Eli Lilly Just Raised the Cost of Zepbound

So why Is the news reporting the opposite?

On July 19, I began taking weekly tirzepatide injections for weight loss, in hopes that it won't just help me lose weight, but that it might also reduce my joint pain and lipo-lymphedema swelling. Since the drug hit the market in 2022, many lipedema, lymphedema, PCOS, and autoimmune disease patients have reported positive off-label effects from taking Zepbound, also sold as Mounjaro for diabetes management. Since I have all of those issues, and have struggled to lose any significant amount of weight since my knee problems developed, I decided it was worth a shot.

My primary care provider (PCP) prescribed the Eli Lilly branded Zepbound auto-injector pens, but my insurance refused to cover it. My plan has a clause prohibiting virtually all weight loss aids, including medication, bariatric surgery, and liposuction (even for lipedema). I quickly learned from the pharmacy that the cheapest price I could pay for 4 weeks of Zepbound injections was $550, if I used Eli Lilly’s manufacturer's savings card.

The full retail price of Zepbound without the savings card is over $1,000 in the US.

These prices are especially maddening when you consider the Yale study that concluded glp-1 drugs like Zepbound can be manufactured for as little as $5 per month. Not to mention the fact that both Eli Lilly and it's competitor Novo Nordisk , the maker of Wegovy/Ozempic sell these same medications at a fraction of the cost in other countries around the world. In Japan, Zepbound is $94.

Meanwhile, analysts expect sales of Zepbound and Mounjaro to bring in nearly $14 billion to Eli Lilly in 2024.

I can't afford $550 a month for any medication, so my PCP wrote me a new prescription for compounded tirzepatide.

Compounded prescriptions are allowed to be manufactured and sold in the US as long as a brand name medication is listed “in shortage” by the FDA.

Nobody really knows how long the shortage will last, so we don't know how long compounded tirzepatide will be available. I am currently purchasing it for $350 a 2ml vial from my local pharmacy, and the first vial lasted 6 weeks. I just purchased my second vial for another $350, but that will only last about three weeks. I actually need to move over to a new pharmacy for a better price as my dose is increasing. My PCP has agreed to send my prescription over to Red Rock, a large compounding pharmacy based in Utah, but they only take monthly auto-pay through a bank account or credit card, meaning I will always need to have that money available in the bank.

Typically, a patient starts off injecting 2.5mg for four weeks, just to get their body used to tirzepatide. Some patients find that they are “super responders” who only need a 2.5mg dose, but this is rare. Others find that with compounding, since the drug comes in a vial rather than pre-loaded auto-injector pens, they can start off at an even lower dose to avoid unpleasant dose effects.

So far, I am following the standard titration schedule. I did my four weeks on 2.5mg, and tomorrow, I'll take my third shot of 5mg. After a fourth week on 5mg, I will most likely move up to 7.5mg. If it turns out that I am losing weight consistently on 5mg, I may stay at that dose longer, but for now my PCP is recommending that we keep titrating up unless the side effects become too problematic.

I am not a super responder, but I don't believe I am a non-responder. Overall, I have lost weight. My trajectory has been interesting, though.

After a week tirzepatide, I was up 1.3 pounds. No big deal, small fluctuations happen to everyone. After two weeks, however, I was up 12 pounds. That was pretty depressing, though my weight tends to fluctuate significantly with my lipo-lymphedema. So, I tried to be patient. I took my third and fourth week shots without weighing myself on shot days because I didn't want to get too discouraged about it.

I did weigh myself on a couple of occasions before we left for my Minnesota/Idaho medical trip, but I was simply going up or down the same three pounds with a net gain of about 13 pounds since I began tirzepatide.

When we returned to Tennessee on August 19, I was surprised to step on the scale and see I was DOWN 11 pounds from my starting weight on July 19. Meaning I hadn't just lost those 13 pounds I gained, but 11 more on top of that, so about 24 pounds in 10 days.

My weight has fluctuated by as much as 25 pounds in only a week or two in the past, so I wasn't super thrilled. For all I knew, I might be ten pounds heavier the next day.

But then I weighed myself again August 20, and I was down another three pounds.

All week since we've been back from Idaho, my weight fluctuations have been small and reasonable. By Sunday, I was down a total of 17 pounds since beginning the injections, and I'm still there today.

It's too early to say how this will all work out.

Only time will tell if tirzepatide ends up helping me lose the excess weight I want and need to lose. Only time will tell if it helps my inflammation and swelling in the long run.

My gut feeling is that both the injections and my treatments in Idaho have helped me finally turn a corner in this exhausting health journey. I am still not eating too different from how I was eating before I began the injections. I simply have a bit more focus and direction.

In Idaho, Dr. Molly made some suggestions for my diet, so we implemented what we could there, and I'm implementing what I can here at home. She wants me to stick to mostly green juices and soups with light salads to give my lymphatic system more of a break. And to quit eating for the day around 4PM. I haven't been able to afford the green juices yet, but I did get a used juicer and aim to start on the green juices soon. I'm eating homemade vegetable soups, but yesterday, I felt like eating more hearty salads, so I did.

Everyone's experience on these weight loss injections seem to be a bit different. I honestly have not prioritized protein on the shots like other patients. Instead, I've prioritized plant diversity, water, and fiber. So far, I don't regret that because I haven't had any of the constipation or diarrhea issues that so many other folks have had.

My side effects on tirzepatide have been heartburn, fatigue, some sleeplessness, and frequent urination, plus some nausea during the first couple of weeks. The first few weeks were rough because my bladder became irritated from the constant bathroom trips, but compared to other people's experiences I feel like I've gotten off very easy for now. Now, the heartburn is infrequent and I'm not so sluggish on shot days.

I've also begun to look forward to shot days, but I can't totally explain why. Perhaps I'm simply hopeful.

Lots of patients report not being able to eat at all on tirzepatide. I've only had a couple of days where I felt a bit like that, but I think it had more to do with the combination of traveling and taking the shots.

I also wouldn't say that I've lost my appetite or that I feel full so much more quickly as others report. Once or twice I've thought, ooh, I ate a bit too much. But not unbearably so.

So far, it also hasn't made me bored with food. My short stint on compounded semaglutide (Ozempic/Wegovy) made eating so boring that it felt like a chore, and that was actually pretty crummy.

For now, I'd just say that tirzepatide makes me feel… calm about food. I don't have anxiety about each meal. I don't get super ravenous, or feel intrusive food thoughts interrupting my concentration. I don't worry about eating perfectly. When I eat a meal, I do feel that it keeps me satisfied for longer, or at least, I'm not thinking much about my next meal at all.

I rarely wake up hungry, rarely have cravings, and there's just this overall peace about food. Perhaps the biggest difference I feel is no “right now” cravings.

The other day, while I kept thinking that an Italian-style salad sounded really good, it was more like, “the next time I get some groceries, I should get stuff to make a nice Italian salad.”

So, I drug myself to the store yesterday after bringing Sophie to school, got some salad ingredients, cut them up, and had salads for lunch and dinner. I didn't beat myself up about it or feel guilty that it wasn't soup. I thought how Dr. Molly said to listen to my body and I did it.

In that way, I'd say that tirzepatide helps me listen to my body better about what it needs. And I don't feel in a constant state of anxiety about eating and losing weight now, even though I am actively working on weight loss.

I'm not second-guessing myself, and that's a very big change.

Many people look down on the idea of taking an expensive so-called designer drug to lose weight, assuming that patients like myself should simply lose weight the old fashioned way. Through diet, exercise, and willpower. What they don't understand is that many of us HAVE lost weight that way, then we also quit responding to those methods.

My lipedema surgeon Dr. Amron has talked a lot about how he thinks lipedema damages our metabolism, particularly as we advance through the disease. Research has shown that lipedema can get worse when patients eat too FEW calories, and many advanced patients with lipo-lymphedema fail to lose much weight even through bariatric surgery. Both lipedema and PCOS patients have also been shown to suffer from very low basal metabolic rates (BMR), meaning, we burn far fewer calories at rest than the general public.

There's a lot that we still don't know about lipedema, hormones, and metabolism, and Dr. Amron has long suspected that my body's resistance to weight loss after lipedema surgery has been tied up with those other issues, like my PCOS. Dr. Molly would argue that it's all tied up with my nervous system and trauma’s lasting impact on the body.

Ultimately, though, we are all trying to get my metabolism to work better. The truly exhausting part about my weight gain over the past several years has been how hard I've worked to get the weight off with no results.

It's demoralizing to be treated badly by people who believe I am just lazy and undisciplined. Especially when it comes from doctors who won't treat my issues or strangers who immediately write me off as less than human.

So, lots of people think these weight loss injections are somehow cheating the system. They think that the weight loss occurs from simply eating less. However, that's not what the research shows.

Tirzepatide mimics two gut hormones in the body, GIP and GLP-1. I could go down a rabbit hole explaining what those hormones do in the body, but the gist is that they do a lot more than control our appetites. They directly impact our metabolism. Recent research has shown that patients taking drugs like Zepbound or Wegovy really are seeing an increase in their BMRs.

In that light, we are taking a medication to treat our faulty metabolisms, much like a patient might take medication for their thyroid. Do we shame people for cheating by taking thyroid medicines? Or diabetics for needing insulin?

Again, only time will tell if these injections work for me, but so far, they ARE helping other lipo-lymphedema patients get their lives back, so I am okay with needing these injections for life, just like I must manage my lipedema/lipo-lymphedema for life because this is a chronic disease.

As you can see, then, I am very invested in the status of Eli Lilly and it's pricing of Mounjaro/Zepbound.

So, I found myself very much aghast when I read headline after headline yesterday essentially PRAISING Eli Lilly for dropping its pricing of tirzepatide.

These headlines are extremely misleading!

Remember how I said that a four week pack of Zepbound pens costs more than $1,000? Patients like myself whose insurance won't cover the med WERE able to purchase four weeks for $550, if they used the manufacturer's prescription savings card.

Well, the media is claiming that with Eli Lilly’s news that they are releasing VIALS, that means they are “slashing” their prices. Not exactly. Here's what's actually happening.

Eli Lilly announced they will now offer two vials at a special cash pay price. That means no insurance, and no manufacturer's coupon on these vials.

They are going to sell the introductory 2.5mg dose at $399, and the 5mg dose at $549, each for a four-week supply.

So by “slashing” prices, they mean they have simply dropped the cost of the first two doses, if patients are willing to buy direct from their website and forgo the auto-injector pens. While that 2.5mg dose is a significant savings over the $550 many folks had been paying, the 5mg dose is only $1 less.

Anyone who needs the higher therapeutic doses (ahem, most patients) will have to pay more, of course. Oh, and not just a dollar more, either.

The manufacturer's prescription savings card is also changing. Zepbound patients will no longer be able to get their pens at $550 for a pack of for. Now, the savings card only brings the drug down to $650.

Now, do we see what they're doing? They're luring new patients in with reduced prices on the two lowest doses, which aren't even considered maintenance or therapeutic doses, and then forcing patients to pay $100 MORE than they were previously paying.

None of this is to help the patients who need these medications. It's all just another business tactic to make as much money as possible, and to try to shut down compounding.

While Zepbound remainsled on the FDA shortage website through early August, the availability of each dose remains tenuous depending upon where you live. Eli Lilly has been ramping up production, drawing up plans to release their own vials, and sending out cease and desist letters to prescribers of compounded tirzepatide.

They are “losing” money on patients like myself who've had to use compounding pharmacies instead of their branded product, and rather than making the drug more affordable for us, they're playing games that garner misleading headlines about slashing prices. All to halt the production of the compound and force us to put up or shut up.

It's really disgusting. Lots of folks taking the compound have been stocking up since we don't know how long it will remain available. People like myself don't have that luxury, and we are simply hoping to be able to buy it month-to-month.

If you've seen any of the recent articles about the price change, you might have noticed many stories suggesting that Bernie Sanders praised Eli Lilly’s decision. This is also a very misleading statement.

Here's what Sanders actually wrote:

Last month, President Biden and I co-authored an op-ed demanding that Novo Nordisk and Eli Lilly substantially lower the outrageously high prices they are charging Americans for popular weight-loss and diabetes drugs.

In fact, we said that if these profitable pharmaceutical companies “refuse to substantially lower prescription drug prices in our country and end their greed, we will do everything within our power to end it for them.”

Today, I’m pleased that Eli Lilly took a modest step forward, by reducing the starter price of Zepbound.

The good news is that Eli Lilly lowered the list price for the starter dose of Zepbound from over $1,000 a month to $399 a month, and the second dose to $549 a month.

The bad news is that Eli Lilly raised the cost that Americans have been paying for Zepbound under its patient assistance program from $550 to $650.

In addition, Eli Lilly has still refused to lower the outrageous price of Mounjaro that Americans struggling with diabetes desperately need. There is no rational reason, other than greed, why Mounjaro should cost $1,069 a month in the United States but just $485 in the United Kingdom and $94 in Japan.

And let's be clear: Even with this modest price reduction for Zepbound, millions of Americans will still be unable to afford the diabetes and weight-loss drugs they desperately need.

Further, at the outrageously high prices that Eli Lilly and Novo Nordisk are charging the American people for these widely used drugs, Medicare would likely go bankrupt.

I look forward to discussing the high cost of diabetes and weight-loss drugs with the CEO of Novo Nordisk at a HELP Committee hearing on September 24th. I also look forward to engaging with Eli Lilly to urge them to further reduce the list prices of Zepbound and Mounjaro that they sell in America.

Bottom line: There is no rational reason why the American people continue to pay, by far, the highest prices in the world for prescription drugs. That has got to change.

It frankly disturbs me how Eli Lilly’s jerk move is being reported with so little nuance.

I suppose the big lesson here is to not trust everything you read, and certainly don't just skim the headlines.

Try talking to the people who are actually impacted by the stories you're reading in the news, and you may wind up with a much more accurate picture.