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Your Long-Term Care Insurance Rate Spiked. Now What?

Medicare -- New York Times - Fri, 08/23/2019 - 6:08pm
Long-ago miscalculations by insurers have led to policyholders’ facing steep premium increases. But there are ways to keep costs down.
Categories: Elder, Medicare

3rd Human Case of EEE in Mass. Found In Franklin County

CommonHealth (WBUR) - Fri, 08/23/2019 - 3:06pm

A Franklin County man has tested positive for EEE, which is the third case discovered this year. These are the first human cases confirmed in the state since 2013.

Categories: Health Care

In Case You Missed It...

Center on Budget and Policy Priorities - Fri, 08/23/2019 - 1:52pm

This week at CBPP, we focused on family income support, state budgets and taxes, health, and the economy.

Categories: Benefits, Poverty

Must-Reads Of The Week From Brianna Labuskes

Kaiser Health News - Fri, 08/23/2019 - 1:11pm
The Friday Breeze

Newsletter editor Brianna Labuskes, who reads everything on health care to compile our daily Morning Briefing, offers the best and most provocative stories for the weekend.

Happy Friday! We have officially made it through the dog days of summer. (Fun fact: Apparently those are set dates and not just … a vague concept of “sometime in August when it’s hot.” I was today-years-old when I learned that.) But that doesn’t mean we’ve had even close to a dearth of health care news. So buckle up, here’s what you may have missed this week.

Planned Parenthood officially rejected Title X funding rather than comply with what it deemed a “gag rule” on its providers. The price tag on that decision? About $60 million annually. Clinics across the country are bracing for the financial hit, and the organization is leaning heavily on donors to try to stanch the wound.

The New York Times: Planned Parenthood Refuses Federal Funds Over Abortion Restrictions

The Associated Press: Planned Parenthood Sees Swift Fallout From Quitting Program

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Meanwhile, it was a bit of a roller-coaster week in terms of whether President Donald Trump would be pushing for background checks in his proposal to stem gun violence. After the dual mass shootings in El Paso, Texas, and Dayton, Ohio, Trump seemed open to the strategy, despite it being less than popular with his party. Then The Atlantic reported that following a phone call with NRA chief Wayne LaPierre, Trump softened that stance. Then Trump claimed the media reports were inaccurate and that some kinds of background checks were still on the table.

Pretty much nothing seems set in stone yet (at least publicly), and we should all just wait to see what comes in the official proposal likely to coincide with Congress’ return in September.

The Atlantic: Trump’s Phone Calls With Wayne LaPierre Reveal NRA’s Influence

Politico: Trump to Release Gun Control Proposals, Including Background Check Updates

We did find out this week exactly what was in the Parkland students’ plan, though. And let me tell you, they swung for the fences with it. Included in the roadmap: a national licensing and gun registry; a mandatory gun buyback program for assault-style weapons; a limit of one firearm purchase a month per person; the establishment of a national director of gun violence prevention; and a new multistep gun licensing system that would include in-person interviews and a 10-day waiting period before gun purchases are approved.

USA Today: Parkland Students Announce Gun Control Plan, Aim to Halve Gun Violence Rate in 10 Years

The Trump administration (and the Obama administration, as well) has long chafed at the restrictions that come with the Flores Settlement Agreement, which offers protection to detained immigrant children in U.S. custody. So, this week it released a new set of rules that effectively replace those regulations. Among other things, the new standards allow the government to detain children indefinitely instead of for 20 days, as laid out in the Flores agreement.

Reuters: Trump Imposes Rule Allowing U.S. to Detain Migrant Families Indefinitely

What’s definitely worth a read: the history behind the agreement and the story of the lawyers who have been defending it for decades. (“If someone had told me in 1985 that our work to protect children would continue into 2019, there is no way I would have believed it,” says Carlos Holguin, one of those original lawyers.)

The New York Times: The Flores Agreement Protected Migrant Children for Decades. It’s Under Threat.

Thirteen years ago, then-U.S. Surgeon General Richard Carmona was warned about some “disturbing” data that top federal scientists had discovered. It turned out that opioids were addictive and dangerous. The scientists recommended urgent action be taken to address the startling statistics, which hinted at a brewing crisis. Carmona agreed.

Yet the public was never told, and the momentum to do so fizzled. So what happened?

Politico: Federal Scientists Warned of Coming Opioid Crisis in 2006

Seemingly to further emphasize that the opioid epidemic’s early days were marked by (in retrospect) devastating missed opportunities and deep regret, another story looks at a little town in Appalachia in the late 1990s. There, a nun, a doctor and a lawyer were among the nation’s first activists to sound the alarm. Their efforts were ultimately crushed by Purdue Pharma.

The New York Times: A Nun, a Doctor and a Lawyer — and Deep Regret Over the Nation’s Handling of Opioids

Meanwhile, a study links states’ expansion of Medicaid and the uptick of opioid treatment prescription rates.

The New York Times: Opioid Treatment Is Used Vastly More in States That Expanded Medicaid

And HHS is going to relax privacy regulations around how patients’ history with addiction is noted in their charts. The rules were put in place so that patients felt comfortable seeking medical help without law enforcement being alerted, but HHS Secretary Alex Azar said they’ve become a barrier to proper care.

The Associated Press: Feds to Revamp Confidentiality Rules for Addiction Treatment

The FDA is stepping in to join the CDC’s investigation into cases of lung disease across the country that seem linked to vaping.

The New York Times: Vaping Sicknesses Rising: 153 Cases Reported in 16 States

And don’t miss the story from KHN’s own Victoria Knight about a West Virginia physician who all the way back in 2015 filed a paper on a patient with a lung disease he suspected was tied to vaping.

Years Ago, This Doctor Linked a Mysterious Lung Disease to Vaping

In this week’s miscellaneous file:

  • Emergency care in financially depressed areas has become a standoff between insolvent rural hospitals and patients who don’t have the money to pay their ER bills. That fight is ending up in court so often that locals in a small Missouri town call it the “follow-up appointment.”

The Washington Post: The ‘Follow-Up Appointment’

  • One of the side effects of the growing popularity of at-home DNA tests? More and more, people who were born using artificial insemination are finding out that their fathers aren’t the sperm donors their mothers chose but rather the doctor who performed the procedure.

The New York Times: Their Mothers Chose Donor Sperm. The Doctors Used Their Own.

Also, be sure to check out the Dallas Morning News’ original reporting from April on one of the women featured in the story.

Dallas Morning News: ABC’s ’20/20′ Features Dallas Woman Who Found Out Her Mother’s Fertility Doctor Is Her Father

  • The patient suffers from tremors, difficulty walking and loss of balance. If the patient is a man, his symptoms would be enough to have doctors start wondering if it’s Parkinson’s. But if it’s a woman, it’s chalked up to the modern-day version of what Victorians called female “hysteria.”

ProPublica: In Men, It’s Parkinson’s. In Women, It’s Hysteria.

  • For years, residents of a Newark neighborhood have been saying their water tastes funny because of the dangerous levels of lead. And yet little has been done to fix it.

The New York Times: ‘Tasting Funny for Years’: Lead in the Water and a City in Crisis

That’s it for me, and have a great weekend!

Categories: Health Care

New Reason Not To Eat: How Intermittent Fasting May Enhance The Immune System

CommonHealth (WBUR) - Fri, 08/23/2019 - 11:55am

New studies on mice and humans published in Cell this week offer a few explanations for how fasting might temporarily confer certain health benefits.

Categories: Health Care

Longer Looks: Racking Up The Steps; Confusing Diet Advice; And The Price Of Cellular Therapies

Kaiser Health News - Fri, 08/23/2019 - 8:39am
Each week, KHN finds interesting reads from around the Web.
Categories: Health Care

Skilled Nursing Homes Set To Lose Medicaid Money Brace For Battle With Connecticut Over Slashed Funds

Kaiser Health News - Fri, 08/23/2019 - 8:39am
The Connecticut legislature passed a law this year that allows the state to reduce Medicaid money to nursing homes that don’t maintain at least a 70 percent occupancy level. The facilities that will be hit the hardest are hoping to challenge the cuts. Medicaid news comes out of Georgia and Colorado, as well.
Categories: Health Care

State Highlights: Child Welfare Reforms Underway In Illinois, Connecticut But Problems Persist; Minnesota Officials Report More Possible Lung Disease Cases

Kaiser Health News - Fri, 08/23/2019 - 8:39am
Media outlets report on news from Illinois, Connecticut, Virginia, North Carolina, Michigan, Minnesota, California, Louisiana, Florida, Tennessee and Missouri.
Categories: Health Care

‘This Is A Crisis’: Many Patient Caregivers Are Slow To Identify Brain Diseases In Women, Doctors Say

Kaiser Health News - Fri, 08/23/2019 - 8:39am
Diagnosing brain diseases like Parkinson's can be complicated, but doctors are more likely to treat men for the diseases and label women as having "functional disorders.'' In other public health news: air pollution dangers; sitting less; DNA database privacy issues; and skewed genetic databases.
Categories: Health Care

Washington State Becomes Latest To Reject Family Planning Funding Following Trump Administration’s Changes

Kaiser Health News - Fri, 08/23/2019 - 8:39am
Opponents of the changes have deemed them a "gag rule." Planned Parenthood had also announced that it will not accept the federal funds with the constraints in place. Abortion news comes out of Indiana and Missouri, as well.
Categories: Health Care

What Research Shows About Long-Term Psychological Damage Of Immigrant Children Being Detained Indefinitely

Kaiser Health News - Fri, 08/23/2019 - 8:39am
There's ample research that exists that confirms the negative mental health impact of children being held in institutionalized settings. “The longer it goes on, the more damage is inflicted," says Jack Shonkoff, who directs the Harvard Center for the Developing Child.
Categories: Health Care

The Opioid Reckoning: It’s Rare To Hold Directors Liable For Corporate Conduct, But Sacklers May Prove To Be Exception

Kaiser Health News - Fri, 08/23/2019 - 8:39am
As court cases against Purdue Pharma progress, details continue to be revealed about the extent the Sackler family was involved in making decisions about the company's strategy. In other news on the crisis: lawyers fight to give newborns suffering from opioid epidemic a voice in the upcoming legal battles; Ohio's attorney general warns Endo and Allergan that their settlements don't resolve all the claims against them; a look at how journalists dug into DEA records on the root of the crisis; and more.
Categories: Health Care

There’s Little Incentive To Develop Antibiotics, But Does TB Drug’s Recent Success Story Herald New Model For Future?

Kaiser Health News - Fri, 08/23/2019 - 6:40am
In recent decades, pharmaceutical funding has been directed primarily toward drug research and development that will yield higher revenue, such as cancer drugs. But TB Alliance relied on donors from across the world to fund the development of its new tuberculosis antibiotic, and experts wonder if this is a path forward for new drugs. In other pharmaceutical news: the Norvartis data manipulation case continues, the FDA flexes its muscles, and a new treatment might help blood cancer patients.
Categories: Health Care

First Edition: August 23, 2019

Kaiser Health News - Fri, 08/23/2019 - 6:28am
Today's early morning highlights from the major news organizations.
Categories: Health Care

Addiction Clinics Market Pricey, Unproven Treatments To Desperate Patients

Kaiser Health News - Fri, 08/23/2019 - 5:00am

Jason was hallucinating. He was withdrawing from drugs at an addiction treatment center near Indianapolis, and he had hardly slept for several days.

“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.

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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 90% of patients. The treatment has gained attention on addiction recovery blogs 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.

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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 Basia Andraka-Christou, 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 “Double Chloride of Gold Cure” 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 kratom and other types of supplements. The FDA and the FTC cracked down on a few of these 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 vial containing the mix of supplements that Emerald uses in its infusion treatments.(Jake Harper/Side Effects Public Media)

A Hard Sell

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

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

Another center 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 testimonials 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 “restore[s] the brain to its pre-addiction neurologic state,” 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 Emily Zarse, 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.”

Brain scans from Emerald show what it claims to be before (top) and after (bottom) images of a woman’s brain following NAD treatment. The images appear in an Emerald brochure, including text that says, “The brain is more calm after 12 days of NAD+ Amino Acids Therapy.”(Emerald/Screenshot by Side Effects Public Media)

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 brochure 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 Leslie Hulvershorn, 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 its role in aging. 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 seizures — 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 Chris D’Adamo, 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 uncritically repeats 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.

Dr. John Humiston and Star Voigt, former CEO of Emerald, in January at the Emerald clinic.(Jake Harper/Side Effects Public Media)

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. (Indiana law 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.”

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

Categories: Health Care

Years Ago, This Doctor Linked A Mysterious Lung Disease To Vaping

Kaiser Health News - Fri, 08/23/2019 - 5:00am

Dr. John E. Parker was working at a West Virginia hospital in 2015 when a 31-year-old female patient was admitted with acute respiratory problems. A team of doctors ultimately suspected that her mysterious case of lipoid pneumonia might be related to vaping and weren’t sure they had seen anything like it before. They were intrigued enough to publish a case report — a type of medical paper on unusual or provocative patient findings. Such reports can serve as a call to the medical community to be on the lookout, though they sometimes raise more questions than they provide answers.

This summer, almost four years later, federal officials began investigating a national outbreak of severe lung illnesses linked to vaping that has struck more than 150 patients in 16 states. In an interview, Parker, a professor of pulmonary critical care and sleep medicine at West Virginia University, described what happened.

Q: Can you describe what the patient’s symptoms were when she arrived?

We would view them as classic for what is getting to be called vaping-associated lung disease. She was very, very short of breath and had a cough, and we were, of course, very worried that she might have pneumonia or some other acute respiratory illness. And then she was so sick she needed to be intubated.

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Q: What happens next in cases like this?  

We look for things like a [hemorrhage] or an active infection. And then for lipid-containing macrophages. And then we usually start some antibiotics [and a] low-dose steroid and then support the patient with a ventilator and oxygen and nutrition. And then just kind of wait and see if any other cultures come back to prove anything different than what you might be thinking.

Early on, we just felt like it was an unusual case and may not be a common viral or bacterial infection.

Q: How did you figure out the cause of her lipoid pneumonia was e-cigarettes?

It’s a diagnosis of exclusion. We excluded other [options], and it became the most likely cause.

We were convinced enough that the case was submitted for publication [in the medical journal Chest] and was accepted.

Q: Once you figured out the cause could be e-cigarettes, did you contact the Centers for Disease Control and Prevention or the Food and Drug Administration or any other regulatory agency to tell them about this?

We did not. We felt at the time that putting it in the medical literature was appropriate. And if other case reports from other parts of the country came forward, then we’d have more of a clustering of findings that might then warrant research agencies [getting a] better understanding [about] the cause of the disease.

Q:Which federal agency would you report it to, if you did?

Dr. John E. Parker(Courtesy of the West Virginia University Health Sciences Center)

In 2015, the FDA, of course, was still regulating cigarettes, but I don’t think the government had yet decided who would regulate vaping products. So I’m sure it was unclear who we should call.

Q: So did you or your team think this was a one-off event when you witnessed it?

We really felt that it wasn’t going to be a one-off event and that it was what we usually called in public health a “sentinel” health event … that it was an example of a respiratory illness that can be caused by this exposure and that it probably wasn’t the first case ever seen nor would it be the last.

Q: Was it the first case that you had seen at your institution?

To our knowledge it was our first case, but we are humble enough clinicians to realize we may have missed some other cases that we interpreted [as] viral pneumonia or bacterial pneumonia.

Q: Have you seen more cases since then?

I know we’ve seen a case [of alveolar hemorrhage syndrome] that we published, and in polling some colleagues we think we’ve probably also seen [cases of] cryptogenic organizing pneumonia as well as lipoid pneumonia and acute eosinophilic pneumonia. Yeah, we’ve certainly seen at least probably four forms of lung disease from vaping.

Q: If your team was seeing this back in 2015, is it possible that it’s been happening in the four years since then and people just don’t know about it?

I really have every reason to think we were not the first ones to see it, by any means.

And I don’t think we were even the first ones to report it. I think that there were some clusters in Wisconsin and some other places in the U.S. I also know that the Japanese have been very interested. They’ve probably got four or five papers at least in the medical literature about vaping related lung injury.

Q: Do you have a theory of what might be causing the lipoid pneumonia cases? Do you think there may be certain chemicals that are irritants?

We need a strong multidisciplinary team to understand the real etiology and cause of lung injury from inhalation. I think it could be any number of components in the mixtures. Lungs don’t like oil, in general, and probably the most specific agent that’s been studied recently is diacetyl, which was studied in popcorn-flavoring lung disease.

Q: Have these kinds of cases changed the way you approach patients?

Yeah, we search very carefully for a history of vaping. … I think it’s quite important to understand if they might be using inhaled agents or vaping that might present new toxicities to the lung.

Q: Will these illnesses have long-term health effects?

An inhalational injury may cause an acute lung injury that’s life-threatening and that someone may survive from and have no long-term sequelae [condition]. But there also is the possibility that long-term [e-cigarette] use may cause more insidious or chronic diseases from which there may not be a full recovery.

Categories: Health Care


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