15 replies to this topic

[DebDoodah22]

Hey folks, l just want to poll the group here...
l was diagnosed in 11/2013 and have been on Sprycel ever since. The majority of the time, I have used CVS Specialty pharmacy, but lately i am grown tired of their invasive survey practices. Originally was on 100 mg, then 70, then 80, and after a switch of Oncs last Nov, finally am on 50 and nearing undetectable. My insurance will only allow 30 day scripts which necessitates monthly conversations with CVS. Every single order they ask me to detail any new or worsening side effects, or changes in my health.

QUERY - does your pharmacy drive you crazy with a litany of invasive questions about your possible side effects and general health? Does it bother anyone else that this is a pharmacy, basically collecting survey data.
RANT -They are not my physician much less my oncologist and they are collecting personal information for some undisclosed purpose? Further, they ask how many pills do you have left? which is really none of their business. I have taken to telling them that i appreciate their concern but i already have a Dr. that i pay handily to treat and manage my disease process and i dont need another one. What ever happened to just filling the prescription and checking for drug interactions? I feel they are over stepping their role, potentially for a fee, or for the purpose of selling this monthly individual data back to BMS. Do all pharmacies do this? Who can i try that does not turn every order into a 5 minute 2 page survey?

[tiredblood]

When I was on Tasigna I got the same thing from CVS Specialty Pharmacy. I'd try to refill from work and go through the minimum of at least a 15 minute grilling. I never just outright refused to answer the questions, but I would think as a patient you would reserve the right to refuse. I think they ask you how many pills you have left not only to check compliance, but to assess exactly when they need to ship.  IIRC, for a while the calls would end with a recording about the drug to which I'd just hang up the phone,but I think that stopped at some point.  I agree it was a hassle and took way too long.  Sometimes I'd tell them what meds had changed only to ask the next time... Well, what meds do you have listed that I take and they had not updated my home med list from the previous call.  I'd say the patient has the right to refuse.  Oh, and of course, if you detail your side effects, they are of absolutely no help.  It isn't quite as bad on the Gleevec.  I don't even get a manufacturer's package insert with G.

[SR Bruiser]

Deb

 

I have Sprycel from CVS Specialty delivered to our local CVS, they call when it arrives. When I pick it up I sign for it, no questions asked and off I go. I also get calls at 15 and 8 days letting me know they are shipping.

[kat73]

Deb - Great to see you doing so well!

 

Yeah, I hear ya.  But still, I think this is less invasive nosiness or free research and just caution (aka CYA).  These are powerful, expensive drugs and they are (relatively) new.  Everybody's a little jumpy about the future and they just want to follow all the procedures so that nobody misses a step.  I think they truly do want to catch problems at the small stage.  It's tiresome to have to go through the same old questions, so I try and call when I am fairly calm and not stressed or in a rush.  I try to be kind and courteous - it's a human being, after all, on the end of the line.  I'll tell you what DOES ring my chimes like you - EVERY DOCTOR VISIT I have to go through ALL my meds, spell them for them, update the unupdated updates from the last time (why bother asking me, I wonder?) Jeez, what is the USE of computers????

 

For awhile years ago I was repeatedly offered a nurse's call to check on me and give me advice about lifestyle choices and preventive crap and managing my chronic illness.  Man, I told her off fast - take a hike, lady - do NOT remind me on a good day that I'm chronic!  I followed it up by calling the higher ups and telling them how dispiriting and patronizing this is - it's NOT helpful.

[LouiseS]

My husband's Sprycel comes from CVS Speciality. I think I phoned once to check on something and now every month they call me instead of my husband, even though they also have his number. They don't ask invasive personal questions but they are a bit weird about when they will deliver. The second time they only delivered on the day after he finished his last pill which made us rather nervous. Now they will deliver 2-3 days before he runs out. From Jan his company is changing from Optimum to WellDyne RX. Horrible reviews online. Wonder if this means we will have to use a diff pharmacy next year as a result.

[AdamJ]

I wonder if their behavior varies based on which insurance company is paying for the drugs. I get Sprycel from CVS Specialty and they send 90 days worth at a time. They usually ask how many I have left (I fill out an online questionnaire), but then they ship the next batch to a local CVS about 20 days before I'll run out.

[Silvertabby]

Walgreens Specialty does the same thing. They call me every month when it is time to renew my rx for Gleevec. Every time they ask if I am experiencing any side effects. If I just say yes, they have to transfer me to a pharmacist who wants to know if I have discussed them with my Doctor. Now I tell them I have no new ones and that seems to help avoid more questions. They have to ask how much meds I have on hand, because my Insurance company wanted less than 10 % left before they would authorize a refill. I had to request a waiver because I missed a dose when my meds were delayed due to a holiday weekend and they arrived late. You are right, it is a pain to have to answer those questions every time. I will start using Accredo the first of the year since Walgreens Specialty will no longer be in network with Premera. Anyone know anything about them? I talked to them today to try to get things set up, but was not impressed with them.

[cmljax]

I use Briova Rx which is the specialty pharmacy for Optum which in turn is the pharmacy provider for UnitedHealthcare. I can order when I have one week left, but this counter restarts after each order, so I have been able to build a small buffer.  I have to get my Tasigna mail order (UPS), which I hate because I either have to request a signature and wait all day or have them leave a lot of $$$$'s on my front door step.  I get a 28 day supply with each order. They call me with reminders when my refill is due.  I get the same questions, but like Silvertabby, I have learned to say that everything is just peachy. When they ask how much I have on hand, I fib a little.

 

I am going on Medicare on April 1st and will be switching to either CVS or Walgreen's so that I can have the Tasigna shipped to the local pharmacy and then pick it up there on my schedule. We're lucky to have these TKI's, so to me it's all background noise.

[carrie]

CMLJAX-

I have Briova also. I just say I don't have any new side effects. I think they are great. They call me when it is time to reorder. It takes 5 minutes on the phone. I don't say that I have to sign for it. I live rural and someone is usually home. I have no complaints with Briova.

I have some extra building up also. 

 

DebDoodah22.....Just tell them everything is fine and that you don't have any side effects. I save all my side effect info for my oncologist.I have Blue Cross Blue shield and with a copay card from Novartis...I pay 10.00 a month and Briova does an outstanding job. When I had Walgreens mail order, they had to do an override on the high cost of the medicine, it had to go to a committee, I had to call several times for a week or more just for a 3 month supply. It was a nightmare!!!!

 

Just tell them everything is great.

[binkle]

I've gotten meds from three different specialty pharmacies, as required by the health plans I've been on during the last two years. All have asked if I've had any side effects. I don't find it intrusive, I take it as their CYA due diligence.. They also always ask how many pills I have left. I think that is so they can appropriately prioritize shipments. Don't think I've ever been asked about anything NOT related to the meds.

[Lynne D]

YES!!! It drove me crazy, I always said I'm not going to tell you if I do have issues, you aren't my Dr. I wouldn't want to speak to your nurse!!!! Now I just get them at Sloan because I am in the clinical trial, they are free. That's about the only good thing about picking up my meds.

[beno]

I get my Sprycel through the pharmacy at the hospital where I go.  The pharmacists call and ask questions every month and they also have a pharmacist visit me in person while I'm waiting to see the doctor at his office for my quarterly checkups.  I guess it never bothered me since the pharmacist specialized in cancer patients.  I even asked the pharmacist to advocate for me to get a lower dose from my onc, but that didn't work either.

[tiredblood]

I kind of chuckled when BCBS offered me case management to help me manage my condition. I'm like, doc and I, we've got this.

[CallMeLucky]

Depending on what they are asking you, it is typically associated with regulations.  The reason I can't get auto renewals, etc. is because Sprycel has a black box warning and the pharmacist is required to ask a list of questions.  While it may seem annoying it is done for the purpose of trying to ensure patients on potentially dangerous medications are properly reporting their issues.  Both so they can be treated properly and ensure other patients are benefiting from the information.

[scuba]

".... The reason I can't get auto renewals, etc. is because Sprycel has a black box warning"

 

You can not get an auto renewal because you take Sprycel?

[trailcml]

I am using CVS specialty pharmacy and also doing 30 day refills but I use the app on my phone and I don't have to talk to anyone. It's very quick and my imatinib comes a few days later to the house. Have you tried the app?

 

Previously, my insurance used Acredo and I had to get on the phone monthly to renew my scrip. This is much better.