Black and White with a Twist of Sour Lemon

My last post on 10/13/2021 indicated that I would take a month off from the lemonade posts to help other patients navigate their own cancer journeys. This may result in a few of those folks contributing as authors (hint to Robin Deirde) to upcoming lemonade blogs to discuss their own trials and tribulations along their, often broken, healthcare system journeys.

As I sit in the chemo suite today for cycle 10, I am typing this relatively long post, but I promise you’ll learn a lot, especially about your own healthcare, and you or your loved ones may even save money!

My intent of the lemonade posts is to help patients navigate the healthcare system, teach some important lessons to clinicians and patients, and promote advocacy and communication among patients and their medical providers, on various life decisions, pharmacotherapeutic options and choices.

Today I’m going to start with a lesson on prescription prices, your copays, and corruption within the system. This includes a real experience I had the first week in November 2021.

Navigating the not so black and white corrupt system and saving money:
I recently received an itemized bill from my oncology group. You’ll recall that I switched from oxaliplatin to bevacizumab (brand names of bevacizumab “biosimilars” are Avastin, Mvasi, Zirabev). The bill for my bevacizumab (Mvasi) was $5500 per treatment (every two weeks) for which I am responsible for $525.00 per treatment or $13,650 per year.  According to my insurance carrier Blue Cross Blue Shield (BCBS) Federal Plan (Basic) pamphlet, specialty drugs should cost me between $275 and $325 per prescription fill. Taking the highest number of $325 per treatment, that would be $8450 per year, a difference of $5200 per year. Just to remind you, this is one chemotherapy and/or adjunctive medications of several that I receive each two weeks. BCBS does not disclose that they use a Pharmacy Benefits Manager (PBM) that is owned by Walgreen’s called AllianceRX Walgreens Prime for certain drugs, and other PBMs, for example CVS PBMs or others as outlined later in this post. Recall that in the very first lemonade posts, I indicated that the average life-expectancy with any cancer is based on averages that include everyone from all walks of life. These drug prices could easily contribute to less efficacious drug selections and/or stopping chemo altogether, bankruptcy and loss of assets leading to poor diet, anxiety, and stress, all of which will negatively skew the survival rates.

So, what would one need to do in order to get the discounted rates for their chemo drugs, other specialty drugs, or even certain very expensive oral medications from your local pharmacy?

Let’s first start with how a typical chemotherapy treatment day goes…

  1. Arrive at clinic.
  2. Access central IV line through implanted port with a specialized needle (Huber needle), and draw blood for various chemistries, red cell, white cell (plus differential), and platelet counts.
  3. Wait for results above while seeing medical provider to clear me for treatment.
  4. Pharmacists employed by the oncology practice prepare the IV drugs in a “clean room” with special equipment which is necessary to keep the drugs sterile and protect pharmacy personnel from exposure to antineoplastic drugs that could otherwise elevate their personal risk of cancer due to cell mutations from constant exposure to multiple antineoplastic agents.
  5. While #4 is happening, RN is starting hydration, and giving IV anti-emetics (anti-nausea drugs).
  6. After about 3-5 hours, I’m on my way home.

On 11/2/2021 I spent about 2.5 hours on telephone with various BCBS affiliates to ascertain why I was charged so much for my medications and how to get the lower price. I was thinking that maybe the oncology group incorrectly billed out my bevacizumab and other drugs as a “retail drug” rather than a “specialty drug” as outlined in my (and all your) insurance brochures.

My first call was to the pharmacy number listed on my BCBS insurance card.

  1. It turns out that the call does not go to the insurer, but instead to a BCBS affiliated “specialty pharmacy” that referred me to a “retail pharmacy” number.
  2. I then spoke to retail pharmacy clerical person. My question was simple. That is, which of my drugs does BCBS consider “specialty drugs” and which are considered “retail drugs”? According to her list, some of my injectables were the latter. I explained that BCBC has it wrong – there’s no way you can walk into a CVS or Walgreen’s and get a prescription filled for injectable 5-flourouricil (5-FU), bevacizumab, or any other oncolytic, as one would expect with an oral antihypertensive or diabetes medications (not that the corruption is any different for commonly prescribed oral drugs– more to come). Of course, that isn’t her job. So, she referred me back to the “specialty pharmacy” number because she couldn’t answer my questions, nor could she see my injectable drugs on her computer screen of my profile; she could only see the medications I received at CVS which are typical oral drugs – that was sort of my point with the 5-FU and bevacizumab THIS IS IMPORTANT TO ALL READERS BECAUSE IF THESE PRICING SHENANIGANS FOR RETAIL PHARMACY OR IN-OFFICE/CLINIC DRUG ADMINISTRATIONS DON’T AFFECT YOU, THEY SURELY AFFECT YOUR PARENTS OR OTHER ELDERLY PATIENTS.
  3. I called back the specialty pharmacy and now learned that BCBS used CVS specialty pharmacies for some drugs and Walgreens for others.  They put me in touch with AllianceRX Walgreen’s Prime, the “specialty pharmacy” that is in cahoots with the Walgreen’s Pharmacy Benefits Manager (PBM) owned by Walgreen’s, and contracted with BCBS.

Complicated enough?  Just wait…

So, how does AllianceRX Walgreen’s Prime fit into this picture if I want the discounted price outlined in my insurance plan? My oncologist, if he/she agrees and the medical practice group agrees, needs to send a prescription to Walgreen’s. This removes the patient from selecting a pharmacy, as it is billed as a “medical” rather than “pharmacy” expense to the insurance carrier, in my case BCBS.

  1. I need to sign a consent with AllianceRX Walgreen’s Prime (like I have a choice – NOT!).
  2. The drug gets directly shipped to me or the oncology practice. This concerns me, because if sent to a patient, how does the end user (pharmacist preparing the injectable) KNOW if it was stored correctly and maintained potency – did it freeze on the way, was it exposed to heat, how did the patient store it to preserve potency, all creating a potential liability (and bottleneck) for the medical practice?
  3. …and, if all goes well with no delays, the pharmacists at the Oncology practice then must store my prescription separately, prepare it into an IV for administration, and send it up to the infusion suite for me to receive it. As of this post, it is unclear to me how the practice would bill for their pharmacist’s time to admix these drugs that otherwise would be ordered directly from the wholesaler, prepared, and administered in a streamline fashion.
  4. My next call was to the pharmacy affiliated with the Oncology practice. In New York State, a medical office cannot own a RETAIL pharmacy in the same building due to conflict of interest. So, as expected, the pharmacist could not answer my questions, as the injectables are prepared by pharmacist employed by the oncology practice, and not registered as a “retail pharmacy”. That pharmacist referred me to “Billing” within the oncology practice. The pharmacist also told me that as far as she knew, the oncology practice does not participate with PBM specialty pharmacy, or what is known as “buy-and-bill” process. I pointed out that by NYS Regulation, a prescribing practitioner cannot mandate where a prescription is filled and that the patient has the right to select their pharmacy. This is a loophole in the regulation since the oncology group is not a “retail pharmacy”.
  5. I called Billing at the oncology practice to ask how they would handle an outside prescription and how it may disrupt treatment. Surprisingly, he knew exactly what I was talking about, but didn’t have an answer. He promised to email their compliance and legal folks to get answers to my questions. They did just that – I received three calls but nothing is resolved yet.

So, why all this hoopla?

Why does BCBS want me to use AllianceRX Walgreens Prime with all these disruptions?  How does AllianceRX Walgreens Prime benefit?

Put simply, here’s what is really happening behind the scenes whether you are receiving Prolia injection from your endocrinologist or a monoclonal antibody from your rheumatologist or dermatologist, a CGRP inhibitor such as Aimovig for migraines from your neurologist, erythropoietin for dialysis patients from your nephrologist, or any number of “specialty drugs”….

  1. New drug is developed by a large Pharma company.
  2. Costs and marketing analyses are done by internal or contracted professionals that calculate out what the market will bear.
  3. Insurance companies may refuse to add the drug to their formulary or pay anything towards the drug, leaving a patient to pay thousands of dollars a month themselves or to discuss other (perhaps less efficacious options with more side effects and poorer outcomes – think average survival for cancer patients) with their doctor.
  4. Pharma company is forced to raise the drug price to the public and then negotiate a discounted price with a PBM and/or a rebate to the PBM if certain sales metrics are met.
  5. Based on #4 above, the PBM controls which drugs they will pay for, and the prescriber may change what is prescribed to the patient. In essence, the PBM is forcing the prescriber to select a certain medication, the PBM meets or exceeds the sales metrics of their preferred drug, and the Pharma company must now give the PBM a rebate on the drugs they influenced for prescribing.
  6. In the background, if a non-specialty pharmacy is filling the medication (common oral drugs for hypertension, diabetes, etc.), the dispensing pharmacy is billed an upcharge to make up the difference of what the manufacturer would otherwise charge, and that cost is passed onto the patient including cost of drugs and copays.
  7. Keep in mind that the large chain pharmacies often own the PBM’s, all of which drives up drug costs for all medications.

Could any other industry get away with such conflicts of interest? Is Big Pharma responsible for increasing drug costs, or is it the greedy PBMs that advertise they are lowering drug costs, but are gouging the public at time of sale? Keep in mind that in 2015, Express Scripts, the largest PBM-only company in the U.S., reported a profit of more than $660 million, from sales exceeding $25 billion.

It’s interesting to me especially, because for me to receive payment from a drug company to give a lecture, I must sign a contract stating that I will not allow such payment to influence my prescribing, that I do not sit on any formulary committees, and that I have no conflicts of interest. If continuing education is involved, my lead slide must list all companies for which I do consultant work.  But in essence PBM’s, and non-licensed / non-clinical executive staff, are in fact selecting drug therapies and doing exactly what I and my colleagues are not allowed to do.  And in fact, any money a doctor makes from lecturing where sponsorship comes from a drug company is posted on an open access website for all to see – this is not the case with PBM’s.  In fact, it is the opposite, as they are forbidden from disclosing this information by contract.

Bottom line here, PBMs drive up drugs costs, patients have rights to select their pharmacy (although PBMs have leverage to sway, limit, or eliminate your choices), and you will pay a lot more money if you don’t use the insurer’s preferred pharmacy – THIS IS FOR ALL MEDICATIONS, NOT JUST ONCOLOGY MEDICATIONS.

Lesson 1: PBMs are Black and White, as indicated in the title of this post.
The scenario outlined above where the “pharmacy benefit” manager is used is commonly referred to as “white bagging.”  IV therapies that are administered in the office setting are typically covered under a patient’s medical benefit, not the pharmacy benefit.  A summary of the process is:

  1. Provider orders drug from wholesaler.
  2. Provider administers drug to patient.
  3. Provider bills insurance plan (not PBM) for both an administration fee and a drug fee.
  4. The administration fee might be something like $100-200 for a typical IV therapy. The drug fee is reimbursed at average sales price + 6% where average sales price represents the pharmaceutical company’s average price including any commercial discounts.
    1. Here is the rub –> health plans hate paying ASP+6%! They think it’s too high. Instead, in recent years, the health plans have started signing contracts with PBMs (CVS Caremark, Walgreen’s Prime, Optum, Express Scripts) each of which has a unique designated “specialty pharmacy”.  The specialty pharmacy agrees with the health plan that they will bill the insurance plan something less than ASP+6%.  In return, the health plan mandates that anyone who wants that IV therapy must have their provider write the Rx and send the Rx to that specialty pharmacy (as I explained in my scenario). Then the specialty pharmacy “dispenses” the IV therapy to the provider’s office so the therapy gets covered on the patient’s pharmacy benefit because it’s been dispensed by a pharmacy.  The specialty pharmacy bills the health plan for the drug at something less than ASP+6%.  The provider only bills for the administration. #whitebagging

The problem with all of this is exactly what I pointed out above. The minute you insert a PBM in the process, you insert cost. The PBM is going to demand an “administrative fee” and a “rebate” from the pharmaceutical company.  The administrative fee usually amounts to 5% of the drug’s list price.  The “rebate” might be 20%+ of the drug’s list price. (In the case of my bevacizumab, rounding to $5000, the rebate to PBM could be $1250 x 52 treatments per year = $65,000 (and you are paying for this). The PBM collects the administrative fee and the rebate from the pharmaceutical company.  However, the PBM pockets the administrative fee and only shares part of the rebate with the health plan. This is frequently referred to as “black bagging”. #blackbagging  The health plan has no idea how much the PBM is paying for the drug and has no way of telling if the PBM is passing along the savings that they’ve negotiated. In fact, the PBMs absolutely prohibit pharmaceutical manufacturers from revealing their PBM pricing with underlying health plan clients.  As a result, the health plan does not realize the “savings” negotiated by the PBM and the health plan’s members (you and me) don’t see savings reflected in premiums.  Perhaps most egregious, PBMs benefit every time the pharmaceutical company takes a price increase because they are getting paid an administrative fee of 5% on the list price of the drug.  That entire administrative fee is kept by the PBM.  It’s a ridiculous cycle full of contradictions and conflicts of interest.  The very organizations that are intended to police drug pricing – the PBMs – are benefiting from every price increase.

Is anybody here wondering why no president (democrat or republican) has successfully been able to lower prescription prices?  It’s not just Pharma companies donating to campaigns and lobbying on the hill; IT IS THE PBM’s.

To complicate matters even further, some hospital systems have started created their own “specialty pharmacies”. Here, a medical doctor’s hospital clinic’s internal specialty pharmacy dispenses the patient’s prescription and transports the product to the location of drug administration. This is called clear bagging.  #clearbagging

To learn more about the corrupt PBM system, see White Bagging Update: PBMs’ Specialty Pharmacies Keep Gaining on Buy-and-Bill Oncology Channels.


Lesson 2:
If I wait 30 days for a post, it’s way too long!

Lesson 3:
After spending over 12 hours traveling by plane and car on 10/24, I noticed my belly seemed less distended in the morning and eating was as usual. I had suspected for the last few weeks that perhaps the “bloating” was an unusual looking ventral hernia following laparoscopic surgery in June. The reasons I thought this is because diet doesn’t seem to affect the bloating, but large meal intake does, there’s no gas cramping, sometimes the belly actually looks like a half basketball is sewn beneath my skin from the bottom of my sternum to top of pubis bone, and other times, while the belly is still there, it’s a quarter of the size, when I push the belly with my hand, it doesn’t hurt and it retracts, all consistent with a hernia. A couple of weeks ago while doing a sit-up, I noticed a small bulge that looked almost like a muscle from my bellybutton anterior (north) about 7 inches. But I’m certain that wasn’t some weird muscle. This prompted me to ask the NP to examine my belly while doing a sit-up. She immediately confirmed this is a hernia, and yesterday this was confirmed by my oncologist. Just for the record, I’ve discussed this belly bloating in detail with at least five medical providers that examined me over the last several weeks, and not a single one mentioned this as a possibility. I certainly do not profess to be a diagnostician – I am an expert in pharmacotherapeutics!  But really??? All this time I was just hoping all that it wasn’t peritoneal tumors that couldn’t be seen on imaging.

Lesson 4:

  1. When traveling for several hours by car or plane (my Florida trip driving down and flying back), especially with cancer or pregnancy, your risk of developing a thromboembolism (clot) in the legs is grossly increased. Discuss with your medical provider or pharmacist if baby aspirin is indicated when traveling and wear support stockings.
  2. Just because nobody identifies a problem that you’ve presented (i.e., hernia), remember the standard of care has in many cases become assembly line medicine due to time constraints, rather than individualized care. Don’t give up. I doubt I’m a surgical candidate for hernia repair or that any surgeon would have the hutzpah to do it – this is because there is a possibility of “seeding” the tumors resulting metastasis, and tumors like to “cuddle up” to mesh. Think benefits versus risks!

The Dentist:
I visited the dentist about 3.5 weeks ago for a “routine” teeth cleaning” which for me wasn’t so routine because I skipped these since the start of the pandemic. When visiting a dentist, you are generally asked to update any medical changes, including medications. I bet most cancer patients have a limited idea of what they are receiving in terms of chemo, anti-emetics, etc. Even if they did, they may forget to mention they have a central IV-line catheter implanted for treatment. This last point is extremely important. I broached the topic with my dentist, noting that there is some disagreement amongst medical providers and dentists as to whether such patients should receive prophylactic antibiotics for a few days for teeth cleaning and other dental procedures. Why did I bring this up? Presumably there may be elevated risk of infecting the implanted catheter, as bacteria that gets into the bloodstream love to adhere to catheters. And as they travel within the vascular system, if dislodged from the catheter, they can end up in the heart, and that could lead to infectious endocarditis and requirement for a surgical heart valve replacement (plus delayed chemotherapy and requirement for a new central IV catheter.

Well, the dentist looked at me like I had two heads. Then she said, “I need to contact your oncologist”. I replied, can’t you just decide?  I mean, geeze, she is a dentist. And I told her that I felt a doctor of dentistry and Doctor of Pharmacy (me) are probably more qualified to make that decision than an oncologist, and most probably the oncologist will trust our judgement anyway. Well, here we are 3.5 weeks later, and I still have good breath (xoxo) of course and maybe teeth a little less white than usual because she refused to have the hygienist clean my teeth

Lesson 5:
Normal oral bacterial flora includes streptococci, lactobacilli, staphylococci and corynebacterial. There could be an increased risk of infection with a central line catheter, and even with newly implanted hardware from hip or knee replacement. According to Hong et al, regarding IV catheters, “there is no evidence to support the administration of prophylactic antibiotics to prevent catheter-related infections associated with an invasive oral procedure in patients with chronic indwelling central venous catheters.” The decision to clean my teeth without an antibiotic should have been a no brainer. (Hong et al 2021). The dentist’s office attempted three times to reach the oncologist, and so far, radio silence – note this is a communication issue with the office, not the fault of the oncologist. Notwithstanding, even with the evidence cited by Hong et al, I personally would prefer a short course of antibiotics? What’s the harm? Some might argue it increases antibiotic resistance. Seriously though, oral bacteria a generally “stupid” in that they don’t become resistant (although it could create resistance for infections elsewhere in the body), so looking at benefits versus risks, let’s have a discussion and decide together if an antibiotic is needed. Yesterday my oncologist agreed that the dentist and I could have made the decision and there is minimal risk but was perfectly willing to send in an RX for 3-days of antibiotic and leave it up to us.

How am I doing and what’s the scoop?
I’m feeling great. I almost forgot I had cancer. Today I’m excited to announce that by hemoglobin is normal at 13.4g/dL and my absolute neutrophil count (white blood cells and differential are normal at 3.71X10^3/Ul. Since the last post, my wife Robin and I visited Florida (with daughter Hannah and son-in-law Kris). I drove most of the way down, with one overnight stay in DC (Hello DC grandchildren, and their parents), a two hour stop in Savannah to visit cousins Judy and Heather, then down to Fernandina Beach, all in one day. We biked, walked some nature trails, swam in the ocean, and ate fresh seafood to our hearts content (maybe a few drinks here and there). – see, I’m not ready to join the skeletons on Halloween yet. Although in a change of routine, I did finally lop on the sunscreen – after all, I wouldn’t want skin cancer, otherwise I’d have to start a whole new set of blogs (maybe pineapple or oranges instead of lemonade).

During my birthday weekend I gave three lectures at my first live conference in 2-years, since the start of the pandemic. I have attended parties and stayed active with friends and family.

My next “battle” may be the opportunity to flush my central IV line at home with saline and heparin on day-3 of chemo, pull the needle out, and skip town. Robin and I would like to take a few 2-week excursions to Florida during the cold months – the way I see it, I’d prefer not to stay in town for two more days following day-1 of chemo each two weeks, just to have someone flush my IV line with saline and heparin and pull out a needle. Two days each two weeks is 52 days per year total. If my time is limited on this medically insane planet (really the US), I’d like to snag every day I can for enjoyment. I am very well trained to do that myself – but you know the story… Assembly line medicine seems to trump the individual patient care decisions. My oncologist yesterday said (s)he doesn’t believe there is a policy for this or that any other patients have done this, but (s)he happily agreed to send out emails to appropriate persons to make this happen if possible. Personally (s)he wasn’t opposed at all.

I must say, my meeting with the oncologist yesterday was a delight, in fact quite cordial, and even enjoyable. Over the last several weeks we have developed a mutual respect for one another and I believe that my remarkable quality of life, performance status, and outlook are reflective of the relationship we have developed. Still, I feel bad for most folks who don’t have the wherewithal to navigate the healthcare system or know what, who, or when to ask questions.

In conclusion, we’ve learned that medical care, especially PBM’s and life are not so clear, and that black and white has taken on a new meaning. On June 8, 2021, I was ascribed a “death sentence”; instead, I chose a “life sentence” to embrace every opportunity I am capable of pursuing, not the least of which is visiting with friends, family, and colleagues. My wife Robin and my children were all a big part of that decision to pursue palliative chemo.  Next CT scan is on 11/15 – hoping to hear that remission continues. I’m looking forward to the next blog post prior to Thanksgiving. This year, I have more to be thankful for than anyone could hope for!

As usual, comments are enthusiastically welcomed. I love receiving comments of various social media sites (Facebook, Linkedin, Twitter), but please also paste those comments on here if you have time! Many thanks and congratulations (and thank you) if you made it through this entire post!

14 thoughts on “Black and White with a Twist of Sour Lemon

  1. You are an amazing person with a zest for life that I suspect will help result in your durable remission unexplained by science. Your strong sense of purpose – a mixture of wanting to remain alive for a large and loving family, teaching (on many levels), and advocating for ethics and common sense in medical care is profound. Nancy Hart Wellstead turned me on to your blog. She loves you dearly and is a huge fan. As am I. Keep us the fantastic work!

  2. So sad that those with least money to spare and at a time when they cannot fight back are being held to ransom like this. I’m not sure that we in the Uk have the best medical system but to think that people could lose everything to help them stay alive seems wrong to me. It is great that there are people around like you Jeff who are doing the groundword and making things a little easier for everyone. Keep up your grrat work.

  3. I read the entire post although I can’t say I understood all of it! I guess the bottom line is even if you have a fantastic drug plan, you may end up getting screwed in the end because of the high cost of certain drugs. When we went to PA for a weekend, I forgot my Eliquis. I paid $35 for 6 tablets but it was better than risking another stroke. I won’t make that mistake again!!

  4. Really informative, Jeff…and I thought maybe I was going to read about black and white cookies . Keep up the good work and the good life that you are currently living. Happy travels!

  5. Jeffrey,
    Your sharing your knowledge and patient experience is bound to improve our healthcare system. So crazy that the process of providing oncology meds is so circuitous. Perhaps the papers should pick up this blog?!!!
    So glad you are continuing to see energy and joy and so much of your work accomplished every day. Yikes, you have always run circles around me energy wise. Thank you my friend, informative blog! l, Jo

  6. Jeff,
    The research you must have had to do to learn all of this is amazing. I know that this is part of your point but thank goodness you knew to look and how to ask the questions. As describe so many of us would just pay the bills, if we can, forgetting about the outlined costs. Thanks for pulling the curtain back on this and what is allowed. There has got to be a way to make what you found more public. I know you already pulled the curtain back once in your career but this affects so many people, many of whom wouldnt even know to ask questions. This blog needs to be shared much more publicly. Thank you for sharing this information.

  7. I hope that these blogs can eventually be published into a book! (Would that even be possible?) This could help so many people; while some of the wording may be difficult for some (because of the lack of knowledge re pharmaceutical information among other things), your overall experiences are such a value to all of those who are going through illness or other experiences, as well as to those who are the caregivers…thank you again, Jeff

    1. Noel, Thank you for your comments! Rest assure that the plan is to edit this series of posts and publish it into a book. The pharmacological jargon and other complex issues will be spelled out more clearly for the lay person.

  8. Excellent blog. Do they make it so befuddling so people give up trying to make sense of it? They never came upon Jeff Fudin though.!!!
    Where does Good Rx fit in this mess. How do they bring down costs for the consumer.
    Enjoy the warmth of Florida and your Family

  9. I made it to the end of your post Jeff, and I am looking forward to an infinity and lifetime of more blogs (with your AMAZING wealth of knowledge), that you are sharing with all of us -here, in this space.
    Shana beat Cancer, and so will you!!!


  10. A couple of sour lemons is nothing compared to how well you’re feeling and the shifting prognosis, dear buddy!!!!

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