Edwards, 73, began showing symptoms of the disease in early April, according to the accounts of three inmates who lived with him in a dormitory. He was short of breath, had chest pain and could barely talk. He was also dizzy, sweaty and throwing up.

Edwards was serving a 40-year sentence for attempting to kill someone in 2001. He would have been released to home detention on May 1 but died on April 13. The next day, the Indiana Department of Correction sent out a statement that indicated Edwards’ symptoms came on suddenly: “The offender, a male over the age of 70, who did not have indications of illness, reported experiencing chest pains and trouble breathing on Monday.”

Edwards’ fellow inmates dispute the statement and say he had been seeking medical attention at the prison for days before he died.

Since the start of the pandemic, prisoners and their families have contradicted state officials about the conditions inside Indiana prisons. Many inmates report they’ve had no way to protect themselves from close contact with other inmates and staff members. They believe contracting the disease is inevitable. Indeed, 85% of the prisoners tested at Westville have been positive for the virus. Many of them were housed in the same dorm as Edwards.

As of May 22, at least  had died from confirmed or presumed coronavirus infections, and 650 inmates had tested positive for the virus. And while the state has maintained it isolates men and women with symptoms, inmates say even severely ill prisoners have been left in their dorms until it is too late. Their accounts call into question efforts to contain the virus, along with the care inmates receive once they have it.

“[Edwards] had been sick for approximately about a week and a half,” said one inmate named Josh. Josh allowed a family member to record a call about Edwards, and he asked to be identified only by his first name because he fears retaliation from prison staff.

His fellow prisoners say Edwards couldn’t even make it to see medical staff on his own — they pushed him in a wheelchair. Each time, he was sent back to his quarters.

“Those bastards said I’m fine, I just need to drink water and rest,” Josh recounted Edwards saying. “I’m clearly not fine — I can’t breathe.” Another prisoner wrote in an electronic message to a reporter that Edwards’ room “smelled like sickness and death.”

On the day he died, Josh said Edwards looked pale before he stumbled on his way to the bathroom. A pair of fellow inmates caught him and helped him sit down. “He sounded like he was winded, like he had just ran a marathon,” Josh wrote via the prison system’s electronic communications software. “He was just saying ‘I can’t breathe, I can’t breathe.'” He said an officer called the prison medical staff, who tended to Edwards in the bathroom for about 45 minutes.

“They finally took him out on oxygen,” Josh said. “Next thing we know, five hours later, he died.”

The Westville inmates emphasize that Edwards didn’t wait until that Monday to report his symptoms — he had complained to staff for days. “There is a major problem here with this place and it’s outta control,” wrote Josh.

, chief medical officer for the Indiana Department of Correction, declined to explain the different accounts of his death. “We do not talk about specific cases and patient clinical status,” she said.

Across the nation, at least 415 prisoners had died of the infection as of the week of May 20, and more than 29,000 had tested positive,Ìý.

The American Civil Liberties Union and other advocacy groups have called for the early release of some prisoners, especially the old and sick. Protesters have demonstrated outside Westville and other Indiana prisons to call attention to the conditions inside. Governors in the nearby states of Ìý²¹²Ô»åÌý have ordered some prisoners released, but  has refused. He said it’s up to local judges to decide, on a case-by-case basis.

In the meantime, Dauss said Indiana prisons are taking steps to control the spread of the coronavirus. “We move quickly and, in fact, immediately to separate those who are sick from those who are not sick,” said Dauss.

But according to accounts from numerous inmates, that kind of quick isolation of sick prisoners hasn’t always happened, at least through much of April.

Three different prisoners described another COVID-19 death in a different Indiana prison, the Plainfield Correctional Facility, on April 19. Lonnell Chaney, they said, had been asking for medical help for days.

“He didn’t even know where he was,” one inmate wrote to a reporter. Medical staff had checked on Chaney, who mumbled in response, but left him in the quarters. A prisoner tried to convince officers that the man’s condition was serious — Chaney couldn’t catch his breath — but the officers brushed it off.

The prisoners say Chaney, who was 61, died in his bed in the crowded dorm. “You must be almost dead to get outside help,” wrote the Plainfield inmate.

Six Plainfield prisoners have died during the coronavirus pandemic. The Department of Correction has not released a statement about any of those men. Of 145 Plainfield prisoners tested for the virus, 119 were positive. Forty-five staffers tested positive, as well. Indiana has reported two deaths of prison staffers, as of May 22.

At the Westville prison, Josh said another man in his dorm complained about similar symptoms, and correctional officers wrote the man up for being disruptive.

“Everybody here is terrified,” Josh said.

As the virus spreads, prisoners’ families are . They say prisons refuse to disclose basic information that would put them at ease, including whether an inmate is alive. In Scottie Edwards’ case and others, families didn’t know their loved ones were sick until after they had died — even though a department policy calls for notification when “death may be imminent.”

Crystal Gillispie talked to her father, Lonnell Chaney, for the last time on April 13. Their call lasted five minutes but felt shorter. He told her to send pictures of his grandchildren. And even though the coronavirus had started to spread in his dorm at the Plainfield Correctional Facility, he was more concerned about his family.

“He was like, ‘Just make sure you’re wearing your gloves and masks,'” Gillispie remembered. “I was like, ‘OK, Daddy. You do the same.’ He was so worried about us, and he ended up catching it.”

The next time she heard news of her father, it was from her aunt, his sister: The prison had called her to say Chaney was dead.

Edwards’ sister, Gloria Sam, said her brother was new to Westville prison, because he’d recently requested a transfer to a facility with a law library. He ended up at Westville just before the pandemic started.

“He said, ‘I am afraid of this virus because we’re here close together, and if it comes out, it’ll spread like wildfire,'” she said. Sam hadn’t heard from Edwards in more than a week when her phone rang on April 14. She remembers that even though her caller ID said it was from the State of Indiana, it didn’t occur to her that it was about her brother.

“They said, ‘Well, we have some bad news.’ I thought they were gonna say he was sick,” she said. They told her he had died.

If possible, Sam said, she would have wanted to say goodbye.

“It’s one of the most hurtful things I’ve experienced in my life,” she said.

This story is part of a partnership that includes , , and Kaiser Health News.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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“I can tell you right now, with nearly 100% certainty, that I am going to get this virus,” he wrote. Lisa said Dennis suffers from , which could cause complications if he contracts COVID-19. (KHN agreed to omit their last names because they fear retaliation from prison staff.)

“I just need you to know how sorry I am for not being there … during these scary uncertain times,” Dennis wrote to his wife. He was sent to prison a year ago for theft, driving on a suspended license and resisting arrest. His earliest possible release date is in June 2021.

“If I don’t getta come home, please always know that you are and always will be the love of my life,” he wrote.

Two days later, he told Lisa that for the first time, prison staff took the inmates’ temperatures. Some, including an inmate next to him, had fevers but were still kept in the dorm with dozens of other men.

“He is about 3 ft. from me right now,” Dennis wrote of the man with a fever. He wrote again that night after midnight to tell her the prisoners with fevers had finally been removed.

The Indiana Department of Correction said it is taking measures to prevent the spread of the coronavirus among the nearly housed in the state’s 18 adult and three juvenile facilities — including supplying hand sanitizer to inmates and isolating anyone who exhibits COVID symptoms.

But accounts from inmates and their relatives contradict the agency’s claims. Kaiser Health News and NPR have heard from dozens of people concerned about their family members in prison. We’ve read messages from inmates and heard recorded phone calls with their loved ones. They said prison staff members haven’t taken adequate precautions to prevent the spread of the virus.

Many inmates who exhibit COVID-19 symptoms have been left in crowded quarters, according to these complaints. Inmates don’t have hand sanitizer and were only recently issued face masks.

“That’s illustrative of what’s happening across the country in county jails and departments of corrections,” said of the Brennan Center for Justice in New York.

Thousands of incarcerated people have been infected — in one Ohio prison, 73% of inmates tested positive for the coronavirus — and many have died.

After about 1,300 inmates and guards at a Tennessee prison for the virus, officials in Tennessee said they will test inmates at correctional facilities across the state. Of those who tested positive in the privately run Trousdale Turner Correctional Center, about two dozen were guards. And 98% of the COVID-19-positive inmates and employees had no symptoms at the time of their test, according to the Tennessee Department of Health.

“These are communal spaces, and they really are petri dishes for transmission of diseases such as COVID-19,” said Eisen.

As of April 30, Indiana had reported in correctional facilities. Indiana officials declined to be interviewed for this story and, so far, have not said how many prisoners have been tested. The Department of Correction now its COVID-19 statistics each business day.

Symptoms And Fears Mount

In an April phone call, Dennis told Lisa he was sick. “I’m doing bad. I’m not doing good at all,” he said, according to a recording she made of the call. “My head is splitting.”

Dennis estimated that 15 prisoners had been removed from his dorm, which normally houses more than 80 people. He guessed about half of the remaining prisoners showed some sort of symptoms.

“It scares me so bad,” Lisa said to Dennis.

“It scares me, too,” Dennis replied. “Most of the guys in here are saying, “Well, we all got it. Just some of us have symptoms, some of us don’t.'”

“They brought us another bar of soap today,” Dennis said. “Everybody in here thinks, ‘Well, somebody must have died today.'”

The state announced the next day that a prisoner from the Westville Correctional Facility had died. He tested positive for COVID-19.

Prisoners Say They Can’t Protect Themselves

Other inmates and their family members tell similar stories about the conditions in Indiana prisons. Prisoners in their quarters exhibit symptoms, they said, but the staff isn’t checking on them unless they complain — in some cases, multiple times.

While the disease spreads, prisoners said, they aren’t able to take measures to protect themselves.

A second prisoner at the Plainfield facility told his wife in a recorded call that social distancing is impossible. “At this very moment, I can reach out and touch somebody,” he said. “We’ve got a reason to be scared for our lives,” said the man who was sentenced for a robbery. His earliest possible release date is in 2022.

His wife told KHN her husband tried to make a tent with blankets to protect himself, but a guard told him to take it down.

She said she told her husband: “Absolutely not. This is the only way that you have to even protect yourself.”

Two inmates, one at the Pendleton Correctional Facility and another at the Indiana State Prison, described incidents in which guards jokingly coughed in their direction.

“That’s nothing to play with. It’s my life,” the Pendleton inmate said in a recorded call. He has asthma, he said. Many guards only recently began wearing masks.

put out by the Centers for Disease Control and Prevention, which the state said it follows, stresses the importance of hand sanitizer, social distancing and masks. The Indiana Department of Correction recently released a indicating the agency regularly cleans its facilities, provides hand sanitizer to inmates and encourages social distancing.

Family members who saw the video said it made them angry.

Advocates Push For Limited Prisoner Release

“[Inmates] should not have less opportunity to keep themselves healthy than the general public,” said , the former head of the New York City Department of Correction and the Pennsylvania Department of Corrections.

The U.S. Supreme Court ruled, in a 1976 decision in the case , that to serious medical needs” is unconstitutional.

“They should be making every effort to spread the inmates apart as much as possible to provide for social distancing,” said Horn, who now lectures at the John Jay College of Criminal Justice in New York City.

The ACLU of Indiana, the and other advocates have pushed the state to release certain inmates, such as the oldest or nonviolent offenders.

“It’s necessary to curb the spread of coronavirus behind bars in this country,” said Eisen of the Brennan Center. She pointed out that states such as ,  and New York already have taken such steps in response to the pandemic.

So far, Indiana officials have resisted calls to do so.

“I do not believe in releasing those low-level offenders,” Gov. Eric Holcomb said at a news conference on April 13. “We have got our offenders in a safe place — we believe maybe even safer than just letting them out.”

A week later, three prisoners had died from COVID-19, and the confirmed case count had jumped from 27 to more than 200. Some family members of inmates said that if something happens to their loved ones, they’ll blame Holcomb.

Lisa laughed when she heard the quote from the governor.

“Wow. That’s a big lie,” she said. “They have them herded like cattle, all crammed together, where the virus can just jump from one to the other. There’s no protection.”

“Yes, they committed a crime and they were sentenced,” Lisa said. “But they weren’t sentenced to death.”

This story is part of a partnership that includes Side Effects Public Media,  and Kaiser Health News.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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“I immediately called my mom and said, ‘Mom, is it possible that I have random siblings out there somewhere?'” said Woock, of Indianapolis. She recalled her mom responded, “No, why? That’s ridiculous.”

But the messages continued, and some of them mentioned an Indianapolis fertility practice that she knew her mom had consulted when she had trouble conceiving.

Woock researched and finally learned the truth. Dr. Donald Cline, the fertility doctor her mother saw in 1985, is her biological father.

“I went through an identity crisis,” she said. “I couldn’t look in the mirror and think about, ‘Where did my eyes come from? Where did my hair color come from?’ I didn’t even want to think about any of that.”

Woock hadn’t known that her mom had used artificial insemination to conceive her, and neither of them knew the doctor had used his own sperm.

“We now know Cline used his own sample and squirted it into my mom,” Woock said.

In the 1970s and ’80s, Cline deceived dozens of patients and used his sperm to impregnate them. He has more than 60 biological children — and counting.

For Woock, as the story of her parentage sunk in, it was distressing for another reason: She wanted to start her own family and was having trouble conceiving. And now she needed to turn to the fertility industry that had so badly betrayed her mom.

“We were doing all of the calendaring … everything that is out there to help you get pregnant, we were doing that,” Woock recalled.

But after six months, when she still wasn’t pregnant at 32, she went to a fertility clinic for some tests.

“I had to fill out all this paperwork, and there’s a slot that says kind of like, ‘Is there anything else you’d like to share?’ ” Woock said.

Yes, there most certainly was.

The Odds Of ‘Fertility Fraud’ These Days

New allegations of doctors using their own sperm keep coming to light — because of genetic-testing services like Ancestry revealing networks of half siblings — in states like , Ohio, Colorado and Arkansas.

But those doctors performed artificial inseminations decades ago. Could what happened to Woock’s mom happen in a modern fertility clinic?

Dr. Bob Colver, a fertility specialist in Carmel, Indiana, said it’s a question many of his patients have asked. But it’s unlikely, he said. These days, there are more people involved in the process, and in vitro fertilization happens in a lab, not an exam room.

“Unless you’re in a small clinic where there’s absolutely no checks and balances, I can’t even imagine that today,” Colver said.

It’s now illegal in  for a doctor to use his sperm to impregnate his patients. But there’s no national law criminalizing what’s called “fertility fraud.”

Fertility medicine has advanced a lot since the 1980s, but women trying to get pregnant today with the help of medicine face a baffling array of treatment options that can be hard to navigate and can be hugely expensive. And some critics say the growing, multibillion-dollar fertility industry needs more regulation.

For example, sperm banks may not get accurate medical histories from their donors, who could pass along genetic diseases. And there’s no limit on how many times a donor’s sperm can be used, which some donor children worry could increase the chance of inbreeding. Sperm donation guidelines from organizations like the American Society for Reproductive Medicine are voluntary. There was a contestant on  last year who said his sperm had helped father more than 100 kids.

Unrealistic Expectations

When Woock decided to get her first fertility treatment, she set preconditions with the clinic. She insisted on having a female doctor and insisted that a doctor be in the room for all appointments and oversee everything that happened.

Her experience with her clinic was very different from her mother’s with Cline, but nonetheless there were surprises along the way.

The clinic told her that her problems conceiving could be because of husband Rob’s low sperm count and motility (meaning his sperm weren’t great swimmers). They advised a form of in vitro fertilization that involved injecting one sperm directly into one of her eggs in a petri dish.

When doctors told Woock she needed IVF, she felt pretty optimistic.

“I’m thinking going into this that our chances of success are 70, 75%,” Woock said.

Fertility treatment can be really expensive, and patients may start treatment with unrealistic expectations. That’s because success rates are complicated, and some clinics use only the best numbers in their .

For example, clinics can advertise high fertilization rates. But a 70% fertilization rate doesn’t mean 70% of eggs turn into babies — plenty can go wrong after the lab combines egg and sperm.

Success depends on your age, your clinic and the type of procedure you need. But most of the time, assisted reproduction procedures such as IVF don’t work. The Centers for Disease Control and Prevention, which  in the U.S., reports only about 24% of attempts result in a baby.

‘Add-On’ Technology — And Prices

When Woock started her first IVF cycle, she gave herself shots, a couple a day, to stimulate her ovaries to get multiple eggs ready at once. Multiple eggs means more chances for fertilization.

But the drugs have side effects. They gave her headaches and made her moody and less patient.

“I was actually allergic to one of the medications, which just means that you keep taking it and deal with the itching and rash,” Woock said.

But she hung on until it was time for a doctor to surgically retrieve her eggs, at which point patients can face even more choices. Because the couple’s fertility problem appeared to be with Rob’s sperm, the clinic offered to use a special device to help pick the best sperm for IVF.

“We were kind of like, ‘Yeah, why wouldn’t you?'” Woock said. “If it’s gonna give us a better chance, do it.”

A device like that is called an add-on. Add-ons are often new technology, described as cutting-edge, which can appeal to patients. Examples of add-ons include — which some specialists argue improves the odds of a live birth — and Ìý²¹²Ô»åÌý, both methods claiming to facilitate implantation.

Jack Wilkinson, a biostatistician at the University of Manchester in England, , which he has found can increase costs — and, he said, they may not work.

“We quite often see there’s no benefit at all,” Wilkinson said. “Or, possibly even worse, that there’s a disadvantage of using that treatment.”

Wilkinson said the device Woock’s clinic offered could work, but the evidence supporting it is thin.

Failed Fertilizations

The clinic called Woock the morning after her egg retrieval. None of Woock’s eggs fertilized. The procedure revealed that her husband’s sperm quality wasn’t the only fertility issue the couple faced.

“They immediately saw that there was something wrong with my eggs,” Woock said. “My eggs are just total crap.”

She underwent a second round of IVF with the same result — no fertilization.

“Getting that news the second time … felt even more set in stone that this was going to be a very long, challenging road,” Woock said.

Challenging and expensive. Most states, including Indiana, don’t require insurers to cover fertility treatment. Without insurance, a round of IVF can cost more than $10,000 — even more than $20,000 — with no guarantee the patient will get pregnant.

Woock was lucky that her employer-provided insurance covered a lot. But it still wasn’t cheap. She had to pay for some medications, “plus, you have to pay lab and facility fees that insurance doesn’t pay,” Woock said.

Donor sperm and eggs aren’t generally covered, either. Those can be tens of thousands of dollars.

Woock faced a hard choice: After two failed attempts, did she want a kid enough to go through IVF again? She and her husband decided they did. So Woock did a third round of IVF. And then a fourth. When that didn’t work, she gave up on using her own eggs.

“What I expected as I was growing up and picturing my children is not what I will see,” Woock said.

Woock and her husband decided to try donor eggs. If all goes according to plan, she could still carry a child. She wants to keep trying.

“I realize that pregnancy is incredibly challenging on your body and your mental state,” she said. “If I can make it through a year of IVF, I can make it through morning sickness.”

This story is part of a partnership that includes , and Kaiser Health News. The story was adapted from Episode 6 of the podcast . You can hear more about the fallout from Dr. Donald Cline’s deception on Sick’s first season, at .

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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“He was reaching for things, and he was talking to Bill Gates and he was talking to somebody else I’m just certain he hasn’t met,” his mother, Cheryl, says. She remembers finding Jason lying on the floor of the treatment center in late 2016. “I would just bring him blankets because they didn’t have beds or anything.”

Cheryl had taken Jason to the clinic out of desperation. Jason, now in his late 30s, has struggled with addiction since he was a teenager. Cheryl saw his drug use escalate after he was prescribed a benzodiazepine for his anxiety, and he eventually began using heroin and meth. Over the years, Jason would try to get into recovery, but treatment programs didn’t help him for very long.

“I thought he was going to die,” Cheryl says. (KHN and NPR are using only first names because Jason worried he would lose his job if his employer found out about his addiction history.)

In late 2016, she saw a local TV news segment about a clinic called Emerald Neuro-Recover. The staff there treats addiction with something called NAD therapy, an IV infusion that can contain amino acids and other nutritional supplements, including nicotinamide adenine dinucleotide, a compound found in living cells.

The infusion, which is delivered over 10 to 15 days, cost $15,000, and it wasn’t covered by insurance. But the TV report said Emerald’s treatment was “proven to wipe drug cravings away.” Cheryl was intrigued.

Emerald and dozens of other companies across the U.S. say NAD therapy can address conditions from anxiety to depression to chronic fatigue and even Alzheimer’s.

And clinicians offering the treatment say that it reduces or stops cravings for alcohol or illicit drugs in up to  of patients. The treatment has gained attention on  and in the mainstream media.

But such claims about NAD therapy and addiction are not supported by scientific evidence, and they may conflict with federal and state regulations against deceptive marketing of medical treatments. Emerald and other addiction treatment clinics use these claims on websites, social media and in the news to attract clients looking for help. Emerald even used patients’ stories to promote the therapy — in some cases, more than a year after the patients returned to using illicit drugs.

In an interview with Side Effects Public Media, Emerald leadership defended its use of the therapy. “It’s not really controversial; it’s just novel or new,” says John Humiston, a family medicine physician and the company’s medical director. “The cravings we expect to be gone within days.”

Earlier this year, Emerald leadership discussed NAD therapy with Side Effects but cut the interview short amid questions about the treatment’s efficacy. Company officials declined another interview and did not respond to follow-up questions via email. For that reason, Side Effects was unable to ask them about Jason’s case.

Treatment centers touting high success rates can sound appealing to vulnerable people suffering from addiction or to their families, even if there’s no solid evidence to support their methods. “[Clinics] know this is a really desperate population,” says , a health policy researcher focused on substance use disorders at the University of Central Florida.

Unsubstantiated claims have long been a part of addiction treatment. For instance, in the late 19th century, a doctor dubbed his formula the “” and sold it via mail order for addiction, claiming a 95% cure rate. “In a week the desire to drink will be gone,” read one advertisement.

More recently, NAD therapy is among a wide range of unproven treatments currently marketed to people with addiction, including the herbal extract  and other types of supplements. The FDA and the FTC  last year but have limited resources to police the market for unproven treatments. And that leaves consumers on their own to sort out fact from fiction.

While patients spend time and money on ineffective treatments, they miss out on proven therapies that can reduce their risk of relapsing, including behavioral counseling and medications approved by the FDA for treating addiction, says Andraka-Christou. “We do actually now have evidence-based treatments available,” she says. “But you still do have these quack treatments popping up.”

A Hard Sell

Numerous companies make bold claims about NAD therapy. A Las Vegas says, “IV NAD+ therapy has a 90% success rate at reducing cravings and a 7% relapse rate.”

´¡Ìý in Pooler, Ga., says NAD therapy can provide “rapid reduction or even elimination of cravings, restoring clarity of mind and enthusiasm to be alive.”

´¡²Ô´Ç³Ù³ó±ð°ùÌý in Greenville, S.C., says, “Withdrawal signs of addiction go down approximately 70-80% on the first day and continue to decline as the therapy progresses.”

Similar glowing  from Emerald led Cheryl and Jason to meet with Emerald leadership in late 2016, including founder Joe Pappas and patient liaison Amora Scott. Cheryl recalls, “They said, ‘This is going to fix it. … It has never not worked for us. It works for everyone.'”

Jason insisted his mother shouldn’t pay thousands of dollars for his treatment. She had already spent too much money on him. They decided not to come back.

“Well, then Amora started calling me and calling me and calling me,” Cheryl says. Unknown to Jason at the time, Cheryl says Scott persuaded her to pay for the treatment upfront.

Cheryl took out an advance on her credit card and met Scott at a gas station to hand over the money. “When I gave her that check, I looked at her and said, ‘This is to save my son’s life,’ ” Cheryl recalls.

Fifteen thousand dollars could seem like a bargain for such a quick fix — one that “,” according to a press release from Emerald.

But there has been little research on the effects of the formulas used by Emerald and similar clinics.

“I don’t know where those claims could come from, but it doesn’t seem realistic to me,” says , an addiction psychiatrist in Indianapolis. She says there’s insufficient evidence to support using NAD therapy over other standard treatments: “There’s no actual data on any of these things.”

For an additional $400 fee, Emerald patients can have their brain scanned at a nearby clinic to document their progress with NAD therapy. An Emerald  shows a series of scans from a woman whose “brain is suffering from alcoholism.” Areas that glow red, orange and yellow — “HYPERACTIVE and OVERACTIVE” — totally disappear from the scans after 12 days of NAD therapy, according to the company.

“This is totally bogus,” says , an addiction psychiatrist at the Indiana University School of Medicine with expertise in brain imaging who reviewed the images via email. “We do not have research in our field that allows us to use EEG or any other brain imaging technique to document treatment response.”

NAD, which is an important coenzyme in several cellular processes, including energy metabolism, is being researched at Harvard for . Supplements claiming to boost NAD levels have recently gained popularity for purported anti-aging benefits. But NAD’s benefits in addiction treatment are unproven, and providers cite unpublished research to make sweeping claims.

One pilot study cited among some NAD therapy providers shows close to 90% of patients have reduced cravings after 10 days of treatment. The study falls short of the standard used by the scientific community to weigh evidence: It did not compare NAD therapy to a placebo or other treatment. It also did not undergo rigorous peer review, and the results have not been published in a scientific journal.

A doctor involved with that study, Richard Mestayer, says he is used to skepticism. Mestayer runs a clinic in Springfield, La., that offers NAD therapy. He says it is unclear how NAD therapy helps with addiction but that his personal experience convinced him it works.

“I think there’s a lot of stuff we don’t know yet,” he says. “I was a skeptic, but when a two-by-four hits you in the head every time, you say, ‘Oh, I better pay attention.'”

Dangerous Withdrawals

The hallucinations started several days into Jason’s treatment at Emerald. Cheryl wanted to take him to the emergency room.

Rapidly withdrawing patients from benzodiazepines can cause dangerous side effects, such as  — it can even be fatal, says Zarse. “There are two types of withdrawal symptoms that can kill you: alcohol and benzodiazepines,” she says. “It can cause enough misfiring in the brain that it can lead to brain death.”

The standard treatment is to slowly wean someone off benzodiazepines. “They even give benzos for benzodiazepine withdrawal in jail — that shows you how serious this is,” Zarse says.

Still, Cheryl says, Emerald staff told her to take Jason home rather than to the hospital. She decided to go to the ER anyway after Jason tried to throw himself through a wall.

Jason was still hallucinating when he arrived at the ER, and then the seizures started. “He was just totally out of it for about three days,” Cheryl says. “Not even alert.”

One of the doctors who treated Jason noted in his medical records: “Unclear exactly what this NAD substance/medication is.”

When Jason left the hospital, he returned to Emerald to finish the treatment. “I didn’t know what else to do,” he says.

Jason says the therapy didn’t work. He white-knuckled his way through abstinence for three months before he relapsed. “One day out of the blue, I called somebody up and just was going to do it one time,” he says. “You know how that goes.”

Marketing Unapproved Substances

The federal Food and Drug Administration has not approved NAD therapy, according to a spokesperson for the agency.

Substances marketed as treatments for specific conditions are considered medications and must be approved by the FDA for that purpose, says Andraka-Christou. For medications, FDA approval requires three phases of human clinical trials. Without that approval, it would violate FDA regulations to market a treatment for that condition.

More broadly, making unsupported claims about a medical treatment or supplement violates federal rules. Both the FDA and the Federal Trade Commission regulate how companies advertise treatments and supplements.

But no publicly available information could be found to show that either agency has taken enforcement action against any clinic offering NAD treatments.

Spokespeople for the FDA and the FTC said via emails that their agencies could not comment on specific cases. “All advertising under our jurisdiction must be true, not deceptive, and supported by competent and reliable scientific evidence,” wrote the FTC spokesperson.

“The FDA takes action against companies that engage in ‘health fraud,'” said the email from the FDA.

Lack of FDA action doesn’t mean it is acceptable for clinics to market the therapy, says , an assistant professor at the University of Maryland who researches dietary supplements.

“The FDA can be slow, and it’s understandable because there are so many [potential enforcement issues] out there,” he says. “There could still be cause for concern.”

Patient Stories

Since its inception, Emerald has featured patients’ stories on social media and in news coverage, much of which  the company’s claims about ending addiction. But several of these same patients went to jail for drug and alcohol offenses soon after being treated at Emerald.

In a 2017 TV news story about Emerald, a man says that Emerald helped him get his alcohol and pill addiction under control. Reached by phone, he told Side Effects that he reluctantly said those things to get the TV interview over with. “[NAD therapy] was a complete waste of my time and my family’s money,” he said. “It did absolutely nothing for me.” (He asked to remain anonymous because many of his family and friends don’t know about his addiction, and he worries about his future job prospects.)

He added that he also experienced a seizure when the doctor quickly cut him off from alcohol without antiseizure medication. He says he started drinking again about a week after he finished NAD therapy, and he was arrested for drunken driving a few months later.

In another video Emerald posted on YouTube in 2017, an Indianapolis man is seen leaving Emerald on a sunny day. “I feel wonderful,” he says. “Using heroin, I had a lot of racing thoughts, anxieties, cravings. All that’s gone.” He tells other people who use heroin to go to Emerald.

Six months later, he was in jail for possession of a syringe. Reached by phone, he said that the treatment didn’t work for him, and that he received it free of charge.

Emerald still promoted patients’ stories like these on social media until December 2018. The company began removing content from its website, YouTube and Facebook shortly after Side Effects began reporting this story.

Emerald executives declined to provide Side Effects with a patient to interview.

Asked about cases of relapse among Emerald patients, Humiston replied: “What I’ve seen is that [the treatment is] very effective.” Humiston started work at Emerald in January 2019, but he was a medical adviser for the company before then, and emails between Cheryl and Emerald staff indicate that he was consulted about Jason’s treatment there.

Origins Of Treatment

Humiston says he believes in the treatment he offers: “It’s got quite a reputation of success. Nothing’s 100%, although for most people, it is 100%. That’s been my experience.”

But Humiston acknowledges that he does not regularly track patients’ long-term outcomes: “That’s the reason to get a study organized,” he says. Last year, Humiston told a local TV station that a clinical trial was forthcoming, but it has not materialized.

Humiston first learned about NAD therapy from a man named William Hitt. Hitt is often credited with originating the treatment, but he was not a doctor or a researcher. According to a lawsuit brought by the state of Texas in the mid-’80s, he falsely claimed to be a doctor when he treated AIDS patients with “injections of the patient’s own filtered urine.” Forced to shut down in Texas, he moved to Tijuana, Mexico, where Humiston worked with him from 2003 until his death in 2010.

Humiston himself has had trouble with his medical license. The Medical Board of California reprimanded him, according to investigation documents, for committing “gross negligence in his care and treatment” of his teenage son, who almost died in 2016 when Humiston failed to seek proper treatment for the boy’s heart infection. Documents say Humiston began performing IV treatments on the boy before he was 3 years old, which may have caused the boy’s heart issues.

Asked about the investigation, Humiston said there was “inaccurate information put in there” but that he accepted a public reprimand from the medical board “just to end it.” He did not respond to emailed follow-up questions about the disciplinary case.

Humiston applied for an Indiana medical license in November 2018, and the state granted it. He became Emerald’s medical director in January. He is at least the sixth doctor to work with the company in its three years of operation.

‘I Owe Her The Money’

When asked in January about Emerald’s claims and the origins of NAD therapy, Star Voigt, the CEO at the time, declined to answer further questions. “We’re trying to help people,” she said. “So if you’re going to go into that, then I’m going to ask you kindly to leave.”

Side Effects sent further questions via email, but the company did not answer them. Instead, Voigt sent a statement from Humiston expressing concern that Side Effects’ reporting wouldn’t be balanced or objective. Voigt left the company soon after.

Cheryl, the patient Jason’s mother, wrote to Emerald founder Pappas a few months after her son left Emerald. She told him that Jason was facing an $11,000 medical bill from his hospital stay and that he still struggled to stay away from illicit drugs. She reminded Pappas that stopping benzodiazepines cold turkey — what Jason went through at Emerald — is dangerous and goes against standard medical practice.

Cheryl wanted a refund so she could pay off Jason’s medical bill. “Can we compromise?” she wrote.

Scott, the patient liaison, wrote back that Humiston believed Jason should be tested “for mold … infections, and/or inflammation in the blood and body.” Instead of a refund, Emerald offered further NAD treatments and another therapy — for $3,000.

Cheryl and Jason declined the offer. “First, do no harm,” Cheryl wrote back. She filed complaints with the FTC and the state attorney general, but nothing came of it. ( allows the state attorney general to prosecute companies for deceptive advertising. The office would not confirm or deny whether it is investigating Emerald’s practices.)

The hospital eventually did waive the $11,000 bill. But Cheryl still has not received a refund from Emerald.

“I feel like I owe her the money,” Jason says. “At some point, I’ll pay it back.” He says he finally got help with his addiction through a local 12-step program that he has been part of for two years. Looking back at his treatment at Emerald, he says he felt duped into trying NAD therapy. “I think it’s taking advantage of people.”

“I can’t believe that no one stops them,” Cheryl says. “You’ve got these people selling snake oil, and they’re getting away with it.”

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Daryl had used heroin and prescription painkillers for more than a decade. Almost four years ago, he became one of more than 200 people who tested positive for HIV in a historic outbreak in Scott County, Ind. After that diagnosis, he said, he went on a bender.

But about a year ago, Daryl had an experience that made him realize he might be able to stay away from heroin and opioids. For several days, he said, he couldn’t find drugs. He spent that time feeling terrible because of withdrawal sickness.

His friend offered him part of a strip of Suboxone Film, a brand-name version of the addiction medication buprenorphine that is combined with naloxone.

“At first it felt like I was high,” Daryl said. “But I think that’s what normal feels like now. I have not been normal in a long time.”

is a long-acting opioid that is generally used to treat opioid addiction. It reduces cravings for the stronger opioids he had been taking, prevents physical withdrawal from those drugs and comes with a significantly lower risk of fatal overdose.

Daryl injected the buprenorphine, and his opioid withdrawal symptoms disappeared. (Daryl is his middle name, which NPR and Kaiser Health News are using to protect his identity because it is illegal to use buprenorphine without a prescription.)

Weeks later, the grind of chasing heroin had worn on him. Buprenorphine controlled his withdrawal symptoms longer, and Daryl decided to use it to stay away from other drugs.

“I didn’t crave nothing. I wasn’t sick. My belly didn’t hurt. I wasn’t hurting in my joints,” he said.

Buprenorphine is one of just three federally approved medications to treat opioid addiction. It’s an opioid itself, so some people misuse it — they snort or inject the medication. And patients who have prescriptions for buprenorphine sometimes sell or give it away, which is known as diversion. Some policymakers and officials point to diversion as a reason to further increase regulations. Providers already need to be certified to prescribe it, and there’s a cap on the number of patients they can treat with the drug.

But addiction treatment professionals argue the problem of buprenorphine diversion is often misunderstood. A black market exists in part, they point out, because addiction treatment can be . President Donald Trump is expected to sign a bill that would increase access to the medication, but it’s unclear how quickly that access will grow.

In the meantime, many people dealing with addiction will turn to the black market for buprenorphine — sometimes using it to get high, sometimes using it to prevent withdrawal until they can get something stronger and sometimes using it exactly as it is intended to be used: to treat addiction.

It’s A Weaker Opioid

, president of the American Society of Addiction Medicine, which supports the measure that would increase access to buprenorphine, contends that making the drug more widely available outweighs the risk. For one thing, buprenorphine is not as dangerous as other opioids. “The risks of overdose with buprenorphine are minimal,” she said.

±õ³ÙÌýis possible to fatally overdose on buprenorphine — especially if users don’t have a tolerance to opioids or they mix it with other substances. But .

Buprenorphine’s effects are less potent than those of heroin and fentanyl, and the medication can block other opioids’ effects. Because of these attributes, few people use buprenorphine to get high. Instead, more people use it to  and to stay away from other illegal drugs such as heroin and illicit fentanyl.

Some leading addiction experts argue that self-treatment with buprenorphine can save lives because it is used in place of more dangerous substances that are blamed for the .

“It was not diverted buprenorphine that’s responsible for our current situation,” ²õ²¹¾±»åÌý,Ìýan addiction specialist and instructor at Harvard Medical School. “The majority of people are using it in a way that reduces their risk of overdose.”

“It’s definitely illegal,” Daryl said. “But would they rather me be driving to Louisville and picking up two 8-balls of heroin?”

Limited Access

People often try to treat themselves when they ²õ²¹¾±»åÌý, an addiction specialist and researcher at the University of Kentucky.

“These people want help, and they tried and they didn’t succeed. So now they’re going to go get it if it’s available,” she said.

Professional treatment with buprenorphine can be difficult for patients to get. Prescribers need a special waiver to prescribe the medication, and federal rules limit the number of people they can treat, a cap that is specific to buprenorphine.

Federal guidelines changed under the Obama administration to increase the number of prescribers and the number of patients they can treat. Nurse practitioners and physician assistants can now apply for a waiver to prescribe buprenorphine, and doctors who meet certain requirements can now treat up to 275 patients — that’s up from the previous limit of 100.

The new bill on its way to Trump’s desk would let more nurses prescribe buprenorphine and allow some doctors who recently got waivers to treat more patients.

Amid these efforts, some law enforcement officials and policymakers have said that  actions are needed to stop diversion.

But Basia Andraka-Christou, an assistant professor and addiction policy researcher at the University of Central Florida, said increasing regulations or shutting down prescribers would limit treatment options for people addicted to opioids.

“I guarantee you,” she said, “they’re either going to go and buy heroin and get high — which surely is not a great policy solution here — or they’re going to go buy Suboxone on the street.”

A Step Toward Safer Treatment

Getting Suboxone on the black market is obviously not ideal. Addiction is a complex, chronic disorder and patients need comprehensive care. That means a treatment professional to help them figure out the proper dose and counseling to address other mental health needs that are common among people with addiction. But Lofwall said people addicted to heroin or painkillers often realize they want professional help in quitting after trying buprenorphine illegally.

“They’ve had it and they know it works for them and they want to get it legally,” Lofwall said. “They want to get their life back.”

Daryl had that sort of experience. Several weeks after he began using buprenorphine regularly, Daryl tried to sign up for insurance so he could get help — medication and counseling — in staying away from other opioids.

“I think if I had never started [Suboxone] on the street, I wouldn’t have no interest in doing nothing but getting high,” he said.

Daryl still hasn’t made it into treatment. He had trouble starting his insurance, and the market for illicit buprenorphine can be fragile. Daryl struggled to stay away from heroin when the person from whom he bought buprenorphine lost the prescription. Addiction can take years to conquer, and many attempts, but Daryl said his time on buprenorphine allowed him to see a way back to a normal life.

“I’m at a point of my life now where I know I’ve got to change something, or I’m going to go back to prison,” he said. “I’m definitely ready to do something different.”

This story was produced in partnership with ,Ìý, and Kaiser Health News. A longer version of the story appears in Side Effects’ podcast 

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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Cervantes contó que la paciente era una mujer de México con insuficiencia renal, quien fue reiteradamente a la sala de emergencias durante más de tres años. En aquél entonces, su corazón ya se había detenido más de una vez, y sus costillas estaban fracturadas por los esfuerzos de resucitación.

La mujer finalmente decidió suspender el tratamiento porque el estrés era demasiado para ella y para sus dos hijos pequeños. Murió poco después, dijo Cervantes.

La insuficiencia renal o enfermedad renal en etapa terminal se puede tratar con diálisis de manera rutinaria, cada dos o tres días. Sin esta diálisis, que elimina las toxinas de la sangre, la afección pone en peligro la vida: los pulmones de los pacientes pueden llenarse de líquido y corren el riesgo de un paro cardíaco si su nivel de potasio es demasiado alto.

Pero la paciente de Cervantes era indocumentada Por eso, no tenía acceso a un seguro del gobierno, y su única opción era llegar en plena crisis a la sala de emergencias para recibir diálisis.

Cervantes, especialista en medicina interna y profesora de medicina en la Universidad de Colorado en Denver, dijo que la muerte de esta mujer la inspiró a centrarse más en la investigación.

“Decidí hacer la transición para poder comenzar a reunir pruebas para cambiar el acceso a la atención en todo el país”, dijo.

Agregó que la diálisis de emergencia puede ser dañina para los pacientes: el riesgo de muerte para alguien que recibe diálisis solo en casos de emergencia es que para el que recibe atención estándar, reveló una investigación publicada en febrero.

El de Cervantes, publicado en Annals of Internal Medicine, muestra que estas emergencias cíclicas también afectan a los proveedores de atención médica. “Es muy, muy angustiante”, dijo. “No solo vemos el sufrimiento en los pacientes, sino también en sus familias”.

Se estima que, en los Estados Unidos, hay 6.500 inmigrantes indocumentados con enfermedad renal en etapa terminal. Muchos de ellos no pueden pagar un seguro privado y están excluidos de Medicare o Medicaid. El tratamiento de estos pacientes varía ampliamente de estado a estado, y en muchos lugares la única forma en que pueden recibir diálisis es en una sala de emergencia.

Cervantes y sus colegas entrevistaron a 50 proveedores de atención médica en Denver y Houston e identificaron preocupaciones comunes. Los investigadores descubrieron que proporcionar a los pacientes indocumentados atención por debajo del estándar debido a su estatus migratorio contribuye al agotamiento profesional y a la angustia moral.

“Los médicos están física y emocionalmente agotados por este tipo de atención”, dijo.

Cervantes dijo que las relaciones que establecen los médicos con sus pacientes regulares entran en conflicto con el tratamiento que deben brindar, lo que puede incluir negar la atención a un paciente visiblemente enfermo porque su condición no era lo suficientemente crítica como para justificar un tratamiento de emergencia.

“Es posible que llegues a conocer muy bien a un paciente y a su familia”, dijo. Los proveedores pueden ir al restaurante de un paciente o a reuniones familiares, como parrilladas o a una fiesta de quinceañera.

“Luego, a la semana siguiente, podría estar tratando de resucitar a ese mismo paciente porque no llegó a la emergencia a tiempo, o porque tal vez comió algo que era demasiado rico en potasio”, dijo.

Cervantes agregó que otros proveedores informan que se distancian de sus pacientes debido al sufrimiento del que deben ser testigos. “Conozco personas que han pedido ser transferidos a diferentes áreas del hospital, porque es difícil”, dijo.

Melissa Anderson, nefróloga y profesora asistente en la Escuela de Medicina de la Universidad de Indiana en Indianápolis, quien no participó en el estudio de Cervantes, dijo que la investigación de Cervantes coincide con su propia experiencia. Contó que cuando trabajaba en un hospital de la red de seguridad en Indianápolis, los pacientes llegaban a la sala de emergencias cuando ya se sentían enfermos. Pero algunos hospitales no ofrecían diálisis hasta que su potasio era peligrosamente alto.

Agregó que, para evitar que los rechazaran cuando su nivel de potasio era demasiado bajo, los pacientes bebían jugo de naranja, que contiene potasio, en la sala de espera, aumentando su riesgo de sufrir un paro cardíaco.

“Es como una ruleta rusa”, dijo Anderson. “Era muy difícil para nosotros ser testigos de eso”.

Anderson finalmente dejó de trabajar en ese hospital y, al igual que Cervantes, ha participado de investigaciones y esfuerzos de defensa para cambiar la manera en que se trata a los inmigrantes indocumentados con insuficiencia renal.

“Prácticamente tuve que tomar una clase sobre inmigración para entender qué estaba pasando”, dijo. “Los médicos simplemente no lo entienden, y no deberíamos tener que entenderlo”.

A los proveedores que entrevistó el equipo de Cervantes también les preocupa que estas emergencias prevenibles atenten contra los recursos hospitalarios (obstruyendo los departamentos de emergencias cuando los pacientes indocumentados podrían simplemente recibir diálisis fuera del hospital) y el costo: la hemodiálisis de emergencia cuesta casi cuatro veces más que la diálisis estándar, según de investigadores del Baylor College of Medicine.

Generalmente, esos costos están cubiertos por los contribuyentes a través del Medicaid de emergencia, que paga el tratamiento de urgencia para las personas de bajos ingresos sin seguro. En el año pasado, Anderson y sus colegas hallaron que, en un hospital de Indianápolis, el estado había pagado significativamente más por la diálisis de emergencia que por la atención de rutina.

Areeba Jawed, nefróloga en Detroit quien ha realizado una encuesta sobre este tema, dijo que muchos proveedores no entienden la cantidad de inmigrantes indocumentados que realmente contribuyen a la sociedad, a la vez que reciben pocos beneficios sociales.

“Mucha gente no sabe que los inmigrantes indocumentados sí pagan impuestos”, dijo. “Hay mucha desinformación”.

“Creo que hay mejores opciones”, dijo Jawed, quien ha tratado a pacientes indocumentados tanto en Detroit como en Indianápolis.

Como solución alternativa, algunos hospitales simplemente brindan atención de caridad para cubrir la diálisis periódica para pacientes indocumentados. Pero Cervantes argumenta que es mejor una solución política. El gobierno federal permite a los estados definir lo que califica como una emergencia.

“Varios estados, como Arizona, Nueva York y Washington, han modificado sus programas de emergencia de Medicaid para incluir diálisis estándar para inmigrantes indocumentados”, dijo.

Illinois cubre la diálisis de rutina e incluso aprobó una ley que permite a los inmigrantes indocumentados , apuntó.

“Idealmente, podríamos diseñar un lenguaje federal y hacer de esto la estrategia de un tratamiento nacional para los inmigrantes indocumentados”, dijo Cervantes.

En última instancia, agregó, los proveedores no quieren tratar a los pacientes indocumentados de manera diferente.

“Al final del día, los médicos se convierten en proveedores porque quieren proveer atención a todos los pacientes”, concluyó.

Esta historia es parte de una asociación que incluye a , y Kaiser Health News.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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“Recuerdo haber dicho: ‘No, tengo Narcan'”, contó, refiriéndose a una versión de marca del antídoto para la sobredosis de opioides naloxona. “Ahora suena tonto, pero eso es lo que dije”.

Sturgeon roció una dosis del fármaco en la nariz del conductor y esperó a que hiciera efecto. Contó que al minuto llegaron los paramédicos.

“Mientras caminaban hacia nosotros, el conductor comenzó a moverse lentamente”, dijo. Ambas personas sobrevivieron.

Sturgeon tenía el medicamento porque trabaja para Overdose Lifeline, una organización sin fines de lucro dedicada a la distribución de naloxona. Pero muchos transeúntes en esa situación no estarían preparados para ayudar.

En abril, el Cirujano General de los Estados Unidos, Jerome Adams, instando a más estadounidenses a aprender a usar naloxona y llevarlo con ellos en caso que se enfrentaran con la situación de tener que salvar a alguien que sufriera una sobredosis.

Con el aumento de las sobredosis en todo el país, el aviso sugiere que personas comunes, que pueden ser testigos de una sobredosis antes que lleguen la policía o los paramédicos, pueden desempeñar un papel fundamental para salvar vidas.

Pero si no se es un profesional médico, obtener una dosis de naloxona puede ser difícil. Es un medicamento de venta bajo receta, y normalmente un médico o enfermera debería recetarlo directamente a la persona en riesgo de sufrir una sobredosis. , abogado del Programa Nacional de Ley de Salud, dijo que crea una barrera para las personas con adicción.

“Muchas personas en riesgo de una sobredosis no tienen contacto con un proveedor médico o tienen miedo por el estigma”, dijo.

Para ampliar el acceso, todos los estados y Washington, D.C., que facilitan que amigos, familiares o personas cercanas obtengan y usen la naloxona. Lo fácil que sea depende del estado o incluso de la farmacia.

Davis dijo que la mayoría de los estados permiten algo llamado prescripción de terceros, por lo cual los médicos pueden recetar naloxona a alguien que conoce a la persona que está en riesgo de sobredosis. Y la mayoría de los estados han aprobado algún tipo de ley del que brinda inmunidad legal a las personas que administran el medicamento o que llaman al 911.

Davis dijo que otro tipo de ley permite una forma de receta llamada orden permanente. “En lugar de tener el nombre de una persona, tiene los de un grupo de personas”, explicó.

Una orden permanente podría aplicarse, por ejemplo, a cualquier persona que tome analgésicos opioides o que tenga adicción. O, dijo Davis, “cualquiera que esté en condiciones de ayudar a alguien, lo cual, lamentablemente, hoy en día significa esencialmente para todo el mundo”.

En Indiana, su estado natal, el Cirujano General firmó una orden permanente a nivel estatal en 2016, mientras se desempeñaba como comisionado de salud. Permite que las farmacias, los departamentos de salud locales o las organizaciones sin fines de lucro se registren en el estado y cumplan con ciertos requisitos para vender el medicamento a cualquier persona que lo solicite.

Pero, a dos años de promulgar la orden, solo cerca de la mitad de las farmacias de Indiana están registradas, y los defensores locales dicen que muchas personas, incluso algunos farmacéuticos, aún desconocen la ley.

Incluso si comprenden las leyes que regulan la naloxona en sus estados, y se sienten cómodos pidiéndola en la farmacia, aún existe el costo, que . Dos farmacias cerca de WFYI en Indianapolis almacenan naloxona. Una cobró $80 por dos dosis de la forma genérica del medicamento. La otra cobró $95 por dos dosis de Narcan, una versión de marca.

“Es caro”, dice Brad Ray, investigador de la Escuela de Asuntos Públicos y Ambientales de la Universidad de Indiana. “Las personas que son usuarios están reuniendo dinero para comprar drogas. No están preparados para comprar naloxona con ese dinero”.

Más de una docena de senadores han firmado instando al Secretario de Salud y Servicios Humanos, Alex Azar, a negociar con las compañías farmacéuticas para bajar el precio de la naloxona.

Pero Ray dijo que, para las personas que no pueden pagar el medicamento, los departamentos de salud y las organizaciones sin fines de lucro pueden ayudar. Las leyes en muchos estados permiten a estas organizaciones dispensar naloxona a personas comunes.

El departamento de salud de Indiana ha utilizado fondos federales y estatales para comprar casi 14,000 kits de naloxona desde 2016, informó el estado. El estado distribuye esas dosis gratuitas a través de los departamentos de salud del condado. Pero casi la mitad de los condados de Indiana no solicitaron kits. Y la mayoría de los kits fueron para personal de emergencia.

Los departamentos de salud locales, dijo Ray, necesitan trabajar más arduamente para que la naloxona esté en manos de las personas que podrían usarla. Las personas que usan drogas, después de todo, pueden no sentirse cómodas yendo al gobierno a buscar naloxona.

“Ponerla en las manos de los usuarios: ese es el truco que debemos resolver”, dijo Ray.

Davis dijo que hay un cambio que realmente podría ayudar. La Administración de Alimentos y Medicamentos (FDA) o el Congreso podrían hacer que la naloxona sea un medicamento de venta libre para que sea más fácil de adquirir, y tal vez más económico. El comisionado de la FDA, Scott Gottlieb, tiene la autoridad para hacerlo, dijo Davis, pero hasta ahora no ha actuado.

Esta historia es parte de una asociación informativa con NPR, WFYI, y Kaiser Health News.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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“I kind of recall saying, ‘No man, I’ve got Narcan,'” she said, referring to a brand-name version of the opioid overdose antidote, naloxone. “Which sounds so silly, but I’m pretty sure that’s what came out.”

Sturgeon sprayed a dose of the drug up the driver’s nose and waited for it to take effect. About a minute later, she said, the paramedics showed up.

“As they were walking towards us, the driver started slowly moving,” she said. Both people survived.

Sturgeon had the drug with her because she works for Overdose Lifeline, a nonprofit devoted to distributing naloxone. But many bystanders in that situation would be unprepared to help.

Last month, U.S. Surgeon General Jerome Adams urging more Americans to learn to use naloxone and to carry it with them in case they encounter someone who has overdosed.

With the increase in overdoses nationwide, the advisory suggests that lay responders — people who may witness an overdose before police or emergency medical services arrive — can play a critical role in saving lives.

But if you’re not a medical professional, getting a dose of naloxone can be difficult. It is a prescription drug, and normally a doctor or nurse would have to directly prescribe it for the person at risk of overdosing. , an attorney for the National Health Law Program, said that creates a barrier for people with addiction.

“A lot of people at risk of an overdose don’t have contact with a medical provider or they’re afraid because of stigma,” he said.

To broaden access, every state and Washington, D.C., have making it easier for friends, family members or bystanders to get and use naloxone. Just how easy it is depends on your state, or even the pharmacy you use.

Davis said most states allow something called third-party prescribing, which lets doctors prescribe naloxone to someone who knows the person at risk of an overdose. And most states have passed providing legal immunity for people who administer the drug or call 911.

Davis said another type of law allows a kind of prescription called a standing order.

“But instead of having a person’s name on it, it has a group of people,” said Davis.

A standing order could apply, for example, to anyone who takes opioid painkillers or suffers from addiction. Or, Davis said, “anybody who might be in a position to assist someone, which, unfortunately, today means essentially everybody.”

In his home state of Indiana, Surgeon General Adams signed a statewide standing order in 2016, while serving as the state’s health commissioner. It allows pharmacies, local health departments or nonprofits that register with the state and follow certain requirements to dispense the drug to anyone who requests it.

But two years later, only about half of Indiana pharmacies are registered, and local advocates say many people, even some pharmacists, are still unaware of the law.

Even if you understand the laws regulating naloxone in your state — and you feel comfortable asking for it at the pharmacy counter — there’s still the cost, which has  in recent years. Two pharmacies near WFYI in Indianapolis stock naloxone. One charged $80 for two doses of the generic form of the drug. The other charged $95 for two doses of Narcan, a brand-name version.

“It’s expensive,” says Brad Ray, a researcher at Indiana University’s School of Public and Environmental Affairs. “People who are users are scraping money together to buy drugs. They’re not prepared to buy naloxone with that money.”

More than a dozen U.S. senators have signed a urging Health and Human Services Secretary Alex Azar to negotiate with drug companies to lower the price of naloxone.

For people who can’t afford the drug, Ray said, health departments and nonprofits can help. Laws in many states allow these organizations to dispense naloxone to lay responders.

Indiana’s health department used federal and state funds to purchase nearly 14,000 naloxone kits since 2016, the state reported. The state distributes those free doses through county health departments. But nearly half of Indiana counties didn’t request kits. And the majority of the kits went to first responders.

Local health departments, Ray said, need to work harder to get naloxone to people who might use it. People who use drugs, after all, may not feel comfortable going to the government for naloxone.

“Getting it in the hands of users — that’s the trick we need to figure out,” Ray said.

Davis said there is one change that could really help. The Food and Drug Administration or Congress could make naloxone an over-the-counter medication to make it easier to access, and maybe cheaper. FDA Commissioner Scott Gottlieb has the authority to do so, Davis said, but so far he has not.

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But there’s a problem. Scientific evidence doesn’t yet show the Bridge works.

Side Effects Public Media reporter Jake Harper spoke to NPR’s Rachel Martin about his and how it has been marketed to politicians and treatment centers in Indiana and elsewhere without sufficient proof.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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In overdose cases, the fluids may contain clues for investigators.

“We send that off to a toxicology lab to be tested for what we call drugs of abuse,” said Alfie Ballew, chief deputy coroner. The results often include drugs such as cocaine, heroin, fentanyl or prescription pharmaceuticals.

After testing, coroners typically make note of the drugs involved in an overdose on the death certificate — but not always.

Standards for how to investigate and report on overdoses vary widely across states and counties. As a result, opioid overdose deaths aren’t always captured in the data reported to the federal government. The country undercounts opioid-related overdoses by 20 to 35 percent, according to a  published in February in the journal Addiction.

“We have a real crisis, and one of the things we need to invest in, if we’re going to make progress, is getting better information,” ²õ²¹¾±»åÌý, the author of the paper and a health economist at the University of Virginia.

Data from death certificates move from coroners and medical examiners to states and eventually the Centers for Disease Control and Prevention, which publishes reports on overdose counts across the U.S. According , more than 42,000 people died from opioid-related overdoses in 2016, a 30 percent increase from the year before.

But that number is only as good as the data states submit to the CDC. Ruhm said the real number of opioid overdose deaths is closer to 50,000. He came to the higher estimate through an analysis of overdoses that weren’t linked to specific drugs.

On a death certificate, coroners and medical examiners often leave out exactly which drug or drugs contributed to a death. “In some cases, they’re classifying it as a drug death, but they don’t list the kind of drug that was involved,” said Ruhm. In the years he reviewed in his paper, 1999 to 2015, investigators didn’t specify a drug in one-sixth to one-quarter of overdose deaths.

Some states do worse than others. In 14 states, between 20 and 48 percent of all overdose deaths weren’t attributed to specific drugs in 2016, according to a breakdown from .

Many overdoses not linked to a specific drug were likely opioid-related, Ruhm said, so the lack of specificity leads to undercounting. According to Ruhm’s , Indiana’s opioid overdose fatality rate is especially far off. He estimated the state’s rate in 2014 was 14.3 overdose deaths per 100,000 people, twice as high as the rate reported that year.

In some states such as Indiana, independent county coroners investigate deaths. Coroners are usually elected, and they aren’t necessarily medical professionals. Other states, though, have medical examiners, who are doctors. Some even have a chief medical examiner who oversees death investigations for the whole state.

“States that have centralized oversight with medical examiners tend to do better than those with coroners,” said Ruhm.

In some places, death investigators don’t list substances on a death certificate because they haven’t tested for them. Brad Ray, a policy researcher at Indiana University’s School of Public and Environmental Affairs, said toxicology reports cost hundreds of dollars each, which could strain county budgets.

Additionally, toxicology reports are currently optional for Indiana coroners. “So if you’re not required to pay for it, and you’re not required to report it, why would you?” said Ray.

Indiana’s legislature recently passed a bill to standardize how coroners handle suspected overdoses, and Republican Gov. Eric Holcomb is expected to sign it. Starting in July, coroners will have to run toxicology screens and report the results to the state health department. The state will also help cover the added costs.

Data that is more accurate would likely make the opioid problem look worse as the numbers go up. But Ray said realistic data could help the state access federal funds to tackle the opioid epidemic and keep better track of drug problems.

“So we can see when trends are happening. We can see when there tend to be increases in cocaine and meth and decreases in opioids, if that happens,” Ray said.

Marion County’s Ballew learned at a conference last year that she could help improve the state’s data. Her office was already getting toxicology reports for all suspected overdoses, and now her team will list the drugs involved in an overdose on the death certificate.

“We’ll say ‘drug overdose’ or ‘drug intoxication,’ and then we identify the drugs,” she said. “So if it’s five drugs that have caused or contributed to the death, then we put those five drugs down.”

Ballew said she plans to travel the state and train other coroners to do it the same way.

This story is part of a partnership that includes , and Kaiser Health News.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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