Health
Drug Company to Share Revenues With Indigenous People Who Donated Their Genes
When Stephane Castel first met with a group of Māori people and other Pacific Islanders in New Zealand to talk about his drug company’s plans for genetic research, locals worried he might be seeking to profit from the genes of community members without much thought to them.
Instead, Dr. Castel and his colleagues explained, they were aiming to strike an unconventional bargain: In exchange for entrusting them with their genetic heritage, participating communities would receive a share of the company’s revenues. Dr. Castel also vowed not to patent any genes — as many other companies had done — but rather the drugs his company developed from the partnership.
“A lot of people told us this was a crazy idea, and it wouldn’t work,” Dr. Castel said. But five years after that first conversation during an Indigenous health research conference in March 2019, Dr. Castel’s gambit is beginning to pay off for both parties.
On Tuesday, his company, Variant Bio, based in Seattle, announced a $50 million collaboration with the drugmaker Novo Nordisk to develop drugs for metabolic disorders, including diabetes and obesity, using data collected from Indigenous populations. Variant Bio will distribute a portion of those funds to the communities it worked with in nine countries or territories, including the Māori, and will seek to make any medicines that result from its work available to those communities at an affordable price.
Experts on Indigenous genetics said the deal was a positive step for a field that has been plagued by accusations of exploitation and a gulf of mistrust.
“In the past, researchers would enter Indigenous communities with empty promises,” said Krystal Tsosie, a geneticist and bioethicist at Arizona State University who runs a nonprofit genetic repository for Indigenous people. “Variant Bio is the only company, to the best of my knowledge, that has explicitly talked about benefit-sharing as part of their mission.”
The concept for Variant Bio was hatched in a Manhattan bar in August 2018 over drinks between Dr. Castel and Kaja Wasik, who had become friends during their graduate studies in genetics at Cold Spring Harbor Laboratory on Long Island.
Though their laboratory research kept them under the glare of fluorescent lights, they shared a zest for international travel, which they indulged during backpacking trips together in Peru and Chile. They dreamed of building a company that could get them to remote places.
At the time, drugmakers were establishing partnerships with biological repositories such as UK Biobank, which contains biological samples and health records from a half-million people living in Britain, in order to hunt for associations between genes and disease.
But these databases are primarily made up of genes from people of European descent.
“What’s the value of sequencing the 500,001st British person?” Dr. Castel said. “There are only so many insights to find by studying the same group of people.”
He and Dr. Wasik were more enthusiastic about recent findings from underrepresented groups, such as the discovery of novel gene variants affecting metabolism that were first identified in Inuit populations in Greenland.
Such variants may be more common, and consequently easier to identify, in historically isolated populations because they confer some functional benefit to people with a certain diet or lifestyle, or simply because of chance events in their history. Yet they can also serve as promising drug targets that will help a wider swath of the global population.
With $16 million in seed funding from Lux Capital, a venture capital firm in New York City, Dr. Castel and Dr. Wasik quit their jobs and began working full-time for their startup. Dr. Wasik hopped across eight countries in Africa, Asia, Europe and the Pacific in the company’s first year, while Dr. Castel, for the most part, dutifully built their software platform from his base in the United States.
They enlisted ethical advisers to develop a benefit-sharing model and went on a listening tour. They knew from the get-go they would have to tread carefully.
In 2007, a member of the Karitiana tribe in Brazil told The New York Times that his community had been “duped, lied to and exploited” by scientists who had collected their blood and DNA, which was later sold for $85 per sample. The tribe members, who said they had been wooed with promises of medicines, received nothing.
Ten years later, there was still no consensus about the optimal way to conduct such work. To protect against so-called biopiracy, many countries ratified the Nagoya Protocol under the United Nations Convention on Biological Diversity, which requires the “equitable sharing of benefits” emerging from genetic resources. But the protocol excluded human genomic information.
During Dr. Castel’s and Dr. Wasik’s trip to New Zealand in 2019, the researchers and community members were troubled by a previous attempt by U.S. researchers to patent a test for obesity risk based on genetic studies carried out in Samoa. The researchers’ universities did not include their Samoan collaborators on their patent application as co-inventors, nor did they have formal benefit-sharing agreements in place with local institutions. (That patent application has since been abandoned, and the researchers said they always intended to share benefits with their partners.)
One of Variant’s first advisers was Keolu Fox, an outspoken geneticist at the University of California, San Diego, who had been harshly critical of the Samoan research.
“This is an extension of all these other forms of colonialism,” said Dr. Fox, who is Native Hawaiian and joined Dr. Wasik and Dr. Castel on their New Zealand outreach trip. He believed that Variant could lead by example.
In the company’s benefit-sharing program, up to 10 percent of a project’s budget goes toward community programs, typically by funding local organizations.
For example, as part of its New Zealand-based study into the genetic causes of kidney disease and other metabolic disorders in the Māori and other people of Pacific ancestry, the company spent $100,000 to fund several local health organizations along with scholarships and scientific conferences for Indigenous people.
“Before Variant came along, we didn’t do that because we couldn’t afford to do so,” said Tony Merriman, a gout expert at the University of Alabama at Birmingham who has collaborated with the company on two projects in the Pacific region.
Dr. Merriman said that he also appreciated that the company ensured that its findings were shared with the community. In French Polynesia, the company’s research has encouraged increased access to a gout medication after concluding that the local population did not have an elevated risk of a fatal drug reaction that had been observed in certain Asian populations.
The new Novo Nordisk deal kicks off a second, longer-term phase of the benefit-sharing program. Communities will share in a 4 percent slice of Variant’s revenue and, if the company is ever sold or goes public, 4 percent of its equity. That percentage is comparable to the royalties that universities receive for licenses to their patents.
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Washington, DC – GLP-1 weight-loss drugs have become a prevalent part of American healthcare, and the current administration is getting behind the movement.
In an exclusive interview with Fox News Digital at the Great American State Fair in the nation’s capital on July 6, CMS Administrator Dr. Mehmet Oz voiced his support for the use of GLP-1 (glucagon-like peptide-1) medications, such as Ozempic, for appropriate uses.
“I’m a fan of GLP-1 drugs when used correctly,” he said. “They do help people who are overweight lose weight quite effectively. They’re not a replacement for diet and exercise, but they might jumpstart the system so it’s easier for you to use healthier tactics.”
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This is especially helpful for those who may have trouble moving due to joint pain or are experiencing internal dysfunction, Oz said.
Certain GLP-1 drugs are covered by Medicare for overweight candidates with certain conditions, such as high blood pressure and diabetes, and Oz projected the benefits will continue to benefit taxpayers.
Dr. Mehmet Oz is pictured in Washington, D.C., at the Great American State Fair, where he spoke about federal health policy. (Angelica Stabile/Fox News Digital)
“We believe these are so effective in reducing conditions like high blood pressure and diabetes that they’ll actually save money for the federal taxpayer, because [they’re] going to make you healthy enough that you don’t have to consume health services,” Oz said.
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“We think about 70% of all the money we spend on healthcare is caused by chronic conditions, and obesity is the No. 1 driver of all that, so it’s a smart decision.”
Oz recently announced the launch of the Medicare GLP-1 Bridge program, which will allow more seniors to access GLP-1 drugs for only $50 a month if they meet qualifying health criteria and receive prior authorization from a doctor.
The doctor expressed support for broadening affordable access to GLP-1 medications for Americans. (iStock)
“There are a lot of overweight people who don’t have high blood pressure, diabetes or other conditions, so they don’t get access to the drug normally,” he said. “We want them to have the ability to use it as well.”
Although these access shifts could boost Americans’ overall health — and in some cases could be lifesaving — Oz noted that there is “no silver bullet” when it comes to these medications.
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“I love the fact that the innovation that’s coming out of pharmaceutical companies is allowing us to save lives and make lives better,” he said. “But the real secret to longevity is eating right, exercising, sleeping, dealing with the stress of your life, finding some purpose in your existence [and] realizing you have agency over the future.”
“These are things that your mom would have told you [and that] you don’t need a doctor to be emphasizing.”
Medicating appropriately, combined with eating right, exercising and staying connected with others, can help make health goals attainable, the doctor said. (iStock)
While GLP-1s may not be a fix-all, combining these medications with foundational health practices “makes a lot of sense,” Oz said.
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“I don’t want people being fat-shamed … I don’t want you feeling guilty that you’re gaining weight even though everyone else around you seems to have figured it out,” he said. “It’s not that simple — our set points for hunger are different. We have different things going on in our lives.”
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“But if you realize how precious you are — the temple of the soul is so valuable. It’s the greatest gift your parents ever gave you, and you take advantage of every tool out there to make it work … which includes using medications when appropriate. That, to me, is MAHA.”
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Amid warnings of a Legionnaires’ disease outbreak on Manhattan’s Upper East Side, health experts say that early recognition of symptoms can mean the difference between a quick recovery and life-threatening complications, especially for high-risk groups.
New York City health officials are urging anyone who has visited the east side of Central Park or Manhattan’s Upper East Side since late June to watch for symptoms.
As of July 6, the New York City Health Department had confirmed 23 cases and 17 hospitalizations associated with the respiratory infection. No deaths have been reported.
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Officials are investigating contaminated cooling towers as the likely source. They have emphasized that the illness is not spread person-to-person and is not linked to the city’s drinking water.
Health experts say that early recognition of symptoms can mean the difference between a quick recovery and life-threatening complications, especially for high-risk groups. (iStock)
“Legionnaires’ disease is deadly but can be effectively treated if diagnosed early,” said NYC Health Commissioner Dr. Alister Martin in a press release. “New Yorkers at higher risk, including anyone who is 50 and older, those who smoke or people with chronic lung conditions should be especially mindful of their symptoms and seek care as soon as symptoms begin.”
What is Legionnaires’?
Legionnaires’ disease is a type of pneumonia caused by Legionella bacteria.
The bacteria is usually found in lakes, streams and other freshwater environments, but can grow in any area where water sits for a long time, according to the CDC.
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That can include shower heads, sink faucets, hot tubs, water features/fountains, plumbing systems and other water systems.
When people swallow or breathe in droplets of water that contain Legionella, they can potentially become ill.
Although human transmission is possible in rare cases, the disease is not typically transmitted among people, per the Centers for Disease Control and Prevention.
Symptoms of infection
Infections can lead to severe pneumonia in older people and those with compromised immune systems, according to Dr. Andrew Handel, a pediatric infectious diseases expert at Stony Brook Children’s Hospital on Long Island, New York.
Symptoms of Legionnaires’ disease usually show up between two and 14 days after exposure.
New York City health officials are urging anyone who has visited the east side of Central Park or Manhattan’s Upper East Side since late June to watch for symptoms. (iStock)
“Legionella infections cause symptoms that are similar to other forms of pneumonia — fever, coughing, difficulty breathing, shortness of breath and chest pain,” Handel previously told Fox News Digital.
“Legionnaires’ disease is deadly but can be effectively treated if diagnosed early.”
The signs are similar to other types of pneumonia, and include the following:
- Cough
- Fever
- Shortness of breath
- Muscle aches and headaches
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Some patients may also experience nausea, diarrhea and confusion, the CDC noted.
Diagnosis, treatment and prevention
A medical professional can diagnose the infection with laboratory tests and chest X-rays.
The condition is typically treated with antibiotics. In cases of severe infection, hospitalization may be required for breathing support and IV hydration.
Around 10% of people who contract Legionnaires’ disease will die from those complications — and the mortality risk rises to 25% for those who get Legionnaires’ while staying in a healthcare facility, according to the CDC.
The bacteria is usually found in lakes, streams and other freshwater environments, but can grow in any area where water sits for a long time, according to the CDC. (iStock)
“Treatment needs to be early and aggressive,” Dr. Nathan Goodyear, an Arizona-based integrative medicine expert, previously told Fox News Digital. “Legionella infection is an intracellular infection that requires antibiotic treatment.”
Antibiotics that are appropriate for Legionella infection include Levofloxacin and Azithromycin.
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“Therapy can be prescribed orally in healthy individuals… but intravenous antibiotics often prove to be the initial option for treatment secondary to the pathogenicity of the disease,” Goodyear said.
Currently, there are no vaccines for Legionnaires’ disease.
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The best strategy to prevent infection is to reduce the growth and spread of the Legionella bacteria. The CDC recommends that building owners and managers use a water management program to reduce the risk.
“New Yorkers at higher risk, including anyone who is 50 and older, those who smoke or people with chronic lung conditions should be especially mindful of their symptoms and seek care as soon as symptoms begin,” city officials stated. (iStock)
To prevent serious illness from Legionnaires’, Goodyear recommends that all smokers kick the habit, and also emphasizes the need to “aggressively support” chronic pulmonary disease.
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“Increasing immune support (vitamin D3, vitamin C, Zinc) is required to counter the immune dysfunction associated with advancing age.”
Obesity is another foundational risk factor for all chronic inflammatory diseases, the doctor added.
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Journalist Katie Couric is sharing a scary medical episode that she experienced on June 27.
In a post on Substack titled “The Day I’ll Never Remember,” she detailed a sudden episode that left her unable to recall the current month, year and president.
“I thought it was 2024. And I believed Joe Biden was president,” she wrote.
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The event occurred while Couric was attending the Aspen Ideas Festival in Colorado, during which she participated in two public panels — one on AI and one on journalism — both of which she cannot remember at all.
“I have no idea what we talked about, or of what occurred when the panels ended,” she said.
Journalist Katie Couric is sharing a scary medical episode that she experienced on June 27. (Getty Images)
John Molner — Couric’s husband, who was in attendance at the festival and the two panels — also shared his account.
After the event, someone told Molner that Katie wasn’t feeling well. When he reached her, an EMT and a doctor were tending to her. “I could tell something was off,” he wrote. “It could have been altitude sickness, but Katie was definitely not all there.”
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At the hospital, when Couric struggled to recall the year, the president and her grandchildren’s names, doctors began checking for a stroke.
An MRI revealed no signs of stroke, which was a relief, but “Katie’s ‘fog’ became a lot more apparent,” Molner wrote.
John Molner, Couric’s husband, who was in attendance at the festival and the two panels, also shared his account. (Getty Images)
“She repeatedly asked me the same questions: ‘What was I doing before we got to the hospital?’ ‘Why am I at the hospital?’”
Couric was ultimately diagnosed with transient global amnesia, a sudden, temporary episode of memory loss that prevents a person from forming new memories and may also erase some recent memories, according to Mayo Clinic.
“The cause seems to be as mysterious as the brain itself.”
It is not caused by a stroke, seizure or head injury, and it usually resolves completely within 24 hours.
“[It’s] just a very weird neural episode that’s pretty uncommon and, at least in most cases, is a ‘one and done’ experience,” Molner said.
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Couric said she finally began feeling “like herself” again around 9 p.m. and went to sleep at 2 a.m.
As TGA leaves a “permanent gap in memory” for the duration of the episode and for hours beforehand, Couric said that from around noon on that day until at least 7 p.m. will remain a “big, black hole.”
As TGA leaves a “permanent gap in memory” for the duration of the episode and for hours beforehand, Couric said that from around noon on that day until at least 7 p.m. will remain a “big, black hole.” (Getty Images)
Data shows that approximately three to eight people per 100,000 will have an episode of transient global amnesia, with people 50 years of age and older at higher risk.
The specific cause of TGA is not known, but some experts believe it stems from a “temporary dysfunction in the brain’s hippocampus — the area responsible for creating new memories,” Couric shared.
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“Doctors believe this is driven by brief interruptions in blood or oxygen flow, or microscopic spasm in the blood vessels.”
Episodes could potentially be triggered by intense physical exertion, emotional distress, extreme temperature changes or migraines, experts say.
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Approximately 15% of patients will have a recurrence 10 years later.
“Why did this happen to me? Was the altitude an issue? Was I dehydrated? Tired? Stressed? The literature doesn’t seem to indicate that these are contributing factors, but the cause seems to be as mysterious as the brain itself,” Couric wrote.
Anyone who experiences sudden memory loss, confusion, difficulty speaking, weakness, numbness, vision changes, severe headache or other stroke-like symptoms should seek immediate medical attention or call 911, doctors advise. (iStock)
“All I know is that those hours will be forever lost. Someone described it as my brain failing to hit the ‘record button.’”
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“While this was a freaky occurrence, it could have been much more serious. So ultimately, I’m relieved — even though several hours of a Saturday in June will always be missing for me.”
Anyone who experiences sudden memory loss, confusion, difficulty speaking, weakness, numbness, vision changes, severe headache or other stroke-like symptoms should seek immediate medical attention or call 911, doctors advise.
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