KOK Edit: Your favorite copyeditor since 1984(SM)
KOK Edit: your favorite copyeditor since 1984(SM) KOK Edit: your favorite copyeditor since 1984(SM) Katharine O'Moore Klopf

Thursday, May 18, 2006

Fighting for the Little Guy, Part 2

Today's public hearing in the Bronx about the ineptitude and corruption of prescription benefit managers (PBMs, aka mail-order drug companies)—and the need for a New York State law to allow consumers to choose whether to use them—was stupendous! Here's a stream-of-consciousness summary.

Three legislators and a room full of people were riveted when I talked about living in the House of AD/HD and what we have to deal with when my husband Ed's and our son Neil's AD/HD scrips are "lost" or delayed—professional consequences for Ed, interpersonal consequences for all of us as a family, academic consequences for Neil. I talked about how I've been sent too low a dose of the medication I take for hypothyroidism and that at this very moment, Express Scripts (ES, the PBM my family has to use) has just now "found" the scrip for my combo blood pressure–restless leg syndrome med, which it's had for 2 weeks.

I talked about how I lose up to 4 billable work hours a week in hounding ES by phone and/or e-mail. I talked about how we're not "forced" to use ES, but HIP (our HMO) will charge us 50% more for our meds if we take them to the local pharmacy where I would love to go to watch a human being fill our scrips the same day instead of 2 weeks later. In effect, this is financial force used against my family and other HIP subscribers. I talked about how I spend money to send in scrips by UPS, because I think it's insane to trust such things to the U.S. Postal Service, especially the class II controlled substances, for which there is a thriving black market, that Ed and Neil take for their AD/HD. Many times, the signature of the ES person sent to me as proof of delivery by UPS has forced ES to admit that it did receive a scrip it had first told me was "lost."

I think my best line, besides the "House of AD/HD" story (which made everyone laugh and then shake their heads in amazement), was this: "Yes, Express Scripts promises to fill prescriptions within 3 to 5 business days. That's bull hockey!" Cracked everybody up.

Long Island TV news channel 12 was there, so I'm half listening to it now to see if they did a story. (I'd sent the channel and several other news organizations a press release by e-mail ahead of time.)

There was a recorded investigative news report, from a TV station in Texas, that told the story of a heart transplant patient. She was prescribed anti-rejection medication by her doctor. Caremark, another of the big three PBMs in the United States, is the PBM she's forced to use. Caremark took its sweet time filling her prescription. She ended up going more than a week without the medication. It's amazing she's still alive.

There was testimony that PBMs, unlike brick-and-mortar pharmacies, are completely unregulated. Many times, they call prescribing physicians to try to get them to change patients' medications to less expensive ones and include trick language in written communications that end up lowering patients' dosages dangerously when inattentive physicians approve them. They often try to get physicians to change med instructions to include the phrase "take as needed," rather than every so many hours or so many times a day. This effectively decreases the amount of meds that PBMs must dispense and thus the amount of money they must spend. And yes, there was testimony that PBMs jack up the prices of generic drugs by multiple hundreds of percentage points.

There was testimony that PBMs rip off municipalities, unions, and the federal government when they are the med supplier chosen for contracts. (ES alone is under investigation in 19 states, including New York, for this.) PBMs promise these entities huge discounts in the form of rebates to the entities, but when they get the rebates from the big pharmaceuticals, they keep the money and don't hand it over. This is one of the practices that has them under investigation by state attorneys general for fraud. For example, one PBM charged an entity's health care insurance policy subscribers a total of $25,000 for a particular generic medication needed by many. The PBM's actual cost for providing the drug? $7,000. That's obscene.

State Sen. Jeff Klein (34th senatorial district—not my district), sponsor of bill S7610, referred to the Labor Committee of the New York legislature, that would allow state residents to choose where they get their prescription drugs, thanked me profusely for my testimony and asked if I would be willing to testify again at more such public hearings. I said, "You bet!"

Klein's community liaison has promised to provide me with a transcript of today's hearing. Once I have it, I'll post parts of it here, along with my analysis as a consumer; there was so much more than I can remember off the top of my head. (I am merely a medical copyeditor, not a health care professional or medical writer, so keep that in mind when you read my analysis.)

Part 1



Anonymous said...

Brava! You are my hero. I am so very proud of you, for testifying and for maintaining a sense of humor and perspective living in the House of AD/HD. (My husband, son, and I all have fairly moderate, controllable AD/HD, and although my husband and I learned various coping strategies that work with varying degrees of success, life is a lot saner and a lot less thrilling when we have access to the appropriate medications.)

Katharine O'Moore-Klopf said...

Thank you, my dear friend. Knowing that you live in an AD/HD family too has helped keep me sane. You and your family are remarkable, dear people.

erinberry said...

So glad you made your voice heard! Congrats for getting involved.

Katharine O'Moore-Klopf said...

Thanks, Erinberry. I believe that if everyone got involved with just one issue that they thought important, big changes could happen.

TFLS said...

Well bully for you, honey! I'm so glad you had the opportunity to stand up and tell them what for! By the way - my hubby and I are stuck with Caremark - and a worse lot of assholes I've rarely seen in one place. They never grant petitions, always change meds without permission and charge an arm and a leg while screwing you blind! Just one of my meds for severe reflux - $200 per prescription. We actually have to budget around our meds. I hate those people. So good for you! I hope you took their birthdays away!

Katharine O'Moore-Klopf said...

You have to suffer Caremark? You poor dear. And I understand exactly what you mean about budgeting for meds. We do it too.

There are really two issues that must be dealt with: (1) getting the PBMs under regulation and allowing consumers to choose between them and brick-and-mortar pharmacies and (2) decreasing the obscene profits that the big drug manufacturers make. Fixing those problems is going to take unflagging effort by consumers and legislators alike.

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