retiring: Anti-Rejection Megication Questions

[Jayhawker]

I’m retiring on July 3, 2024. This means I’ll no longer be forced to use CVS Specialty to receive my anti-rejection meds. Frankly, I’ve had a lot of trouble with them.

Two questions:

1. If you are willing, please share information about which prescription medication insurance plan you are using in retirement. How has it worked?

2. Which mail order pharmacy have you tried? How has it worked?

I’m only taking Tacrolimus and prednisone at this point as far as anti-rejection meds go. My other meds all come through regular CVS and are fairly inexpensive with the exception of the insulin I now have to use post transplant. I'm pretty sure I’ll have to use a local pharmacy for the insulin flex pens but will check that out with online pharmacies.

I appreciate your thoughts.

Jayhawker

[WYOAnne NKF Ambassador]

My husband is retired Air Force so we use Tricare. RX thru Express Scripts. I get 90 day supply at a time. I get Myfortic and Neoral name brand only for $38 each for the 3 months.

[Jayhawker in reply to WYOAnne]

I’ve been looking at ExpressScripts. I’m also wondering about Amazon Pharmacy. I think ExoressScriirs will be better but won’t know for sure until I get my insurance set. Both CVS and Walmart are much more expensive…

Jayhawker

[RhenDutchess123]

I have Cigna...but they have funny rules...when I got put on Phosphorous Binders my Rx Plan did not pay well...I got a Good RX card in the mail ...which is free...and took it to Walmart...my Prescription for 90 days was $280...but with a Good Rx Card it was $90...I told the Pharmacist that I loved him...lol

[Jayhawker in reply to RhenDutchess123]

I met with an insurance advisor recommended by the transplant center this afternoon. I had initially thought Walgreens Specialty but am rethinking that now. They’re about the same price as CVS Specialty. I’m seeing other mail order options that are much less expensive.

Jayhawker

[Mandelin in reply to Jayhawker]

I am supposed to be using mail order but when I first started after my transplant Walgreens/Alliance was horrible. I was in tears each month thinking I wasn’t going to have my meds in time. They wouldn’t talk to me until 2 days before I was out and shipped that day. With all of the things that could happen in shipping I stopped and started using GoodRx.

[Jayhawker in reply to Mandelin]

I definitely understand the stress you describe. This is what I’ve been dealing with as I try to get CVS Specialty to deliver my meds on time as well. We certainly dont need this extra stress!

Jayhawker

[Bassetmommer]

I used several different mail pharmacies. I think that Express Scripts was the best but that was several years ago. I use Aetna for my prescriptions, and they are good. I also use patient assistance programs when they are offered.

[ShyeLoverDoctor]

personally I have had very poor service from cvs specialty. Doctors office had real trouble communicating with them. Almost anyone else should be an improvement!

[Jayhawker in reply to ShyeLoverDoctor]

yes, I’ve had real challenges with CVS Specialty as well. Plus they have driven my doctors nuts.

Jayhawker

[Eyak1971]

Even since my transplant I use the hospital pharmacy for my rejection medicine and unlike walgreens and optumrx which I use for other medications, I am always sure that I can get my medication without a hassle I have aarp medicate with united health and there is no cost for blood pressure medication or thyroid and cholesterol medication. However for others I use walgreens. However whatever the pharmacy or the medication it all comes down to patents as to cost. I learned that while on dialysis. I had one medication that I had lost access to the generic because one company bought another company to keep the generic off the market. I had to contact a federal agency to investigate and it was amazing that the generic again became available. Fortunately I have not had that problem with rejection medication but I do use medicated eye drops that will not have a generic until long after I am gone. I truly wish I had been born in a country that regulates the price of medication. Capitalism and Healthcare can cost lives. I often wonder how many baby boomers today would have not lived beyond retirement without medicare.

[ShyeLoverDoctor in reply to Eyak1971]

Unfortunately my insurance refuses to cover injectable medicine bought at the hospital! I am forced to use CVS specialty. I think I might be able to use Walgreens specialty if I wanted, not sure.

[Jayhawker in reply to ShyeLoverDoctor]

My insurance is the same on injectable meds purchased from the hospital. Blue Cross will cover them if they are administered at the hospital…

Jayhawker

[Hidden]

I had to go through 2 years of CVS speciality so I know your pain. I retired about 18 months ago and after a lot of research selected Blue Cross Blue Shield. I pay about $220 every 3 months but only because of a blood thinner Eliquis, else about $50. I use Amazon Pharmacy and all's good. Good luck in your retirement.

[Tankjsl]

The specialty pharmacy with the hospital that I got my transplant takes care of all of my major medications - tacrolimus &. myfortic. They use UPS to get it to me so there’s no delays you get with the USPS. They even call me to double check if I have enough medications. The rest of my medications I get through our local pharmacy in our grocery store. I have not had any issues. I would check with your transplant team to see where they suggest that you can get the medications. Also our managing company for our medications is Silver Scripts. We use to have Express Scripts and I had no issues with either managing company. Our insurance is with Aetna Medicare though our State teacher’s retirement system.. Best of luck with everything.

[Jayhawker in reply to Tankjsl]

thanks for this detailed response. My transplant center recommends the local Walgreens specialty. That’s probably where I’ll go for the transplant meds. I’m not sure if they’ll be able to handle my other meds or not; although I could certainly get ttdd Wed m through silver scripts it somff Ed other similar option. The insulin flex pens (post transplant type II now requires insuline) willbhsbdd end to come from a local pharmacy I think. I’ll talk with the w as lateens doecislty about that.

Jayhawker

[Darlenia]

My hubby handles his health matters with regular/standard Medicare with a United Health supplemental policy and Plan D for medicine through United (I'm also on standard Medicare but my supplemental insurance is a plan offered by my school system for retirees.)

My hubby's two rejection meds (Envarsus-a time release version of Tacrolimus-and Prednisone) are completely covered by Medicare while everything else is covered through Plan D with small co-pays. He uses a local pharmacy inside our supermarket, Martin's Pharmacy, to fill most of his meds other than Envarsus. The latter is handled by his transplant center's "specialty pharmacy" because of manufacturer delays and supply chain issues at our local pharmacy. When we were unable to get it filled locally, that his center's specialty pharmacy was a fantastic - it's always well supplied with immunosuppressants - and ships my hubby's Envarsus directly to our home. (I've been hearing that Prograf-another name for Tracrolimus-is now not available at some brand name pharmacies in some states.) Since you're taking insulin, you may eventually wind up wearing a Dexcom or Libre to monitor your glucose levels. Those are classified as "durables" and very few drug stores will fill those orders. So my hubby uses an online mail order company, US Medical Supply, to resupply him the sensors, etc. They've been very responsive.

I really hope my write-up doesn't confuse you, Jayhawker. I'm impressed that you're researching matters well before retirement-some put that until it's almost too late. I'm sure you'll get a lot of information from a lot of places. And I know you'll come up with the perfect outcome for you!

[Jayhawker in reply to Darlenia]

I appreciate your detailed reply. I’ve decided to use regular Medicare and Plan F for my supplemental insurance. I had thought my anti rejection meds (minus prednisone which is quite inexpensive) are covered through Medicare part b. I also think my Libre 3 CGM will be covered through Medicare Part b as “durable” medical equipment. The trick is to find a pharmacy or supplier like you’ve mentioned that uses Medicare Part B… I’ll check out the company you mentioned for the CGMs.

I’ve called Walgreens Specialty in my metro area. They work closely with my transplant center. My transplant center recommends them. They’ll definitely handle my anti rejection meds. She also said to contact them for my next insulin flex pen order. Their pricing is better on that than CVS has been. I mentioned Libre 3 but she needs to check on that.

I honestly take only two other meds (levothyroxine and rosuvastatin). I also use eye drops to lower eye pressure with my glaucoma. I can get those meds through any number of online pharmacies at little cost.

My insurance adviser mentioned AARP Walgreens for prescription medication coverage. I’m seeing that mentioned a lot online as a decent option. I just want to check to see if it will cover meds through non Walgreens pharmacies. Although the bigger issue is the annual out of pocket cost.

Thank goodness I’m no longer taking meds for low WBC count. Neupogen injections are quite expensive. Valcyte, for CMV management, is also quite expensive. Plus it sounds like the medications my hemo oncologist will use when my TLGL leukemia flares up is higher doses of prednisone and Tacrolymous. This would be for about 6 weeks only. Since they would already be covered it likely might not make much difference in my out of pocket expense while undergoing treatment for leukemia. Of course that could change…

The insulin flex pens are pricy. So are the CGMs. But if the CGMs are picked up through Medicare part b that will be very helpful. I haven’t given up hope to be able to cut back to only one type of insulin over the next 6 months or so. I’m very close I think. I use few units of the short acting insulin now. But time will tell on this. I well remember the nurse emphasizing, when I attended the diabetes education class decades ago, that there are some medications that elevate glucose levels—it’s essentially out of our control unless it’s an over the counter med we can choose not to take. But if it’s prescription med we have to take, like these anti rejection meds, no matter what we do our glucose will elevate. We can control how much it elevates to a certain extent but we can’t keep it from elevating. I’m certainly understanding what she told us now… Within that context I’m hoping to decrease to only one type of insulin or lower doses of both over the next 4-6 months. I’ll just have to see if I can accomplish this.

As far as insurance and medication expenses go, I’ll be paying about $4500 less annually than I’ve been paying with Blue Cross Blue Shirld through work. I just want to be sure I’ve got the coverage I need as I age out🙂

Jayhawker

[Darlenia]

Hubby says both Dexcom and Libre are picked up by Medicare Part B up to 80%. And then, in his case, the remaining 20% is paid by his supplemental plan. As for insulin, my hubby looks for sugars and carbs in everything he eats and drinks - but his immunosuppressants won't allow him to drop insulin. My hubby is a slender man, he doesn't take that much of either long-term or short-term insulin. He might be forced to use short term once or twice a week. But I think he'd have to be dead before he could get off the long-term insulin. It's very negative side effect of those drugs. But ya got to do what ya gotta do!

[Jayhawker in reply to Darlenia]

Fortunately I qualify for Plan F supplemental insurance due to when I turned full retirement age. I believe Plan F covers anything that Medicare Part B covers so I should find the CGMs are covered. I’m currently using Libre 3.

Yes, a lower carb diet helps to decrease insulin amounts needed. Right now I don’t need any short acting insulin with breakfast. Only a few units with lunch (2-3). Dinner is closer to 5 units sometimes just 4 units.

I fell and severely injured my right foot just a few days before my transplant. It took time to get the ATO brace I now use and more time to find shoes that worked with the brace. I finally found a few stores that sell “mismatched” shoes. These are pairs of shoes with two different shoe widths. I need a wider shoe for the ankle with the brace… Anyway, I finally got workable shoes 4 weeks ago. So, I’m now able to walk safely. As I walk more on a daily basis I am seeing my glucose readings come down. Once I’m able to walk 1.5-2 miles a day, I may find I no longer need the fast acting insulin. I’m certainly hoping so.

Jayhawker

[Darlenia in reply to Jayhawker]

I really hope those extra steps work to your advantage re the short-term insulin. If you're still needing short-term at mealtimes quite often, ask your doctor to increase your long-lasting insulin by a few units. My hubby's doctor was more than happy to do that and free my hubby from those additional injections. His doctor continues, though, to prescribes the short-term for situations that my hubby can't control - finding himself somewhere with questionable meals, etc. His doctor essentially gave him the freedom to adjust both his long-term and short-term according to his needs - carefully, of course. I'd actually like to free my hubby from short-term insulin completely by switching him to Afrezza, an inhalable insulin. It acts faster than short lasting and also lasts a shorter length of time. Maybe that's a problem? I dunno. It's a powder, I believe, that can be kept at room temperature for 10 days after being opened. Another diabetic told me he uses it in public and nobody is aware and it kicks in fast - but I wonder if maybe "the sheriff" might haul you off if he sees you "sniffing" something? I dunno. But I'm definitely going to bring up Afrezza with his doctor when that appointment rolls around. The other diabetic really liked the ease of use. And I know my hubby would love to replace short-term insulin completely with that one if possible. A quick "sniff" is so much better than a "poke".

[Jayhawker in reply to Darlenia]

I did laugh about the law getting involved with sniffing🙂

I, too, really want to discontinue the short/fast acting insulin. That’s the one that causes more problems with sudden drops in glucose for me often leading to weakness, dizziness, and just nit feeling well in general.

As a person who managed my Type II without meds for decades this is new territory for me. Ugh

Jayhawker

[Cabrilla]

I typically recommend to patients that are facing high copays on their Medicare part D so contact their local Senior Center during open enrollment (I think that's Nov 1-Dec 15 each year). They have Medicare insurance advocates who will be able to look up the features of each plan and should be able to determine which has the best benefits to cost ratio each year.

You can also contact an insurance agent and ask them to review plans with you to find the most cost-effective one. I have done this multiple times in the past to answer complicated insurance questions. Never have I been charged, even when I cost them hours of work and end up not purchasing the market plan they recommend.

I agree--CVS is terrible, so glad I don't have to use them anymore. I just noticed that on my new insurance card (I have employer based insurance so don't use Medicare part D) they have a preferred Specialty Pharmacy, I may consider checking to see if they charge a lower copay than my hospital specialty pharmacy.

[Jayhawker in reply to Cabrilla]

thanks!

[littlelinda50]

I am not retired doubt I ever will be able to unfortunately. I was just curious do you not get your tacrolimus straight from CVS? I always get mine at CVS. I have state insurance so it may be different for me.

[nosillap]

Hi Jaywalker. I have Medicare & Medicaid and use my local Publix grocery store with no problems. For me, I have no co pays. Personally I can't stand CVS. Always have problems there also.

[EmTexas]

I have a great speciality pharmacy from NY - that my transplant hospital set me up with. They now ship to me via overnight fedex for free in texas. I tried Walgreens specialty when I moved and it was a disaster. They didn’t have the right dosage so opted to not share any info just not fill my immune suppressant. I found out the day before I was out. Never again as couldn’t deal with the anxiety.

[Jayhawker in reply to EmTexas]

That’s not good. We have a Walgreens specialty in Kansas City. They are the pharmacy the transplant center uses once patients are no longer in the hospital. They’ve already been in touch with me to start the transfer process. Anyway fingers crossed that they work well.

Jsyhawker