMs. A much more detailed description of them is in Potter’s piece, but in brief they are another method for the PBMs to scam more money, and to do so without any meaningful transparency.

"Health care" Corporations are Evil. Most of the people who work for them are not. Fight back!

Usually, when I write a blog post, I start with something that has happened or is happening, try to develop it and point out the relationships between it and other things that are happening. Toward the end I make an effort to form a conclusion, and, perhaps even make suggestions as to how the problem(s) might be addressed. However, today I think I’ll lead with the conclusion, so folks do not have to read too far:

All of the US healthcare industry (not system) is run by corporations that are effectively evil.* They function for only one purpose: to suck as much money, in the form of profits, stock price, and executive salaries (the executives, who are people, are of course evil) from our economy under the false flag of providing health care. They care not one whit about the health of people, society, or community, nor about decency. They include insurance companies, large hospital systems and provider groups (often owned by insurance companies and -- the exemplar of morality-free rapacious profit -- private equity), pharmaceutical companies and device companies, the large pharmacy chains (e.g., Walgreen’s, CVS) and the PBMs (pharmacy benefits managers) that control drug distribution.

*[I do not believe that corporations are people, despite the scandalous Citizens United decision that decided that they were and that money is speech, so are without human characteristics.]

I could end it there, and say “if you have any questions, read my previous blogs, and the references I cite”, but I will go to talk about a few recent events and actions that bolster this case. First, however, I want to talk about people, the people who work in health care, the people who the other people (called “patients”) seeking health care actually run into. Almost uniformly, they are not the problem. From the higher-paid physicians and other clinicians, including nurses, who provide clinical care, to the pharmacists and pharmacy assistants who dispense medications, to those who answer the phones, schedule appointments, take questions to be transmitted to the clinicians, and even collect money, these are overwhelmingly hard-working people trying to do a good job of serving you. They are almost all employed, however; even about 75% of physicians (and growing) are employed by corporations. If your doctors seem rushed and not to have enough time for you, if they are focused on computer screens, if they don’t quickly call you back, this is not their choice, it is the mandate of the corporation that employs them. It is essentially the same as the traditional “speed up” for assembly line workers: to be “more efficient”, a euphemism for “making more money for the corporation”. The same is true for the clerks who may take a lot of time to answer the phone, or who are “unwilling” to cut you some slack on your bill (when really they do not have the power to), or the pharmacist who takes “too long” to fill a prescription or provide you with the information that you need. These are, by and large, good people trapped in a heartless system.

And, yet, because these are the people –physicians, nurses, pharmacists, clerks – whom we, as patients, see and interact with, they are the ones on whom we take out our frustrations when we feel we are not being treated as we should be. When we are denied care when we are late because the bus was delayed, or because we had to get our children off to school but the early appointment was the only one available, or because we don’t get off work until 4:15 but the 3:30 appointment was the last available. Yes, like the rest of us, all these people in healthcare want to work reasonable hours and get home on time, but the rules that they are required to enforce are not made by them. They are made by the corporate executives, those who have sold their souls, the CPAs and MBAs (and occasionally MDs and RNs, but usually those also have MBAs) whose expertise is in making money for the corporation, not in serving you, and who are handsomely rewarded for it. They are the people who are responsible and to whom your anger should be directed, but good luck getting to them. Maybe you can reach the CEO of a small rural hospital (who will almost never be the real CEO, since it is probably owned by a large hospital corporation) but not the heads of the insurance companies and pharmaceutical companies and massive health systems and private equity owners of all of these. More than the highest Mafia dons, they are protected by layers and layers of others who keep them from having to interact with you. But they ARE the evil people (even if, like those Mafia dons, they are nice to their children), creating, maintaining, and expanding an industry designed to extract as much money as possible from the economy and mis-label it “health care”.

The idea that this skates close to the edge of what is legal is disingenuous. It is often illegal; a huge part of the industry regularly acts illegally. We want there to be laws against such abuse, but even when there are they are irregularly, even rarely, enforced largely due to inadequate funding for the regulators. This is on purpose; those huge corporations have the money to buy – I mean donate to – congresspeople and also offer high-paid jobs to former regulators who “behaved” in the revolving door system. And when the rules are enforced, the fines are relatively low, and are just written off as a “cost of doing business”

Examples?

How about “Whistleblower Accuses Aledade, Largest US Independent Primary Care Network, of Medicare Fraud”, KFF Health News (March 5, 2024)? Using a practice known as “upcoding”, the company employs large numbers of people to add additional diagnoses to the one for which the person is being treated, increasing the reimbursement. This practice results in greater fee-for-service payment, but is even better (for the company) in increasing the “capitated payment” that they get for a particular “covered life”, both in general managed care and in Medicare Advantage programs. In this case, and in many hospitals, it is the provider who is fiddling the data to get more money from the insurer (which, in the case of Medicare Advantage, as well as Medicaid and some other programs, is the government – that is, you, the taxpayer).

But let’s not cry for the poor insurance companies, although they would like you to think it is the doctors and hospitals who are at fault for milking them. Even when something very bad happens, like the recent cyberattack at the largest health insurer, UnitedHealth, in which they may have paid a $22M ransom, it is the providers who are not getting paid. UnitedHealth is doing just fine, thank you. Not only is $22M not that much for them, but as pointed out by former insurance executive and current whistleblower Wendell Potter in his substack

Keep in mind that while the company is unable to pay thousands of the country’s doctors and hospitals for who knows how long because of the hack, UnitedHealth will be able to hold on to billions of dollars in premium income longer, and that will boost its investment income, which is considerable on any day of the week.

They have the system covered from all angles. UnitedHealth has moved into owning practices directly, through Optum, a very large provider and the source of a big percent of their profit. Along with their Medicare Advantage products.

Indeed, as providers and insurers point the finger at each other, and as pharmacies buy up the PBMs that control utilization, increasing vertical integration, and as private equity companies buy up all of these, there is one thing that you can be sure of: the benefit to the customer, consumer, patient, person, society is the one thing not being considered. We are the collateral damage in the fights among these amoral (at least, really immoral) behemoths.

What can we do? It often seems like there is not much. Our feeble cries are drowned out by the corporate contributions to our congresspeople. But we can let our elected representatives know that we are on to the abuses by those companies, and that we hold them responsible for holding (or not holding) the corporations responsible. We can, for example, demand something specific, that they sign on to the Patients over Profits pledge (initiated by National Nurses United, NNU, and now sponsored by many patient and community groups):

I pledge to put patients over profits and not take contributions over $200 from the executives, lobbyists, and PACs affiliated with the corporate health care industry, including private insurers, pharma corporations, and private hospitals who are organizing to take over our health care system.

They won’t if just a few of us ask. But if LOTS of us do, they just might.

And that’s a start.