Health

(NEW YORK) — In a move welcomed by advocates, a treatment for multi-drug resistant tuberculosis could soon become more accessible for millions of people worldwide.

Although tuberculosis is uncommon in the U.S., it is the top infectious disease killer worldwide after COVID-19, claiming an estimated 1.6 million lives in 2021, according to the World Health Organization.

A life-saving drug called bedaquiline, when used along with other medications, works to kill the bacteria that causes multi-drug resistant tuberculosis (MDR-TB). While the drug’s primary patent was set to expire this week, allowing less-expensive generic versions to be manufactured and distributed, Johnson & Johnson, which makes and markets bedaquiline under the brand name Sirturo, had planned to utilize a secondary patent to extend their control of it until the end of 2027, advocates say.

In a now-viral YouTube video, author and advocate John Green protested Johnson & Johnson’s patent extension on bedaquiline and rallied his 4.5 million Twitter followers to pressure the company to change course.

Amid the Twitter uproar, Stop TB Partnership – a United Nations-hosted organization that works to address tuberculosis worldwide – announced a partnership with the pharma giant to “tender, procure, and supply generic versions of SIRTURO® (bedaquiline) for the majority of low-and middle-income countries, including countries where patents remain in effect.”

Researchers have estimated prices of generic versions of bedaquiline could be up to 94% lower than current costs, with large-scale manufacturing.

The availability of the generic drug could provide six million people with treatment over the next four years, according to Carole Mitnick, Sc.D., a professor of global health and social medicine at Harvard Medical School and a senior research associate at Partners in Health.

While advocates celebrated the news, Johnson & Johnson said the partnership was already in the works prior to the media uproar and that it was “false to suggest” that patents were being used to prevent broader access to bedaquiline.

“We’ve been in lengthy discussions with the Global Drug Facility regarding access to bedaquiline. We had our first meeting with them at the beginning of this year and reached an agreement on June 13,” a Johnson & Johnson spokesperson told ABC News via email.

Pharmaceutical companies often file for patent extensions on their drugs to prevent market competition, a strategy called ‘evergreening.’ However, advocates say this system hinders access to affordable medicines globally, sometimes for many years after a drug is first launched.

“Patents are supposed to last for a limited period of time. After that, competitors should enter the market to drive prices down. But that’s not what’s happening,” said Robin Feldman, professor of law at University of California Law San Francisco. “Instead, drug companies pile new protections onto their drug to extend that protection.”

Patents serve a key role, however, by incentivizing innovation. “Companies fund an extraordinary amount in researching and producing and we want to encourage companies to engage in that research. The patent is a reward for that successful research,” Feldman added.

But Feldman’s research shows that here in the U.S., an estimated 78% of drugs with new patents in the Food and Drug Administration’s records were evergreening extensions for existing drugs.

John Green, who created the YouTube video addressing the bedaquiline issue, told ABC News he was first exposed to the devastation of tuberculosis during a trip to Sierra Leone.

“When I was there, I met a young man who looked to be my son’s age, who looked 9 at the time but was in fact 16 and was just really emaciated, stunted by really severe multi-drug resistant tuberculosis,” said Green.

“Then when I got home, I started to wonder why I didn’t know more about this disease that kills more people than HIV. Kills more people than malaria and war and cholera combined, every year,” he added.

“Despite causing millions of deaths each year and the avail of treatment and vaccines, tuberculosis remains a largely ignored global health issue,” said John Brownstein, Ph.D., ABC News contributor and chief innovation officer at Boston Children’s Hospital.

The disease is much rarer in the U.S. compared to other countries. There were an estimated 8,300 reported cases of tuberculosis in 2022, with rates steadily declining since the early 1990s, according to the Centers for Disease Control and Prevention.

A vaccine exists to protect against tuberculosis and is typically given to young children in countries where the disease is more common. But the vaccine does not always fully protect against infection.

“[Tuberculosis] disproportionately affects people who are most impoverished and most marginalized. It is highly stigmatized and has a lot of overlap with important chronic diseases like HIV and diabetes,” Harvard Medical School’s Carole Mitnick said.

Tuberculosis is curable with antibiotics. However, people in lower-income countries have a higher risk of developing an infection that is resistant to multiple medications.

Nearly 500 thousand new cases of MDR-TB occur each year and only about one in three people with the disease accessed treatment in 2021, according to the World Health Organization. Those infection numbers have been trending upward, which scientists attribute to the impact of the COVID-19 pandemic.

Advocacy groups like Doctors Without Borders and Partners in Health, who for years have been pushing for greater access to tuberculosis medications, called for more action to ensure patients have better access to them.

“We reiterate our call on [Johnson & Johnson] to publicly announce it will not enforce any secondary patents on bedaquiline in any country with a high burden of TB, and withdraw and abandon all pending secondary patent applications for this lifesaving drug,” Doctors Without Borders said in a press release.

In answer to an ABC News request to respond to the Doctors Without Borders statement, Johnson & Johnson said, in part, that it was “deeply committed to patient needs around the world, particularly in providing access to innovation for the most vulnerable populations in low- and middle-income countries,” and highlighted what it said were the company’s “broad access efforts” in providing bedaquiline to those who need it.

“This includes entering into a collaboration in June this year with the Stop TB Partnership’s Global Drug Facility (“GDF”) – the largest procurer of TB medicines – which enables them to invite potential generic suppliers and purchase generic versions of SIRTURO® 100mg,” the statement further declared.

The Johnson & Johnson statement did not specifically address bedaquiline patents and patent applications.

“I think it’s a profoundly unacceptable injustice,” Green said of the overall bedaquiline access issue. “And we need to react appropriately. And to see that over the last few days has been extremely encouraging to me.”

Copyright © 2023, ABC Audio. All rights reserved.

(NEW YORK) — When Ileen Paden’s husband was diagnosed with Parkinson’s disease and began showing signs of dementia, she knew she couldn’t give him the care he needed at home. After 36 years of marriage, Paden stayed in Indiana while Charles went to a nursing home in Dallas, Texas, aided by funding from the Veterans Administration.

“It was very hard to let him go,” Paden said of her husband, Charles. “But I knew I wasn’t doing him any good keeping him here.”

Over Charles’ three years in Texas, Paden visited as often as possible, but she didn’t have much money and was receiving disability benefits herself. As her husband’s condition began to deteriorate, she worried she might not get to see him again.

Then on TikTok, a hospice nurse she followed mentioned the organization Give A Mile, which used donated frequent flyer miles to help arrange flights for people separated from their loved ones. Paden applied immediately. Give A Mile responded within an hour, and in December, Paden, her daughter and her granddaughter flew to Dallas to be with her husband for the last time, she told ABC News.

During the December visit, Paden stayed overnight at Charles’ facility and they talked late into the night. Her granddaughter, who hadn’t seen him since she was a toddler, crawled up onto his bed and gave him a hug. They spent most of their three-day visit at the nursing home, helping out and spending time with him.

“That brought a lot of joy,” said Paden. “I can’t believe they actually had this kind of program because it was perfect. That’s what we needed: to see him one last time.”

Give A Mile also enabled Andrea Bryant to see her mother one last time. During an international trip, Bryant’s mother suffered a pulmonary embolism, leading to her being placed on life support in Istanbul. After lengthy and expensive dealings with the hospital in Turkey through an interpreter, Bryant and her sister arranged an international medical flight to bring her mother home. Her mother’s coworkers at Virginia Mason Medical Center in Seattle, where she worked as a nurse, got the hospital to accept her as a patient.

Bryant was following in mother’s footsteps and going to nursing school, and she had children and grandchildren to support. Through the ordeal, she spent tens of thousands of dollars from her savings to transport her mother back to the United States. She had no idea how she would afford the trip from her home in Houston to see her mother in Seattle for the last time.

One of the instructors at her school told her about Give A Mile. After she applied, Give A Mile quickly approved her application and sent her a flight within 12 hours.

“These people gave me the opportunity to see my mother for the very last time and hold her hand again and be with my sisters at the hospital by her side,” said Bryant. “If it would not have been for them, I don’t know that I would have seen my mom again.”

Give A Mile has made a difference for countless families like Paden’s and Bryant’s. Founded in 2013 by Canadian tech executive Kevin Crowe, Give A Mile is a non-profit organization with the mission of helping people get flights to travel and see their loved ones for the last time before they pass away. To arrange flights, Give A Mile asks for donations of frequent flyer miles or cash.

Crowe formed Give A Mile as a tribute to his friend Ryan, who died from brain cancer at the age of 37. Crowe cared for Ryan in his final months alongside his family, and he witnessed firsthand the value they found in spending time together before he died.

“It’s great to go to Super Bowls and it’s great to go on trips and hit up Vegas,” said Crowe. “But these are the moments of life that are really the prize, the little moments with our children, the people we love, our friends and family.”

After Ryan’s death, Crowe learned that trillions of frequent flyer miles go unused every year and came up with the concept for Give A Mile.

Since then, the organization has provided over 1,000 flights with over 36 million miles donated.

The process of applying for a flight through Give A Mile is simple. The application is short and asks for financial information, personal details and medical verification. From there, a flight review team looks at the application and moves as quickly as possible to approve it and arrange flights.

“We can’t help everybody,” said Crowe. “As applications come in, we assess them based on the resources we have at that moment. … If you meet the criteria, we’re going to do all our best to make that flight happen for you.”

To donate, people can pledge miles for long or short haul flights through major airlines and rewards programs. Give A Mile partners with United and Air Canada, which hold campaigns for the organization throughout the year, where people can donate any amount above 1,000 miles. The organization also accepts cash, which helps with flights to remote areas or when flights can’t be booked with miles.

For Crowe, the founder, a thousand flights and 36 million miles are just the start. He wants to reach a billion miles donated.

And some of the donors who will help him build toward that goal are people the organization has previously helped. After Paden’s husband passed away in Texas, her family decided to pay it forward. In lieu of flowers, they asked for donations to Give A Mile.

Copyright © 2023, ABC Audio. All rights reserved.

(NEW YORK) — Faced with an ongoing labor shortage, some 911 centers are rethinking how to hire and retain workers.

From increasing base pay to fostering a culture that elevates dispatching as a unique profession, industry leaders told ABC News that they hope the changes can help rebuild their workforces following widespread challenges during and after the pandemic.

Between 2019 and 2022, one in four jobs at public safety communications centers were vacant, according to a recent report from the National Association of State 911 Administrators and the International Academies of Emergency Dispatch.

Filling those jobs in a competitive work environment has been difficult, according to Andrew Dameron, Denver’s director of Emergency Communications, who described competing with companies like Uber and Grubhub for employees during and after the pandemic.

The stakes are high for 911 centers facing the ongoing work shortage, according to April Heinze, the 911 operations director for the National Emergency Number Association. Understaffed centers risk burning out their remaining employees, cutting additional services, or leaving callers with increased wait times.

“It’s the difference between life and death. It’s that simple,” Sharon McDonough, director of the 911 dispatch center in Tucson, Arizona, told ABC News about increased wait times due to understaffing. “We don’t know what’s on the other end of that phone, and that person might be dying right in that moment or about to be killed right in that moment.”

Beyond those material harms, Dameron described a broader concern that understaffing causing long wait times could contribute to the breakdown of trust between 911 centers and the communities they serve.

“If your residents lose faith that dialing 911 will enable them to get the help that they need, then you start to erode faith in the entire system,” Dameron said.

When did the staffing shortage peak?

Emergency departments, such as the ones in Denver and Tucson, are primarily staffed by civilians and employ two types of workers. Telecommunicators answer calls placed to 911 and other non-emergency lines while dispatchers communicate with first responders, McDonough said.

In smaller cities and towns, those roles are often handled by the same person and might work within the same building as first responders.

Generally, these positions only only require a high school diploma, passing a background check and training. According to the U.S. Bureau of Labor Statistics, the average pay for the work, which requires 24-hour staffing, averages around $46,670 a year.

“In some situations, individuals make more money at fast food restaurants than they could be serving the public and 911,” Brian Fontes, the CEO of the National Emergency Number Association (NENA), told ABC News.

Moreover, the high-pressure work often puts these professionals at risk of post-traumatic stress disorder, according to experts.

“They got to listen to this person screaming and crying on the phone, they maybe even heard them being assaulted, and then they have no idea what happened next,” McDonough told ABC News. “They have no idea what happened next, so there’s some real moral injury that happens.”

McDonough and Dameron added that the lack of flexibility to work remotely during the pandemic and job opportunities during the “Great Resignation” created a workforce shortage by 2021 as “staggering” numbers of workers left the job. Professionals listed the job’s stress and low wages as the top reasons for leaving the field, according to the NASNA/IAED report.

“I could go work at a GEICO call center and probably make more [with] a whole lot less trauma,” McDonough said.

As workers left the job, the remaining staffers at some call centers began taking on more overtime, creating a “miserable circle” of overworked employees, according to McDonough.

Addressing the workforce shortage

Denver centers have responded to the shortage by increasing the starting salary by 45% since 2020, according to Dameron.

Tucson’s 911 center improved its vacation policy and work schedule flexibility and pursued an intentional cultural shift to respect the profession of emergency telecommunication, McDonough said. For example, rather than displaying posters of first responders, their call center instead uses wall space to display call takers and dispatchers, which McDonough says places more importance on the role of 911 professionals separate from first responders like police and firefighters.

McDonough’s approach to improving the perception of 911 professionals to attract and retain candidates is not uncommon. In June, the Minnesota Department of Public Safety unveiled a new recruiting campaign – “911 Dispatcher: It’s Your Calling” – focusing on the importance of public safety telecommunicators.

“You’re talking to someone as they’re dying, or you’re talking to someone as they’re giving birth,” McDonough said. “These incredible moments bring anxiety and stress, but they’re also really incredibly meaningful.”

Other noticeable improvements include increasing the number of trainees to accommodate for turnover and hiring crisis call takers to handle calls not suited for an armed police response, according to McDonough. On average, she said her call center refers about 1,000 calls monthly to crisis professionals trained in psychology rather than police or fire departments.

What problems remain?

Even under the best of circumstances, these policies take time to work. Denver still has a roughly 27-second wait time, far from the preferred national standard of 15 to 20 seconds set by NENA. Dameron expects an improvement in the wait time once their larger class of new hires, who still need to be fully trained, become cleared for independent work.

Additionally, smaller dispatch centers often need more funding to compete in a competitive labor market or purchase better equipment.

“In the United States, we have haves and have-nots when it comes to funding,” Heinze said about the localized nature of funding for dispatch centers.

While 40% to 60% of departments have the money to deploy next-generation 911 technology — which works better with digital communications like smartphones — poorer departments struggle to work with outdated equipment, according to Heinze.

911 dispatchers and telecommunicators are also classified by the U.S. Bureau of Labor Statistics as clerical or secretarial workers, which limits the mental health and wellness services these workers can obtain, including workers’ compensation, according to Heinze.

“If they experience post-traumatic stress injuries, workman’s comp does not cover 911 professionals because they are not considered part of the protected services classification,” Heinze added.

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(AUSTIN, Texas) — Four women and an OB-GYN are expected to testify at hearings on Wednesday and Thursday as part of a lawsuit filed against the state of Texas over its abortion bans.

The women are some of the 15 individuals party to the lawsuit who have alleged that their lives were put at risk due to Texas’ abortion laws, claiming they were denied livesaving emergency care.

Lawyers representing the women are seeking a preliminary injunction on Texas’ abortion laws that would allow for lifesaving abortions. They are asking the court to provide a “remedy applied to patients whose life, health or fertility is at risk from an emergent medical condition,” Molly Duane, a lead attorney at the Center for Reproductive Rights, said during opening statements Wednesday.

“Tens of thousands of Texans have already been denied abortions. By any measure, Texas is in a health care crisis. The only issue in this case, however, is who should be getting abortions, under the medical exception to the abortion ban and two years later, still, no one knows,” Duane said.

“In the words of the state’s own expert, it is ‘the blind leading the blind on the ground,'” Duane said.

Prosecutors appearing on behalf of the state of Texas claimed the suit was due to dissatisfaction with medical care that the plaintiffs received and that they did not approve of Texas laws.

“Plaintiffs simply do not like Texas’ restrictions on abortion,” Cindy Fletcher, a representative for the state in the lawsuit, said.

Plaintiffs testifying at the hearings include Amanda Zurawski, who developed sepsis and nearly died after being refused an abortion when her water broke at 18 weeks; Ashley Brandt, who was forced to leave the state for abortion care after one of the twins she was carrying was diagnosed with a fatal condition; Samantha Casiano, who was forced to carry a nonviable pregnancy to term and give birth to a baby who died four hours later; Dr. Austin Dennard, an OB-GYN who had to travel out of state to receive abortion care for a nonviable pregnancy; and Dr. Damla Karsan, a Houston-based OB-GYN representing her patients.

‘I went from feeling physically OK to shaking uncontrollably’

In her testimony Wednesday, Zurawski said she went into sepsis after doctors said they could not induce labor because her fetus still had a heartbeat. Zurawski said she was told she had an incompetent cervix, premature dilation of her cervix, and would miscarry.

Her water broke later that evening but she did not miscarry until three days later, she said.

“I went from feeling physically OK to shaking uncontrollably. I was freezing cold even though it was 110 degrees out. My teeth were chattering violently. I couldn’t get a sentence out. My husband Josh asked me how I was feeling on a scale from 1 to 10. I didn’t know the difference between 1 and 10 — which one was higher,” Zurawski said.

“[I was] completely devastated. I’d just been given the worst news of my life, and I was terrified because I didn’t know what was going to happen. Again, this was my first pregnancy. I didn’t know what labor would be like, I didn’t know if I would go into labor. I didn’t know if I’d get sick. It was terrifying,” Zurawski said.

She said she suffered two bouts of sepsis and one of her fallopian tubes has since been permanently closed. Zurawski also needed several procedures to remove scar tissue and reconstruct her uterus after it collapsed.

“I felt like I’d been hit by a truck. It felt like the worst flu I had ever had in my life. I was so sore. Every muscle in my body was so sore that I couldn’t sit up without assistance. I couldn’t roll over. I actually lost control of my bowels and soiled the bed multiple times, which was absolutely humiliating,” Zurawski said.

Zurawski said she did not feel comfortable traveling to receive care elsewhere.

“We looked into it briefly but we quickly learned that I would either have to drive at least eight hours to get to a state where they could provide an abortion or we would have to fly and we didn’t feel like that would be safe, especially since the physician had advised that we not be more than 15 to 20 minutes from a hospital,” Zurawski said during her testimony.

Zurawski — who has done three egg retrievals since going into sepsis — said she still wants to have children and is having difficulty getting pregnant due to complications from developing sepsis.

Texas’ abortion bans

The suit alleged that Texas’ abortion bans have denied the plaintiffs and countless other pregnant people necessary and potentially lifesaving medical care because physicians in the state fear liability, according to the suit.

Texas has several abortion laws in place, prohibiting all abortions after six weeks of pregnancy, except in medical emergencies, which the laws do not define. One of the bans — called SB 8 — prohibits abortions after cardiac activity is detected, which kept several plaintiffs from accessing care despite their pregnancies being nonviable, according to the suit.

Under Texas’ bans, it is a second-degree felony to perform or attempt an abortion, punishable by up to life in prison and a fine of up to $10,000. The law also allows private citizens to sue anyone who “aids or abets” an abortion.

The suit is the first to be filed by women impacted by the abortion bans since the U.S. Supreme Court overturned Roe v. Wade last year, ending federal protections for abortion rights.

The lawsuit is filed against the state of Texas, Attorney General Ken Paxton — who was recently impeached — and the Texas Medical Board. A date has not yet been set for a hearing, according to Duane.

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(NEW YORK) — Drug overdose deaths involving both cocaine and opioids have spiked over the last decade, new federal data suggests.

A new report published early Wednesday by the Centers for Disease Control and Prevention looked at mortality data from the National Vital Statistics System between 2011 and 2021.

Results showed that in 2021, 78.6% of drug overdose deaths involving cocaine also involved an opioid. What’s more, the rate of drug overdose deaths involving both cocaine and opioids was 5.9 per 100,000 deaths in 2021, more than seven times the rate in 2011 of 0.8 per 100,000.

Meanwhile, the rate of drug overdose deaths involving cocaine without opioids did not increase much over the study period, going from 0.7 per 100,000 in 2011 to 2.1 per 100,000 in 2021.

“From 2011 through 2021, the rate of overdose deaths involving both cocaine and opioids increased more quickly than overdose deaths that involved cocaine but no opioids,” the authors wrote in the report.

The report found the percentage of deaths involving cocaine and opioids varied by region. The Northeast had the highest percentage at 84.5% while the West had the lowest at 73.4%.

Researchers also looked at overdose deaths in which opioids were involved along with psychostimulants, which includes drugs such as methamphetamines.

They found the rate of drug overdose deaths involving both psychostimulants and opioids increased 22-fold from 0.3 per 100,000 in 2011 to 6.7 in 2021.

For the first half of the 2010s, the rate of overdose deaths from psychostimulants without opioids was higher but, by 2017, it was surpassed by the rate of psychostimulants with opioids.

Similarly, rates were highest in the Northeast with 80.6% of all overdose deaths involving psychostimulants and opioids, and lowest in the West at 57.5%.

Although the report did not discuss which opioids played a role in the overdose deaths, there has been a rise in drugs laced with the synthetic opioid fentanyl.

Fentanyl is a drug between 50 and 100 times stronger than morphine. State departments and the CDC have warned that drugs including prescription pills, cocaine, and heroin are often laced with fentanyl without users’ knowledge.

According to CDC provisional data, a record-high 108,500 people died from drug overdoses in the U.S.

This increase “highlights the need to ensure people most at risk of overdose can access care, as well as the need to expand prevention and response,” the federal health agency wrote on its website.

This includes making sure the opioid reversal drug naloxone is widely available, expanding awareness about treatment of substance use disorders, early intervention and detection of overdose outbreaks.

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(NEW YORK) — We hear the word collagen a lot when it comes to supplements and skin care, but what is it, exactly?

To answer all of our questions, we turned to Dr. Brandon Richland of Orange County.

What is collagen?

“Collagen is the most abundant protein found in the human body, making up approximately 25-35% of your body’s total protein content. This naturally occurring building block provides structural support to many tissues such as skin, connective tissue, bones, cartilage, muscle, tendons and ligaments,” Richland told ABC News’ Good Morning America.

What are the benefits of collagen?

“Some commonly cited benefits that collagen supplementation may provide may include improved skin elasticity and hydration, reduced wrinkles, expedited wound healing, stronger bones, increased bone density, reduced joint pain and improved nail and hair health,” Richland said.

Are there any risks involved?

“Collagen supplements are generally considered safe,” Richland said, “but risks exist, such as bloating, diarrhea, heartburn, rash, elevated liver tests and allergic response among others.”

Should I be taking a collagen supplement?

“Collagen supplementation may be beneficial to a wide range of patients, such as those who are looking for anti-aging benefits, improved bone strength and reduced joint pain,” Richland said.

What should I look for in a collagen supplement?

“The best forms of collagen supplementation come as hydrolyzed collagen (aka collagen peptides), or as capsules,” Richland said. “You may also want to find a supplement that contains all three major types of collagen, including Type I, and Type III collagen for skin health and Type II collagen for bone/joint support.”

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(NEW YORK) — When Sean Saifa Wall was 13, a doctor recommended to his mother that Wall’s male-typical genitals be removed and that he begin feminizing hormone therapy.

He says his late mother agreed to the surgery and treatment, but Wall adds that his mother picked the wrong gender for him.

“Receiving my medical records and really learning about what happened to me without my thorough informed consent, I think, made me really angry,” Wall, who is now 44, told ABC News.

Wall was born intersex, which encompasses a group of people with genitals, chromosomes, hormones or reproductive organs that are neither clearly male nor female at birth.

Born with partial androgen insensitivity syndrome, or AIS, he had atypical reproductive organs and, like many intersex people, had surgery performed to assign him to one gender over the other without, he says, his consent.

Up to 1.7% of people are born with intersex traits, according to the Office of the United Nations High Commissioner for Human Rights.

Though conservative legislators across the country have introduced or passed bans that limit access to gender-affirming medical care for transgender youth, the bills have explicitly allowed an exception for surgery on intersex minors.

This means surgeries can be performed on babies or young children, but only if they have a medically verifiable condition that doesn’t fit into the typical definitions of “male” or “female.”

Surgeries on intersex children have been condemned by the United Nations, the Human Rights Campaign and intersex activists around the world. However, in the U.S., the federal government has left it up to individual states to create their own laws on gender-affirming care.

Some doctors have defended these surgeries as being an option that should be made available to children and patients. But many intersex patients and advocates say these procedures are medically risky.

“This is not protecting children at all,” said Wall. “We have to acknowledge that what we have done to intersex people, what we have allowed to happen is unjust. And it’s a flagrant violation of bodily autonomy and bodily integrity.”

Wall believes transgender people and intersex youth are being used as cannon fodder in the fight to maintain the gender binary and reinforce heterosexuality as the societal norm.

“Biological sex is not neat at all, right?” he added.

The medical-ethical dilemma

Since the mid-1900s, genital reconstructive surgery has often been seen as a “fix” for intersex conditions to be more cosmetically pleasing and to fit into one gender, experts told ABC News.

This can include removing internal testes and gonad tissue, reducing the clitoris or creating a vaginal canal.

“The history of surgery to ‘fix’ intersex children and to normalize their sex organs is a very contentious one,” Dr. Ilene Wong, a urologist at MidLantic Urology in Pennsylvania, told ABC News. “And most devastatingly is when kids are assigned or switch to a gender that [parents] think is conforming to their chromosomes, when, in fact, later on they have a vastly different gender identity.”

A 2022 study comparing the views specialized physicians have regarding intersex child surgery with the experiences of intersex adults found, “physicians justify surgery on the grounds that they are defending the right of the child to have access to treatments and live as normal a life as possible.”

But Wong said these surgeries can also come with complications, including possibly removing the ability of sexual function and reproductive potential. There is also the risk of pain, nerve damage and scarring, according to research studies.

Wong said a surgery she performed on an intersex teenage patient was her first understanding of the risks these surgeries can carry.

During her first year of residency, Wong said she treated a patient who identified as female and externally looked female but never got her period because, as it turned out, she had internal testes instead of ovaries and a uterus.

The teenager had given her consent to the surgery, but Wong said the patient had not been adequately informed about the risks of her surgery.

“We basically made this 17-year-old girl menopausal and so I had to talk to her about needing hormones and you could tell there’s this blank expression on her face,” Wong said. “She had no idea that this was even a possibility.”

She continued, “So it was representative of the failure of the consent process, and how challenging it is for even for adults or proto-adults or adolescents to really understand the full outcomes, the full potential complications of any surgery.”

Not all doctors are against intersex surgeries, however. When California lawmakers introduced a bill in 2019 calling for a ban on genital surgeries on infants that are not medically necessary, the Societies For Pediatric Urology spoke out against the bill.

“The medical community is not advocating for or against the surgical option,” Dr. Lane Palmer, then-president of the group, said in a statement. at the time. “However, making only one option available and withholding others is not in the best interest of the patient, especially in complex conditions.”

The statement continued, “The decision of what is ‘medically necessary’ is different for each patient. Proposals of a blanket ban on surgery would not only threaten the care of children with intersex conditions by denying access to surgery by erroneously deeming it ‘unnecessary,’ but it would even deny surgery to infants and children without intersex conditions who would be placed inadvertently under an overarching umbrella of legislative proposals. This latter group constitutes the vast majority of patients who would be affected by such bills.”

Intersex surgery exceptions

As anti-transgender legislation has swept the country — with lawmakers in many states preventing minors from undergoing gender-affirming care — carve-outs have been allowed for surgeries on intersex children to continue.

Dr. Arlene Baratz, a Pennsylvania-based physician and medical and research coordinator for InterConnect Support Group for intersex people, said she finds the exception “interesting” considering that most transgender children do not undergo surgery until they are in their late teens and don’t undergo genital surgery until they are age 18 or older.

They also are often required to undergo a psychological evaluation and have to live in the gender they identify with before surgery can be performed.

“The opposite is actually true for intersex children, and they [often] undergo surgery when they’re infants. Again, they’re not old enough to speak, some of them aren’t old enough to walk,” Baratz, the mother of two intersex children, told ABC News. “They know nothing about themselves, we know nothing about them, who they are, what they will like, how they are experiencing their gender.”

She continued, “And so, I think that in order not to make mistakes with this kind of surgery, it should be available to people who want it and it should be available to people who can understand the consequences of it and that it should wait until they’re old enough to be able to decide for themselves.”

ABC News reached out to Do No Harm, a medical conservative organization against transgender health care for minors that helps draft legislation for lawmakers. ABC News also reached out to several lawmakers across several states.

Lawmakers declined or didn’t respond to the request for an interview, as did Do No Harm, which instead sent the statement: “The model legislation was drafted based on scientific evidence and expertise from multiple areas, including pediatrics and pediatric endocrinology.”

The group has said in previous interviews it is opposed to gender-affirming care in part because it ignores “informed consent” from transgender youth, despite calling for surgery exceptions for intersex people with no age or informed consent requirements.

Parents joining the fight against intersex surgeries

Some parents of intersex children say they felt pressured by their doctors to do the medically unnecessary surgeries to make their children “normal.”

“They wanted to do surgery to solidify a female gender and I really pushed back,” said Kristina Turner, the mother of an intersex teenager.

Eric and Stephani Lohman, who wrote the book Raising Rosie about their refusal to give their child surgery, were told their child “had what they called ambiguous genitalia and we should do a surgery before like, as early as possible, before his first birthday, because then he would never know,” Stephani said.

“Certainly, there was an implied secrecy and shame,” she added.

The Lohmans wanted their children to feel comfortable talking to them about gender and sex.

“That created an atmosphere that when [their child] was about 6 or 7, he started saying, ‘I really feel like a boy and I want to get this boy’s haircut, and I want to do all these things that are like what our society typically assigns to male gender,'” Eric said.

Some parents of intersex children criticize legislation that restricts gender-affirming care but includes exceptions for intersex people.

“Trans people are being told, ‘You can’t possibly know anything about your body because you’re way too young’…And then for intersex people, it’s the opposite. The choice of your gender is so important that you can’t possibly wait until you’re old enough to understand,” Stephani said.

Turner said their child’s intersex identity is not causing the most stress; rather, it’s the legislation impacting transgender and intersex youth.

“Nothing about that is hard for them or a struggle, they’re fine with being intersex and who they are,” Turner said. “The only struggles they’re really enduring are the political attacks.”

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(NEW YORK) — Millions of people are dealing with extreme heat waves as climate change continues to raise temperatures to unhealthy levels.

Jeff Goodell, a climate journalist, published a new book The Heat Will Kill You First: Life and Death on a Scorched Planet, that examines how damaging the increased heat waves are for people’s health. Goodell warned that people need to be cautious about their activities during the high heat days.

He spoke with ABC News’ “Start Here” podcast Tuesday about the heat and what can be done to mitigate the damage.

START HERE: Thanks for being with us, Jeff. I’m wondering, like in your mind when we talk about climate change, is heat just by itself, heat the single most affecting part of that whole picture? That’s the thing that actually hits will hit the human race the hardest.

JEFF GOODELL: Well, I think it’s very clear that when it comes to your own health risk and to your own life, heat is by far the most dangerous impact of climate change. Heat kills far more people than drought and wildfires. My previous book was about sea level rise. And, sea level rise is really important because it impacts every coastal city in the world and it’s going to have huge impacts on real estate and flooding and things like that.

But nobody stands on Miami Beach and drowns because of sea level rise. It’s happening over a longer period of time. The thing about heat is that it can kill you very quickly.

But it’s also the larger warming of the planet that is causing the glaciers to melt, is causing the sea level rise that’s drying out the forests that are causing hotter, bigger wildfires. It’s changing the precipitation patterns because of the changes in the atmosphere.

So, it is the large scale driver of all these big changes, and it’s also the micro killer –invisible force that is most deadly to you as a person.

START HERE: Well, and so I’ve been wondering lately, is all temperature change relative? If you’re used to living in 60 degree weather and then at 70 degrees, you’re undergoing the same amount of change that somebody who lives in 95 degree weather and now it’s 105 [degrees] all the time. Is that the same difference or is there a level — is there a threshold at which the air temperature becomes profoundly more dangerous for people?

GOODELL: Well, I mean, there has been some speculation [and] some papers written about this, about what is the sort of human threshold for heat. And there’s the idea of what’s called a wet bulb temperature, which is a measurement kind of like a complicated heat index that was developed by the military that includes sunlight and wind speed and enclosure wearing and everything.

A wet bulb temperature of 95 degrees…you can basically think of it as a sunny, humid day at 95 degrees. If you are out in that for very long and do any kind of exercise or movement around your, you will rapidly head into heat stroke land.

In my book, I write about a farm worker in Oregon who died in the fields because he was afraid if he took shade and water breaks, he would be fired. The thing about these heat waves is that there’s a real kind of justice and equity issue involved here. Not just here in the United States, but there are billions of people on this planet who do not have access to air conditioning and will not have access to air conditioning anytime soon.

The last point about I’ll make about the air conditioning is that it’s a false sense of security because I’m here right now talking to you in Austin and it’s 106 degrees right now. If there were a power failure in Austin right now and that power failure lasted for very long, hundreds, if not thousands of people would die because they would lose air conditioning all of a sudden. We’ve built many of our houses without the ability to open windows.

They are all sealed up very tight, and they become like convection ovens without mechanical air conditioning. So, you know, there’s an inevitability that that kind of power failure is going to happen on a grid in a major American city during one of these heat waves.

START HERE: Well, and in fact, you’ve described your book is like it’s not just doomerism, it’s a survival guide for this new era that we’re all inhabiting right now. I mean, if we’re looking for survival tips. And I’m serious, are there practical things that we should be doing? Not just like write your congressmen and like try to get less CO2. Like, are there things we should be doing preparing ourselves for to get by in a much hotter, hotter world?

GOODELL: Well, again, just to stress the obvious and to repeat the obvious, cutting fossil fuel emissions as quickly as possible is the first order of business in any kind of thinking about what to do about extreme heat. But, on a more practical level, it’s, you know, getting smart about the risks of heat.

I didn’t understand the risk before I started writing this book, even though I have been writing about climate change for almost a decade. I was really dumb about it. I came close to having a heat stroke myself. I didn’t understand what was happening. People don’t understand how dangerous heat is and how and how to deal with it. For example, one of the myths is that if you drink enough water, you’ll be fine. That’s not true.

Water does not in itself cool you off or cools you off. Is it the sweat? And yes, you need to have water in you so you can continue sweating. And if you get dehydrated, you can’t sweat. But there are many stories and I write about them in my book of people who die of heat stroke and have plenty of water. It’s just that they’re in conditions where they’re exercising, hiking, walking, working, whatever, in hot conditions and their bodies overcome by heat.

START HERE: So literally thinking differently about exertion, where you live and what these heat extremes are doing now.

GOODELL: Exactly. And there’s a lot to be done with checking in on vulnerable people. A lot of heat deaths can be easily avoided by better education about heat, about ranking heat waves..so that we know the severity of them because they’re invisible. We don’t see them. They’re not like hurricanes where you can you see the trees bending in half. The risks are very visible. With heat, they’re not.

So we need to get a lot better about messaging about it than the media and government officials, public health officials. There are initiatives underway to try to name heat waves to make it more tangible to people’s imaginations and more identifiable. You know what the risks are. Simple things like, calling relatives, friends, people who you think might be vulnerable and saying, “Hey, it’s going to be really hot tomorrow. Are you set? Is your air conditioning working or if you don’t have air conditioning, do you know where to go?” There’s a lot of just simple things like that that can be done.

START HERE: It’s almost against speaking to your idea of like, these are just like storms, but they’re more invisible. My mom, like, gets like annoyingly, she calls me whenever she thinks there’s a snow flurry on the way. Yes. You want to do that for a huge heat wave. Like that’s the difference.

GOODELL: Right. And the media plays into this. Whenever there’s a heat warnings or whatever they show pictures of people at the beach and they show pictures of kids running through sprinklers and things like that. And there’s this notion that, you know, yeah, it’s going to be warm, but it’s not really dangerous. And, you know, just like put a hat on and put on sunscreen and drink plenty of water and you’ll be fine. Well, you won’t be fine. And it’s much more dangerous than that.

As these temperatures climb and climb and climb, these risks grow faster and faster and they become more urgent. And, I opened my book with the story of a family in California. They went for a hike on a warm day in the California foothills. And the next day they were all found dead on the trail, including their tragically, their one-year-old daughter, because they all had heatstroke.

They knew they were experienced hikers. They understood the risk, but they miscalculated. And those kinds of questions in this kind of education about this is just going to become more and more and more important as we get hotter and hotter and hotter.

START HERE: Yeah. And I keep going back to 95 degrees and humid, being like this moment where the cellularly your body starts to react differently. It was this past Friday that it was 95 degrees and muggy. I went out for what I thought was a healthy bike ride. I hydrated myself really well throughout the day, and yet hours and hours later, my wife is like, You don’t look well. Like, this was bad for your health. That’s the sort of decision making that you think will be changing, whether we like it or not.

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(NEW YORK) — When Angelica Garcia’s high school crush, first love, and father of her two children died unexpectedly, she said, her life went into a free fall. The Los Angeles native said she struggled to cope; within months, she started using marijuana, then cocaine and methamphetamine.

“I didn’t have the tools to deal with my emotions,” Garcia told ABC News. “[So] I started self-medicating.”

Years later, after struggling with homelessness, depression, and addiction, Garcia said she found hope and help through an unlikely source: a peer support specialist.

A peer supporter is someone with the “lived experience” of recovery from mental illness, substance use disorder, or both, according to the Substance and Mental Health Services Administration (SAMHSA). These individuals undergo training and certification that varies by state, but hinges on education aimed at what SAMHSA calls “recovery-oriented” and “person-centered” approaches to care.

Since 2015, when SAMHSA released its initial guidance around mobilizing peer supporters, 49 states have developed peer certification programs; in 40 states, peer supporters – who typically work for independent behavioral health organizations that provide in-person as well as “warm-line” services over the phone – can be reimbursed by Medicaid, according to 2022 data from the Kaiser Family Foundation.

Peers have been shown to offer additional benefits compared with care relying solely on psychologists, psychiatrists, or social workers, SAMHSA says, including reduced rates of substance use and hospitalization. In May, the Biden administration highlighted expanding access to peer support as a key element of its mental health Unity Agenda.

Garcia has been a peer supporter with Project Return Peer Support Network for the past decade and a half. But Garcia says peer supporters like her have largely been excluded from the administration’s major overhaul of the national 988 crisis lifeline. In California, peers were often not included in planning discussions leading up to the hotline’s rollout, Garcia said. Likewise, in other states like Wisconsin, many credentialed peers have not been used to answer hotline calls, advocates say.

That’s coupled with the fact that many crisis centers across the country have struggled to hire enough staff to answer the calls coming in.

In part due to these staffing shortages, crisis centers nationally are missing tens of thousands of calls every month, advocates say. And—while other aspects of 988, such as the over 5 million calls, texts, and chats answered since the hotline’s launch in July 2022, have been a considerable success—the missed calls represent a problem that may lead to worse outcomes, Monica Johnson, 988 directors at SAMHSA, said.

That’s where peer supporters could come in, she said.

States need to “rethink and reimagine who can answer these calls,” Johnson said, “because it opens up a whole new group of people who can be really impactful in this work.”

The Secret Sauce

John Draper, who was the founding director of the pre-988 crisis lifeline, believes the “lived expertise” of peer supporters is their secret sauce.

“Empathy is foremost. That’s not something they teach in school,” Draper said.

According to SAMHSA, care provided by peer supporters leads to reduced rates of psychosis, substance use, depression, and hospitalization. Other federal agencies, like the Centers for Medicare and Medicaid Services and the Department of Justice, have advocated for their use in crisis response.

Some states, like Georgia, have fully leveraged peers, said Johnson.

Ever since, in 1999, the Supreme Court found the state liable for excessive use of psychiatric hospitalizations—and told the state to produce alternatives—peers were “weaved into all [Georgia’s mental health] services,” Johnson, who previously ran the state’s Department of Behavioral Health & Developmental Disabilities, said. This includes during the 988 rollouts, Johnson said: peers have assessed, triaged, and responded to crisis calls since the hotline’s launch.

Other states, though, have not meaningfully involved peers, Tim Saubers, board vice president of the National Association of Peer Supporters, said. For example, in Wisconsin—where Saubers founded the state’s peer support advocacy network—his colleagues have struggled for inclusion since the earliest days of 988, he said.

“From the beginning, [Wisconsin’s Department of Health Services] had no interest in hearing what the peer voice had to say,” Saubers said, referring to the community’s desire to be involved with the 988 response as well as potentially answering calls themselves.

“Peer specialists are incredibly important to our behavioral health continuum and their ideas have played a vital role in 988 planning and implementation,” Jennifer Miller, a spokesperson for the Wisconsin Department of Health Services, wrote in an email. Peers were represented at each of the state’s fifteen planning meetings for 988 between April 2021 and April 2023, she added.

Another barrier peer counselors say they often face is educational requirements. For example, Wisconsin—despite its 30% vacancy rate of 988 call operators—is just one of the states that requires a bachelor’s degree or higher, according to data reviewed by ABC News from state health departments. The bars to fill senior positions are even higher: in Connecticut and West Virginia, managers must have masters’ degrees, in addition to various clinical licenses.

As a result, peer supporters often do not qualify for many call center jobs, Hannah Wesolowski, chief advocacy officer at the National Alliance on Mental Illness (NAMI), said.

“Focusing just on the educational requirement distracts us from a huge part of the population who could fill this opportunity,” Wesolowski said.

Research shows that people with mental illnesses are twice as likely to drop out of high school and college as their peers.

“There’s mounting frustration and resignation that no matter how much we have to offer the existing system is not willing to take us up on it,” Saubers said.

‘We should be at the table’

In June, given that peer certification standards vary state by state, SAMHSA released guidance “to accelerate universal adoption, recognition, and integration of the peer workforce.”

The agency’s recommendations included loosening educational requirements and ensuring that past behaviors—like a history of substance use—don’t disqualify peer supporters.

The guidelines created “standardized ways to go about how to build, certify, and support the peer workforce,” Johnson said. “It feels like a game-changer.”

However, the guidance is not a mandate. So how—and whether—these standards will promote peer support for 988 state-by-state remains an open question, Saubers said.

That ambiguity leaves some people like Garcia frustrated.

California’s Department of Health Care Services “considers individuals with lived experienced [sic] to be a vital component of the behavioral health workforce,” Anthony Cava, a department spokesperson, said in an email. “We look forward to continuing to develop specific opportunities for peer support related to 988.”

For Garcia though, the time in between now and then represents a lost opportunity.

“We should be at the table because [without peers], there’s a big part missing,” Garcia said.

Despite some of the hotline’s challenges, if you or a loved one is struggling with a mental health crisis or considering suicide, call or text 988.

ABC News is looking into challenges and successes with implementation of the 988 Suicide and Crisis Lifeline. If you have had issues or successes with the line, please contact us here.

 

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(ATLANTA) — Emergency department visits involving cannabis increased for children, teens and young adults during the COVID-19 pandemic, new federal data suggests.

A report published Thursday from the Centers for Disease Control and Prevention looked at visits for Americans under 25 years old throughout the pandemic and compared the data to a 2019 baseline.

Researchers found the largest increases in visits were among children aged 10 and younger as well as adolescents between ages 11 and 14.

There was also an increase among older teens and young adults aged 15 to 24. However, cannabis is legal in several states for adults aged 21 and older.

The CDC analyzed data from a weekly average of nearly 1,700 emergency departments that report to the National Syndromic Surveillance Program as well as state and local health departments.

The team expanded its data by searching for other terms that indicated cannabis use such as “smoke weed” or “ingest hash” in the main complaints or discharge paperwork.

Among those aged 10 and under, the average number of weekly cannabis-related ED visits ranged from 30.4 per 10,000 visits to 71.5 per 10,000 visits. Prior to the pandemic, the average was between 18.7 and 23.2 visits.

This age group had their highest number of average visits during summer 2022, the report found. Visits declined during the second half of the 2020-21 school year before increasing thereafter.

For those between ages 11 and 14, the range was between 69.8 and 209.3 compared to a range of 90.5 and 138.5 before the pandemic.

Meanwhile, preteens and teens in this group saw their peak in weekly visits occur during the second half of the 2021–22 school year.

The team noted that the majority of visits during the study period were among 15-to-24-year-olds. Even though rates were elevated from 2020 to summer 2021, they returned to baseline.

However, this was the only age group that did not see statistically significant increases even before the pandemic, as was seen with children and younger teens.

The new report did not discuss why the number of visits went up, noting that there could be different drivers depending on the age group.

A separate report from the National Institute on Drug Abuse at the National Institutes of Health found that young people’s perception of the risk using of cannabis use has declined in recent years.

“Improving clinicians’ awareness of rising cannabis-involved ED visits might aid in early diagnosis of cannabis intoxication among young persons,” the authors wrote in their report. “Further, increasing adults’ knowledge regarding safe cannabis storage practices, strengthening youths’ coping and problem-solving skills through evidence-based prevention programs, and modifying cannabis packaging to decrease appeal to youths might help prevent intentional and unintentional cannabis use.”

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