Another month, another delay by ExpressScripts on my critical RA med (update 3)

See updates 2 and 3 at the end, and the final result here.

The Health "Care" Industrial Complex screws me again.

Last week, I called Express Scripts (@ExpressScripts/@ExpressRxHelp )/Accredo (formerly Medco) back to request delivery of my rheumatoid arthritis (RA) drug Orencia. Today I received a call -- about a delivery delay.

Oh, no, not more drama with poor customer service from these people.

I call back, go through the voicemail hell but I get an operator within 2 minutes (wow, an improvement there!). She looks into my account and says that in the notes it recorded there was an "accounts receivable issue," but that it didn't show a balance so she didn't know why it didn't ship (for arrival today).

[Duh. I have the charges auto-pay via credit card on file and I keep it without a balance, btw, so it couldn't have been a problem on my end.]


So while she ponders why the notes make no sense, I tell her that I need this medication by Friday of this week since I have to take the injection weekly.

Because Orencia is an expensive specialty medication, Accredo doesn't allow you to have more than a month's supply at a time, and won't refill until you're at the last dose, leaving you in a precarious position of not knowing if you'll receive the refill on time, or they will F up your order -- as I documented in my last post on ExpressScripts, where the company simply canceled the order and never called me -- and tweeted a "sorry" (see above graphic) after it was too late.

This time they did a little better, though the jury is still out. I'm set up to receive the delivery on Thursday, so we'll see if it arrives. If there's another snag, it will mean going without a med for a week -- a med that enables me to keep working. I've already gone through this once, and I learned a lesson.

It taught me just how effective biologics like Orencia work to reduce the progressive joint inflammation of rheumatoid arthritis. It also showed me just how much worse my RA has gotten since diagnosis and beginning biologic therapy -- all my finger bones, my wrists, elbows, hips, knees, ankles and foot bones are affected. There is new, troubling pain in the cervical vertebrae (neck) that I never had before.

***

UPDATE: Oh. My. God. Accredo called again and now says the prescription request was rejected by my doctor's office (!?), something that the two customer service people I've spoken with over the last week should have seen in the files if this were true.  I know this is not the case, since my rheumatologist has had me on it for a few months now, but now it's on me to get that fixed with my doctor. It means it's highly unlikely that I'll receive Orencia for my dose on Friday and will be in excruciating pain over the next week.

And - I just looked in my online prescription records w/Duke, and lo and behold, I have an active script on file:

abatacept 125 mg/mL injection syringe
Commonly known as: ORENCIA
Prescribed by [my doctor's name] on 11/26/2013.

This is bullsh*t.

UPDATE  2: Oh. My. God, part II. Now Accredo lies.

So around 4 PM, I get a call from my rheumatologist's office. I had submitted an online query to check on this alleged expired prescription, and she was nice; she said she just put in another one for a 90-day script for Orencia into the system so we wouldn't have this mess next month, and said Accredo should have it now. Great!

So I hang up and immediately call Accredo. They pick up and I do get a customer service rep in less than a minute. Unfortunately it's all downhill from there.

• She had no clue why a delivery order that Accredo scheduled with me last week for today was able to be placed if there was an invalid script in place.
• She said that she could see my new prescription from my doctor's office, but that it would take 24-72 hours to process. 
• And then I have to wait for a rep to call me sometime in the above window to schedule a delivery. [Remember I need it to arrive by Friday or I have to wait a week to take the dose.]
• Oh, and by the way, the said that the script is only for a 28 day supply! 

WTF?! Come on, I said, I just spoke to the nurse and she said it was for 90 days. The Accredo rep, characteristically and robotically said it is only for 28 days. So who is not telling the truth? I know my doc hasn't been anything but thorough and prompt in refilling my meds in 90 day supply increments for mail order.

What kind of game is Accredo pulling? Four different customer service reps, each with a different story about this prescription.  What do they see when I pull up my account? Is it like a slot machine in Vegas, where you pull the handle and get unique (losing) results each time?

I have to go through this all over again next month? I wrote my doctor's office again and told them I'd like to hold a three-way call ASAP to deal with this 28 vs. 90 day prescription approval.

And look at this:

Express Scripts... #FAIL again. 

UPDATE  3: (1/29)  Five calls, five stories - but a delivery scheduled (again).

I'm sitting in the waiting room at Duke Hospital (my wife was having outpatient surgery), and lo and behold, Accredo left me a VM to schedule the delivery of Orencia. Again. Of course I am quite skeptical that it will materialize before Friday, but I call back and get a customer service rep on the line in less than a minute. The very polite man ran through the list of required ExpressScripts questions to ID me and to go over the prescription specs and delivery address.

I tell the operator that I have to have the medicine by Friday afternoon or I will have to skip the dose until the following week. He says he can get it there by Fri afternoon. As he is concluding his set of questions, I ask him if I can ask him one for clarification:

"Look, I've been on calls with different reps trying to get this prescription filled and each time I'm given different stories about whether the script is valid, if the account is paid up, etc. I want to be sure that I'm really going to receive this, and that it is covered by my BCBS at the right co-pay."

He ask me what is my question and he'll see if he can look up the answer or refer me to someone who can answer it.

"I was told by the last rep that this was for a 28-day script, when I had just gotten off of the phone with my doctor's office, and the nurse said it was sent in for a 3-month supply. How is this possible? I don't want to have to get a new prescription every month for a medicine I take regularly and not have go through this mess each time."

He says he will check several dbs -- the order, the kind of coverage I have, etc. After some hold time he says what I knew all along -- the records show that a 84-day supply prescription was received from your doctor. He had no idea why it was changed to a 28-day script. He says he can cancel the delivery under the 28-day script and re-enter it under the 84-day one.

I ask "so wait, I want to be sure this doesn't get delivery screwed up, or a receive a call saying BCBS won't cover it, or my co-pay is outlandish (it should be $30). I want to be sure that we're on the same page -- under my 90-day script before, I received one month's worth at a time and had to call to schedule the next month's delivery, but didn't need a new prescription. Under this 84-day prescription you're describing, it sounds like I will receive the three month's worth in one delivery (something that I've not had before). Is this what you're saying?"

He says that it is indeed going to be filled for 3 month's worth in one delivery (!).

Now how is this possible? In one phone call, I have yet another answer about what I'm entitled to under my policy, and it's one that has never applied to my biologics.

While this is a more than satisfactory outcome (if it indeed arrives when they say it will), it is troubling that I have had completely different stories about 1) my account, 2) my prescription status , 3) my policy coverage, 4) ability to deliver and 5) payment status.

This was the first customer service rep to take the time to review my whole account, history, my BCBS coverage for the med, and what my doctor actually sent over. He was on the ball.

This isn't right -- it places the onus all on the patient to figure out whether ExpressScripts customer service is incompetent, told to dial back on servicing patients with the correct co-pay and eligibility for specialty meds. All of these customer service reps, like the one today that did go the extra mile to retrieve information that proved what I knew all along to be true, should be equally competent at navigating their company databases to ensure accuracy and save everyone precious time.

Today, thanks to Valéria (see below). I received a call from ExpressScript "Presidential Escalation" office; they left me a message. I intend to tell this representative in the AM (they were closed by the time I could call today, so I left a message) about the troubling and inconsistent service that occurred at the company since it swallowed Medco. And I never had problems with order fulfillment like this.

I'm going to use this valuable opportunity to share what it is like from the patient perspective to get continually jerked around at a most-vulnerable time in their health needs. Not everyone can be a spot-on advocate for themselves. If not tenacious or assertive, working with ExpressScripts will leave you without vital medications because of the disarray there (intentional or unintentional).

***

On the battlefield...

I want to give a big shout out to Valéria M. Souza, who has been fielding complaints about the poor customer service doled out by ExpressScripts/Accredo:

Thx, @VSouza_STL, for your tireless work advocating for customers of @ExpressScripts and #Accredo receiving sub-par service. #HCR

I tweeted that out last night. Follow her on Twitter to see just a sampling of what patients and caregivers are going through when it comes to receiving critical specialty meds for chronic and serious illnesses from this health care industrial complex giant. Her blog is http://valeriamsouza.wordpress.com/

You know just how much Express Scripts/Accredo sucks?

Time to vent. It's all I can do when you're up against the corporate health industrial complex.

Express Scripts (@ExpressScripts)/Accredo (formerly Medco) handles my prescription insurance. These companies suck; don't ask me, just follow the hashtag #accredo or #medco. My local pharmacy is the reliable CVS, but my health plan, Blue Cross/Blue Shield, uses Accredo/Express Scripts as my primary delivery system for my chronic condition meds (I have rheumatoid arthritis, fibromyalgia, and insulin-dependent diabetes). I'm able to get a 3-month supply of most drugs at the cost of one script at CVS, but it's mail-order.

For RA I take Orencia, a once-a-week injectible that is a biologic. These drugs aren't delivered in 3-months supplies or auto-refill (these are expensive drugs,  at $20K/yr.) by the company; you get a month at a time. In fact, Accredo won't fill it unless you're practically out of it. I told them last Thursday when I arranged for delivery the following week that I was taking my last dose the following day (that Friday) and I'd need the Orencia delivered before the following Friday. They arranged to have it arrive yesterday.

I need to take the Orencia to be able to work without being in excruciating joint pain the following Monday after taking it on Friday afternoons. This class of drugs come with a lot of bad side effects (fever, chills, body aches, extreme fatigue, nausea and more), that last for a couple of days, so that's why I take it on the weekend -- so I can be in the best shape as possible during the rest of the week. It's hard to focus when you're in a lot of pain, so Orencia (and alternatively, Enbrel), have been my lifeline to being able to be effective. It has come at a cost -- I lose my weekends to these drugs. But as I said, it has allowed me to not be out of work, sick and writhing in pain.

The Thursday delivery that never happens

So yesterday comes and goes; I'm supposed to take My Orencia this afternoon. Still doesn't arrive. I call them up and the nurse says THEY WERE OUT OF STOCK AND JUST CANCELLED MY ORDER.

No phone call to me. Express Scripts/Accredo whatever the F they are calling themselves JUST DID NOTHING.

I asked, well then why didn't you call earlier in the week to see if a local pharmacy might fill it (even one dose). No answer. Get put on hold several times to see if they can find it.

She says it's now in stock and doesn't know why someone didn't contact me. I told her that I needed this med to take over the weekend (so I can deal with the bad side effects and be effective at work).

She puts me on hold again. Then she says "They do have it in stock; the soonest delivery date they have is NEXT TUESDAY. That means I don't have it today, of course, and that means going a week without it because I cannot take it when it gets here; it put me off schedule for dealing with the side effects.

And since it's Friday at 5 PM, it's too late to reach my doctor about whether to go without for a week (this isn't considered a medical emergency since I won't die without it, in corporate speak), or to take my remaining dose of Enbrel (another RA med I switched from to try Orencia) that I have in the fridge.

Guess I'm just f*cked either way. 

Since I'm only working 3 days next week because of the new year holiday, my inclination is to suffer through the week until next Friday rather than use the last dose of Enbrel today. I don't know if Express Scripts/Accredo is going to F up like this again, so I'm loathe to leave myself with nothing.

She ends the call, "Have a happy holiday/happy new year" I had been polite during the entire call. I just could no longer hold it together so I just hung up.

***

Update (12/31): ExpressScripts released it for delivery today according to the ExpressScripts web site; that means I won't receive it until at the earliest on Thursday (unless UPS is delivering on New Year's Day). I tried the tracking number given, but the UPS site gives the reassuring message "UPS could not locate the shipment details for your request. Please verify your information and try again later."

And then it did arrive later in the evening -- via FedEx! No wonder their site had the tracking screwed up. But I have a month's supply for now, in a couple of weeks I have to go through this all again, since I have to order it a month at a time -- by phone -- you cannot use their web site to re-order.