PBMs Restrict Access to ADHD Medications

Pharmacy Benefit Managers (PBMs) are raking in the profits by severely curtailing access to ADHD medications. This must stop.

Meet a powerful player in the “How Can I Get my ADHD Medication” game: Pharmacy Benefit Managers (PBMs). Few consumers know about them. Yet, they represent a huge and growing factor in limiting access to the ADHD medications you need—especially at the price you used to pay.

Let’s say you’ve identified the medication and dose that works best for you or their child. This typically comes after costly trial and error. You just want to keep getting it—and get on with life! Maybe your prescribers and even your insurers do, too.

Enter PBMs. Most healthcare consumers have not heard of PBMs. But PBMs have heard of us. Beyond the issues with Concerta generics (Concerta archive at ADHD Roller Coaster). Beyond Adderall “shortages”. PBMs have been wreaking havoc with access to medications (especially brands) and affordability.  

This post explains a bit about how PBMs might be affecting your access to medications, especially brand medications. If you have concerns, please contact your U.S. congressional representative.

No need for a fancy essay. You can just write a short note and link to this post: “This issue is negatively affecting my family. Please pay attention.  PBMs Restrict Access to ADHD Medications”.

Why PBMs Take Center Stage Now

In all my coverage of medication issues since 2014,  I haven’t explained how PBMs factor in. Two reasons: Their power has mushroomed only in the last few years, and their role remained hazy to me, especially as so many related factors were shifting:

  • For example, CVS being allowed to purchase Aetna, which created an 800-pound gorilla.
  • For example, the 2017 White House administration appointing an FDA chief that overrode scientists’ concerns in approving generics for complex-delivery system medications, including Concerta’s
  • So many factors to tease out.

Finally, my search for reliable expertise on PBMs, especially as they might be affecting the ADHD community, ended last week.  I share an excerpt from a respected ADHD expert’s newspaper guest opinion and a link below. This coincided with a Congressional investigation.

Not New But Growing More Egregious

Many industry observers have viewed with growing concern, over many years: PBMs are making a killing, and there seems no end in sight. (A congressional investigation in May 2023 has been looking into it. Details at the end of this post.)

Things started heating up in 2017. Again, this coincided with the worrisome-for-consumers CVS-Aetna mega-merger and the clown car of Concerta generics.

Also in 2017, Bloomberg reported on PBMs downplaying profit margins (Drug Middlemen Have Slim Profit Margins: Just Ask Them).  That’s behind a paywall, so here is Fierce Healthcare take on Bloomberg‘s report : Facing Criticism, PBMs May Be Downplaying Profit Margins.

Excerpt:

CVS, Express Scripts and OptumRx had operating-profit margins last year of 4-7%, which are significantly below the 16% average among S&P 500 companies, Bloomberg reported. That’s because they may be booking revenue in a way that shows lower margins.

At issue is the PBMs’ reporting of “pass-through revenue,” or transactions in which the companies processed payments but didn’t handle products. If that is stripped out, Express Scripts’ operating margin more than doubles to 15% in 2016 and CVS’ to 10%, the article noted, citing a recent Morgan Stanley report.

That report said pass-through revenues “cloud the true economics of the PBM business.” It did not speculate as to why.”

PBMs Affect ADHD Medications

Thank goodness for Ann Childress, MD, and her recent guest opinion in the Las Vegas Sun. Highly informative! I’ll share some highlights and link to it below. 

But first, who is Dr. Childress and why should we consider her perspective? (You know what I always say…vet your experts!)

A Few Factoids About Ann Childress, MD

  • Internationally recognized expert in the field of ADHD.
  • President of the Center for Psychiatry and Behavioral Medicine, Inc. in Las Vegas. Has adjunct faculty appointments at the University of Nevada Las Vegas School of Medicine and Touro University of Nevada College of Medicine. 
  • Board certified in psychiatry, with a subspecialty in child and adolescent psychiatry.
  • Authored more than 80 articles in scientific journals and participated in more than 180 clinical trials as co-principal investigator. Major focus: treatment of children and adolescents with mood disorders, post-traumatic stress disorder, schizophrenia, autism and Attention-Deficit / Hyperactivity Disorder.
  • Serves as current President-elect of the American Professional Society of ADHD and Related Disorders (APSARD).
  • Distinguished fellow of  the American Psychiatric Association and a member of the American Academy of Child and Adolescent Psychiatry.

PBMs’ Negative Impact on ADHD Consumers

Here are a few excerpts from Dr. Childress’s guest-opinion piece:

—Insurers hire PBMs to manage the prescription drug components of their health plans. PBMs negotiate with drug companies to decide which medicines to include on a plan’s “formulary” — the list of medicines an insurer will cover — and at what prices.

—For a given class of similar medications, PBMs will often favor a small number, say one or two, out of a dozen potential treatments. [Gina notes:  Thanks to the large selection of FDA-approved stimulant medications, more people have been able to find a proper “fit”.]

—Each new plan year, an insurer’s PBM can reopen talks on coverage and price. 

One of the largest PBMs, OptumRx, announced that it is removing several popular ADHD-treating drugs from its coverage and replacing them with generic versions that might not offer the same bioavailability as their brand-name counterparts.

—CVS’s company-owned PBM plans to limit its coverage of Adderall XR — the drug’s extended-release formulation — and another popular ADHD treatment, Concerta, likewise limiting treatment options for patients.

—All this churning activity is highly lucrative for PBMs. Their gross profits totaled more than $28 billion in 2019. But patients are getting a raw deal. The three largest PBMs together control 80% of the market. The list of their “excluded” drugs grew from 850 in 2020 to more than 1,150 in 2022.

—Fortunately, lawmakers in Washington are beginning to show interest in standing up for patients. [Gina notes: This could be a very mixed bag. Political demagoguing on making more generic drugs available likely contributed to Trump’s FDA Chief loosening generic bioequivalent standards, in my opinion.]

Ann Childress, MD, guest opinion Las Vegas Sun, PBMS and ADHD medications

Read the Full Guest Opinion from Ann Childress, MD

Middleman Making Treating ADHD Harder Than It Should Be

 

PBMs quotation from David Balto, former FTC attorney who represents clients suing PBMs

PBMs in the Congressional Spotlight

From the non-profit Kaiser Health News, May 11, 2023

PBMs, the Brokers Who Control Drug Prices, Finally Get Washington’s Attention

Excerpts:

The three biggest PBMs — OptumRx, CVS Caremark, and Express Scripts — control about 80% of prescription drug sales in America and are the most profitable parts of the health conglomerates in which they’re nestled. 

CVS Health, the fourth-largest U.S. corporation by revenue on Fortune’s list, owns CVS Caremark and the insurer Aetna; UnitedHealth Group, a close fifth, owns Optum; and Cigna, ranking 12th, owns Express Scripts. While serving as middlemen among drugmakers, insurers, and pharmacies, the three corporations also own the highest-grossing specialty drug and mail-order pharmacies.

“John D. Rockefeller would be happy to be alive today,” said David Balto, a former Federal Trade Commission attorney who represents clients suing PBMs. “He could own a PBM and monopolize economic power in ways he never imagined.”

And

Drug manufacturers claim that exorbitant PBM demands for rebates force them to set high list prices to earn a profit. Independent pharmacists say PBMs are driving them out of business. Physicians blame them for unpredictable, clinically invalid prescribing decisions. And patients complain that PBMs’ choices drain their pocketbooks.

With PBMs driving prices, competition has had the opposite effect from what economic theory predicted Medicare patients would spend out-of-pocket on drugs, one large study showed. Over a five-year period, patients were paying 50% more for branded drugs that had competitors than for those that didn’t.

Like to Say, “Thanks, Gina!”?

I have never accepted pharma industry support of any kind. That’s rare among ADHD websites and blogs. It makes a difference but it does cost me in time and effort.

If my original reporting has saved you cash, confusion, and consternation, you can say “Thanks, Gina!” in several ways: 

  1. Start your Amazon shopping expeditions in the box to the right. Just bookmark it as “Amazon” and a small portion of your purchases will help to defray my costs. Thank you!
  2. Send a donation via Paypal or Venmo @Gina-Pera-1

If you have personal experience or something else to share on this topic, please leave a comment.

—Gina Pera

 

MORE FROM GINA

7 thoughts on “PBMs Restrict Access to ADHD Medications”

  1. This is crazy! I just came across this site. I have been in nursing school taking Vyvanse for years. Then thru Aetna United healthcare & CVS I had to switch to generic in late 2023′. I was passing then when I was switched to generic I started failing. Everything was going wrong. I was in a fog, I could hear people talking but not comprehending. Having anxiety, not feeling myself, tired. I had my Dr up my dose on generic still nothing changed, trying different manufacturers nothing. I spoke to my tutor (still failing) I said something is wrong I’m failing, I haven’t had this problem and it started when I got switched to generic. I said it’s like taking candy and nothing happening, like they are giving us meds with blanks (placebo) in them. I asked if she has heard anything. My tutor who is an RN & NP said yes she has heard of others complaining of the same thing. I requested my Dr. to only give me scripts for Vyvanse Brand name which thank goodness I have an amazing Dr and I haven’t had an issue since being switched back to the brand name. Does it hurt my pocketbook? Yes, I’m a single mom in school fulltime and I work fulltime. It’s worth every dime having to pay the extra money that is the real deal than a generic that does nothing at all! Having Aetna & CVS being in this horrible cycle of just a money making scheme is horrible playing with people’s lives destroying families is beyond me. I hope that in the near future that this fiasco is stopped. Substituting is not the answer with ingredients for a cheaper way out then price gouging us is not the answer‼️

    1. Hi Sunshine,

      I hear you!

      have you tried the home-delivery pharmacy, if you have that option? That should represent some savings — and fewer hassles.

      https://adhdrollercoaster.org/tools-and-strategies/home-delivery-stimulant-medications/

      Also, there are other stimulant options. Might be worth a try. But maybe after school has stabilized for you.

      So sorry this happened to you. Kudos for finding my blog. You won’t find this information at the majority of pharma-backed websites and blogs (and there are a LOT of them, most not disclosing).

      https://adhdrollercoaster.org/tools-and-strategies/home-delivery-stimulant-medications/

      take care
      Gina

  2. This is crazy! I just came across this site. I have been in nursing school taking Vyvanse for years. Then thru Aetna United healthcare & CVS I had to switch to generic in late 2023′. I was passing then when I was switched to generic I started failing. Everything was going wrong. I was in a fog, I could hear people talking but not comprehending. Having anxiety, not feeling myself, tired. I had my Dr up my dose on generic still nothing changed, trying different manufacturers nothing. I spoke to my tutor (still failing) I said something is wrong I’m failing, I haven’t had this problem and it started when I got switched to generic. I said it’s like taking candy and nothing happening, like they are giving us meds with blanks (placebo) in them. I asked if she has heard anything. My tutor who is an RN & NP said yes she has heard of others complaining of the same thing. I requested my Dr. to only give me scripts for Vyvanse Brand name which thank goodness I have an amazing Dr and I haven’t had an issue since being switched back to the brand name. Does it hurt my pocketbook? Yes, I’m a single mom in school fulltime and I work fulltime. It’s worth having to pay the extra money that is the real deal than a generic that does nothing at all! Having Aetna & CVS being in this horrible cycle of just a money making scheme is horrible playing with people’s lives destroying families is beyond me. I hope that in the near that this fiasco is stopped. Substituting is not the answer with ingredients for a cheaper way out then price gouging is not the answer‼️

  3. My military spouse daughter can’t get Concerta, which worked well for her. She can’t even pay for it herself, as she’s in a foreign country that doesn’t allow stimulant meds. She tried the generics—and had the experience of absorbing a day’s dose immediately (we guess), as her heart rate went soaring and she experienced a panic attack, while driving her child. She pulled over and called me (?!) across the world…nightmare. Other generics don’t absorb at all, AND they frequently change. Two months she got REAL Concerta!! Which she saved for important days where best focus is needed. This is INSANE!!!

    1. Yes, it’s insane, Ursula, and so painful for many people.

      The thing is, we had Concerta in the authorized-generic for many more years than most brands are available when the patent expires.

      It might have continued had Big Generic and other parties not colluded in the most unsavory way.

      But there are other medications. She should start trying them immediately.

      good luck to her.
      g

  4. Laura Damato

    Hi Gina,

    I take brand Concerta. I have Aetna and uses CVS Caremark. Lucky me. Right? Nope.

    I have paid over 8 thousand dollars out of pocket for my Concerta. Simply, because CVS Caremark will not pay for brand. I have filed the prior authorization form. Denied! I have appealed the decision. Denied!

    I have been taking brand Concerta for over 10yrs. I have tried generic and it was like jumping off a cliff. You just can’t bet a time released medication.

    Especially being a mom, it’s crucial for me to function. Without out it, I forget things and don’t complete tasks. These insurance companies have no idea how this affects people’s lives.

    Hopefully something will come of this. Maybe things will change. Thank you for writing this article. Appreciate all that you do.

    Laura D’Amato

    1. Hi Laura,

      Thank you for noticing. 🙂

      I never would have said “lucky you” to anyone who has Aetna and CVS-Caremark. That’s the monster-merger that made everything worse. I watched in horror as it happened.

      Just to be clear: This mess isn’t “insurance companies.”

      This merger wouldn’t have happened without Republican support, and they went for it….unanimously. Two hold-out states, California and New York, were finally outmaneuvered. Other pharmacies/insurance companies had to follow suit, just to stay in the game.

      I saw things immediately go downhill after the merger…and the one-two punch was the unleashing of many junk Concerta generics. With the FDA chief appointed by a Republican White House.

      I don’t see this changing, Laura. If you can afford it, great.

      If not, I encourage you to check out your other options. There’s a lot more than Concerta and its generics.

      I created Course 2 in my Solving Your Adult ADHD Puzzle program to help folks take charge of their medication optimization. We really cannot depend on the average prescriber, including many that claim ADHD expertise.

      You can learn about the other options in the course, and there are worksheets to help methodically guide the selection and titration.

      Take care,
      g

Leave a Comment

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Stay in Touch!
Ride the ADHD Roller Coaster
Without Getting Whiplash!
Receive Gina Pera's award-winning blog posts and news of webinars and workshops.
P.S. Your time and privacy—Respected.
No e-mail bombardment—Promised.
No Thanks!
close-link