Spilling the Beans on Pediatric Transplant Life

Tag: CVS Specialty Pharmacy


It’s been a busy month and a half at our house since my last post. Between summer get-togethers, the 4th of July, important family news, a week-long fishing trip for my husband, a major power outage, a birthday party, and then a pharmacy situation, it’s been a bit hectic. That doesn’t mean that I’ve been without food for thought for this blog though! So, let me talk about a couple of recent events in our family that illustrate my overall theme of advocating for your child.

One of my most recent posts discussed how COVID isn’t over for us just because the mask mandates are over. At the end of June, NPR published this story that emphasizes how much we should be protecting the immunosuppressed people in our society to help conquer COVID faster. Immunosuppressed people are less likely to develop an adequate immune response to the COVID vaccine due to the medications they’re on and so most likely need more than two doses to have some antibody protection from COVID. Research is also showing how immunosuppressed people can spread variants because it takes them so long to develop effective antibodies to the virus. So, the article argues that we should be doing everything we can to protect the immunosuppressed people around us. I shared this article on social media because I firmly believe that everyone should be getting the vaccine if they can. If one can’t get the vaccine for whatever reason, then that person should be doing everything they can to protect those around them by practicing social distancing and masking up. This is what I’ve been saying to those around me and this is what we’ve been doing for E. Yes, it stinks that E can’t go to the zoo, that she can’t go over to friends’ houses to play inside, that she can’t go to family parties if not everyone’s vaccinated. But my job as her parent is to protect her the best that I can, and sometimes, the best thing for me to do is to keep her home to keep her safe. Other times the best thing I can do for her is to speak up and educate those around me. How can I expect someone to respect my point-of-view if they don’t know my experience and they don’t know how their actions affect E?

When my husband was off on his fishing trip, I saw a friend post on social media about a medial ID bracelet she’d purchased for her daughter. She posted a picture of a pink and white silicone bracelet that looked like it would suit E very well. I’ve been wanting to get E a medical ID bracelet for over a year now. I felt that she’d be safer when we go out or if she’s not in our care if she had one. All the products I’d seen though were too bulky, too grown-up, too big, or too expensive, so we decided to wait a while to buy one, especially since we weren’t going out much thanks to the pandemic. When I saw my friend’s picture of her daughter’s bracelet, I knew I had to check out the Etsy shop she purchased it from. Turns out, I.C.O.E. Bracelets had just the type of bracelet we wanted and I ordered one for E. E had fun choosing the color she wanted and I was glad I got all the information I needed engraved on the bracelet. So now when E goes out, whether with us or anyone else, she’s going to wear the bracelet with this information on it:

Kidney Transplant
Anti Reject-Meds;
ICOE (in case of emergency):
[Mom’s phone number]
[Dad’s phone number]

How E’s bracelet looks on her.
The happy bracelet model. We’re trying to get in the habit of E wearing it every time we go out.

You’re probably wondering what a medical ID bracelet has to do with advocating for your child. Well, think of it this way: it’s a way for me to communicate to other adults enough about E to ensure she’s well taken care of in case she’s ever in an emergency situation and I’m not there. It’s a way for her to tell other people about herself too – whether she’s educating an adult in an emergency situation or exposing a peer to transplant kiddos for the first time. It can be both a life line and a conversation starter for her when she’s out and about. And the older she gets, the more she’ll be away from me, so it’s peace of mind for me that I’m giving her information she needs no matter where she goes.

The biggest, most stressful situation that happened lately that reflects my theme of advocating for your child came about thanks to CVS Specialty Pharmacy. On July 14th, I reordered one of E’s twice-daily anti-rejection medications. I specified delivery for Friday, July 16th and didn’t think twice about it…until the afternoon of July 16th arrived and I hadn’t gotten any shipping confirmation emails about E’s prescription. So I contacted CVS Specialty and asked for an update. The answer I got was that the med would be delayed indefinitely because a prior authorization was needed by our primary health insurance company. Until that prior auth was signed by E’s doctor and received by the insurance company, CVS Specialty would not fill E’s order. Then the message said that the prior authorization request had been sent to E’s doctor and that CVS couldn’t tell me how long the process would take. Our regular transplant nurse coordinator was out of the office that week, so I immediately fired an email away to one of the other nurse coordinators explaining the situation and asking her to please follow up on the prior auth right away. Then I calculated how many doses I had left of the anti-rejection med in question and called our transplant office in case the nurse coordinator I emailed was out of the office too. The nurse coordinator who called me back right away assured me that she would work on the prior auth with the doctor right away and that she would get everything lined up at the hospital pharmacy in case we needed emergency doses of the anti-rejection med. I then sent a firmly worded message back to CVS Specialty demanding to know why a prior authorization was needed since E’s prescription didn’t expire until January 2022 and we’d just had one sent in January 2021. I also demanded to know why I wasn’t notified that E’s prescription would be delayed, (especially when I have to specify how many doses of a med we have left when we place a refill order). The message I got back stated that our insurance company rejected the anti-rejection med because they determined it was “not medically necessary.” CVS could not tell me how long the process would take to resolve and they apologized for any “inconveniences” the delay caused me. I was incensed. E had enough doses of the med to get her through the morning of July 19th (a Monday), after which we’d be completely out. Thank goodness I’d spoken to the nurse coordinator right away and arranged for possible rescue doses. How could all the people at CVS Specialty who worked on E’s refill not realize that by not communicating to me about the delay they ensured we would run out of doses for her and that missing a dose means risk of rejection for her?!

I was so upset by this turn of events that I decided to call CVS Specialty on Saturday morning to follow up on the prior authorization request, as I knew from earlier this year that they worked on Saturday mornings. Well, turns out, CVS has recently changed its Specialty business hours, so only emergencies are handled on Saturdays now. Ironically, the first gal I spoke with to explain my emergency – that my daughter would run out of anti-rejection meds by Monday – told me that my emergency WASN’T an emergency. According to her, an emergency would be if E was already out of doses. Not a good omen to start another day. I demanded to talk to the on-call pharmacist. When I finally talked to the on-call pharmacist and explained the situation, she agreed that we had an emergency and put me through to the escalation team so that E could get meds right away and not miss a dose. The gal I then spoke to on the escalation team apologized and said CVS would “definitely” get the anti-rejection med to us by 9 p.m. CST on Monday, July 19th to ensure E wouldn’t miss a dose. She canceled an order set to arrive on the 20th, verified that there was no copay associated with the order, and informed me that a claim associated with the prior auth had been satisfied. She then told me that someone with CVS would call me either later Saturday or Monday morning to verify the shipment. After speaking to both the pharmacist and the escalation team member, I felt a little better – which was good considering that July 18th was E’s sixth birthday party and July 19th was her actual sixth birthday. I didn’t want to spend both days worrying about procuring meds for her.

We had a nice time at the party the next day on the 18th and it was a great day for E. For her birthday on the 19th, I told her she could decide all our meals and we would play whatever she wanted to play that day until her dad got home and she opened the rest of her presents. But by 9:30 a.m., that plan sort of went down the drain. That’s when CVS Specialty called to talk to me about getting E’s med to us “as soon as possible.” The gal I spoke with said she’d work on it and get back to me with an estimated time of delivery. I was annoyed after the call since I was expecting this call to just confirm delivery, as per my conversation with the escalation team member on Saturday. At 1:45 p.m., the same gal I’d spoken to at 9:30 – a member of the resolution team – called me back to tell me that the earliest she could get E’s med to us would be 1:15 a.m. Tuesday(!). When I told the gal that this “resolution” was unacceptable because it meant that E would miss a dose and that I would have to go to our hospital to procure rescue doses, the gal said she was “sorry for the inconvenience” it caused us. I then asked why there was a discrepancy between what the gal on the escalation team promised me for delivery by 9 p.m. Monday and the actual arrival time of 1:15 a.m. Tuesday, and the gal told me that she didn’t know what the escalation team member had promised me since they were on different teams and she could only offer what she could offer. I then asked to speak to her supervisor. She told me there was no one else I could speak to because she was a member of the resolution team. So then I asked if she could tell me why no one from CVS had contacted me to inform me of the prior auth request the previous week. She told me that they don’t normally do that because they communicate with the doctor’s office and it’s the doctor’s responsibility to turn in the information for the prior auth to insurance as soon as possible. Then she told me there was nothing I could’ve done to speed the process along if they would’ve contacted with me. I told her I begged to differ with her – if I would’ve known about the prior auth request I could’ve worked with my transplant coordinators to alert the doctors to the prior auth request sooner and could have potentially avoided running out of meds. The gal also told me that she started working on the request as soon as she got in to work. I find this hard to believe considering that CVS Specialty is based out of Pennsylvania and therefore on Eastern time, while I am in Central time, and based on the time I got the call, it was already 10:30 a.m. in Pennsylvania. If my emergency request with the escalation team from Saturday had been taken seriously on Monday, then the gal with the resolution team should’ve only had to arrange shipment right away when business hours started on Monday. So where was the breakdown between teams here? What good is an escalation team if they don’t actually speed things along? What good is a resolution team if the resolutions they devise don’t actually provide resolution to the problem? What good is a national patient portal if teams from different departments don’t communicate with each other and work together? I informed the gal that CVS Specialty is the worst specialty pharmacy out of the three I have worked with and I was extremely dissatisfied with the way our current situation was handled. The gal then asked if I needed to speak with a pharmacist. When I answered no, she told me that she would send me the tracking information for E’s shipment.

So rather than playing with E and making her favorite supper for her birthday, I made two different phone calls to the outpatient pharmacy at our transplant hospital after the second phone call with CVS and arranged to pick up emergency doses later in the day. When my husband got home, the prep work for supper was done and I informed him he’d have to throw everything together, and we had E open the rest of her birthday presents before I had to leave for the hospital. When I got to the hospital pharmacy, I had to wait just five minutes before picking up E’s rescue doses, which one of the pharmacists apologized(!) for not having ready sooner and which was not billed to insurance at all. The hospital pharmacy even gave me more than we needed – just in case. Yes, our hospital has a vested interest in making sure E gets the meds she needs since she is their patient, but what a difference in customer service between our hospital pharmacy and CVS Specialty! We were treated like people with an emergency situation at our hospital, whereas CVS Specialty treated us like we were random numbers. As I made my 15 minute drive home from the hospital, I wondered what we would’ve done if we lived in a rural area and were hours instead of minutes away from our hospital pharmacy. What would we do without our amazing nurse coordinator who ensured the rescue doses would be waiting for me?

After supper we played outside with the girls and enjoyed home made ice cream on the deck before bed time. Wouldn’t you know that the tracking number the resolution team member gave me for E’s shipment didn’t work? To prevent the doorbell from waking everyone up that night, I decided to sleep on the couch until the courier arrived with E’s med. Good thing I made that decision because the courier didn’t arrive until 2:45 a.m. and I didn’t get to bed until after 3. Naturally, I was tired the next morning and wasn’t at all up for any more nonsense. A representative from CVS called me a little after 8 to make sure the courier had delivered E’s med with no problems. When I shortly replied yes and told her at what time the med arrived, she asked if there was anything more she could do for me. I ended up having a half-hour long conversation with her about everything that had happened and I asked her what the procedure was at CVS that E’s med could have been delayed from one department to another. I also asked how a prior authorization could have been required for an existing med that had a current prescription. The representative was very apologetic, listened to my version of the story, and took notes to call the supervisors of the previous representatives with whom I’d spoken. She looked into E’s online patient portal while I was on the phone with her and saw that the med had been billed incorrectly – so no prior authorization had actually been needed! What happened was that the person/people who tried to bill the med to insurance didn’t do the billing in the specific way needed for this particular med and when they encountered a problem, they didn’t ask for help. You can imagine what I felt when I heard this. The representative repeatedly told me that I didn’t deserve to be treated the way I had been and that meds should not be this hard to order. She promised to find me a dedicated person to place orders with in the future who would know how to handle E’s anti-rejection meds and she promised to follow up with me the next day to update me on the progress she’d made to guarantee a medication delay never happens for us again. Well, that representative who actually demonstrated kindness to me for the first time ever from CVS Specialty ended up never calling back. Perhaps she wasn’t as genuine as I thought she was. Or perhaps her supervisor prevented her from doing more to help me. I don’t know. That doesn’t mean my fight is over though. As per the advice I received at the beginning of the year from another transplant mom, I’m going to file a formal complaint with our insurance company against CVS Specialty. Our insurance company needs to know that we weren’t well-served by CVS Specialty and because of CVS, E could’ve gone through a much more serious situation – one that could have forced our insurance company to pay hospital bills instead of covering a preventative/maintenance medication. I am also doing more research to see if there are other ways for us to get around using CVS Specialty as our pharmacy.

Besides raising my blood pressure, this latest episode with CVS Specialty demonstrates how important it is to be your child’s first and best advocate. Being an advocate is the biggest lesson I’ve learned since the day E was born. I can’t count the times I’ve spoken up for E and I can’t imagine what would’ve happened to her had I not done that. For example, we surely would’ve run out of meds due to pharmacy problems many times if I hadn’t been on top of the issues and asked to speak to supervisors, done my own research, and worked with E’s doctors and nurses. I have spoken up about delays in E’s transplant team communicating with us. My husband once called out a prescription error on a doctor’s part that could have been fatal for E if he hadn’t been paying close attention to her medications. We fought for specific goals and treatments for E when she was just a baby in the NICU. I just can’t emphasize enough how important it is to advocate for your child’s health.

Loving your child comes naturally, but speaking out for them doesn’t happen automatically for every parent. If speaking up doesn’t come naturally to you, remember that no one knows your child like you do and your gut instinct is usually right when it comes to your kid. This advice applies to parents of healthy kids and medically fragile ones. If you aren’t getting the answers you need from your child’s doctor, seek a second opinion. Ask questions until you receive the answers you need. If a treatment option isn’t right for your kid, say so and don’t rest until you find something that works. If you feel your kid needs speech/physical/occupational/emotional therapy but your school district or insurance won’t help, ask your doctor for help, reach out to other parents to see what avenues they know of, or ask to be pointed to a social worker. Don’t take no for an answer when it comes to your child’s health!

Know that your child sees what you do for them. By advocating for your child, you show your child they are worth fighting for. You show your child what it looks like to stand up for someone or something they believe in. You show your child how to advocate for their own health someday. Keep in mind that there are ways to be firm and advocate for your child without being rude. Also remember that sometimes the best thing you can do is admit you need help from someone else to get the answers you need. Your child sees these things too. There are times when a child has to learn that not everything can go their own way. But when it comes to health issues, no child should have to go it alone or without, and they should know it’s ok to ask for help. So be your child’s tireless, unwavering, strong advocate and teach them to stand up for themselves in the process.

So, you can see that I practice what I preach. In all these scenarios I’ve laid out, I advocate for E one way or another. I work to educate and inform others about ways they can help keep people like E healthy and safe. I take measures to provide for E even when I’m not with her. Lastly, I work to take care of E and empower her by always standing up for her health. Hopefully my actions and example will encourage other parents to do the same for their kids.

My parents got me this Lucy t-shirt from the Charles M. Schultz museum way before I became a mom, but it is the perfect illustration for this post. 🙂

This and That – Summer Update

Before I write about other topics I’ve alluded to in previous posts, I thought I’d provide a few updates on various happenings I’ve written about so far.

I’m happy to say that we found an open-mouth water bottle that seems to work for E. She had a small Minnie Mouse water bottle with an open mouth that I rediscovered after I wrote the post about drinking goals. I substituted it one day in place of her straw water bottles and she did very well with it. So, I decided to see if we could purchase another bottle like it for some variety. After looking around for a while, I decided on this Takeya one. It’s sturdy and easy enough for E to open, and I like that it’s a little smaller than her Bottled Joy bottles. I also really like the handle on it so she can carry it around. I ordered M some new water bottles too (she’d also bitten through all her straws), and in the process found the next one I’ll buy for E when one of hers needs replacing: it’s this Rubbermaid bottle. It seems like the best combination of both types of her current water bottles. And while my husband scratched his head a bit at new water bottles for both girls, I reminded him that these purchases will be well worth it. Drinking water all the time is E’s life, after all.

E loves to be outside during the summer and we don’t want her to miss out on key experiences of childhood. We keep her inside during the hottest parts of the day, but we also compensate for fluid lost through sweating by giving her extra fluid throughout the day. We aim for at least 100 mLs of extra fluid on top of her 1800 mL/day goal. When she’s running around and playing, drinking extra water is natural to her, just as it is to you and me. But when we need a fun summer treat, we make popsicles and smoothies. We usually make Koolaid popsicles in whichever color E and M decide they want. We have our own popsicle molds and I weigh the liquid in one section of the molds before we pop the full tray in the freezer. Last summer we started making smoothies at home in addition to the popsicles. M and I enjoy blueberry banana smoothies, but E LOVES cantaloupe smoothies! This summer melon smoothie recipe is our favorite, and she can’t wait until Grandpa has cantaloupes from his garden to share. I was not a big fan of fruit growing up (veggie lover here), so making smoothies at home is a big win for me on all fronts: I’m trying new fruit (mango was the new addition last week), my girls get healthy snacks, and E gets fluid for her fluid goal. We used our big blender last year to make all our smoothies, but in May my husband surprised me with an immersion blender. Ours is a Kitchen Aid 2-speed hand blender, and I love it! I can quickly wash the blending arm and set it out to dry and we can make smoothies again later in the day or right away the next day instead of waiting for all the pieces of our big blender to dry. The lid for the blender jar is very convenient as well. I’ve put the lid on and set leftover smoothie in the fridge for the next day and didn’t have to worry about dirtying any other glasses or cups. I know there are lots of different types of blenders out there for smoothie making, but I thought I’d share what is making my life a little easier. This week’s new smoothie ingredient is peaches, and next week’s is kiwi. As long as we stay away from grapefruit, we’ll be fine. As most of you transplant parents know, grapefruit doesn’t play nice with anti-rejection meds.

In March I wrote a post detailing our headaches with our insurance company denying coverage for two different injections E received in November. Well, I’m happy to report that 6 months later(!), we received word that those denials were officially overturned. As I mentioned, it took me, our nurse coordinator, and a financial coordinator to assemble records to submit to the insurance company to set matters straight and establish that the injections E received were medically necessary. Then one of E’s nephrologists had to get in contact with the insurance company’s doctor several times to explain why the injections were necessary. There’s got to be a better way for doctors to submit claims to insurance companies and for those doctors to submit evidence of medical necessity right away. The current system of denying coverage to the patient, informing the patient about the denial months later, and then asking the patient to assemble records and coordinate with doctors to submit evidence is such a long process. If doctors could submit reasons for treatments with their claims right away, then insurance companies would have all the information they need to take care of claims on their end and the process would go a lot smoother and more quickly, in my opinion.

E’s neutrophil counts have been up and down the last couple months, so we’re still riding things out to see if a medication change is needed. Unless her upcoming July labs are drastically low, I suspect we’ll discuss this topic in depth at E’s next routine check-up with her transplant team in August. To be honest, it makes me nervous watching those levels for a couple of reasons. The first obviously is that a low neutrophil count for E is dangerous, as I’ve already discussed. The second is that if a change in medication is necessary I hope we’ll be able to get that new med without complications from the pharmacy. I’m glad to say that I’ve only had one problem with CVS Specialty Pharmacy since January. This latest problem in May seems to be a problem with their automated system and customer service. I ordered one of E’s anti-rejection meds on a Saturday through her online patient portal and selected the day I wanted the medication delivered to our house, which was a Tuesday. We regularly get expedited two-day delivery. The system sent me a confirmation of the order that same day and I received a confirmation of shipment on Monday. On Tuesday I received a message stating that our delivery would be delayed until Wednesday. Then I received another message stating that the medication would be delayed indefinitely until I called the CVS customer care team. A delay in delivery is a problem because I have to make sure I am home to sign for the delivery and we were expected at appointments on that particular Wednesday. I called CVS to see what in the world was going on, and was told that my request was received too late in the morning on Saturday to get the medication to us by Tuesday. But I could create an account on the website of the commercial shipping company CVS uses, leave directions for the delivery driver if I wouldn’t be at home in time for delivery, and ask the driver stop at a different time. I was definitely annoyed at the cryptic messages from CVS and the explanation for the delay, but felt like I could deal with the solution just fine. But what I then learned from the shipping company’s website is that you cannot specify a change in directions for delivery if the package to be delivered is medication OR that package needs a signature. I can only give specific delivery directions to a driver if I’ve already missed one delivery. Frustrating. So, I ended up hurrying home from our Wednesday appointments and received E’s med when it arrived. I also told the CVS customer care rep how unhelpful the email messages about the delay were. I’m continuing to speak up about any problems we encounter with CVS.

In my post about pharmacies, I wrote about appreciating the little things in life like going to the pharmacy of your choice. Recently, I realized I find joy in another absurd little thing – finding brand-new unused syringes and medical supplies tucked away in cupboards in my house. 🙂 We still use syringes to give E all her meds through her G-button. She probably is old enough to take pills by mouth, but with her very sensitive gag reflex, we are content to keep giving meds this way for a few more years yet. Her G-button is a security blanket for all of us in that we can give her fluid boluses when she starts to get dehydrated, and we still routinely use it most days for one bolus. Having a button is so normal for E and she really owns it, so we don’t have problems there. The problems are making sure we have enough adults on hand to care for E that know how to use and change her button, and that we have enough supplies on hand for both her button and her meds. G-button kits like E has cost our insurance around $450 and we can only get one kit per quarter. So if E breaks a button, we have to have a spare on hand, go to the surgery clinic at the hospital for a new one, or order one and pay for it out-of-pocket. Thankfully, we’ve never had to order one out-of-cycle, and we’ve always had a spare on hand. We’ve also had great service from our home health companies for ordering the kits and supplies we need. Since the kits and supplies cost so much though, I try to only order exactly what we need. Therefore, it was awesome to find some spare med lines, bolus connectors, and bolus syringes tucked away in one of our cupboards at the beginning of the month. We regularly wash and reuse the lines, connectors, and tubes, so these spares were from previous kits where only the button had been used. When a line or tube gets to be worn out, we throw it away and replace it with a spare. So I did a happy dance when I realized we had more spares than I thought we did! The same goes for syringes. We use 8-9 syringes of various sizes each day for giving meds. That is much less than we used to use before and right after transplant, but it still amounts to quite a lot of syringes. (This is also one of the reasons why I spend more time washing dishes by hand than I would like.) We prefer to use Baxter Exactamed syringes, as they’re durable, fit all the bottle stoppers on E’s medication bottles, and have tight-fitting caps. But, those Baxter syringes are expensive. We’ve ordered packs of syringes several times, and then just wash and re-use the ones we have until we can no longer read the dosage lines on the syringes. So, imagine my delight when I found not one but two bags of brand new syringes stored away by my husband in different cupboards! Truly friends, it’s the little things in life that bring the most joy. And when you’re a Transplant Mom, you live for those little things!

M and E were excited to take our first hike of the summer at our local forest. E had her water bottle and the trail map packed in her hiking backpack.
E loves to be outside and is much more adventurous now that she’s older. Here she and M are running through the sprinkler in the backyard.

Pharmacy Troubles

If someone would have told me six years ago when I found out I was pregnant with my transplant kiddo, E, that I would derive happiness from ease of use of a pharmacy, I would have laughed. That sounds utterly ridiculous. That, however, is part of my real life as a transplant mom, and is part of the reason I wanted to start writing about my adventures in Transplant Land. To outsiders – those with no knowledge of what it’s like to live with a transplant recipient, something like getting medicine at a pharmacy is mundane, trivial, because you don’t need meds to live your life every day. Well, that changes when you or your loved one lives with a chronic condition like an organ transplant. Getting E’s meds is a HUGE issue for us.

For some context, E thankfully takes only two anti-rejection medications and one supplement every day, twice a day. She gets a small dose (really a whiff) of a steroid every other day, once a day. Her anti-rejection meds are generics, and they’ve worked well for her since her kidney transplant back in November 2016. We’ve never had to switch her meds, and she’s only ever had to scale down on the number of meds she takes, rather than needing to scale up. Changes made in her meds are usually dose adjustments to fit her current height and weight.

So if E only takes a few meds per day and those meds are generic, you might wonder what the big deal is about going to the pharmacy. Well, since E is a pediatric patient and she gets her meds through a feeding tube, her anti-rejection meds are compounds. This means that the meds are liquids that are specially made according to her doctor’s prescriptions. It also means that not every pharmacy has the capability to make these medicines, even though they’re common anti-rejection medications. We need to get E’s anti-rejection meds from a specialty pharmacy. After E’s kidney transplant, we were able to have her anti-rejection meds filled at our local Walgreen’s Specialty Pharmacy for three years. It was glorious. We’d been working with Walgreen’s Specialty since E had come home from the NICU and was on a host of blood pressure medications in March 2016. The pharmacists and most of the techs there knew me and were always so helpful. I never had to worry about billing errors, never had to worry about getting the medicine we needed on time, and never worried about a prescription being wrong in any fashion. The Walgreen’s Specialty Pharmacy even gave me three different options for picking up E’s medicine – I could go there, they could ship it to the Walgreen’s retail pharmacy closest to our house, or they could ship it directly to our house. Not only did they make it easy for me to work with them, but E also loved going to “her pharmacy” to get her meds so she could talk to her friends there. We still talk about our favorite pharmacist, Robin.

This is what E’s medicine cupboard looked like in February 2020.

November 2019 marked E’s three-year transplant anniversary. Reaching that anniversary meant that E is considered a successful transplant. But reaching that anniversary also meant E no longer qualified for Medicare as an end-stage renal patient. Good thing, right? It was good from the standpoints of successful transplant status and not having the headache of paperwork that accompanies Medicare benefits. It was terrible from the standpoint of losing pharmacy benefits. We are very lucky that E has not only private health insurance from her dad’s good job, but that she also has Medicaid due to being a medically-fragile, and sometimes complicated, kid to take care of. But even with having two insurance plans to help cover medication costs, our current pharmacy situation is a nightmare.

You would think that if you had insurance, and you had local pharmacies willing and able to make your specialty medications, that you would be able to easily get the meds you need. WRONG. Turns out, our primary private health insurance from my husband’s job has its own pharmacy benefits manager. And that PBM requires that we use CVS Specialty Pharmacy as our specialty pharmacy. The problem with this is that there is no local CVS Specialty Pharmacy. The CVS Specialty Pharmacy is a mail-order pharmacy based out of Pennsylvania. When we first started with CVS in January 2020, E’s prescriptions were sent to three different CVS pharmacies – the specialty pharmacy, the mail-order pharmacy (doesn’t fill transplant meds), and the local CVS retail pharmacy. I thought this was a headache! All of E’s meds were previously handled by the Walgreen’s Specialty Pharmacy for us, so the idea that one specialty pharmacy couldn’t handle regular, over-the-counter supplements and uncomplicated prescriptions never occurred to me. Once I canceled the orders at the separate mail-order pharmacy and were down to just two CVS pharmacies, the real problems started.

First, E’s transplant nurse coordinator had to call CVS Specialty multiple times for them to get E’s prescription dose and method correct. Then, it took multiple calls from me to get CVS to correctly enter E’s two insurance cards into her online patient portal. Once I got the insurance information sorted out, then the patient portal showed incorrect doses and methods of medications, as in, her portal said E would be getting her meds as pills instead of liquids. I called with concern about this error and was told that as long as the pharmacy had it in E’s chart that she needed liquids instead of pills, the method error I could see wasn’t a big deal. Then in April, I received a shipment of E’s meds in which the distilled water that I use to constitute one of the meds into liquid form was spilled inside the shipping container. This was a huge safety issue as the distilled water needs to be an exact amount for us to ensure that E receives the right amount of medicine per dose. When I called CVS to complain that the bottle they’d sent me was not sealed correctly and had spilled, the representative I spoke with told me that the spill couldn’t have been from their staff, but had to have come that way from the drug company (never mind the handwritten label on the bottle put there by CVS). I was sent a new bottle of that med.

In May 2020, CVS told me that insurance wouldn’t cover the whole cost of E’s other anti-rejection med anymore because CVS had to make it with a new ingredient that wasn’t covered by insurance. Neither I nor our transplant nurse coordinator nor the transplant pharmacists at our daughter’s hospital had ever heard of the ingredient CVS wanted to use and weren’t sure why insurance wouldn’t cover it. While E’s nurse, the pharmacy team here, and I were all trying to figure out what in the world was going on, E was running short on that anti-rejection med. When I asked CVS to please refill the med while we worked out the insurance and ingredient questions, the representative told me they couldn’t fill it until E’s doctor ordered her a new prescription for it and gave permission to use the new ingredient. Then she informed me that they would not send us a rescue dose of the anti-rejection med we needed until they knew E was for sure out of doses. When I explained that E would indeed run out of doses and that she NEEDS this med every day to maintain the health of her transplant, the representative told me that she understood all that and asked me to please calm down. I was so furious I was shaking when I got off the phone with CVS. Their approach to solving this problem was absolutely unacceptable. My last hope was to see if I could somehow get insurance to agree to let us fill all E’s transplant meds at her transplant center’s out-patient pharmacy.

That last hope saw the light of day for seven months, as E’s nurse coordinator worked her magic to get all of E’s meds – anti-rejection meds and supplements – filled at the hospital out-patient pharmacy. It was such a relief to work with people fifteen minutes away, who I knew I could go see in person if the need arose, and who were courteous and helpful on the phone. But alas, using our hospital pharmacy for the long term was not meant to be.

For healthy people, insurance changes with each new calendar year may go by mostly unnoticed. Not so for us. When January rolls around every year, there are always some changes in store for us. On December 31, 2020, I was told that in 2021, our private health insurance would no longer let us fill E’s anti-rejection meds at her hospital pharmacy. We would have to go back to CVS Specialty. After everything we’d dealt with at the hands of CVS, I was not about to go down without a fight. So my husband and I did more research into our pharmacy benefits. We created accounts on our PBM’s website and researched covered pharmacies. We researched covered drugs. We enlisted the help of the transplant pharmacy financial coordinator at E’s hospital to avoid CVS in any way possible. I even called representatives at the PBM on three different occasions and asked if there was a claim or exception I could file so we could get permission to have E’s meds filled at either our local Walgreen’s Specialty Pharmacy or the hospital out-patient pharmacy. I was the happiest I’d been in months when the first PBM rep informed me that our Walgreen’s Specialty Pharmacy was in network. Seriously. Happiest I’d been in months. In fact, I was so giddy, I smiled and laughed all day and my husband laughed at my giddiness. Unfortunately, that giddiness was also short-lived. Walgreen’s Specialty called at the end of the week to explain that insurance wouldn’t cover the anti-rejection meds if we filled with them, but if there was anything they could help us with, to please let them know. When I called the PBM another three times the following week to find out what was going on, I was told that our Walgreen’s Specialty Pharmacy was in-network for us, but not for E’s anti-rejection meds. We have to fill the anti-rejection meds with CVS Specialty Pharmacy or pay out of pocket for the drugs. The only recourse available to us if we wanted to fill meds locally would be to ask our Walgreen’s Specialty Pharmacy to fill out a contract with our PBM.

On January 13th, I finally accepted defeat. I asked our nurse coordinator to send E’s prescriptions back to CVS Specialty. She was told they would call me to verify insurance and schedule shipment. When they didn’t call me by the next Monday, I called them. I verified E’s insurance plans to the representative I spoke with and was told that another pharmacy rep would call me to schedule shipment. By Wednesday, I hadn’t heard anything more, so I called again. When I explained to the rep that I was trying to schedule shipment of just one of the anti-rejection meds this time, she told me that there would be a copay because one of E’s insurance plans wouldn’t cover the anti-rejection med we needed. When I asked her to explain why, she told me that this particular anti-rejection med wasn’t in the formulary of covered drugs for the insurance plan. So, if I didn’t want to pay for E’s med, I needed to call the insurance company and I needed to have E’s doctor send a prior authorization request to our insurance company to request they cover the med. E’s anti-rejection meds are both generics, as I said earlier, so I knew that there was no way either of them would be refused by insurance. But I pulled up the drug formulary for our insurance plan, called our nurse coordinator so she could work on a prior-auth, and then called our PBM. After four hours on the phone that day, the PBM representative and I got CVS straightened out. Insurance would cover the med and I wouldn’t be charged a thing. The problem was that CVS wasn’t billing all the correct ingredients for the med to insurance and weren’t billing the med as a compounded liquid. The next day, when I called to schedule shipment, I spent over an hour on the phone with CVS Specialty in the morning when they told me that I would be charged a copay for that anti-rejection med after all because E’s secondary insurance wouldn’t cover it. So I spent another afternoon calling E’s secondary insurance, gathering the correct information for CVS, and then calling them back to set them straight and remove my copay. Finally that evening, I got an email that E’s med had shipped. Then I got another email, this one stating that CVS had shipped me E’s other anti-rejection med, even though I didn’t order it. I spent an hour on the phone the next morning canceling the med we didn’t need so our insurance wouldn’t be billed for it. E’s generic anti-rejection meds retail for over $1,000 and $300 a bottle, respectively. So hopefully now it is apparent why a pharmacy that can’t make these medicines correctly or bill insurance appropriately is a real problem for us. I didn’t train to be a pharmacist or healthcare professional. I already have so many other things to worry about with E, not to mention the normal business of life and another kid to manage, that I shouldn’t have to spend so much of my time sorting out CVS’s errors. Many of my former coworkers worried that I would be bored when I transitioned to being a stay-at-home-mom last year. How could I be bored when I spend many of my days dealing with pharmacies and insurance companies?!

I keep asking myself in what world is it ok for an insurance company to dictate what pharmacy fills prescriptions for a patient? If the patient has health insurance, the drugs are covered under insurance, and the patient has a local pharmacy willing and able to make their medicines, why doesn’t it make the most sense to let the patient go to the pharmacy most convenient for them? It boils down to money for the insurance companies. I corresponded with another transplant mom who is a nurse case manager with an insurance company. She confirmed what I suspected to be true: insurance companies limit customers/patients to specific pharmacies in their networks because those pharmacies give the insurance companies deals on the drugs they make. In our case, CVS Specialty Pharmacy gives our insurance company the best bang for their buck when it comes to making expensive transplant medications. It doesn’t matter that CVS Specialty is not convenient for us and that it has terrible customer service. It doesn’t matter that there are brick-and-mortar specialty pharmacies within twenty minutes of our house that can make E’s anti-rejection meds just as well as CVS Specialty. This whole situation feels like the insurance companies are preying and capitalizing on the people who need them most instead of doing their best to support those people to better health. The worst part of our pharmacy troubles is now knowing that our situation is not uncommon. I recently heard from transplant families in other states that they experience the same problems and issues we do when working with CVS Specialty and Accredo Specialty Pharmacy. Several parents told me that their kids have been forced to go without doses of their anti-rejection meds for several days until their mail-order specialty pharmacy could get them their meds! This is a severe health risk! Others stated that they’re regularly forced to go to their hospitals for emergency doses of anti-rejection meds until their specialty pharmacy can deliver meds that have been delayed.

If I could go to Capitol Hill and speak with Congress about prescription drugs, here is a version of what I’d say: if an insurance company is allowed to limit my child’s pharmacy choices because it’s convenient for them, and then the designated specialty pharmacy doesn’t do its job, how is that caring for the most vulnerable of our population? Transplant patients already have complicated medical conditions to manage, why are these companies making it harder for them? My child didn’t ask to be born with a rare genetic disease that necessitated an organ transplant in order for her to live. But our family has fought tooth-and-nail for her to live and my husband does his part in working to pay for health insurance. Why should our daughter’s health be put in jeopardy to line the pockets of insurance company executives? Why isn’t a free-market economy allowed when it comes to specialty medications?

I’ll save my thoughts on the costs of prescription specialty medications for another time.

Now that we’re stuck with CVS Specialty Pharmacy for the foreseeable future, my new method of dealing with them looks like this: document each phone call by taking detailed notes, including the names of all the people with whom I speak. Fill out CVS customer surveys in detail each time I receive them. File formal complaints with our health insurance company each time CVS makes a grave error in E’s prescriptions, we don’t receive meds on time, or when bottles arrived damaged. Procure rescue doses from our hospital pharmacy if/when we need them. Fill all non-specialty prescriptions at Walgreen’s. Lastly, hope and pray for drastic improvement in customer service…and the ability to choose a specialty pharmacy that works for us!

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