Administrative Burdens of Being Sick: Drugs

I sat down the other morning to fill my pill sorters for another month and discovered that the pharmacy only dispensed ten pills, instead of 30, for the prescription I’d filled the previous day.

I called them up and left a message. No reply.

I drove back to the pharmacy with the bottle. Did my doctor’s office make a mistake in the prescription, or was there a mistake in filling? Good question, said the pharmacist.

Tap tap tap.

We ran out, he said. We don’t know when we will have more. No, we can’t call you when we get more in. No, we can’t give you the rest of the prescription. You’re going to need a new prescription from your doctor. And you can’t fill it for ten days.

I got so frustrated I walked off to calm down, and then went back and apologized to the pharmacist for dumping drama on their day. They were very, very nice about it.

It’s of those ADHD meds. A controlled substance. So the hurdles for filling the prescription are high, very high. 

Once, I waited for half an hour in a busy CVS because the pharmacists had to keep the stuff in a vault, enter a passcode, and wait three minutes. They kept missing the window to open the safe because they were busy helping other patients.

Everyone needs their meds.

But why shortages?

It’s not just ADHD meds — weight-loss drugs and antibiotics also regularly run short, making patients sicker (and sometimes dead) while doctors sink even deeper into bureaucratic quicksand. Almost nine out of ten primary care practices, and one in five patients, struggle to get the medications they need.

For one thing, there’s a profit motive. Is there ever not a profit motive?

Pharmaceutical companies aren’t doing research on antibiotics because they don’t think they’ll make money on them. Insurance companies pay as little as they can manage — which seems reasonable given the cost of drugs with no generic equivalent, but then pharmacies lose money and stop stocking the meds. Which brings us back to the manufacturers, and how they use legal games to keep patents in force.

Albuterol, a widely used asthma medication, was developed in 1966, first sold in 1969, and patented in 1972. The most recent patent expired, finally, in 2020. 

But the supply of ADHD medications has unique limitations.

The DEA says ADHD meds are addictive and controls how many pills can be made every year. In 2022, they cut production of one group of ADHD drugs by almost 30%, resulting in immediate shortages. Drug manufacturers exacerbated the issue by failing to produce their full quotas.

Meanwhile, Covid lockdowns saw ADHD symptoms get worse among young people worldwide, while ADHD diagnoses zoomed* among adults, as demands on executive function increased dramatically with remote work and school. This predominantly affected women, because they (we!) do most of the child and elder care, and because girls with ADHD are so often called ditzy and spaced-out — or misdiagnosed with anxiety or depression.

When I was diagnosed with ADHD and finally started meds, I could suddenly get things done, which made me realize I wasn’t actually lazy, disorganized, and dumb, which in turn vastly improved my mental health. Go figure.

But why are ADHD meds even regulated? 

The idea that disease is caused by weak discipline or poor life choices is widespread and long in the tooth. 

Mental health stigma is particularly deeply ingrained. Denial that ADHD even exists persists, long after it was added to the DSM in 1980 (as ADD). No one (I hope!) would object to stabilizing a broken bone with a cast, but the current US Secretary of Health thinks medications for depression, ADHD, and weight loss are a threat to Americans’ health.

Despite claims of soaring stimulant abuse, 1.4 percent of people older than 12 misuse ADHD medications, and the numbers have gone down in the past decade. 

It is hard to find data on adverse effects experienced by people who misuse ADHD drugs, partly because studies of overdoses often lump them together with other  prescription and black-market stimulants. Large studies of adverse effects associated with ADHD medication abuse report rates of serious side effects between 0.2 and 0.4 percent, though smaller studies have found higher rates; a handful of deaths are reported (pdf, page 106).

For context (pdf, pages 2, 10): In the US in 2024, almost three out of five people older than 12 had used any illicit drug, consumed alcohol, and/or used tobacco in the month before they were surveyed; one in five binge drank. More people used cocaine (1.5%) or hallucinogens (3.6%) than took ADHD medications they hadn’t been prescribed (1.4%, pdf, pages 10, 12, 17).

More context: Drug overdose killed 80,000 people in 2024. Drinking caused about 178,000 deaths annually, in 2020 and 2021. Tobacco use is linked with half a million deaths every year. 40,000 people died in car accidents in 2023.

Medication is really helpful for people with ADHD. 

People with ADHD who take medication have 40% fewer injuries in car crashes. Women on ADHD meds are 41% less likely to commit crimes. (Among men, it’s 32%). Both men and women are 31% less likely are to abuse non-prescription drugs, an effect that holds even after they stop taking ADHD meds.

On top of that, people with ADHD are at higher risk for dementia — but not if they are medicated for it. Fifty percent of people older than 75 are expected to get dementia, mostly women, and it’s not just that we live longer: at any age, almost two times more women than men get diagnosed. 

I’m not likely to start committing crimes or taking cocaine, but I’d love to live out my life without losing my mind, or at least, not losing more of it than Long Covid already took.

And I would love to know why it’s harder to get medication for ADHD than it is to buy a cigarette, a bottle of tequila, or a car.

“You Can’t Know Until You Try”

Visiting Florida, my then-partner and I talked about our plan to go to Universal Studios next. My grandmother got out a faded technicolor photo album from her trip to Disney World in 1970.

I got the hint.

“Do you want to come with us?” 

“Let me think about it.”

                …

“If I go with you, I’ll need a wheelchair, and then we’ll get to go to the front of all the lines.”*

At Space Mountain, if I recall correctly, signs warned that the ride — Raiders of the Lost Ark? — was intense.

“Are you sure you want to go on this one? It won’t be too much for you?”

“You can’t know until you try.”

It was a little too much for me, but not for her. I have such happy memories of that day, because my grandmother had such fun.

========

The Long Covid learning curve is a never-ending thing. Would it be too much for me to go to my cousin’s diving meet? 

Diving rounds, it turned out, ran simultaneously with swim heats. There was a lot of cheering, whistling, clapping, and general exuberant happy college student energy bouncing off the walls. I found a seat at the back, put in the earplugs, started taking photos.

I watched the various dives, recalled my own brief period of diving lessons, wondered what might happen if I tried a back flip now. When the dull roar crescendoed into deafening rumpus I put my hands over my ears. I was having a good time. 

After 30 minutes I stood up to leave. My stomach threatened revolt, my legs were weak, my balance was shot; I took the stairs carefully, gripping the rail. Back home, I staggered in the house and dropped into bed.

Catherine, bringing me tea: “was it worth it?” 

I don’t know. 

I’ve been working an hour a day, maybe two, trying to finish editing a book. I try to pace myself carefully: if I push myself too hard, I can’t work the next day. Or days. Or weeks. My eyes don’t focus. My short-term memory, gone. I can embiggen the type, and read the letters and the words. I can follow a short sentence. Anything longer, my brain runs out of memory buffer. I can’t hold on to it, so I can’t process it. 

The rest of today is shot. Tomorrow? I won’t know until I get there. 

========

* Not a scam. My grandmother could stand, and she could walk. But she couldn’t stand in line for an hour or two, and she couldn’t walk miles around the park all day. Even the distance from the parking lot to the main gate would have wiped her out.

See someone who looks like they can do stuff, sporting a handicap tag? You have no idea what they’re carrying. Don’t judge.

Who Makes Health Care Decisions?

Yesterday I had a nerve conduction study and electromyography (EMG): they put electrodes on different spots to see if electricity will go through your nerves, and then they stick needles in your muscles, ditto.

“It’s not painful.” — the world wide web. 

When the study is underway, the surface electrodes will at times transmit a tiny electrical current that you may feel as a twinge or spasm. The needle electrode may cause discomfort or pain that usually ends shortly after the needle is removed.

That “tiny electrical current” hits me like a powerful jolt. At best I levitate right off the table; at worst, it hurts like hell. Oddly enough, the needles didn’t bother me. But the electrical current buzzing through them… yeah, I felt that.

“Your reflexes are working.” — the doctor.

By the time the test was done, I was simultaneously dizzy and vertiginous. Dizzy: feels like the world is spinning around you. Vertigo: feels like your brain is spinning inside your skull. Both: you don’t wanna find out.

I asked for a wheelchair to get to the car. (Catherine was driving.) The med tech took one look at me and got a nurse, who told me jokes and checked my blood pressure and let me rest for another half hour, and still the med tech wheeled me all the way to the car door.

Let’s just say the rest of the day was not particularly pretty.

I went to sleep dizzy, woke up with vertigo. Eventually I wove and staggered from bed to couch. Dogs know: Coco has been very attentive.

What’s really wrong with this picture: 

there is no medical rationale for the test.

Peripheral neuropathy makes my feet feel like they’re on-fire burning. I keep a bag of beans and rice in the freezer; it takes the edge off.

Nerve conduction and EMG can rule out nerve damage. Docs haven’t recommended the tests, because neuropathy, without nerve damage, is a common symptom of Long Covid.

But the insurer [I’m calling them “Mutual Farm”] wants me re-evaluated — less than a year after they started paying disability benefits. Send updates from all your doctors, they said. And get an EMG.

I can’t make this up:

Mutual Farm: Get an EMG.

Me: What’s an EMG?

MF … aahhh, electrosomething, I dunno…

If Mutual Farm says get an EMG, and I don’t, they can say, no benefits. They’d probably lose if I fought it, but they’re gambling on that being just too hard.

So, I got an EMG, and I crashed. The technical term: post-exertional symptom exacerbation. Six hours of neuropsychological battery, two weeks from now, is also going to take the stuffing out of me, and I’ll crash again. The more often I crash, the longer it takes to “recover” to post-covid normal. And the more likely I end up at a lower baseline.

In other words: to protect their profits, the insurer is damaging my health. 

Charlie Kirk’s Legacy: “Free” Speech*

I told myself I wasn’t going to spend any more time thinking about Charlie Kirk, but here I am.

Opposing what Kirk stood for is in no way “celebrating” his death, a charge leveled at hundreds of people who have been fired, disciplined, or investigated over their opinions about him (and at me, over what I wrote two weeks ago, which mostly just quoted the man himself).

To the contrary: it’s important to make an honest assessment of the causes he supported, both rhetorically and financially. As Nikole Hannah-Jones cogently argues, “The mainstreaming of Charlie Kirk demonstrates that espousing open and explicit bigotry no longer relegates one to the fringe of political discourse.” 

When I was a teenager in the late 1970s, an aunt got me a subscription to a magazine that counseled young women that if we wanted to get dates, we should learn to ask questions, listen with interest (or at least pretend), defer to guys’ opinions — and certainly never contradict or correct them. Oh, and “smile, honey.”

Charlie Kirk, on Taylor Swift’s engagement: “Reject feminism. Submit to your husband… you’re not in charge.”

Christine Craft was a TV news anchor whose boss demoted her because, he said, she “was too old, too unattractive, did not defer to men and did not hide her intelligence to make men look smarter.” This was in 1981 … not 1950 or 1881. 

She sued, and won; a judge overturned the ruling; she sued and won again, an appeals court struck down the ruling, and with it the jury’s proposed $325,000 award. The Supremes declined to hear the case. Sandra Day O’Connor dissented.

That was four decades ago, ancient history, things are different now, right?

Sigh.

Kirk: Young women should get married, “submit” to their husbands, and “have more children than you can afford.”

By the mid 1980s, respectful use of language was derided as “political correctness.” More recently, #blacktwitter and #metoo moved to hold people responsible for their words and deeds; angry people who didn’t like being called out for bigotry and sexual assault complained that “cancel culture” deprived them of their right to free speech.

Put another way: if people disagree with them, they think they’re being being censored. 

Disagreement is not an assault on free speech.

Having freedom of speech means you don’t get jailed for what you say. But it also doesn’t mean you get to dictate how people react.

Kirk: Women who are still single in their early 30s get “depressed, suicidal, anxious, and lonely” because they’re “not as desirable in the dating market”; so they “lash out … by voting democrat.” 

=====

The Trotula, an influential handbook of medieval medicine: Virgins of childbearing age who don’t (get married and) have intercourse will get sick. This can also happen to widows (pdf, §47, p. 85).

Studies of discourse and language have demonstrated that in mixed groups, men talk more than women. But everyone thinks women talk more, because patriarchy.

When they get interrupted, men fight and yell to finish making their point.

Men interrupt more frequently than women, and they usually interrupt women; when women interrupt, they also interrupt other women by an even wider margin than men. Kirk regularly cut off his interlocutors.

Kirk didn’t, in fact, foster intellectual curiosity or collaborative learning. 

His definition of “debate” meant interrupting and hectoring his interlocutors, peppering them with irrelevant questions, and changing the subject if he didn’t like how a conversation was going. He lied liberally bolstered his arguments with things that weren’t true. In short, he fought to win, not to learn or to persuade.

The folks who think Kirk’s death represents a blow to free speech seem to have forgotten, if they ever recognized, that he actively encouraged harrassment of university faculty via the “Professor Watch List.” His followers listened: numerous professors got threatening messages as a result of being named on the site.

The right’s claim that people who disagree with Charlie Kirk (or simply quote him accurately) are celebrating his death, and their calls to discipline, demote, or fire those folks, suggests that they feel/fear speech opposing their agenda as if it were an assault.

*Free speech, it seems, is for Kirk and others like him.  Not for those who disagree.

Charlie Kirk’s “Legacy”? Hate Speech

People are getting fired for quoting Charlie Kirk.

A secret service agent, a Washington Post columnist, university faculty and staff members, Delta, United, and American Airlines employees, are among numerous people across the US who have been fired or put on leave for criticizing Charlie Kirk on social media after his death. 

The articles reporting these suspensions and firings are vague on the actual contents of the posts, but I followed a lot of links and found more details.

One poster quoted Kirk’s own words; in a 2023 podcast, he said that Michelle Obama, Ketanji Brown Jackson, and other Black women “do not have the brain processing power to otherwise be taken really seriously [and] had to go steal a white person’s slot to go be taken somewhat seriously.” Another stated that Kirk “spewed hate and racism on his show.” Another wrote, “Hate begets hate. ZERO sympathy.”

Stephen King was pressured to apologize after he faced online backlash after he posted that Kirk “advocated stoning gays to death. Just sayin.’” In 2024, Kirk said, “In a lesser referenced part of the same scripture is in Leviticus 18 is that, ‘that shall lay with another man, shall be stoned to death.’ Just sayin’,” and called this passage “God’s perfect law.”

**EDIT: I thought I linked to the video with Kirk´s words, but apparently I failed to. The video I quoted from had these comments just after the 53 minute mark, and he was not speaking in response to “Ms. Rachel.” I’ve scrolled through dozens of his shows from 2024 — he really does say awful stuff about all kinds of people, not just gays — trying to find it again. I can’t.**

An Oklahoma teacher was fired for writing, “Charlie Kirk died the same way he lived: bringing out the worst in people,” which supervisors called “disgraceful rhetoric.”

At the University of Mississippi, a staff member summarized Kirk’s career:

The university released a statement calling these “hurtful, insensitive comments” that violate its “institutional values of civility, fairness, and respecting the dignity of each person.”

I missed the part where Charlie Kirk respected the dignity of anyone he disagreed with. 

Trans people: “a social contagion.” 

Gay activists: “the alphabet mafia.” 

Martin Luther King, Jr: “an awful person.” 

The Civil Rights Act: “a huge mistake.” 

Empathy: “a made-up, New Age term that does a lot of damage.”

And perhaps most ironically: “I think it’s worth to have a cost of … some gun deaths every single year so that we can have the Second Amendment to protect our other God-given rights.”

Kirk’s organization created the “Professor Watch List,” which provides names, institutions, and photographs of professors reported by someone who disagreed with them, leading to harassment and death threats. 

Why Democrats are celebrating Kirk’s “legacy” of “good-faith debate” is beyond me.

Who Can Afford a “Gold Card” Visa?

DJT thinks he can “sell maybe a million” gold card visas at $5 million a pop to people who want to live in the United States. (Do they get to bring their spouse, kids, mother, beloved pets? Not clear).

I looked at that number and my mind went brrrrrzzzzzt. A few weeks later, it occurred to me to wonder: who can pay that?

In the entire world, 8.4 million people have stockpiled $5 million or more. Would they go broke to live in a country with no social services? 

Besides, a Rich People Visa already exists: the EB-5 says anyone who promises they’ll invest $1 million (less in some regions) to create ten permanent full-time jobs can live in the US. And they get to bring their families.

But the “gold card” isn’t an investment. It’s a donation.

How much do you actually need, to be able to afford to drop $5 million? The “ultra-rich” have $30 million stashed throwing off interest, or $50 million, depending on who’s counting. If you can somehow wangle a 10 percent return, that leaves you with $3 to $5 million in income. Pfffft. 

Ultra-high-net individuals (2020)

Are you willing to give one percent of your hoard to charity the kakistocracy? $5 million is one percent of $500 million. In 2022, just over 7,000 people had that kind of loot (pdf: page 31). 

Well hey. Maybe you’re willing to drop 10 percent of your entire trove to get to live in “the land of the free.”* In the entire world, there are 218,000 people worth $50 million. 218 thousand. More than half already live in the United States. 

So … maybe a hundred thousand people have a big enough pile to seriously consider a $5 million tax write-off beneficence to the current US regime. (If you believe that DT and his handlers will actually put that money toward the national debt? Bridge, yada yada.)

At this point, I’m asking myself, did I actually have to do the work to prove that the liar in cheat pulled numbers out of thin air? I know, I know, it’s a given. But my brain wouldn’t stop poking at the question until I satisfied it with citations. 

___________________

* for rich white straight cis Christians with a Y chromosome (who haven’t pissed off DJT… yet)

“Do No Harm” — not so harmless

The US health care system* fails people of color on several metrics, including maternal and infant mortality, rates of chronic illness in youth and adulthood, and overall life expectancy. 

Some of this is driven by poverty and lack of health insurance, which disproportionately affect Black Americans. Some is a result of decisions made by medical professionals, who are less likely to take seriously the symptoms of Black patients, especially Black women. 

And some is attributable to the corrosive stress of dealing, day in and day out, with racism, in its individual and systemic manifestations.

Into the breach? “Do No Harm,” a lobbying group and think tank that’s been in the news lately for opposing gender-affirming care.

But only for trans people.

They have no beef with teenagers who get labioplasty, breast augmentation or reduction, tummy tucks and thigh lifts, chin and cheek implants, and botox: a quarter of a million procedures in 2023 (pdf: page 17). That’s in a year. 

But trans teenagers, 13,994 of whom had gender-affirming care of any kind in the five years from January 2019 through December 2023 are the victims of “extreme gender ideology.” 

As if the pressure to conform to gender norms isn’t ideology, or gendered.

“Do No Harm” was founded by a retired nephrologist, by the way. A kidney doctor. With an axe to grind, and no specialized training in psychology, social work, endocrinology, pediatrics, or any other profession devoted to the study of gender, or ideology, or young people.

Doctor Kidney’s mission: to drive “discrimination and division” out of health care — by opposing any initiatives to address gender and racial disparities in health care outcomes, clinical trials, medical school admissions, and hospital policies. Developing and supporting anti-trans legislation got added to the mix a year later.

Put another way: they want it to be illegal to think about including a diverse sample of the population in clinical studies. If women are excluded because “menstruation might mess up the results” or “they might be pregnant” — fine. If Black women are ignored in recruiting channels — fine.

Do No Harm claims its members “physicians, nurses, medical students, patients, and policymakers.” But the 21 members of the (all-white) team only include five with medical training, only one of whom is certified in psychiatry. 

The director of outreach is an RN with a background in cardiac health, the gender ideology specialist is an oncology nurse, and the director of eliminating DEI is distinguished for getting fired when she refused to participate in bias training; her nursing experience includes home health care, hospice nursing, and emergency department work.

Just to be clear: diversity and inclusion efforts opened doors for women, Jews, African-Americans, Hispanics, and other members of the not-white-male majority to enter medical school. 

They work to provide access to medical students from impoverished backgrounds: male or female, white or Black, and to make sure LGBTQ populations are comfortable accessing health care. 

They push for including elderly people in clinical trials, so your grandpa won’t die from a medication that was only ever studied in young adults. 

And they seek to analyze disparities in care that lead to dramatically distinct outcomes among different populations. Demographics, like those cited above, make clear the rationale for this. It’s not rocket science.

=====

Should you be tempted to check out the “Do No Harm” website, please note that it is full of misstatements and outright fabrications, including the claim that Europe limits gender-affirming care; their report doesn’t even mention Germany, which has explicit guidelines about caring for trans youth.

Also of interest: repeated warnings on the site that its contents “should not be interpreted as medical or professional advice.”

========

*Health care in the US isn’t really a system; it’s a collection of often-competing, poorly integrated entities that individuals in need of care attempt to navigate at their peril. It’s three vulture capitalists in a trench coat fighting to extract every last penny from the business of selling drugs, diagnostic procedures, and doctors’ time.