Without congressional intervention, about 16,000 retired miners in seven states will lose their health care coverage by the end of the year.

A proposal to temporarily extend the benefits is working its way through Congress. But two Senate Democrats, who are advocates for a more comprehensive plan, say the temporary provision isn’t enough.

They are threatening to hold up a spending bill that needs to pass by Friday night to keep the government running.

Coal mining is dangerous work. For many miners, a government-backed promise of lifelong health care for them and their dependents made the risk worth taking.

Roger Merriman, 65, worked in the coal industry for 28 years.

“When we all started in the mines, we were promised health care for life – cradle to grave,” he says. Merriman’s employer, Patriot Coal, filed for bankruptcy in 2012, then again in 2015. He is now slated to lose his pension and benefits. Merriman says that possibility of losing health benefits for his wife, who is younger than he is (at 65, he qualifies for Medicare), and their pension, is devastating.

“We’ll have to make a choice of whether [we’re] going to the doctors and buying prescriptions or paying bills and eating. It’s a life and death situation realistically is what it is,” he says.

In 1946, the United Mine Workers of America and the U.S government agreed that union miners who put in 20 or more years would get lifelong pension and health benefits. Patriot is one of six major coal producers in the U.S. that has sought bankruptcy protection in the last few years, a process that often includes an attempt to drop retiree benefits.

After the Patriot bankruptcy in 2012, the UMWA negotiated a $400 million payment in bankruptcy court for retirees benefits. Existing companies pay into a UMWA fund for retirees, but as those mines close, there is less money going into the pot and the number of retired miners who are drawing from it is increasing. The fund is about to run out of money.

The UMWA’s hope was that the $400 million would give federal lawmakers the time they needed to pass legislation that would protect the miners.

Senate Democrats have been working for years to pass the Miners Protection Act — a bill that would move money from the Abandoned Mine Lands Reclamation Fund into a fund to pay for the pension and health care benefits of tens of thousands of coal miners and retirees.

West Virginia Sen. Joe Manchin, a Democrat, is frustrated by the benefits Band-Aid. “We’re asking for a permanent fix, we have a pay for for a permanent fix, it’s the excess that we have, the surplus in the AML money,” he said Tuesday on the Senate floor.

Manchin and colleague Sherrod Brown, D-Ohio, are trying to block a key government spending bill on the Senate floor until miners get their full health care and pension money.

“I haven’t ever used this tactic before, but I feel so compelled that I said we are going to do whatever we can to keep this promise,” he said Tuesday.

But the Miners Protection Act has met with resistance from Senate Republicans, who are wary of bailing out unionized workers.

Senate Majority Leader Mitch McConnell, R-Ky., proposed a temporary fix — tacking on $45 million taken from the existing UMWA fund to the continuing resolution that is needed to fund the federal government through April 2017.

The continuing resolution must be approved by Friday. Manchin and others are frustrated that it is only a solution for a few months and that it doesn’t include any money for pensions.

Critics of the Miners Protection Act say there are many struggling pension and benefits funds and that a government bailout sets a bad precedent.

This story is part of a reporting partnership with NPR, West Virginia Public Broadcasting and Kaiser Health News.

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The 21st Century Cures Act that gained congressional approval on Wednesday has been championed as a way to speed up drug development, but it’s also the most significant piece of mental health legislation since the 2008 law requiring equal insurance coverage for mental and physical health.

The bill includes provisions aimed at fighting the opioid epidemic, strengthens laws mandating parity for mental and physical health care and includes grants to increase the number of psychologists and psychiatrists, who are in short supply across the country.

It also would push states to provide early intervention for psychosis, a treatment program that has been hailed as one of the most promising mental health developments in decades.

“It is time to fix our broken mental health care system,” says Sen. Bill Cassidy, R-La., a physician whose mental health bill was folded into the 21st Century Cures Act.

Sen. Chris Murphy, D-Conn., who worked with Cassidy on the bill, says he hopes to alleviate the suffering of people with serious mental illness.

“I’d heard too many devastating stories of people struggling with serious mental illness and addiction whose lives were forever changed because they couldn’t get the care they need,” Murphy says. “I’d seen up close the heartbreak and frustration that families suffered trying to find care for a loved one — care that seemed impossible to find and even harder to pay for.”

But Rep. Frank Pallone, D-N.J., says he’s concerned that proposed Republican changes to the health care system could undercut any progress made by the bill. Millions of Americans with mental illness could lose coverage if Congress repeals the Affordable Care Act or cuts spending on Medicaid, which pays for about 25 percent of all mental health care, he says.

Many mental health advocates celebrated the bill’s passage.

Ronald Honberg, national director of policy and legal affairs at the National Alliance on Mental Illness, called the bill’s mental health provisions “necessary and promising.” He says he appreciates the bill’s focus on “preventing the most horrific consequences of untreated mental illness,” including homelessness, incarceration and suicide.

The bill generally requires states to use at least 10 percent of their mental health block grants on early intervention for psychosis, using a model called coordinated specialty care, which provides a team of specialists to provide psychotherapy, medication, education and support for patients’ families, as well as services to help young people stay in school or their jobs. Research from the National Institutes of Health shows that people who receive this kind of care stay in treatment longer; have greater improvement in their symptoms, personal relationships and quality of life; and are more involved in work or school compared to people who receive standard care.

The bill also sets up a $5 million grant program to provide assertive community treatment, one of the most successful strategies for helping people with serious mental illnesses such as schizophrenia. Like the early intervention program, assertive community treatment is designed to provide a team of professionals that is on call 24 hours a day. The bill also expands a grant program for assisted outpatient treatment, which provides court-ordered care for people with serious mental illness who might otherwise not seek help.

Although the bill authorizes these grants, a future Congress would have to approve funding for the programs. “The fact that a program has been authorized is no guarantee that it will be funded,” Honberg says. “It’s a necessary first step.”

Mental health advocates will lobby for Congress to approve funding for the most critical programs, Honberg says.

While funding treatments for mental illness is expensive, “it’s more expensive to ignore it,” says Rep. Eddie Bernice Johnson, D-Texas, who co-sponsored mental health legislation in the House that folded into the 21st Century Cures Act.

Other sections of the bill, based on legislation introduced by Sen. John Cornyn, R-Texas, give communities more flexibility in how they use federal grants. For example, communities could use community policing grants to train law enforcement officers to deal with patients in the midst of a psychiatric crisis. Another provision would require the U.S. attorney general to create at least one drug and mental health court pilot program, which would aim to help people with mental illness or drug addiction receive treatment, rather than jail time, after committing minor offenses.

The legislation will help “those suffering from mental illness in the criminal justice system can begin to recover and get the help they need instead of just getting sicker and sicker,” Cornyn says. “This bill also encourages the creation of crisis intervention teams, so that our law enforcement officers and first responders can know how to de-escalate dangerous confrontations. This is about finding ways to help the mentally ill individual get help while keeping the community safe at the same time.”

The mental health provisions have been scaled back significantly since they were first introduced.

An earlier version of a bill introduced in the House of Representatives would have changed a federal privacy law to allow doctors, under certain circumstances, to share mentally ill adults’ medical information with their family caregivers. Doctors today often shut families out of their loved one’s care, refusing to share even basic information, such as appointment times, for fear of violating the Health Insurance Portability and Accountability Act, or HIPAA.

Many health professionals misunderstand HIPAA, refusing to listen to the families of patients who are too disabled by psychosis to provide key details of their medical history, says Rep. Tim Murphy, R-Pa., who first introduced the House bill in 2013 in response to the shootings at Sandy Hook Elementary School in Newtown, Conn.

Some advocates for the disabled objected to that change, however, arguing that patient privacy is essential, and that people might avoid care if they believe their doctors might disclose confidential information.

The legislation instructs the secretary of the Department of Health and Human Services to clarify when doctors can share patients’ medical information with family caregivers, as well as educate health care providers about what the law actually says.

“It’s a step in the right direction,” Honberg says. “There is so much misinformation about HIPAA. It’s one of the most mischaracterized laws out there.”

The bill also aims to better coordinate mental health care. Although eight federal agencies today fund 112 programs that provide mental health care, these agencies rarely coordinate their efforts to make sure patients get the help they need and to avoid duplicating services, says Tim Murphy.

The bill would make structural changes to the way federal agencies provide mental health services:

• A new committee would link leaders of key agencies involved in mental health care, such as the Department of Veterans Affairs, the Department of Justice and the Substance Abuse and Mental Health Services Administration, or SAMHSA.
• A new position — the assistant secretary for mental health and substance use — would oversee SAMHSA and promote the most successful approaches to treating mental illness.
• An advisory board, the National Mental Health and Substance Use Policy Laboratory, would analyze treatments and services to help decide which ones should be expanded.

Chris Murphy said he wishes the final bill had included more resources for outpatient mental health care, as well as for inpatient hospital bills for people in psychiatric crisis. He also said the current bill provides a starting point but that he hopes Congress will continue working to improve mental health care in its next session.

“This doesn’t solve all the problems in the mental health system,” says Chris Murphy, noting that Congress may still need to change the HIPAA law to allow families to better care for people with mental illness. “We may still have to look at this down the line.”

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Before he went to prison, Ernest killed his 2-year-old daughter in the grip of a psychotic delusion. When the Indiana Department of Correction released him in 2015, he was terrified something awful might happen again.

He had to see a doctor. He had only a month’s worth of pills to control his delusions and mania. He was desperate for insurance coverage.

But the state failed to enroll him in Medicaid, although under the Affordable Care Act Indiana had expanded the health insurance program to include most ex-inmates. Left to navigate an unwieldy bureaucracy on his own, he came within days of running out of the pills that ground him in reality.

“I have a serious mental disorder, which is what caused me to commit my crime in the first place,” said Ernest, who asked reporters to use only his middle name to protect his privacy. “Somebody should have been pretty concerned.”

The health law was supposed to connect Ernest and almost all other ex-prisoners for the first time to Medicaid coverage for the poor, cutting expensive visits to the emergency room, improving their prospects of rejoining society and reducing the risk of spreading communicable diseases that flourish in prisons.

But Ernest’s experience is repeated millions of times across the country, an examination by The Marshall Project and Kaiser Health News shows.

Most of the state prison systems in the 31 states that expanded Medicaid have either not created large-scale enrollment programs or operate spotty programs that leave large numbers of exiting inmates — many of whom are chronically ill — without insurance.

Local jails processing millions of prisoners a year, many severely mentally ill, are doing an even poorer job of getting health coverage for ex-inmates, by many accounts. Jail enrollment is especially challenging because the average stay is less than a month and prisoners are often released unexpectedly.

Ex-inmates with the worst chances of getting insurance and care are in 19 states that did not expand Medicaid. Only a few qualify for coverage. Enrollment efforts by prisons and jails for them are almost nonexistent.

Nationally, some 375,000 inmates leave state prisons every year with minimal or nonexistent Medicaid signup programs, according to a survey by The Marshall Project.

Failure to link people leaving jail or prison to health insurance is a missed opportunity to improve health and save money on care, advocates say. Better care also helps by reducing recidivism. Studies show Medicaid access in Florida and Washington cut return trips to jail among the mentally ill by 16 percent.

Advocates for improved sign-ups argue, What better place to enroll people eligible for Medicaid than a building where they’re already assembled?

“I hate to say it — it’s a captive audience,” said Monica McCurdy, who as head of a clinic for Project HOME in Philadelphia sees homeless, recently released prisoners without Medicaid coverage. “You have somebody there! You know they’re going to be released in a few weeks. Why not do the handoff that’s needed to prevent this person winding up in the ER? It defies common sense.”

Health Risks Soar After Release

Before the Affordable Care Act, Medicaid covered mainly children, pregnant women and disabled adults, which included only a small number of ex-offenders. That’s still generally the case in the 19 states that didn’t expand Medicaid.

President-elect Donald Trump has vowed to repeal the health act and replace it with something else, leaving the law’s Medicaid expansion and eligibility for ex-prisoners in doubt. Rep. Tom Price, Trump’s pick to head the health and human services department — which oversees Medicaid — has been one of Congress’s most vociferous critics of Obamacare.

But some analysts expect parts of the law to survive, perhaps including Medicaid expansion managed more directly by states than by Washington.

Even some Republicans have supported the expansion of Medicaid, suggesting that revoking its coverage from millions of new recipients would be difficult. Republican Gov. John Kasich expanded Medicaid in Ohio in part for ex-inmates, he has said, “to get them their medication so they could lead a decent life.”

Other parts of the health law received more attention, but advocates saw giving Medicaid coverage to ex-inmates as one of its most transformative aspects. Illness for illness, inmates are the sickest people in the country.

They have far higher rates of HIV, hepatitis and tuberculosis than the general population. They’re also more likely to have high blood pressure, diabetes, and asthma. More than half are mentally ill, according to the Bureau of Justice Statistics, with up to a quarter meeting criteria for psychosis. Between half and three-quarters have an addiction problem.

Prisons and jails have their own doctors, but their responsibility to provide care stops upon an inmate’s departure. Inmates generally aren’t eligible for Medicaid while imprisoned.

No time is more critical than the days immediately after release. One study showed that in the first two weeks, ex-prisoners die at a dozen times the rate of the general population. Heart disease, drug overdose, homicide and suicide are the main causes.

But even in states that expanded Medicaid, the most vulnerable and sometimes dangerous ex-inmates are often left on their own.

Ernest went to prison for shooting and killing his daughter amid a psychotic religious delusion. Re-enacting the biblical story of the sacrifice of Isaac, he thought God would intervene to save the girl. News reports from the time say police found him naked, carrying the child’s lifeless body through the streets of an Indianapolis suburb.

Indiana expanded Medicaid under the health law in February 2015 and set up a system to enroll all eligible prisoners upon release. Yet when Ernest got out in August 2015, he was not enrolled in Medicaid, let alone connected to doctors.

Prison officials say they applied for Medicaid on Ernest’s behalf, but Medicaid records show he applied when he got home. It’s not clear where the system failed.

“It is important that the offenders have some accountability in the process,” said Douglas Garrison, a spokesperson for the Indiana Department of Correction. “The IDOC has worked diligently to ensure released offenders are receiving coverage.”

Ernest’s letters to Medicaid and a clinic before he got out didn’t help. He had to start the application process from scratch after he got home, making increasingly frantic calls and scrambling to find his birth certificate and other paperwork as his supply of lithium and perphenazine, an antipsychotic, dwindled.

“Somebody who’s committed a violent felony because of a mental illness is getting out of prison, and we don’t have anything set up yet?” said Ernest, whose Medicaid coverage was authorized a little more than a month after his release. He’s now living with his brother and looking for work.

Failure to sign up ex-inmates for health care are repeated every day in states that expanded Medicaid under the health law, even in places such as Indiana where agencies have provided enrollment assistance.

No Enrollment For Thousands Of Chronically Ill People

Two-thirds of the 9,000 chronically ill prisoners released each year by Philadelphia’s jails aren’t getting enrolled as they leave, said Bruce Herdman, medical director for the jails. The city also lacks the $2 million necessary to supply a month’s worth of medication for released inmates with prescriptions, he said.

“They give you like two weeks’ supply of medication,” said Ricky Platt, 49, who left the Philadelphia jail in 2015, quickly ran out of Zoloft, an antidepressant, and became homeless. “They don’t give you any resource of where to go or get a doctor and get your prescription filled or anything.”

Emergency doctors at Thomas Jefferson University Hospital in Philadelphia often see released inmates with kidney failure who are at risk of dying if they don’t receive dialysis almost immediately, said Dr. Priya Mammen, one of the hospital’s emergency physicians.

“We’re kind of the go-to spot for many people, but particularly for people who have been released from prison,” she said. “Either in the first week we see them or when their prescriptions run out.”

Kara Salim, 26, got out of the Marion County, Indiana, jail in 2015 with a history of domestic-violence charges, bipolar disorder and alcoholism — and without Medicaid coverage. As a result, she couldn’t afford the fees for court-ordered therapy.

Without therapy she wasn’t allowed to see a psychiatrist for her medications. Without medication she spiraled downward, eventually threatening suicide at a court hearing. When court officers tried to bring her to a psychiatric hospital, she erupted, kicking and scratching them and landing back in jail, with new felony charges: battery against a public safety officer.

“I wish I could tell you she’s the exception,” said Sarah Barham, an addiction counselor with Centerstone, a nonprofit that provides behavioral health services in Indiana.

Medicaid enrollment requires resources that many prison systems and local jails — often overcrowded and operating in crisis mode for years — lack or have been reluctant to commit.

“Most of the county sheriffs don’t have the proper staff they need to even run the jails,” said Bill Wilson of the Indiana Sheriffs’ Association. Many jails are making an effort, but in some places “pulling the resources out to enroll an inmate in Medicaid is not something the sheriff’s able to do.”

Seven states — Minnesota, Alaska, Hawaii, Arizona, Montana, Louisiana, and Illinois — expanded Medicaid but have not implemented a large-scale enrollment program.

In many states, even successful prerelease registration requires a follow-up visit to a local Medicaid or welfare office to activate the coverage on release. Obtaining a phone, paying for minutes and navigating bus lines to state offices can be daunting for newly released inmates, who often struggle with basic needs such as food and shelter.

Indiana officials applied for Medicaid on behalf of more than 7,000 state prisoners from March through September — nearly 90 percent of those released. (Many of the others were released to other states or deported, officials said.) Yet only a little more than half called to activate their coverage when they got home, according to state data. The state says in recent weeks it eliminated the requirement to activate coverage with a call.

William Santee, 46, released from Pennsylvania state prison this year, has diabetes, high cholesterol and high blood pressure. He learned about Medicaid enrollment requirements and the need to visit a welfare office from workers at a homeless shelter.

The prison “didn’t tell me about where to go or anything like that,” he said. “They don’t consider that their responsibility.” Waiting in line and completing the welfare-office paperwork took five hours.

Getting The Details Right

Almost as critical as successful enrollment is choosing a Medicaid plan that covers medicines and services ex-inmates need. Jail and prison workers are rarely equipped to wade through such details.

“That’s a huge issue for us,” said Susan Jo Thomas of Covering Kids and Families, a nonprofit that helps enroll people in Medicaid in Indiana. “You finally get a person to the place they are ready to make the decision to go into detox, but if they have aligned with an insurance company that doesn’t cover the medicine that program uses, then you have a problem.”

A few states and localities reap praise for innovative and comprehensive attempts to enroll emerging prisoners in Medicaid.

Ohio recently finished phasing in Medicaid registration at all state prisons and is one of the few states giving inmates a managed care insurance card as they leave, said John McCarthy, that state’s Medicaid director. Chicago’s huge Cook County jail puts prisoners on the Medicaid books as they enter, rather than before they leave, to sidestep the common problem in jails of unpredictable release dates.

More often the process looks like what was happening one recent Friday in Indiana’s Marion County jail, where Lt. Debbie Sullivan was trying to rouse sleepy women to sign up for health insurance.

The document she distributed was three pages long, authorizing a Medicaid application on inmates’ behalf. It asked for names, addresses, birth dates and Social Security numbers. The handwritten information would later be entered into computers — a recipe for transposed digits and misspelled names.

“The program remains a work in progress,” said Katie Carlson, a spokeswoman for the Marion County Sherriff’s Office, which runs the jail. “It has proven a daunting task to enroll, track and provide meaningful information on both Medicaid and health care.”

Such sessions require a half-hour or more, so inmates can get the details right, pick the right plan and learn how to follow up with doctors and insurance officials after release.

Sullivan’s knowledge of the women’s next steps was minimal. In response to questions, she simply told them to contact their local social service office when they get out. She walked out of the block with about 30 signed applications. It was over in 15 minutes.

“Thank you ladies!” she called on her way out, as the heavy steel door slammed behind her.

Marshall Project interns Deonna Anderson, Josiah Bates, Jonathan Gomez and Rachel Siegel contributed research to this article.

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The high-stakes fight over who invented a technology that could revolutionize medicine and agriculture heads to a courtroom Tuesday.

A gene-editing technology called CRISPR-cas9 could be worth billions of dollars. But it’s not clear who owns the idea.

U.S. patent judges will hear oral arguments to help untangle this issue, which has far more at stake than your garden-variety patent dispute.

“This is arguably the biggest biotechnology breakthrough in the past 30 or 40 years, and controlling who owns the foundational intellectual property behind that is consequentially pretty important,” says Jacob Sherkow, a professor at the New York Law College.

The CRISPR-cas9 technology allows scientists to make precise edits in DNA, and that ability could lead to whole new medical therapies, research tools and even new crop varieties.

“Part of what makes it such a fun spectator sport is the amount of money that’s at stake,” says Robert Underwood, at the Boston law firm McDermott Will & Emery. “These could potentially be the most valuable biotech patents ever.”

The dispute pits high-prestige universities and well-regarded scientists against one another.

On one side of the dispute are research collaborators Jennifer Doudna at the University of California, Berkeley and her European colleague Emmanuelle Charpentier (currently at the Max Planck Institute for Infection Biology in Berlin).

“When they filed their patent application [in 2012], they did a great job disclosing how to use CRISPR for bacteria, but were a little lighter on details about how to use CRISPR in the cells of higher organisms” such as human cells, Sherkow says.

“Later in 2012, Feng Zhang at the Broad Institute at MIT and Harvard files his patent application that gives a pretty detailed description about how to use CRISPR in the cells of higher organisms,” Sherkow continues.

And since the most important use of the technology is its ability to edit DNA in higher organisms, the real battle is over who can claim that invention.

Zhang’s patent went through the process faster, so it was issued first. But when the Berkeley patent came up for a decision, that created what’s known in patent parlance as an “interference.” So now the patent office needs to sort out exactly what the invention is and who invented it first.

“The dispute largely does appear like a winner-take-all affair,” Sherkow says.

But the patent court could decide that there are distinct inventions, each meriting its own patents.

Or it could decide that it’s not patentable at all, for various reasons.

“The other thing that could happen is the patents could be made moot by other discoveries,” says Anette Breindl, senior science editor at the trade journal BioWorld. “I’m sure the existing patents are written to be broad, but there could be new discoveries that just get around those patents.”

The stakes are enormous. Breindl says three companies built around these patents already have a billion dollars of investment behind them, and a fourth company has a stake in the technology that could be worth $2 billion.

The scientists themselves stand to gain a great deal — and so do their universities, which are listed on the patents as well.

Robert Cook Deegan, at Arizona State University’s School for the Future of Innovation in Society, says regardless of how this legal battle comes out, academic researchers can still use the CRISPR technology without worrying about ownership rights, “but if you’re doing any research that might eventually be commercially valuable well, then you’ve got a problem.”

Those researchers would need to license the technology’s rightful owner, whoever that ends up being, “and the concern is how many licenses you’re going to have to pick up, and if there’s going to be one dominant patent that everybody has to license from a particular firm,” he says.

Some companies have already placed their bets, and they’ve licensed the right to use CRISPR from one or the other of the companies involved in the patent battle. If that patent evaporates, Underwood says, “I don’t think you’d get your money back.”

And any inventions based on the patent wouldn’t be protected, or possibly legal to sell. So companies in this field are anxiously awaiting the outcome of the patent dispute. Tuesday’s hearing is just one step in a process that’s likely to last through 2017.

In court, the two sides are expected to give brief answers to questions from the patent judges and jockey for position, trying to get the case framed in the way most favorable to their interests.

“Whatever the resolution is, if there’s no settlement, we can expect appeals that will last for years,” he says.

And, on top of the patent dispute, scientists widely assume that CRISPR will earn Nobel Prizes for the scientists who are ultimately recognized as the inventors of this transformative technology.

You can email Richard Harris at rharris@npr.org.

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The brilliantly-colored shapes reminded Carol Vincent of fluorescent deep-sea creatures, and they floated past her languidly. She was overwhelmed by their beauty — and then suddenly, as if in a dream, she was out somewhere in deep space instead. “Oh, wow,” she thought, overwhelmed all over again. She had been an amateur skydiver in her youth, but this sensation didn’t come with any sense of speeding or falling or even having a body at all. She was just hovering there, gazing at the universe.

Vincent was having a psychedelic experience, taking part in one of the two studies just published that look at whether cancer patients like her could overcome their death-related anxiety and depression with a single dose of psilocybin.

It turned out they could, according to the studies, conducted at New York University and Johns Hopkins and reported this week in the Journal of Psychopharmacology. NYU and Hopkins scientists gave synthetic psilocybin, the hallucinogenic component of “magic mushrooms,” to a combined total of 80 people with advanced cancer suffering from depression, anxiety, and “existential angst.” At follow-up six months or more later, two-thirds of the subjects said their anxiety and depression had pretty much disappeared after a single dose.

And about 80 percent said the psilocybin experience was “among the most personally meaningful of their lives,” Roland Griffiths, a professor of psychiatry and leader of the Hopkins team, said in an interview.

That’s how it was for Vincent, one of the volunteers in Griffiths’ study. By the time she found her way to Hopkins in 2014, Vincent, now 61, had been living for six years with a time bomb of a diagnosis: follicular non-Hodgkin’s lymphoma, which she was told was incurable. It was asymptomatic at the time except for a few enlarged lymph nodes, but was expected to start growing at some undefined future date; when it did, Vincent would have to start chemotherapy just to keep it in check. By 2014, still symptom-free, Vincent had grown moderately anxious, depressed, and wary, on continual high alert for signs that the cancer growth had finally begun.

“The anvil over your head, the constant surveillance of your health — it takes a toll,” says Vincent, who owns an advertising agency in Victoria, British Columbia. She found herself thinking, “What’s the point of this? All I’m doing is waiting for the lymphoma. There was no sense of being able to look forward to something.” When she wasn’t worrying about her cancer, she was worrying about her son, then in his mid-20s and going through a difficult time. What would happen to him if she died?

Participating in the psilocybin study, she says, was the first thing she’d looked forward to in years.

The experiment involved two treatments with psilocybin, roughly one month apart — one at a dose high enough to bring on a markedly altered state of consciousness, the other at a very low dose to serve as a control. It’s difficult to design an experiment like this to compare treatment with an actual placebo, since it’s obvious to everyone when a psychedelic experience is underway.

The NYU study used a design similar to Hopkins’ but with an “active placebo,” the B vitamin niacin, instead of very-low-dose psilocybin as the control. Niacin speeds up heart rate but doesn’t have any psychedelic effect. In both studies it was random whether a volunteer got the dose or the control first, but everyone got both, and the order seemed to make no difference in the outcome.

Vincent had to travel from her home in Victoria to Baltimore for the sessions; her travel costs were covered by the Heffter Research Institute, the New Mexico nonprofit that funded both studies. She spent the day before each treatment with the two Hopkins staffers who would be her “guides” during the psilocybin trip. They helped her anticipate some of the emotional issues — the kind of baggage everyone has — that might come to the fore during the experience.

The guides told Vincent that she might encounter some hallucinations that were frightening, and that she shouldn’t try to run away from them. “If you see scary stuff,” they told her, “just open up and walk right in.”

They repeated that line the following day — “just open up and walk right in” — when Vincent returned to Hopkins at 9 a.m., having eaten a light breakfast. The treatment took place in a hospital room designed to feel as homey as possible. “It felt like your first apartment after college, circa 1970,” she says, with a beige couch, a couple of armchairs and some abstract art on the wall.

Vincent was given the pill in a ceramic chalice, and in about 20 minutes she started to feel woozy. She lay down on the couch, put on some eye shades and headphones to block out exterior sights and sounds, and focused on what was happening inside her head. The headphones delivered a carefully-chosen playlist of Western classical music, from Bach and Beethoven to Barber’s “Adagio for Strings,” interspersed with some sitar music and Buddhist chants. Vincent recalled the music as mostly soothing or uplifting, though occasionally there were some brooding pieces in a minor key that led her images to a darker place.

With the music as background, Vincent started to experience a sequence of vivid hallucinations that took her from the deep sea to vast outer space. Listening to her describe it is like listening to anyone describe a dream — it’s a disjointed series of scenes, for which the intensity and meaning can be hard to convey.

She remembered seeing neon geometric shapes, a gold shield spelling out the name Jesus, a whole series of cartoon characters — a fish, a rabbit, a horse, a pirate ship, a castle, a crab, a superhero in a cape — and at some point she entered a crystal cave encrusted with prisms. “It was crazy how overwhelmed by the beauty I was,” she says, sometimes to the point of weeping. “Everything I was looking at was so spectacular.”

At one point she heard herself laughing in her son’s voice, in her brother’s voice, and in the voices of other family members. The cartoon characters kept appearing in the midst of all that spectacular beauty, especially the “comical crab” that emerged two more times. She saw a frightening black vault, which she thought might contain something terrifying. But remembering her guides’ advice to “just open up and walk right in,” she investigated, and found that the only thing inside it was herself.

When the experience was over, about six hours after it began, the guides sent Vincent back to the hotel with her son, who had accompanied her to Baltimore, and asked her to write down what she’d visualized and what she thought about it.

Griffiths had at first been worried about giving psychedelics to cancer patients like Vincent, fearing they might actually become even more afraid of death by taking “a look into the existential void.”

But even though some research participants did have moments of panic in which they thought they were losing their minds or were about to die, he said the guides were always able to settle them down, and never had to resort to the antipsychotic drugs they had on hand for emergencies. (The NYU guides never had to use theirs, either.)

Many subjects came away feeling uplifted, Griffiths says, talking about “a sense of unity,” feeling part of “an interconnected whole.” He adds that even people who are atheists, as Vincent is, described the feeling as precious, meaningful or even sacred.

The reasons for the power and persistence of psilocybin’s impact are still “a big mystery,” according to Griffiths. “That’s what makes this research, frankly, so exciting,” he says. “There’s so much that’s unknown, and it holds the promise for really understanding the nature of human meaning-making and consciousness.”

He says he looks forward to using psilocybin in other patient populations, not just people with terminal diagnoses, to help answer larger existential questions that are “so critical to our experience as human organisms.”

Two and a half years after the psychedelic experience, Carol Vincent is still symptom-free, but she’s not as terrified of the “anvil” hanging over her, no longer waiting in dread for the cancer to show itself. “I didn’t get answers to questions like, ‘Where are you, God?’ or ‘Why did I get cancer?’ ” she says. What she got instead, she says, was the realization that all the fears and worries that “take up so much of my mental real estate” turn out to be “really insignificant” in the context of the big picture of the universe.

This insight was heightened by one small detail of her psilocybin trip, which has stayed with her all this time: that little cartoon crab that floated into her vision along with the other animated characters.

“I saw that crab three times,” Vincent says. The crab, she later realized, is the astrological sign of cancer — the disease that terrified her, and also the sign that both her son and her mother were born under. These were the three things in her life that she cared about, and worried over, most deeply, she says. “And here they were, appearing as comic relief.”

Science writer Robin Marantz Henig is a contributing writer for The New York Times Magazine and the author of nine books.

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A sprawling health bill expected to pass the Senate, gain President Obama’s signature and become law before the end of the year is a grab bag for industries, academic institutions and patient groups that spent oodles of time and money lobbying to advance their interests.

Who wins and who loses?

Here’s the rundown of what’s at stake in the 21st Century Cures Act:

Winners

Pharmaceutical and Medical Device Companies

The law would likely save drug and device companies billions of dollars when it comes to bringing products to market by giving the Food and Drug Administration more discretion in the kinds of studies required to evaluate new devices and medicines for approval.

The changes represent a massive lobbying effort by 58 pharmaceutical companies, 24 device companies and 26 biotech companies, according to a Kaiser Health News analysis of lobbying data compiled by the Center for Responsive Politics. The groups reported more than $192 million in lobbying expenses on the Cures Act and other legislative priorities, the analysis shows.

Medical schools, hospitals and doctors

The law would provide $4.8 billion over 10 years in additional funding to National Institutes of Health, the federal government’s main biomedical research organization. (The funds aren’t guaranteed, however, and would be subject to annual appropriations.)

The money could help researchers at universities and medical centers get hundreds of millions more dollars in research grants, most of it toward research on cancer, neuroscience and genetic medicine.

The bill attracted lobbying activity from more than 60 schools, 36 hospitals and several dozen groups representing physician organizations. They reported spending more than $120 million in lobbying disclosures that included the Cures Act.

Advocates for mental health and substance abuse treatment

The law would provide $1 billion in state grants over two years to address opioid abuse and addiction. While most of that money would go to treatment facilities, some would fund research.

The Cures Act would also boost funding for mental health research and treatment, with hundreds of millions of dollars authorized for dozens of existing and new programs.

Mental health, psychology and psychiatry groups spent $1.8 million on lobbying disclosures that included the Cures Act as an issue.

Patient groups

Groups focused on specific diseases and patient advocacy generally supported the legislation and lobbied vigorously for it. Many of these groups get a portion of their funding from drug and device companies. The bill includes more patient input in the drug development and approval process, and if it becomes law would boost the clout of such groups.

More than two dozen patient groups reported spending $6.4 million in disclosures that named the bill as one of their issues.

Health information technology and software companies

The law would push federal agencies and health providers nationwide to use electronic health records systems and to collect data to enhance research and treatment. Although the Cures Act wouldn’t specifically fund the effort, IT and data management companies could gain millions of dollars in new business.

More than a dozen computer, software and telecom companies reported Cures Act lobbying. The groups’ total lobbying spending was $35 million on it and other legislation.

Losers

Public health

The Cures Act would cut $3.5 billion — about 30 percent — from the Prevention and Public Health Fund established under Obamacare to promote prevention of Alzheimer’s disease, hospital acquired infections, chronic illnesses and other ailments.

Consumer and patient safety groups

Groups like Public Citizen and the National Center for Health Research either fought the bill outright or sought substantial changes. Although they won on some points, these groups still say the Cures Act opens the door for unsafe drug and device approvals and doesn’t address rising drug costs.

Medicaid patients seeking hair growth

The act says Medicaid would no longer help pay for drugs that help patients restore hair. The National Alopecia Areata Foundation spent $40,000 on lobbying disclosures this cycle that included the Cures Act.

Food and Drug Administration

The law would gives FDA an additional $500 million through 2026 and more hiring power, but critics say it isn’t enough to cover the additional workload under the bill. The agency also would get something it has opposed: renewal of a controversial voucher program that rewards companies for getting drugs approved to treat rare pediatric diseases.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.

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The number of people who have trouble paying their medical bills has plummeted in the last five years as more people have gained health insurance through the Affordable Care Act and gotten jobs as the economy has improved.

A report from the National Center for Health Statistics released Wednesday shows that the number of people whose families are struggling to pay medical bills fell by 22 percent, or 13 million people, in the last five years.

And that’s good news, according to consumer and health policy advocates.

“The effect on families is profound,” says Lynn Quincy, director of the Healthcare Value Hub at the Consumers Union. “Health care costs are a top financial concern for families, far above other financial concerns.”

Quincy says the number one determinant of whether people can pay medical bills is whether they have insurance.

“The fact that this report shows it’s getting easier, it seems like we should lay a good part of this at the door of the ACA,” she says.

The decline in families worrying about medical bills corresponds with a huge increase in the number of people who have health insurance. In 2011, 46.3 million in the U.S. were uninsured. In June of this year, that figure had fallen to 28.4 million people.

Much of that increase is due to the Affordable Care Act, whose insurance exchanges were launched in 2013 for coverage starting in 2014.

About 20 million people this year have health insurance because of the ACA, according to the Department of Health and Human Services. That includes about 10 million people who gained coverage through the expansion of Medicaid and another 10 million who buy insurance on the Obamacare exchanges or are young adults covered through their parents’ insurance.

Kevin Lucia, a research professor at Georgetown’s Health Policy Institute, says the insurance offered under Obamacare has more financial protections than pre-ACA policies.

“The coverage is more protective in many ways,” he says. “It doesn’t include annual limits [or] lifetime limits, and it includes a comprehensive benefit package. That may be contributing to the improved data.”

Some of the relief could also come because more people have jobs, so they can more easily pay their bills.

The unemployment rate has fallen from 9.1 percent in January 2011 to just 4.9 percent in June, according to the Bureau of Labor Statistics.

The finding that people are having an easier time paying medical bills may seem surprising because of reports that insurance premiums and cost-sharing have been rising in recent years.

A report in September by the Kaiser Family Foundation shows that more and more companies are offering their employees health insurance plans that carry higher deductibles.

But Quincy says simply having coverage is the key.

“People speak loudest when they are faced with increasing deductibles and increase cost sharing,” she says. “But nothing determines the affordability of care than that binary equation: Do you have coverage or do you not?”

The report comes just as President-elect Donald Trump is naming officials to his health policy team who are determined to dismantle the Affordable Care Act. Trump has pledged to repeal and replace the health law, and on Tuesday named Rep. Tom Price, R-Georgia, a vocal opponent of Obamacare, to lead the Department of Health and Human Services.

Repealing the law would hurt the people who are seeing relief from high medical bills as highlighted in this report, says Jay Angoff, a former Missouri insurance commissioner who helped implement the Affordable Care Act at HHS.

“There are millions of people who have coverage under Obamacare,” Angoff says. “What are they going to tell those guys?”

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