This week, a letter surfaced in which Eli Lilly asked for a patient to release medical information so it could contact her treating physician and get more information on the compounded weight loss drug she used.
The letter caused a stir in GLP-1 forums on Reddit and Facebook, and prompted a frenzy of questions online: Was it real, or a weird scam? If it was real, how many patients had Lilly contacted? How did Lilly know the patient got their drug from a compounding pharmacy? And how did the drugmaker get her mailing address if she wasn’t one of Lilly’s patients?
Lilly and its rival, Novo Nordisk, have launched legal campaigns against pharmacies, med spas and telehealth sites making and prescribing compounded versions of their brand-name GLP-1 drugs. Legally, most major compounders are in the clear for now, as pharmacies are free to make the copycats (which aren’t approved by the FDA) while branded versions are in short supply.
Endpoints News tried to track down some answers to the questions surrounding Lilly’s letter, and we spoke to the patient who received it — a woman named Michelle who asked that only her first name be used in print, to protect her privacy. Here’s what we know.
What does the letter say?
Michelle has been using a compounded tirzepatide, the main ingredient in Lilly’s obesity treatment Zepbound, for the last three months. She told Endpoints she got the letter in the mail this week. She posted a picture on a Facebook group.
The letter reads: “We recently learned that you took one of our products from a compounded pharmacy. Eli Lilly and Company is committed to ensuring the safety of our patients and products. We would appreciate it if you could complete the enclosed form and sign the Authorization for Release of Medical Information so that we can obtain more details from the treating physician around your experience.”
So far, we haven’t seen evidence that more patients received similar letters. So it’s too soon to tell if Lilly is broadly gathering info about compounded drugs and pharmacies directly from patients. (We did spot another email from someone who wrote online they took only compounded drugs, but still got an email from Lilly asking them about an adverse event. Endpoints couldn’t verify the details.)
The enclosed form, also seen by Endpoints, asked for information about Michelle’s doctor and details about the prescribed drug, including the name used for the drug, its lot or control number, expiration date, appearance, and how it was obtained, among other details. It also asked if she experienced any adverse events.
Is it real?
A spokesperson for Lilly verified the letter’s authenticity, but didn’t respond to a question about how many patients received similar letters.
“Patient safety is Lilly’s top priority, and we actively engage in monitoring, evaluating, and reporting safety information for all our medicines. At times, Lilly may contact individuals who have previously contacted the company so we can gain more information; this represents one of those cases,” the company said in its emailed statement.
In an additional comment after publication, the spokesperson said Lilly is not asking patients for their medical records to gather information about compounding pharmacies. She said the company is adapting processes it uses to monitor the safety of its own drugs to the “unprecedented proliferation of knockoffs of our FDA-approved medicines,” as compounders have no obligations to report adverse events.
For her part, Michelle has no plans to respond to Lilly. “The whole thing gives me the ick if I’m being honest,” she told Endpoints.
How did Lilly know Michelle was taking a compounded drug? And how did they find her?
Michelle said that, in August, she sent the company a direct message through Instagram describing the progress she’s made with compounded tirzepatide, and expressing concern about the affordability of the brand-name treatment. She included her phone number in the message but no mailing address, and told Lilly to contact her with any questions. Lilly didn’t respond to the Instagram message, she said.
Her insurance doesn’t cover weight loss medications. She also said she previously signed up for a Zepbound discount coupon on Lilly’s website, but found the drug was still too expensive and never used it. Patients who sign up for a Zepbound savings program fill out an online form with fields for their contact information, including their address.
Lilly didn’t respond to follow-up questions from Endpoints about whether it got her information from the forms she filled out, or another method.
She pays $225 a month to get compounded tirzepatide through a telehealth company — a fraction of Zebpound’s list price of more than $1,000 a month. Lilly’s coupon for people without commercial insurance for the shot provides a discount of up to $463 for a one-month prescription, and the company also allows people to pay cash for vials of certain dosages of Zepbound, starting at $400 a month. For many people, those discounted prices are still too high.
So far, Michelle said she’s lost almost 30 pounds and has felt an improvement in her arthritis. She hasn’t experienced any side effects, she said.
“It’s been the most effective tool I’ve used my entire adult life,” she said.
Editor’s note: This story has been updated to include additional comment from Lilly.