CLL Support

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Venclexta Filled At Pharmacy?

I'm helping a person pick a Part D Rx plan, and one of her medications is Venclexta. I searched and it looks like Mutual of Omaha is one of a number of plans that would work equally well. A search on their web site for Rx shows that Venclexta is an approved Tier 5 Medication, and it appears as if it can be filled at CVS.

Our problem is there is a footnote on that analysis on their site (number 9), which states that this medication might not be able to be filled at your local pharmacy, depending on FDA regulations. I've tried calling Mutual of Omaha, got sent to Customer Service, and they sent me to Accrido a Specialty Pharmacy to get the answer. Accrido said Venclexta is not on their list of medications they handle.

Does anyone on this site that takes Venclexta fill it at a regular pharmacy, or is it only fillable through a Specialty Pharmacy?

Carl

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Venclexta

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Hi Carl,

I can’t say for sure, but I *was* given the option of picking up my Venetoclax at my local mom-n-pop pharmacy (where I get my regular little meds); I chose instead to pick it up at my local cancer clinic (Texas Oncology), though, simply because that’s where I was being treated & went for labs etc.

Plus honestly I didn’t trust my local pharmacy to handle my 15000$ monthly bottles. That was unfair of me, I think, but still ...

—Dave!

Thanks for the input Dave. I actually called Genentech and spoke to their patient assistance program. A case worker there said Venclexta was always distributed through a Specialty Pharmacy, but I imaging there are exceptions as you apparently had once.

only specialty pharmacy. it cannot be filled at a cvs UNLESS that cvs is a specialty pharmacy. cvs has a couple in the country. they are still mail order to you. there are many specialty pharmacies. you might inquire directly-call your insurance. You also might find more answers to this on the facebook cll sites. Most people on this site are not usa-the facebook sites seem to be mostly americans i will tell you mine- i get imbruvica and vencelexta under medicare d. Baystate Specialty Pharmacy springfield Massachusetts. they will send thru the mails. Tjhey are also part of a specialty pharmacy group throughout the country. You might get them to help you.

My insurance said I could pick it up at local pharmacy but they were wrong. They were also wrong about my copay. It is shipped to me from Biologics specialty pharmacy. If your friend is on Medicare you need to understand the cost process. Someone else on this site should be able to help you.

Your friend might be able to get financial help thru LLS or another group.

See if you income qualify for free drug from Genentech, I did. Ask the doc to call the company to send info. The company called me, and the process was done over the phone. It will be shipped from South Dakota, usually 2 weeks (I waited in line on the phone about 15 mins for a refill request a week out). The Genentech Pharmacy contract company, Medvantix,in South Dakota has been having some weather related challenges so far this year, they are running behind due to massive storm, now fire. I got my first fill with the ramp up box last Dec within a week, it's my refills that have been a problem. If you go this route, start the refill process 2 weeks before due! And if you do other meds online, this may be an approved place, they do other things on top of the Specialty Meds routinely.

the medvantx specialty pharmacy is in Louisville kentucky. that's where my venclexta is sent from. they were the ones with the ice storm issues

I thought the shipping issues were from Fedex in Louisville being shut down. My Medvantx facility is in Sioux Falls, SD. My RX label says Sioux Falls, SD. The people I spoke with on the phone said they were in SD, and their shipments went through Louisville, which had shut down from the ice storm. That's what someone there told me, anyway. I got my emergency supply at that time from Diplomat Pharmacy in Flint, MI, who wasn't yet affected by the storm and uses UPS. I had a $2900 copay for 60 tabs, though, and it was run through my insurance, a Humana Medicare Advantage PPO. And what the website calculator said my copay would be, was way less than that. I agree, don't trust the website "pricing". And my Humana plan has several options for a specialty pharmacy that would ship Venclexta. If I were paying a copay, I would check with any and all options to see the copay difference. At the time of the ice storm, I was limited to a facility that was still open with shipping routes still open .

we'll now you have me confused? i get my medvantx from their specialty pharmacy in louisville kentucky

They likely have more than one site. Diplomat did, I chose the Flint, MI one because the ice storm hadn't hit yet. I think I am further West than you, most likely the contract with Genentech is "any" Medvantix pharmacy! And the pharmacy picks their nearest site to the client to process? So wizzard166's friend may get yet a different site, if they qualify for free drug from the company.

And I would still ask different pharmacies their copays, just to see if there WAS a difference, if I was paying.

i;m a retired retail pharmacist. the insurance decides the co=pay not the pharmacy.

Yes, but sometimes there are agreements between insurance and "preferred" pharmacy companies that you get a lower copay if you use a "preferred" pharmacy. If I were paying a Venclexta copay, I would ask not only any pharmacy recommended by the doc, but those listed by the insurance company. In case there is a "preferred" pharmacy discount. Humana told me about several pharmacies they recommended for Venclexta, but since the copay was significantly higher than what their website stated, I am guessing it wasn't a "preferred" pharmacy. I needed some urgently & didn't have time to shop around, I needed a place that was still shipping when that ice storm was going on earlier. I agree there often isn't a copay difference, but it doesn't hurt to ask or double check!

I know that; however, when I ran the study on medicare.gov I put only major retail chain pharmacies like CVS, Walgreens, Publix, and Walmart. Plans like Mutual of Omaha and others like Wellcare all show a co pay structure for the Catestrophic phase of Part D of around $620 (for 4 pills of Venclexta per day). Since I'm learning now that Venclexta will have to come from a Specialty pharmacy instead of a regular retail pharmacy, I'm not sure if the Specialty pharmacy will follow the same pricing in the Catestrophic phase as Medicare is showing the insurance company agreeing to with use of the regular retail pharmacy. In fact I'm not sure if Specialty pharmacies are held to Part D rules on Co Pay structure at all. I talked to one Specialty pharmacy called Accredo, since Mutual of Omaha gave me their name and number, but Accredo personnel told me they do not have Venclexta on their list of pills they provide.

My guess is since the insurance company is showing on medicare.gov that they do cover Venclexta, and since they also show in that same study what the co pay is in the Catastrophic phase, that the Specialty Pharmacy will be held to that. Problem is that I couldnt find anyone, at the insurance company or at a Specialty pharmacy, that could answer that question.

Carl

Well, unfortunately the website for Medicare is error prone. I just went on it to check, and it told me my zip code is invalid. Which is why I recommend an agent, they are familiar with the plans in your area. They don't charge the patient any extra commission. The error prone websites don't either, but at least you can speak with a hopefully knowledgeable agent and ask questions and get things in writing. I actually was verbally told things that were incorrect when I studied the plan documents, the system is truly a mess.

Wondering what or who you are considering an agent? Thanks

Someone with a license to sell Healthcare Insurance by their state (In my state, it's a dual Health and Life Insurance license). As opposed to someone answering questions in a Wal-Mart kiosk (unless that person can say they are a licensed agent). Or someone answering the phone at AARP, or another 1-800 number. Agents get their commissions from the companies, not patients, so unless there is some back-door dealing going on, the information should be reliable.

I had so many questions from patients when I worked retail, I took a course, took the state exam, & got licensed to sell healthcare & life insurance just to learn how it all worked. But that was decades ago and things have changed, and continue to change.

Oh okay...thanks much!

i am a retired retail pharmacist. a pharmacy does not know a price until they transmit the rx to an insurance computer. get an rx and have the pharmacy transmit it. if you don't like the price they can cancel the prescription. I did that many times. however i filled my first venclexta of the year in january -the co-pay was 2700 dollars. feb and march were each 650 dollars. Yours would be in the ballpark. if you can get co-pay assistance it would be zero

I also searched that way and the information I got was incorrect. To find out your actual cost your hematologist needs to submit a treatment plan to the insurance company. After mine did that, I found my Venetoclax was totally covered, no copays $0

Hi wizzard166, -

I expect that you may be using the Medicare plan finder:

medicare.gov/plan-compare/#...

That will help you and your friend find the lowest annual cost for a Part D plan. Mine usually comes out to be Express Scripts / Medco for the lowest total annual cost (not including copay assistance from LLS.org or PAN - Patient Access Network).

In the past, when specialty pharmacies were needed to deliver expensive drugs like Ibruvica or Venclexta, that Medicare website would work best when you designated a local pharmacy. But in reality the drugs were sent by FedEx overnight.

So just choose a local pharmacy and don't worry. It will come by overnight delivery.

Len

Hey Len

I ran the numbers on medicare.gov and almost any plan offered the same total annual cost; since, the patient goes into and through all three stages leading into the final Catastrophic stage. Once in Catastrophic stage all Part D Rx plans have cost set at 5% of Retail Cost, so that is why in essence all companies end up the same.

What I couldnt answer the person I am helping, is whether the costs I see as offered through the various Part D insurance companies is the cost that the Specialty Pharmacy will be charging you. I am assuming because the filling of the drug is going through Part D (unless Specialty Pharmacies are permitted to operate outside of the person's Part D), that the Specialty Pharmacy will also be charging 5% of cost.

Carl

the specialty pharmacy does not decide the price. they transmit the prescription info to the insurance and the insurance transmits the co-pay back. thats what the pharmacy charges you

Wizard - That’s good to know. About to do my own CLL drug insurance research, wish me luck on that journey.

Hi Len - Read your reply to the CLL drug question and all 34 current other replies. Was about to pose my own question about CLL drugs and what best route to setup best insurance(s) to keep those drug costs as low as possible.

Looked up retail cost and my eyes popped out... $200-300/pill! But I know with good health/drug insurance that helps cut the retail cost way down, hopefully to a manageable amount.

Your thread and others seem to lean towards getting Medicare Part D, a no brainer add-on fir me in Nov 2022 when I will be eligible to sign up for Medicare and will tack on Part D for sure.

As a Federal retiree we have private insurance (Aetna now) and that does a good job at drug costs coverage by itself. My research and insurance specialists recommended I just add Medicare Part B when I turn 65 n keep private insurance to cover copays etc. But.... that was before I learned I had CLL. I’m thinking I need to bulk up on drug insurance and DO get Part D to help with any future potential CLL drug costs.

I will call my Aetna rep to see how much they (alone) cover for common CLL drugs listed in this thread.

I’m guessing I should easily “make it”thru next year n hopefully many years before CLL treatment with 13q mutated W&W mode with low wbc, currently (12-14 range) last few checkups.

Anyways was getting your take on medical drug insurance plan(s) to be “ready” if n when treatment might happen. Knowing at that time drugs now could be obsolete n replaced by better drugs etc. of course but trying to plan ahead to cover major drug cost bills.

Your expertise and advice is coveted.

I will also do my own research as stated calling my current insurance company n studying Medicare Part D coverage etc on common CLL drugs... that “seems” to be:

Ibruvica

Vencekextra

Acalabrutinib

Obinutvzumab

May have hacked the spelling of the 4 ?

Did I get the right common drugs?

Thanks for any advice on this question in advance.

Hi Pin57, You may want to start learning about Medicare early enough to sign up 3 months before your birthday next year. Look for the SHIP agency in your state:

shiptacenter.org/

medicare.gov/talk-to-someon...

They have trained volunteers, and some run 3-5 hour long classes to help you sort out if you should keep portions of your federal insurance and when you should go to Medigap or Part D insurance. It is complex and takes time, but once set up it is very easy.

medicare.gov/drug-coverage-...

If you decide to purchase Part D drug insurance, the online finder works great:

medicare.gov/drug-coverage-... (only use websites that end in .gov )

Once you get through the timing discussions and want to choose a Medigap policy, I found this agent to be wonderful

Jesse Smedley | Insurance Broker

iHealthBrokers.com | Specializing in Affordable Health Insurance

Direct: (888) 831-8533| Fax: (866) 300-0127 |

Len

Awesome as always you are. Great tips.

The correct spellings below, with the generic name first / commercial trade name - you should be ready to use them interchangably.

Ibruvica > Ibrutinib / Imbruvica

Vencekextra > Venetoclax / Venclexta

Acalabrutinib > Acalabrutinib / Calquence

Obinutvzumab > Obinutuzumab / Gazyva

Len

Very Helpful! Thanks

I found that the plan finder was accurate, and it compensated for all the twists and turns in Part D. So the monthly and annual initial fees, pharmacy tiers etc. were taken in their calculation.

Apparently the specialty pharmacies bill your pharmacy insurance and you only pay the copay to your pharmacy insurer. The speciality pharmacy may help with getting copay assistance (the pharmacy insurers don't seem to know how).

Len

on part d the YEARLY co-pay for venclexta-i said YEARLY is about 11,000 dollars a year. there are assitance programs to help with this co-pay. pan foundation and lymphoma/leukemia society.

Personally, given the option, I would go with a specialty pharmacy because when I had an issue with venclexta, the pharmacist was familiar with my side effect, having dealt with it many times before, and gave me good advice. Also, I live in Louisville, the UPS hub, and most things (including corona virus vaccine) come through our city and we rarely have airport issues.

Although I paid zero for Acalabrutinib in the past, I had a hefty copay this year and didn’t qualify for assistance. Requesting a 90 day supply instead of the 30 I used to get, brought the cost down.

$3700 for a 3 month supply. Always through a specialty pharmacy.

Mine has to be filled by a specialty pharmacy and is hand delivered to me each month. Genentech has a program where you only pay $5/month if you have commercial insurance. There were no income limit questions asked. Not sure how/if that works with Medicare.

I am not sure about your question but I do have a suggestion. Make sure you let the health plan know any and all other drugs your friend will be taking with the venclexta as I got burned on that recently. I was told that a particular plan covered venclexta, and at a reasonable price, so I signed up for it. When it came time to get the prescription filled the health plan denied it because they only cover venclexta as a stand alone drug or with one other specific drug. Of course that was not how it was put to me when I was looking for a plan. Hopefully this will not be the case with anyone else but like they say, buyer beware! Also, the same is true on the mymedicare website. It showed that this particular plan would cover the venclexta but there was nothing stating the exceptions to the rule. Hope this has made sense. Best of luck....

Yes, this is why I told my story and studied plan documents. Ask for the details up front. And/or find a knowledgeable insurance specialist. Like every other profession, some people are very knowledgeable, some aren't. My local GP got a great one to give a presentation to patients, that was by far the best one I have ever seen. The people simply answering the phone from a 1-800 number often knew less.

Might I suggest asking their cancer clinic if they have any suggestions. (They may not, but they can tell you which insurance pays better). There are also payment assistance programs for almost every drug. At my cancer center, they automatically send an application in for these programs when they order the drug, but all clinics don’t unless the patient asks. Sadly, Medicare patients are often excluded in these programs, but it doesn’t hurt to ask. In September, my CLL specialist said it was time to switch from Imbruvica to Obinutuzumab & Venclexta, which we did in October. (My Venclexta is shipped overnight/FedEX from their specialty pharmacy). I was approved for:

Genentech BioOncology copay assistance program for Venclexta...... my copay is $5/ month.

HealthWell Foundation grant through the CLL fund .......each patient is awarded a certain amount for the period of one year, then you reapply. I have paid 0 for the Obinutuzumab.

(I was on Imbruvica for 6 years prior & paid $10/month.)

Both of these programs are for patients with private insurance only & pay only after insurance has paid, but I would never have known about them , so ask at the cancer center!

My Venclexta was always sent to me by a specialty pharmacy.

Check with the CVS specialty department: (800) 238-7828

My doctor set me up with a grant (income related) and I pay $0 for the Venetoclax. I get it delivered monthly by FedEx. Just a thought if appropriate.

Check for grants to pay the cost of the chemo. The hospital or doctors office should have a social worker help with the paper work.

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