Latest news with #AmySpencer
Canada News.Net
01-07-2025
- Health
- Canada News.Net
Unapproved and underground: The rise of DIY obesity treatments
SAN FRANCISCO, California: Across the U.S., a growing number of people are taking obesity treatment into their own hands — literally. From kitchen countertops to online forums, users like Missouri's Amy Spencer are part of a fast-expanding community turning to the "gray market" for weight-loss drugs. These are not FDA-approved medications, nor are they part of clinical trials. But for many, they've become the only affordable path to a treatment they believe works. Spencer, 50, injects herself weekly with self-mixed cocktails of weight-loss drugs, including some still in clinical trials. One contains tirzepatide, the active ingredient in Eli Lilly's Zepbound. She's not part of any sanctioned study, and yet has lost 24 pounds — all for about $50 a month, a fraction of the official cost. The ingredients for her homemade doses are shipped from China and ordered online. She stores them in her fridge, measures sterile water, dissolves the powder, and injects it into her thigh or belly. "This is working so well for me. It's so easy. It's cheap," said Spencer. "I don't know what I would do without this medicine." She's one of many Americans sidestepping high pharmaceutical prices by importing active ingredients labeled "for research purposes only." Forums on Reddit and Telegram offer step-by-step guidance on sourcing, dosing, and testing. One such group, StairwayToGray, has over 21,000 Telegram members and recently gained nearly 1,000 members weekly. The appeal is clear: nearly 75 percent of U.S. adults are overweight or obese, yet only 8 percent report having used weight-loss medications, according to KFF. Insurance coverage is still limited and typically only applies to branded drugs. The gray market filled a growing gap, especially after the FDA ordered compounding pharmacies to halt sales of cheaper, customized weight-loss meds. Imports of Chinese-made weight-loss drug ingredients surged by 44 percent in January, according to the Partnership for Safe Medicines. The group warns that it's likely an undercount, as many parcels are labeled in ways that avoid detection. Big pharma firms like Lilly and Novo Nordisk — maker of Wegovy — say the trend is both dangerous and illegal. "You're playing the role of your doctor, pharmacist, and FDA inspector," said Shabbir Safdar, executive director of the Partnership for Safe Medicines. That danger became real for Spencer when she overdosed on a batch of a new drug combo, cagri-tirz — a mixture of tirzepatide and cagrilintide — after miscalculating the dose. She suffered days of severe vomiting and weakness. "I was an idiot," she said. "I didn't do my math." Still, she isn't deterred. A healthcare provider does not monitor her but describes the results — weight loss, improved blood pressure, reduced joint pain — as life-changing. Others like Marie, a 41-year-old "soccer mom" from the Midwest, have built community-led systems for quality control. After buying Chinese-sourced tirzepatide through Telegram, she joined a group of 52 users who pooled funds to have the batch tested. A Tennessee lab confirmed its purity. Marie even gave her husband instructions in case something went wrong. "It's an honor system," she said. "These groups are very supportive." In March, Marie helped organize testing for another batch from a different vendor. This time, 38 users shared the US$1,300 cost to verify the product. Janoshik Analytical, a Czech lab run by a former amateur weightlifter, confirmed the samples were 99.78 percent to 99.85 percent pure. Janoshik's CEO, Peter Magic, said obesity drug testing at his lab has surged, from just over 650 samples in 2023 to over 3,000 in 2024. The FDA, meanwhile, says it continues to intercept illegal shipments at ports and warns consumers against using unverified substances. U.S. lawmakers have called on the agency to take more decisive action, especially against imports labeled as "research chemicals." Yet, the movement shows no sign of slowing. Many of those involved know the risks but feel they have few options. "You shouldn't have to choose between your health and your wallet," reads the mission statement on one gray-market group's site. For now, the gray market remains a self-policed ecosystem, driven by frustration, fueled by online solidarity, and operating far outside the reach of traditional medicine.
Express Tribune
29-06-2025
- Health
- Express Tribune
'The Wild West' of weight loss
In what she calls the "wild west" of obesity medicines, Missouri-based Amy Spencer is a pioneer. Each week the mother of two injects herself with weight-loss drugs, two of which are in clinical trials and not yet approved for sale by the US Food and Drug Administration. One comes mixed with tirzepatide, the active ingredient in Eli Lilly's Zepbound. Spencer, 50, is not part of any drug trial but mixes the cocktails herself, using tiny doses that she believes are safe. The total cost is about $50 monthly, as little as one-tenth of what she would expect to pay their makers for full treatment. The drugs – glucagon-like peptide-1 (GLP-1) weight-loss medicines – are manufactured and shipped from China, according to the packaging. She orders them through online vendors. Spencer belongs to a fast-growing group of Americans turning to what many call the "grey market" for obesity medicines, bringing cheap active ingredients from China often labelled as for research purposes, according to import data and social media postings. It's a trend that drugmakers Lilly and Novo Nordisk, which makes Wegovy, say is dangerous as well as illicit. Reuters tracked online forums and interviewed seven people who said they bought obesity medicines through this market, including an attorney in Arizona who works for a state insurance agency, a retired nurse in Illinois and a Type 1 diabetic in Louisiana, who said the medicine helped cut her insulin intake by more than half. For more than a year there has been demand for cheap Chinese-made powders, exacerbated by limited health insurance coverage in the US Buyers told Reuters the grey market received a boost from an FDA ruling last year that US compounding pharmacies – outsourcing facilities that create drugs in shortage – must stop selling obesity medicines more cheaply than the companies that developed them. Risky business Shipments of such active ingredients from Chinese entities not registered with the FDA jumped by 44 per cent in January from the previous month, according to research by the Partnership for Safe Medicines, a public health group focused on the safety of prescription drugs. It said its findings are likely an undercount, because unregistered vendors may not disclose that their parcels contain medicines. Packages valued at less than $800 that enter the US under the de minimis rule are not included in the data. Nearly three-quarters of US adults are overweight or obese, according to government estimates, but a survey by nonprofit health policy research organisation KFF found only about 8 per cent say they have taken medicine for weight loss. Most of the grey market buyers Reuters interviewed had told their medical providers they were taking GLP-1 medicines but not where or how they bought them. Insurance coverage for weight-loss drugs has recently increased, but typically only covers branded versions, according to consulting firm Mercer. Many Americans have paid out of pocket for cheaper compounded drugs. Interest in taking small doses of the drugs has also spurred the online marketplace, buyers said. Taking to platforms including Reddit and Telegram for guidance, buyers import small quantities, often described as research materials to sidestep regulatory scrutiny. They swap advice for navigating the market, exchanging information on vendors, shipping and dosage, and sometimes clubbing together to cover the cost of testing the powders. One forum is called StairwayToGray. It has more than 21,000 members on Telegram and recently was gaining nearly 1,000 members weekly. It did not respond to Reuters' inquiries, and blocked access to the forum after receiving them. It has a website where it says it does not facilitate group purchases. "This community is filling the gaps and being our own regulators, ensuring testing and access for everyone who needs it. Because you shouldn't have to choose between your health or your wallet," it says. Spencer stores her stocks in her fridge and makes them up in the kitchen – carefully measuring sterile water, rolling the vial between her fingers until the powder dissolves, and drawing the liquid into a syringe before injecting it into her thigh or belly. She has lost 24 pounds. "This is working so well for me. It's so easy. It's cheap," said Spencer, who assumes her health plan wouldn't cover the drugs. "I don't know what I would do without this medicine." 'Very dangerous' In February, 38 US state and territory attorney generals wrote the FDA seeking action against illegally sold weight-loss medicines, including "research purposes only" ingredients from China. "Much like with counterfeit versions, these active ingredients come from unregulated, undisclosed sources ... and pose risks of contamination and inclusion of foreign substances," they said. Shabbir Safdar, executive director of the Partnership for Safe Medicines, said unapproved drugs can have problems with sterility, purity and consistency. "It can be very dangerous. You're playing the role of your own doctor, pharmacist, and FDA inspector," he said. Of those interviewed, only Spencer reported any problems: She once got her math wrong and overdosed, resulting in several days of severe flu-like symptoms. Lilly said it had taken many steps to address patient safety risks posed by the proliferation of unsafe or untested tirzepatide. The company said it is filing lawsuits, educating consumers and working with social media companies to identify and remove posts that promote unsafe products, including those described as "research use only." "We will continue to take action to stop those who threaten patient safety and urgently call on regulators and law enforcement to do the same," a Lilly spokesperson told Reuters. Novo Nordisk also said it continues to take action against entities that violate laws and regulations and put patient safety at risk. America's Poison Control agency, which maintains the nation's poison data surveillance system and monitors GLP-1 exposures, said it could not reliably track cases involving unregulated "research chemical powders" because they are sold under various names and formulations. Reuters
Malay Mail
28-06-2025
- Health
- Malay Mail
Cheap and risky: Stung by high prices, Americans turn to DIY weight-loss drugs from the grey market
Grey market grows for cheap weight-loss drugs imported from China Some users try small doses of substances not yet approved by FDA Drugmakers call trend dangerous and illicit Online community says it's filling gaps in broken system SAN FRANCISCO, June 29 — In what she calls the 'wild west' of obesity medicines, Missouri-based Amy Spencer is a pioneer. Each week the mother of two injects herself with weight-loss drugs, two of which are in clinical trials and not yet approved for sale by the US Food and Drug Administration. One comes mixed with tirzepatide, the active ingredient in Eli Lilly's Zepbound. Spencer, 50, is not part of any drug trial but mixes the cocktails herself, using tiny doses that she believes are safe. The total cost is about US$50 (RM211) monthly, as little as one-tenth of what she would expect to pay their makers for full treatment. The drugs — glucagon-like peptide-1 (GLP-1) weight-loss medicines — are manufactured and shipped from China, according to the packaging. She orders them through online vendors. Spencer belongs to a fast-growing group of Americans turning to what many call the 'grey market' for obesity medicines, bringing cheap active ingredients from China often labelled as for research purposes, according to import data and social media postings. It's a trend that drugmakers Lilly and Novo Nordisk, which makes Wegovy, say is dangerous as well as illicit. Reuters tracked online forums and interviewed seven people who said they bought obesity medicines through this market, including an attorney in Arizona who works for a state insurance agency, a retired nurse in Illinois and a Type 1 diabetic in Louisiana, who said the medicine helped cut her insulin intake by more than half. For more than a year there has been demand for cheap Chinese-made powders, exacerbated by limited health insurance coverage in the US Buyers told Reuters the grey market received a boost from an FDA ruling last year that US compounding pharmacies — outsourcing facilities that create drugs in shortage — must stop selling obesity medicines more cheaply than the companies that developed them. Shipments of such active ingredients from Chinese entities not registered with the FDA jumped by 44 per cent in January from the previous month, according to research by the Partnership for Safe Medicines, a public health group focused on the safety of prescription drugs. It said its findings are likely an undercount, because unregistered vendors may not disclose that their parcels contain medicines. Packages valued at less than US$800 that enter the US under the de minimis rule are not included in the data. Amy Spencer holds a number of vials containing components of obesity drugs, which were purchased through the grey market, a new market for obesity drugs that allows consumers to purchase medication materials from China and reconstitute them into injectable drugs, at her home in southern Missouri April 24, 2025. — Reuters pic Nearly three-quarters of US adults are overweight or obese, according to government estimates, but a survey by nonprofit health policy research organisation KFF found only about 8 per cent say they have taken medicine for weight loss. Most of the grey market buyers Reuters interviewed had told their medical providers they were taking GLP-1 medicines but not where or how they bought them. Insurance coverage for weight-loss drugs has recently increased, but typically only covers branded versions, according to consulting firm Mercer. Many Americans have paid out of pocket for cheaper compounded drugs. Interest in taking small doses of the drugs has also spurred the online marketplace, buyers said. Taking to platforms including Reddit and Telegram for guidance, buyers import small quantities, often described as research materials to sidestep regulatory scrutiny. They swap advice for navigating the market, exchanging information on vendors, shipping and dosage, and sometimes clubbing together to cover the cost of testing the powders. One forum is called StairwayToGray. It has more than 21,000 members on Telegram and recently was gaining nearly 1,000 members weekly. It did not respond to Reuters' inquiries, and blocked access to the forum after receiving them. It has a website where it says it does not facilitate group purchases. 'This community is filling the gaps and being our own regulators, ensuring testing and access for everyone who needs it. Because you shouldn't have to choose between your health or your wallet,' it says. Spencer stores her stocks in her fridge and makes them up in the kitchen — carefully measuring sterile water, rolling the vial between her fingers until the powder dissolves, and drawing the liquid into a syringe before injecting it into her thigh or belly. She has lost 24 pounds. 'This is working so well for me. It's so easy. It's cheap,' said Spencer, who assumes her health plan wouldn't cover the drugs. 'I don't know what I would do without this medicine.' Amy Spencer poses for a portrait in a beveled bathroom mirror while holding a syringe and a vial that contained the components of obesity drugs, which she purchased through the grey market, a new market that allows consumers to purchase obesity medication materials from China and reconstitute them into injectable drugs, at her home in southern Missouri April 24, 2025. — Reuters pic 'Very dangerous' In February, 38 US state and territory attorney generals wrote the FDA seeking action against illegally sold weight-loss medicines, including 'research purposes only' ingredients from China. 'Much like with counterfeit versions, these active ingredients come from unregulated, undisclosed sources... and pose risks of contamination and inclusion of foreign substances,' they said. Shabbir Safdar, executive director of the Partnership for Safe Medicines, said unapproved drugs can have problems with sterility, purity and consistency. 'It can be very dangerous. You're playing the role of your own doctor, pharmacist, and FDA inspector,' he said. Of those interviewed, only Spencer reported any problems: She once got her math wrong and overdosed, resulting in several days of severe flu-like symptoms. Lilly said it had taken many steps to address patient safety risks posed by the proliferation of unsafe or untested tirzepatide. The company said it is filing lawsuits, educating consumers and working with social media companies to identify and remove posts that promote unsafe products, including those described as 'research use only.' 'We will continue to take action to stop those who threaten patient safety and urgently call on regulators and law enforcement to do the same,' a Lilly spokesperson told Reuters. Novo Nordisk also said it continues to take action against entities that violate laws and regulations and put patient safety at risk. America's Poison Control agency, which maintains the nation's poison data surveillance system and monitors GLP-1 exposures, said it could not reliably track cases involving unregulated 'research chemical powders' because they are sold under various names and formulations. The FDA's goal is to stop illegal sales of pharmaceutical medicines at the border, said George Karavetsos, former director of the FDA's Office of Criminal Investigations and co-author of the imports study. But understanding the true nature and intended use of small parcels arriving from China can be difficult, and the FDA rarely seeks charges against consumers for personal use, he said. The FDA said it urges consumers to buy from licensed pharmacies and 'avoid products of unknown quality,' adding it was actively protecting consumers by intercepting illegal products at ports, and warning companies that market unapproved weight-loss medicines, including those mislabelled as 'for research purposes.' Although the forums show suppliers purportedly in China, Reuters was not able to verify where the drugs originate. None of the vendors responded to requests for comment. A Reddit spokesperson said the site prohibits facilitating transactions involving drugs and it had shut down a group found to be doing this. Telegram said it removes 'more than a million' instances of harmful content each day, but did not comment directly. Amy Spencer injects herself with obesity medication, which she purchased through the grey market, a new market for obesity drugs that allows consumers to purchase medication materials from China and reconstitute them into injectable drugs, at her home in southern Missouri April 24, 2025. — Reuters pic Microdose mistake Spencer has polycystic ovary syndrome and for years struggled with weight gain and hypertension. She decided to try obesity medicines after seeing claims on social media that microdosing them could give fewer side effects, and bought semaglutide, the active ingredient in Wegovy, from a compounding pharmacy for about US$200 per month. She started on one-fifth of the lowest dose. Within days, intermittent joint pain she often suffered had dissipated: 'I didn't realise how badly I hurt until the pain was gone.' The cost would reach about US$500 a month if she bought the drug from Novo, which recently introduced one-off discounts. After a week, Spencer said, her blood pressure dropped so low she thought she might pass out, so she stopped taking hypertension medicine. Her pressure stabilised and she lost three pounds. She wanted to understand more about microdosing, and turned to the grey market last summer. On Reddit, users told how another Novo drug in development, called CagriSema, had helped reduce inflammation and hunger pangs better than semaglutide. CagriSema is Novo's next-generation obesity drug candidate, still in clinical trials so not available to the public. It combines semaglutide with another molecule, called cagrilintide, which intensifies the hormone-mimicking effects to regulate blood sugar and reduce hunger. Spencer was intrigued. She found a US reseller saying they tested Chinese-made CagriSema through a third-party lab before selling it to Americans. On microdoses of CagriSema, Spencer could enjoy food in small quantities. 'I could say 'yes' because I knew I was only going to eat four bites.' In October, Spencer saw on Reddit that tirzepatide might also reduce inflammation. She placed a new order for vials that contained cagrilintide and tirzepatide combined, dubbed 'cagri-tirz.' Now each Monday, Spencer injects herself with tiny amounts of cagri-tirz. On Thursdays, she uses retatrutide, a new obesity medicine by Lilly, also in trials. As she was switching to cagri-tirz, Spencer made a dangerous mistake. She calculated her new dosage without realising the concentration of cagrilintide in the combined vials was 10 times higher than she had taken previously. 'I was an idiot. I didn't do my math. Or rather, I did the math for the tirzepatide but not for the cagri,' she said. Almost immediately, she began vomiting. The reaction was so severe she had trouble moving. She forced herself to drink water but couldn't eat. After four days, when symptoms lifted, she had lost seven pounds. Despite the blunder, Spencer didn't consider returning to compounded versions of the drugs or abandoning them altogether. She is not regularly monitored by a healthcare provider, but says her treatment has led to a 'life-changing' reduction in weight, joint pain and blood pressure. Marie, who asked to be identified by her middle name, filters reconstituted obesity medication, which was purchased through the grey market, a new market that allows consumers to purchase obesity medication materials from China and reconstitute them into injectable drugs, in the US Midwest April 28, 2025. — Reuters pic 'Honour system' Grey-market buyer Marie, 41, shows how do-it-yourself drugmakers are organising. She describes herself as a 'football mom' from the Midwest and asked to be identified by her middle name to protect her privacy. Last year she bought a compounding pharmacy's version of tirzepatide, paying about US$470 monthly, and had lost more than 20 pounds when the FDA announced the ban on compounded weight-loss drugs. She began to worry about her supply. Browsing on Reddit, she discovered links to Telegram and a trove of detailed instructions from experienced users for buying weight-loss drug ingredients from China. Customers said they often paid with Bitcoin or through mobile payment service Venmo. After a month closely following the forums, Marie made a purchase in January. The package that arrived contained 20 small glass vials of white powder with red caps. There were no instructions. The vendor who advertised the package on Telegram said it came from China. Marie returned to the forums and joined a group of 52 other customers who paid a total of US$1,020 to a Tennessee-based company called Peptide Test. Six members mailed in a vial each and the others chipped in their share of the fee. The lab found the samples were pure. Peptide Test declined to comment. 'It's an honour system,' said Marie. 'These groups are very supportive in a way I haven't seen on the internet before.' Marie, who asked to be identified by her middle name, stores obesity medication, which was purchased through the grey market, a new market that allows consumers to purchase obesity medication materials from China and reconstitute them into injectable drugs, in a deep freezer, in the US Midwest April 28, 2025. — Reuters pic Before her first injection, Marie gave her husband details of what she had done. They agreed that if needed, he would disclose everything to the emergency medics. But she was fine. In March, Marie volunteered to organise testing a new order of tirzepatide. The group formed on Telegram after users received vials from the same vendor which they judged to be from the same batch based on the colour of the caps. In all, 38 buyers agreed to chip in for the US$1,300 bill, and decided by poll that five vials would be enough. Five people sent drugs to the lab, Janoshik Analytical in the Czech Republic, which found the vials contained tirzepatide, as purported, with purity between 99.78 per cent and 99.85 per cent. Janoshik's CEO, Peter Magic, is a former amateur weight-lifter. He said his company started out more than a decade ago testing performance-enhancing drugs for online buyers. Last year, it tested 3,050 samples of obesity drugs, up from just over 650 samples in 2023. 'We're testing hundreds of these every week,' said Magic, whose company helps customers navigate customs requirements for shipping chemicals. — Reuters
Kuwait Times
28-06-2025
- Health
- Kuwait Times
Stung by high prices, Americans make their own weight-loss drugs
SAN FRANCISCO: In what she calls the 'wild west' of obesity medicines, Missouri-based Amy Spencer is a pioneer. Each week the mother of two injects herself with weight-loss drugs, two of which are in clinical trials and not yet approved for sale by the US Food and Drug Administration. One comes mixed with tirzepatide, the active ingredient in Eli Lilly's Zepbound. Spencer, 50, is not part of any drug trial but mixes the cocktails herself, using tiny doses that she believes are safe. The total cost is about $50 monthly, as little as one-tenth of what she would expect to pay their makers for full treatment. The drugs – glucagon-like peptide-1 (GLP-1) weight-loss medicines – are manufactured and shipped from China, according to the packaging. She orders them through online vendors. Spencer belongs to a fast-growing group of Americans turning to what many call the 'gray market' for obesity medicines, bringing cheap active ingredients from China often labeled as for research purposes, according to import data and social media postings. It's a trend that drugmakers Lilly and Novo Nordisk, which makes Wegovy, say is dangerous as well as illicit. Reuters tracked online forums and interviewed seven people who said they bought obesity medicines through this market, including an attorney in Arizona who works for a state insurance agency, a retired nurse in Illinois and a Type 1 diabetic in Louisiana, who said the medicine helped cut her insulin intake by more than half. For more than a year there has been demand for cheap Chinese-made powders, exacerbated by limited health insurance coverage in the US. Buyers told Reuters the gray market received a boost from an FDA ruling last year that US compounding pharmacies – outsourcing facilities that create drugs in shortage – must stop selling obesity medicines more cheaply than the companies that developed them. Shipments of such active ingredients from Chinese entities not registered with the FDA jumped by 44 percent in January from the previous month, according to research by the Partnership for Safe Medicines, a public health group focused on the safety of prescription drugs. It said its findings are likely an undercount, because unregistered vendors may not disclose that their parcels contain medicines. Packages valued at less than $800 that enter the US under the de minimis rule are not included in the data. Nearly three-quarters of US adults are overweight or obese, according to government estimates, but a survey by nonprofit health policy research organization KFF found only about 8 percent say they have taken medicine for weight loss. Most of the gray market buyers Reuters interviewed had told their medical providers they were taking GLP-1 medicines but not where or how they bought them. Insurance coverage for weight-loss drugs has recently increased, but typically only covers branded versions, according to consulting firm Mercer. Many Americans have paid out of pocket for cheaper compounded drugs. Interest in taking small doses of the drugs has also spurred the online marketplace, buyers said. Taking to platforms including Reddit and Telegram for guidance, buyers import small quantities, often described as research materials to sidestep regulatory scrutiny. They swap advice for navigating the market, exchanging information on vendors, shipping and dosage, and sometimes clubbing together to cover the cost of testing the powders. One forum is called StairwayToGray. It has more than 21,000 members on Telegram and recently was gaining nearly 1,000 members weekly. It did not respond to Reuters' inquiries, and blocked access to the forum after receiving them. It has a website where it says it does not facilitate group purchases. 'This community is filling the gaps and being our own regulators, ensuring testing and access for everyone who needs it. Because you shouldn't have to choose between your health or your wallet,' it says. Spencer stores her stocks in her fridge and makes them up in the kitchen – carefully measuring sterile water, rolling the vial between her fingers until the powder dissolves, and drawing the liquid into a syringe before injecting it into her thigh or belly. She has lost 24 pounds. 'This is working so well for me. It's so easy. It's cheap,' said Spencer, who assumes her health plan wouldn't cover the drugs. 'I don't know what I would do without this medicine.' Very dangerous In February, 38 US state and territory attorney generals wrote the FDA seeking action against illegally sold weight-loss medicines, including 'research purposes only' ingredients from China. 'Much like with counterfeit versions, these active ingredients come from unregulated, undisclosed sources ... and pose risks of contamination and inclusion of foreign substances,' they said. Shabbir Safdar, executive director of the Partnership for Safe Medicines, said unapproved drugs can have problems with sterility, purity and consistency. 'It can be very dangerous. You're playing the role of your own doctor, pharmacist, and FDA inspector,' he said. Of those interviewed, only Spencer reported any problems: She once got her math wrong and overdosed, resulting in several days of severe flu-like symptoms. Lilly said it had taken many steps to address patient safety risks posed by the proliferation of unsafe or untested tirzepatide. The company said it is filing lawsuits, educating consumers and working with social media companies to identify and remove posts that promote unsafe products, including those described as 'research use only'. 'We will continue to take action to stop those who threaten patient safety and urgently call on regulators and law enforcement to do the same,' a Lilly spokesperson told Reuters. Novo Nordisk also said it continues to take action against entities that violate laws and regulations and put patient safety at risk. America's Poison Control agency, which maintains the nation's poison data surveillance system and monitors GLP-1 exposures, said it could not reliably track cases involving unregulated 'research chemical powders' because they are sold under various names and formulations. The FDA's goal is to stop illegal sales of pharmaceutical medicines at the border, said George Karavetsos, former director of the FDA's Office of Criminal Investigations and co-author of the imports study. But understanding the true nature and intended use of small parcels arriving from China can be difficult, and the FDA rarely seeks charges against consumers for personal use, he said. — Reuters The FDA said it urges consumers to buy from licensed pharmacies and 'avoid products of unknown quality,' adding it was actively protecting consumers by intercepting illegal products at ports, and warning companies that market unapproved weight-loss medicines, including those mislabeled as 'for research purposes.' Although the forums show suppliers purportedly in China, Reuters was not able to verify where the drugs originate. A Reddit spokesperson said the site prohibits facilitating transactions involving drugs and regularly shuts down groups found to be doing this. Telegram said it removes 'more than a million' instances of harmful content each day, but did not comment directly. Microdose mistake Spencer has polycystic ovary syndrome and for years struggled with weight gain and hypertension. She decided to try obesity medicines after seeing claims on social media that microdosing them could give fewer side effects, and bought semaglutide, the active ingredient in Wegovy, from a compounding pharmacy for about $200 per month. She started on one-fifth of the lowest dose. Within days, intermittent joint pain she often suffered had dissipated: 'I didn't realize how badly I hurt until the pain was gone.' The cost would reach about $500 a month if she bought the drug from Novo, which recently introduced one-off discounts. After a week, Spencer said, her blood pressure dropped so low she thought she might pass out, so she stopped taking hypertension medicine. Her pressure stabilized and she lost three pounds. She wanted to understand more about microdosing, and turned to the gray market last summer. On Reddit, users told how another Novo drug in development, called CagriSema, had helped reduce inflammation and hunger pangs better than semaglutide. CagriSema is Novo's next-generation obesity drug candidate, still in clinical trials so not available to the public. It combines semaglutide with another molecule, called cagrilintide, which intensifies the hormone-mimicking effects to regulate blood sugar and reduce hunger. Spencer was intrigued. She found a US reseller saying they tested Chinese-made CagriSema through a third-party lab before selling it to Americans. On microdoses of CagriSema, Spencer could enjoy food in small quantities. 'I could say 'yes' because I knew I was only going to eat four bites.' In October, Spencer saw on Reddit that tirzepatide might also reduce inflammation. She placed a new order for vials that contained cagrilintide and tirzepatide combined, dubbed 'cagri-tirz.' Now each Monday, Spencer injects herself with tiny amounts of cagri-tirz. On Thursdays, she uses retatrutide, a new obesity medicine by Lilly, also in trials. As she was switching to cagri-tirz, Spencer made a dangerous mistake. She calculated her new dosage without realizing the concentration of cagrilintide in the combined vials was 10 times higher than she had taken previously. 'I was an idiot. I didn't do my math. Or rather, I did the math for the tirzepatide but not for the cagri,' she said. Almost immediately, she began vomiting. The reaction was so severe she had trouble moving. She forced herself to drink water but couldn't eat. After four days, when symptoms lifted, she had lost seven pounds. Despite the blunder, Spencer didn't consider returning to compounded versions of the drugs or abandoning them altogether. She is not regularly monitored by a healthcare provider, but says her treatment has led to a 'life-changing' reduction in weight, joint pain and blood pressure. 'Honor system' Gray-market buyer Marie, 41, shows how do-it-yourself drugmakers are organizing. She describes herself as a 'soccer mom' from the Midwest and asked to be identified by her middle name to protect her privacy. Last year she bought a compounding pharmacy's version of tirzepatide, paying about $470 monthly, and had lost more than 20 pounds when the FDA announced the ban on compounded weight-loss drugs. She began to worry about her supply. Browsing on Reddit, she discovered links to Telegram and a trove of detailed instructions from experienced users for buying weight-loss drug ingredients from China. Customers said they often paid with Bitcoin or through mobile payment service Venmo. After a month closely following the forums, Marie made a purchase in January. The package that arrived contained 20 small glass vials of white powder with red caps. There were no instructions. The vendor who advertised the package on Telegram said it came from China. Marie returned to the forums and joined a group of 52 other customers who paid a total of $1,020 to a Tennessee-based company called Peptide Test. Six members mailed in a vial each and the others chipped in their share of the fee. The lab found the samples were pure. Peptide Test declined to comment. 'It's an honor system,' said Marie. 'These groups are very supportive in a way I haven't seen on the internet before.' Before her first injection, Marie gave her husband details of what she had done. They agreed that if needed, he would disclose everything to the emergency medics. But she was fine. In March, Marie volunteered to organize testing a new order of tirzepatide. The group formed on Telegram after users received vials from the same vendor which they judged to be from the same batch based on the color of the caps. In all, 38 buyers agreed to chip in for the $1,300 bill, and decided by poll that five vials would be enough. Five people sent drugs to the lab, Janoshik Analytical in the Czech Republic, which found the vials contained tirzepatide, as purported, with purity between 99.78 percent and 99.85 percent. Janoshik's CEO, Peter Magic, is a former amateur weight-lifter. He said his company started out more than a decade ago testing performance-enhancing drugs for online buyers. Last year, it tested 3,050 samples of obesity drugs, up from just over 650 samples in 2023. 'We're testing hundreds of these every week,' said Magic, whose company helps customers navigate customs requirements for shipping chemicals. — Reuters
Zawya
27-06-2025
- Health
- Zawya
Stung by high prices, Americans make their own weight-loss drugs
In what she calls the "wild west" of obesity medicines, Missouri-based Amy Spencer is a pioneer. Each week the mother of two injects herself with weight-loss drugs, two of which are in clinical trials and not yet approved for sale by the U.S. Food and Drug Administration. One comes mixed with tirzepatide, the active ingredient in Eli Lilly's Zepbound. Spencer, 50, is not part of any drug trial but mixes the cocktails herself, using tiny doses that she believes are safe. The total cost is about $50 monthly, as little as one-tenth of what she would expect to pay their makers for full treatment. The drugs – glucagon-like peptide-1 (GLP-1) weight-loss medicines – are manufactured and shipped from China, according to the packaging. She orders them through online vendors. Spencer belongs to a fast-growing group of Americans turning to what many call the "gray market" for obesity medicines, bringing cheap active ingredients from China often labeled as for research purposes, according to import data and social media postings. It's a trend that drugmakers Lilly and Novo Nordisk, which makes Wegovy, say is dangerous as well as illicit. Reuters tracked online forums and interviewed seven people who said they bought obesity medicines through this market, including an attorney in Arizona who works for a state insurance agency, a retired nurse in Illinois and a Type 1 diabetic in Louisiana, who said the medicine helped cut her insulin intake by more than half. For more than a year there has been demand for cheap Chinese-made powders, exacerbated by limited health insurance coverage in the U.S. Buyers told Reuters the gray market received a boost from an FDA ruling last year that U.S. compounding pharmacies – outsourcing facilities that create drugs in shortage – must stop selling obesity medicines more cheaply than the companies that developed them. Shipments of such active ingredients from Chinese entities not registered with the FDA jumped by 44% in January from the previous month, according to research by the Partnership for Safe Medicines, a public health group focused on the safety of prescription drugs. It said its findings are likely an undercount, because unregistered vendors may not disclose that their parcels contain medicines. Packages valued at less than $800 that enter the U.S. under the de minimis rule are not included in the data. Nearly three-quarters of U.S. adults are overweight or obese, according to government estimates, but a survey by nonprofit health policy research organization KFF found only about 8% say they have taken medicine for weight loss. Most of the gray market buyers Reuters interviewed had told their medical providers they were taking GLP-1 medicines but not where or how they bought them. Insurance coverage for weight-loss drugs has recently increased, but typically only covers branded versions, according to consulting firm Mercer. Many Americans have paid out of pocket for cheaper compounded drugs. Interest in taking small doses of the drugs has also spurred the online marketplace, buyers said. Taking to platforms including Reddit and Telegram for guidance, buyers import small quantities, often described as research materials to sidestep regulatory scrutiny. They swap advice for navigating the market, exchanging information on vendors, shipping and dosage, and sometimes clubbing together to cover the cost of testing the powders. One forum is called StairwayToGray. It has more than 21,000 members on Telegram and recently was gaining nearly 1,000 members weekly. It did not respond to Reuters' inquiries, and blocked access to the forum after receiving them. It has a website where it says it does not facilitate group purchases. "This community is filling the gaps and being our own regulators, ensuring testing and access for everyone who needs it. Because you shouldn't have to choose between your health or your wallet," it says. Spencer stores her stocks in her fridge and makes them up in the kitchen – carefully measuring sterile water, rolling the vial between her fingers until the powder dissolves, and drawing the liquid into a syringe before injecting it into her thigh or belly. She has lost 24 pounds. "This is working so well for me. It's so easy. It's cheap," said Spencer, who assumes her health plan wouldn't cover the drugs. "I don't know what I would do without this medicine." "VERY DANGEROUS" In February, 38 U.S. state and territory attorney generals wrote the FDA seeking action against illegally sold weight-loss medicines, including "research purposes only" ingredients from China. "Much like with counterfeit versions, these active ingredients come from unregulated, undisclosed sources ... and pose risks of contamination and inclusion of foreign substances," they said. Shabbir Safdar, executive director of the Partnership for Safe Medicines, said unapproved drugs can have problems with sterility, purity and consistency. "It can be very dangerous. You're playing the role of your own doctor, pharmacist, and FDA inspector," he said. Of those interviewed, only Spencer reported any problems: She once got her math wrong and overdosed, resulting in several days of severe flu-like symptoms. Lilly said it had taken many steps to address patient safety risks posed by the proliferation of unsafe or untested tirzepatide. The company said it is filing lawsuits, educating consumers and working with social media companies to identify and remove posts that promote unsafe products, including those described as "research use only." "We will continue to take action to stop those who threaten patient safety and urgently call on regulators and law enforcement to do the same," a Lilly spokesperson told Reuters. Novo Nordisk also said it continues to take action against entities that violate laws and regulations and put patient safety at risk. America's Poison Control agency, which maintains the nation's poison data surveillance system and monitors GLP-1 exposures, said it could not reliably track cases involving unregulated "research chemical powders" because they are sold under various names and formulations. The FDA's goal is to stop illegal sales of pharmaceutical medicines at the border, said George Karavetsos, former director of the FDA's Office of Criminal Investigations and co-author of the imports study. But understanding the true nature and intended use of small parcels arriving from China can be difficult, and the FDA rarely seeks charges against consumers for personal use, he said. The FDA said it urges consumers to buy from licensed pharmacies and "avoid products of unknown quality," adding it was actively protecting consumers by intercepting illegal products at ports, and warning companies that market unapproved weight-loss medicines, including those mislabeled as "for research purposes." Although the forums show suppliers purportedly in China, Reuters was not able to verify where the drugs originate. None of the vendors responded to requests for comment. A Reddit spokesperson said the site prohibits facilitating transactions involving drugs and it had shut down a group found to be doing this. Telegram said it removes "more than a million" instances of harmful content each day, but did not comment directly. MICRODOSE MISTAKE Spencer has polycystic ovary syndrome and for years struggled with weight gain and hypertension. She decided to try obesity medicines after seeing claims on social media that microdosing them could give fewer side effects, and bought semaglutide, the active ingredient in Wegovy, from a compounding pharmacy for about $200 per month. She started on one-fifth of the lowest dose. Within days, intermittent joint pain she often suffered had dissipated: "I didn't realize how badly I hurt until the pain was gone." The cost would reach about $500 a month if she bought the drug from Novo, which recently introduced one-off discounts. After a week, Spencer said, her blood pressure dropped so low she thought she might pass out, so she stopped taking hypertension medicine. Her pressure stabilized and she lost three pounds. She wanted to understand more about microdosing, and turned to the gray market last summer. On Reddit, users told how another Novo drug in development, called CagriSema, had helped reduce inflammation and hunger pangs better than semaglutide. CagriSema is Novo's next-generation obesity drug candidate, still in clinical trials so not available to the public. It combines semaglutide with another molecule, called cagrilintide, which intensifies the hormone-mimicking effects to regulate blood sugar and reduce hunger. Spencer was intrigued. She found a U.S. reseller saying they tested Chinese-made CagriSema through a third-party lab before selling it to Americans. On microdoses of CagriSema, Spencer could enjoy food in small quantities. "I could say 'yes' because I knew I was only going to eat four bites." In October, Spencer saw on Reddit that tirzepatide might also reduce inflammation. She placed a new order for vials that contained cagrilintide and tirzepatide combined, dubbed "cagri-tirz." Now each Monday, Spencer injects herself with tiny amounts of cagri-tirz. On Thursdays, she uses retatrutide, a new obesity medicine by Lilly, also in trials. As she was switching to cagri-tirz, Spencer made a dangerous mistake. She calculated her new dosage without realizing the concentration of cagrilintide in the combined vials was 10 times higher than she had taken previously. "I was an idiot. I didn't do my math. Or rather, I did the math for the tirzepatide but not for the cagri," she said. Almost immediately, she began vomiting. The reaction was so severe she had trouble moving. She forced herself to drink water but couldn't eat. After four days, when symptoms lifted, she had lost seven pounds. Despite the blunder, Spencer didn't consider returning to compounded versions of the drugs or abandoning them altogether. She is not regularly monitored by a healthcare provider, but says her treatment has led to a "life-changing" reduction in weight, joint pain and blood pressure. "HONOR SYSTEM" Gray-market buyer Marie, 41, shows how do-it-yourself drugmakers are organizing. She describes herself as a "soccer mom" from the Midwest and asked to be identified by her middle name to protect her privacy. Last year she bought a compounding pharmacy's version of tirzepatide, paying about $470 monthly, and had lost more than 20 pounds when the FDA announced the ban on compounded weight-loss drugs. She began to worry about her supply. Browsing on Reddit, she discovered links to Telegram and a trove of detailed instructions from experienced users for buying weight-loss drug ingredients from China. Customers said they often paid with Bitcoin or through mobile payment service Venmo. After a month closely following the forums, Marie made a purchase in January. The package that arrived contained 20 small glass vials of white powder with red caps. There were no instructions. The vendor who advertised the package on Telegram said it came from China. Marie returned to the forums and joined a group of 52 other customers who paid a total of $1,020 to a Tennessee-based company called Peptide Test. Six members mailed in a vial each and the others chipped in their share of the fee. The lab found the samples were pure. Peptide Test declined to comment. "It's an honor system," said Marie. "These groups are very supportive in a way I haven't seen on the internet before." Before her first injection, Marie gave her husband details of what she had done. They agreed that if needed, he would disclose everything to the emergency medics. But she was fine. In March, Marie volunteered to organize testing a new order of tirzepatide. The group formed on Telegram after users received vials from the same vendor which they judged to be from the same batch based on the color of the caps. In all, 38 buyers agreed to chip in for the $1,300 bill, and decided by poll that five vials would be enough. Five people sent drugs to the lab, Janoshik Analytical in the Czech Republic, which found the vials contained tirzepatide, as purported, with purity between 99.78% and 99.85%. Janoshik's CEO, Peter Magic, is a former amateur weight-lifter. He said his company started out more than a decade ago testing performance-enhancing drugs for online buyers. Last year, it tested 3,050 samples of obesity drugs, up from just over 650 samples in 2023. "We're testing hundreds of these every week," said Magic, whose company helps customers navigate customs requirements for shipping chemicals. (Reporting by Robin Respaut in San Francisco and Maggie Fick in London; additional reporting by Patrick Wingrove in New York; edited by Sara Ledwith and Michele Gershberg)
