Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

2,179 Members
16,355 Posts
0 Online
Muscles & Bones
/ Rheumatoid Arthritis Support Group

Mail-order pharmacies

altoclef
altoclef
OK, sports fans, lets start a list. Both Coaltrain and Christine have written threads about ongoing struggles trying to get meds. A couple of weeks in, neither situation is resolved. So, what stories can we each add? I'll go first.

1) Shortly after I first started Humira I arrived home one evening to find a grey plastic bag hanging off my back doorknob. Inside: a bottle of prednisone and a bottle of leucovorin. I hadn't ever talked to this company, hadn't ordered them, hadn't approved shipment, hadn't agreed to pay, and no one had signed for them. Nice.

2) Enbrel, round one. Set up shipment with the pharmacy. Next day I get a call from their "customer care" staff, wanting to put the wheels in motion to send me the meds. No, it hadn't already been done. No, the pharmacy wouldn't/couldn't have called. they could put Enbrel on the mule train, and it would arrive in 5 to 7 days. Turns out, the pharmacy had shipped as agreed.

3) About three months after I quit taking Humira the pharmacy called to see how I was doing with it and if I had any questions. First question: have you morons noticed I haven't ordered any for 90 days??

4) Orencia. Within a week after my doctor wrote the script, I've had calls from three different pharmacies wanting to send it to me. I ordered from the one associated with my insurance company. Supposed to be here today. We'll see. The third pharmacy to call ONLY fill scripts for patients with one insurance company, one I have never in my life been insured under. I still can't figure out how they got my info. It felt like being "slammed" by a rogue phone company 20 years ago- remember that one?

Next?
sammyo1
sammyo1
OMG Blue you are to much!
Honestly you can tell a story.


This Yankee would not have to patience for Hick town but I sure enjoyed reading your story.
Sure hope you & Mrs. B enjoyed your meal.
LOL
Sammy
RetiredNow1
RetiredNow1
Monday I received a letter from my insurance saying that I MUST now get my Humira from Express Scripts, or pay the full cost of the script myself. I will get a 90 day supply at a time, vs the 30 day supply I've been getting from a specialty pharmacy 50 miles away. I've liked having them call me prior to mailing my Humira, and letting me know when to expect it, so that I can plan to be home. Now it will be mailed from Arizona. I guess I just liked feeling that I had more control over if and when I received my meds. Methotrexate was included in this required change. Since the dosage has changed several times in the last few months, I liked being able to pick it up locally. No more on that one either.

Both will be cheaper, but I guess I resent not being able to choose where I get my meds. Less expensive is a good thing, but my cost care wasn't bad before. Maybe I'm just wining.
altoclef
altoclef
Darn it, Bluedogs, I just spat coffee all over the place laughing!

For those who see an endocrinologist, Blu E. Dogs II, M.D., is now accepting new patients in North Hicksburg, Texas.

Wino, each insurance company tells you who will be supplying your biologic, and you have no choice in the matter. Humira & Enbrel both have great co-pay programs, as long as you have private insurance. For legal reasons, they can't offer co-pay assistance to people on Medicare, Medicaid (who need it the worst!), or other government-funded plans. There is a workaround in effect for folks with Obamacare subsidies, and there are programs to help Medicare/Medicaid recipients, but they aren't the slamdunk the others are. With the co-pay card, one drug is free, the other is $5/month. Has your rheumy tried to get approval before?

I actually had two good experiences with the mail-order places yesterday. My Orencia arrived as scheduled, well-packed, and at the agreed-upon price. When I got home I had a letter from the first pharmacy that had contacted me, saying that my insurance wouldn't allow them to supply me, but thanking me and offering any help or advice I may need, even if I wasn't a customer. It was probably the nicest form letter I've ever gotten.

Ros, I'm amazed that there isn't co-pay assistance available for your friend. What if one doesn't have $10K under the mattress?
depotblue
depotblue
that IS the co pay assistance. She has group health insurance. However, the drug is not covered under her group health inusrance plan. they company that recently raised the price from about $100 a vial to $28,000, are offering her a $18,000 co-pay she just has to come up with the other $10,000....

She has severe MS and this drug when she is relapsing puts her into remission as prednisone and solumedrol do NOT.

The New York Times article was enlightening. I love the idea of 30 insurance verification enrollment specialists sitting around in one office waiting for the golden script to come through for each of them. Not.

there is no reason for this level of greed. I wish I had the 10K to give to her

Ros
beechfeet
beechfeet
So glad altoclef to hear the good outcome.
Christine26
Christine26
Boy oh boy, these pharmacy stories are OTT (over the top). I guess mine just blends right in with them. Blue Dogs2 what were they thinking. Doesn't anyone but us check things. This can be dangerous. Since my biologic is Rituxan the nurse gets the prior approval and the medications come directly to the doctors office since it is IV. Thank goodness for that. I have no problem getting my regular meds, but narcotics are a problem and take forever to reach me as mentioned in my thread. The narcotics also must be signed for.
GardenLlama
GardenLlama
It's like another episode of "As The Pharmacy Turns"..... I could regale you with a different story for every month that I have dealt with mail-order pharmacies for several years. They call me to say, "It's time to order your next month's prescription." Then they say, "You can't have it; it's too soon to order your next month's prescription." So I wait a week, call to order it again, and think I have succeeded. The delivery date comes and goes with no anticipated big styrofoam carton o0n my front porch, so I call and say "Where's my drug, folks?" and they say, "Oh, there was some information missing from the order so it was not shipped." Seriously? I ask what information, and they say they cannot tell me. I ask why no one called me to say there was a problem, and they say it's not their policy. Now there is steam coming from my ears. They cheerfully say, "May we take your order now and set up a shipment date?" I cheerfully say, "Certainly. I need my Enbrel yesterday......." Something similar to this happens every month. Sadly, I'm not making this up.
sammyo1
sammyo1
It is their policy to drive you crazy.
Ive over an hour on the phone for my uncle who is 82.
It's " let me see what I can do"
Then 15 minutes later the person comes back acting like they completely forgot what they were doing.
I spoke slow & pronounced every word very slow like I do with my grandson who is yet 2.

DOOO YOUU REMEMBER YOU DID NOT SHIP THE MEDICATION INNN TIMEE? Can YOUU HEARR MEEE?
after an hour I no longer care how I sound.
They do not do their job!
Gritting teeth now
Sammy
coaltrain
coaltrain
GardenLlama - wow! I can't get my initial order shipped - and then if I do I have this to look forward to every month....??

I'm about to give up on it myself - I just don't have the energy to get back on the phone with them again for 2 hours like I did last week with no resolution......

It is what it is.......
altoclef
altoclef
Coaltrain, still no delivery? Could someone at your doctor's office call and ream them out? I realize the problem was originally with them, but maybe they'd be willing to make some noise.

Christine, thinking about your saga, I'm a little surprised you even CAN get narcotics through the mail. I've seen signs up at my pharmacy that you have to show a photo ID to get them there.

GardenLlama (love the name!), you couldn't make this stuff up if you tried! You'd think they would be hungry enough for the $3000 to get the order going. It's probably the "minimum work for minimum wage" problem, though.
depotblue
depotblue
fed ex waits to the end of the day to make my biologic delivery at work, then fed ex doesn't attempt....it goes back to the big fed ex delivery center at 6 pm while I am still sitting at my desk...waiting...this is the same desk they have been delivering to for four years....now the specialty pharmacy panics as the big expensive brave biologic drug costs thousands of dollars and can't stay on ice past 24 hours or so. holed up overnight in a fed facility...right? so now they are yelling at me at work why did I refuse package? I find this comedic.

i did not. i was just sitting at my desk and fed ex felt like not attempting a delivery.

fed ex will not talk to me as I am not the sender.

so....now the specialty pharmacy has to pony up for a driver courier from my work one hour to my house (how much was that about a $200 you think) emergency call,k to grab it from fed ex and delivery it to my home at bed time dark o thirty.

I have to stay up to go out with a flashlight to find the package in the driveway at 10 PM in the driveway.

the ice packs, melted inside.

they are really motivated it appears sometimes.

Ros
beechfeet
beechfeet
Does anyone know if there is a governing authority over these
places?
I've contacted corporate offices in the past about issues such as this with good results. Seem they dogear -some will know this term used before post-its- your file and for a while you get good service.
I know you're exhausted Coltrain but as an advocate these stories
really chap my hide.
I'm checking this out.
coaltrain
coaltrain
Good post beechfeet.

My entire life I have never let anything like this get out of hand. As an example I was having a very hard time with a flood insurance policy - one that I had for 15 years then after the writing agency got bought out a couple times it was a nightmare. I tried talking with them once, then after no resolution just filed a claim with the insurance department in my state. Problem solved.

With this issue I just don't know where to turn. It's not like I can just call my lawyer to handle it for me.

I am just beyond fed up. And add to that now my RA is in full swing, the fatigue/fog is ever present which makes it very hard for me to even pick up the phone now to continue this circus.

I thought my insurance company might be an advocate for me, but when I called them back the second time last week, my call was then directly connected back to the specialty pharmacy.

Yes, I really need an advocate of some type at this point, but don't know where to turn. Do these people realize they are holding very important medication hostage? I realize that Enbrel is not a medication for a life or death situation, but I wish someone would realize what this past 3 months have done to me.

Sorry for the rant - the pain and fatigue/fog are starting to overtake my rational thinking.
beechfeet
beechfeet
New rule-no one apologizes. I count on the site to be a safe place to get it all out. I do understand. When I blew out my back and couldn't even sit for 10 minutes, barely could take care of myself, I was on the phone daily with HR for cobra, ins-had a nurse advocate it got so bad, unemployment, disability. Kept it to one issue a day because of the stress and being on medication made it really tough to focus.
Is your insurance through an employer or former,union maybe? I remember you said you drove large trucks for a living.
altoclef
altoclef
Coaltrain, the insurance company probably won't be much help. They love to collect premiums, but don't mind delaying payouts as long as possible. Asking them for help is asking them to act in their own worst interests. I'd try to get the doctor's office- best yet, the doctor himself- to go to bat for you. Deep in my file cabinet is a copy of a letter a doc of mine once wrote to an insurance company who was trying to deny me physical therapy. Smoke still fills the room when I open that folder, almost 30 years later! As Beechfeet said, a regulatory agency might be a good call, too. Who is the bad guy here, remind me: insurance co. or pharmacy itself? If it's insurance approval, a call to your state's insurance commission can move mountains.