It took several months and a team of half a dozen doctors, nurses and therapists to help Kim Brown taper off the opioid painkillers she’d been on for two years.

Brown, 57, had been taking the pills since a back injury in 2010. It wasn’t until she met Dr. Dennis McManus, a neurologist who specializes in managing pain without drugs, that she learned she had some control over her pain.

“That’s when life changed,” she said.

During a 12-week series of appointments at McManus’ clinic in Peoria, Ill., Brown learned new ways to prevent and cope with pain, as she gradually reduced her opioid doses.

Roughly a third of Americans live with chronic pain, and many of them become dependent on opioids prescribed to treat it. But there’s a growing consensus among pain specialists that a low-tech approach focused on lifestyle changes can be more effective.

This kind of treatment can be more expensive — and less convenient — than a bottle of pills. But pain experts say it can save money over the long term by helping patients get off addictive medications and improving their quality of life.

“It’s important to remember that the main treatments that are recommended for these pain conditions are not medication treatments,” said Dr. Erin Krebs, a primary care physician and researcher at the Minneapolis VA Health Care System.

Recently, Krebs published the first long-term randomized trial of opioids for treating chronic back pain and arthritis, and found that opioids are no better than nonopioid medications. She said drugs of any kind are the lesser choice for the vast majority of patients.

The gold standard for treatment, she said, is a combination of things like exercise, rehabilitation therapies, yoga and cognitive behavioral therapies.

This approach is consistent with the most recent guidelines from the Centers for Disease Control and Prevention for prescribing opioids for chronic pain. But it’s still uncommon.

Brown’s painkiller use started after she blew out a disk in her back.

“It was the simplest thing,” Brown said. “I picked up a bag of garbage with my right hand, and I immediately knew something was wrong.”

She was put on opioids, like so many others who see the doctor about pain. In a single year, health care providers write enough opioid prescriptions for every adult in the U.S. to have a bottle of pills.

Each time Brown came back, still in pain, another opioid was added to the list. She was eventually taking four different drugs — Percocet, Vicodin, morphine and Dilaudid — popping pills every two hours.

“I was just drugged constantly,” Brown said. “And even with that, it didn’t take care of the pain.”

Not only did the drugs not help with the pain, the side effects made it worse. Brown had such severe abdominal pain from constipation she could hardly walk.

“It kills your life. It totally robs you of every aspect,” she said. “I couldn’t do anything because of the pain. But I couldn’t do anything because of the pain meds. And I couldn’t talk to anyone about it, because it was so embarrassing.”

Brown tried to quit on her own. But after nine days of nausea and fainting from withdrawal, she was back on the medications.

“I finally went to my family doctor and said, ‘I need help, I’ve got to get off this stuff. I can’t live like this anymore,’ ” she said.

That’s when she was referred to McManus, director of the OSF Central Illinois Pain Center in Peoria. He specializes in helping chronic pain sufferers like Brown get off opioids.

“From my perspective, if you stabilize the dose and slowly taper off, these patients do remarkably well,” he said.

At the center, a team of providers works together to help patients make lifestyle changes that reduce pain during everyday activities.

The approach includes a combination of physical and occupational therapy, massage and nutrition counseling. Patients also participate in cognitive behavioral therapy to address the psychological issues that often accompany pain — such as overcoming fears of letting go of medications they’ve become dependent on. A nurse coordinator oversees all the moving parts and does follow-up assessments after the program is completed.

At the clinic, Brown met occupational therapist Gabe Stickling, who taught her things like how to properly lift heavy objects and how to safely keep exercising even when she feels a twinge of pain.

Stickling said people with chronic pain often avoid physical activity “because they’re afraid they’re going to injure themselves or damage their bodies.” But inactivity can make the pain worse.

McManus said some of his chronic pain patients can taper off opioids with a less intensive treatment. But for some of his patients, the multidisciplinary program is most effective — if they’re willing to commit to making change.

“Most people just really want to have the magic wand that will get them all better,” he said. “And I’m just trying to say, I don’t have a magic wand but I might have a way out of this jungle that you’re in.”

And because pain treatments that don’t rely on drugs are hands-on and time-intensive, it can be hard to find a clinic that offers them — and to get insurance to cover them.

This wasn’t always the case. Until the 1980s, the multidisciplinary approach was the go-to treatment for chronic pain, according to a 2016 review on the history of chronic pain management. Its popularity declined as reimbursement rates went down and hospitals began to emphasize more lucrative procedures. Gradually, opioid treatment became the predominant strategy for pain treatment strategy.

Today, McManus said his practice spends a lot of time fighting to get the treatments covered. “The pain program is not considered to be worthy of the price,” McManus said.

Costs vary but run to several thousand dollars for a program like the one Kim Brown went through.

“If you compare a fairly intensive multidisciplinary program to surgery and to drugs, the cost is not high,” said Steven Kamper, a public health researcher at the University of Sydney in Australia. He’s co-author of a 2014 meta-analysis that found modest benefits for multidisciplinary treatment programs for chronic low back pain.

Kamper said, the costs are reasonable especially if you consider the long-term effects of living in pain. Many chronic pain sufferers are unable to work and become eligible for disability insurance.

“The big costs of chronic pain are in productivity losses,” Kamper said.

Krebs is hopeful non-drug therapies will regain popularity, as communities recognize the hidden costs of opioids.

“It’s not just the price of the pills,” she said. “It’s also the price of the consequences when you over-rely on something.”

Krebs and Kamper agree more research into pain treatment is needed. But when choosing between an addictive medication with no evidence of benefit, and low-tech therapies with some evidence of benefits, McManus said the choice is clear.

“I did take an oath: First do no harm,” McManus said. “As a pain physician, I have a responsibility to use evidence-based medicine to manage my patients that have chronic pain.”

Brown is thankful that the multidisciplinary approach helped her taper off opioids and get her life back, even though it’s a different life than before her injury.

“There’s no such thing as a pain-free day for me,” Brown said. “It never, never fully goes away.”

She has just learned how to manage life with it.

This story was produced by Side Effects Public Media, a news collaborative covering public health. You can follow Christine Herman on Twitter: @CTHerman.

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As opioid-related deaths have continued to climb, naloxone, a drug that can reverse overdoses, has become an important part of the public health response.

When people overdosing struggle to breathe, naloxone can restore normal breathing and save their lives. But the drug has to be given quickly.

On Thursday, U.S. Surgeon General Jerome Adams issued an advisory that encouraged more people to routinely carry naloxone.

“The call to action is to recognize if you’re at risk,” he tells Morning Edition‘s Rachel Martin. “And if you or a loved one are at risk, keep within reach, know how to use naloxone.”

Police officers and EMTs often have naloxone at the ready. Access to the drug for the general public has been eased in the past few years, too.

The medicine is now available at retail pharmacies in most states without a prescription. Between 2013 and 2015, researchers found a tenfold increase in naloxone sold by retail pharmacies in the U.S.

But prices have increased along with demand. Naloxone-filled syringes that used to cost $6 a piece now cost $30 and up. A two-pack of naloxone nasal spray can cost $135 or more. And a two-pack of automatic naloxone injectors runs more than $3,700.

And while it’s true that naloxone can prevent many opioid-related deaths, it doesn’t solve the root cause of the problem.

So where does this fit into an overall strategy for tackling the opioid crisis?

NPR’s Martin asked Surgeon General Adams about the advisory, and the administration’s broader plan for addressing the opioid epidemic.

Here are interview highlights that have been edited for length and clarity.

On keeping naloxone at home, and using it effectively

We should think of naloxone like an EpiPen or CPR. Unfortunately, over half of the overdoses that are occurring are occurring in homes, so we want everyone to be armed to respond.

We’re working with pharmacies, providers and medical associations to increase training on how to administer naloxone in homes. But overall — and I’m an anesthesiologist who’s administered naloxone many times myself — it’s very safe, easy to use, and 49 of 50 states have standing orders for people to be able to access and to use [naloxone] in the home setting.

On making sure someone treated with naloxone doesn’t overdose again in short order

When a person is having multiple overdoses, I see that as a system failure. We know addiction is a chronic disease, much like diabetes or hypertension, and we need to treat it the same way. We can’t have someone overdose and send them back out onto the streets at 2 a.m., because they’re going to run right back into the hands of the local drug dealer.

If you come in at 3 a.m., having been resuscitated from an overdose, we need to have either an immediate access to treatment available for you, or, what’s working well in many places is a peer recovery coach — someone who’s been through this before and who can speak to you in a language that will resonate, and basically can be with you until you’re in recovery. Those are the kind of systemic changes we need to make sure naloxone is a touch point that leads to recovery.

On pricing and availability of naloxone

President Trump has asked for, and Congress has approved, $6 billion in funding to respond to the opioid epidemic. There are different grants available for states to purchase naloxone, which they can give out for free.

We’re also working with insurers. Ninety-five percent of people with insurance coverage, including Medicare, Medicaid, Tricare and Veterans
Affairs are actually able to get naloxone with little or no copay, and we’re working with them to make that copay as small as possible.

We’re also working with Adapt Pharma and Kaleo [two makers of naloxone available in the U.S.] to try to keep costs low. From an economic point of view, unfortunately, there are so many people who need naloxone that drug companies are going to make their money one way or the other.

On the role of law enforcement in combating the opioid crisis

We are not going to solve this crisis without the involvement of law enforcement. I can also tell you, from visiting many communities, that folks are concerned about public safety aspects. One neighbor is concerned their son is overdosing while another other neighbor is worried their house is getting broken into.

I’m focused on meeting with the attorneys general and meeting with local law officials and making sure that if you’re dealing drugs, you’re going to go to jail. But if you have a substance use disorder, we’re going to give you an option to get treatment, and hopefully become a productive member of society again.

On where federal funding can help

This starts with naloxone — saving lives is one of the president’s key pillars — and then using it as a bridge for treatment. Fifty-million dollars in funding has been allocated specifically for naloxone, and states are eligible for $2 billion dollars in block grants that they can use however they like.

If we can spend money on prevention and more treatment options, making sure we’re providing wrap-around services, I think we’ll find ourselves in a good place. I continue to impress upon folks the importance of partnering, making sure that law enforcement is sitting down with health and education so they all put their money together on a local level. At the end of the day, unfortunately, there will never be enough money in the federal government to do everything that we want to do.

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Federal health officials say a network they set up last year to identify deadly “nightmare bacteria” is helping control these germs, but the system would be more effective if more hospitals and doctors participated.

A new study from the Centers for Disease Control and Prevention focuses on particularly odious germs that live primarily in the gut and cannot be killed with “antibiotics of last resort,” called carbapenems.

CDC Deputy Director Dr. Anne Schuchat calls them “nightmare bacteria” because “they are virtually untreatable.” As many as half of patients with these infections die, she says.

These bacteria are known as “enterobacteriaceae,” and can include E. coli, Klebsiella, and Enterobacter. They can cause urinary tract infections and sepsis. They normally respond to antibiotics unless they have taken up a trait that causes drug resistance.

The CDC identified more than 1,400 people who tested positive for these kinds of germs last year, including 221 who harbored newer, rare variants that have not yet spread across the country. They are most often found in people who have spent time in nursing homes and hospitals.

One form of resistance, known as KPC, has already spread widely throughout the U.S. since it was first isolated in North Carolina back in 2001. But the CDC is trying to prevent four other strains, which have cropped up in isolated pockets, from taking hold.

As part of that effort, in January 2017 the CDC established a nationwide network of labs to make it easier and faster to identify these killer bacteria. The CDC now reports that the first nine months of that effort were successful, though they turned up more of these rare germs than Schuchat expected.

“These rare resistance patterns were widespread,” she tells NPR. “Basically no age, race or gender was spared.”

But detecting these rare germs also presents an opportunity. Once a case is detected, the CDC, along with state and local health officials, can swoop in and reduce the chance that these germs will spread. Infection control measures in nursing homes and hospitals can be ramped up. Medical personnel and family members who have been in close contact with these patients can be tested rapidly to see if they are also carrying the dangerous bacteria.

“Because of the additional testing capacity that we have, we have found a lot of these scary bacteria around the country but we’ve found them in ones and twos and not everywhere,” Schuchat says. “So there’s a chance to keep them from becoming widespread.”

That effort appears to be working. The percentage of bacteria carrying these potentially deadly drug-resistance features is on the decline, according to the CDC’s new “Vital Signs” report in Morbidity and Mortality Weekly Report.

The CDC is publicizing these efforts in order to encourage more doctors and hospitals to send their samples along to state testing labs or one of the seven labs that the CDC has established to run these samples quickly.

And, despite gains in the United States, the problem is growing rapidly worse elsewhere in the world. The use – and misuse – of antibiotics is increasing quickly, especially in countries without the latest medical care.

“We have to be doing this not only in the U.S. but across the world because this problem is definitely worldwide,” says Dr. Jason Newland, a pediatrician at Washington University in St. Louis and a spokesman for the Infectious Diseases Society of America.

Indeed, at least some of the cases the CDC identified were among people who had surgery overseas and got ill once they returned home.

“So if you have had a healthcare procedure outside the country, you should tell your doctor that, if you’re sick,” Schuchat advises.

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Every week in Murfreesboro, Tenn., Zibin Guo guides veterans in wheelchairs through slow-motion tai chi poses as a Bluetooth speaker plays soothing instrumental music.

“Cloudy hands to the right, cloudy hands to the left,” he tells them. “Now we’re going to open your arms, grab the wheels and 180-degree turn.”

The participants swivel about-face and continue to the next pose. Guo, a medical anthropologist at the University of Tennessee at Chattanooga, has modified his tai chi to work from a seated position. Even though many of the participants are not wheelchair-bound, using the mobile chairs makes it easier for them to get through a half-hour of movement.

The U.S. Department of Veterans Affairs has given $120,000 in grant money to Guo to spread his special wheelchair tai chi curriculum. He started in Chattanooga, and has expanded his class offerings to Murfreesboro.

This idea of going beyond prescriptions — and especially beyond opioids — in dealing with different sorts of pain and trauma has become a focus of the VA nationally.

In Tennessee, nearly a quarter of all VA patients with an active medical prescription were on opioids in 2012. That number is now down to 15 percent, but that’s still higher than in most other parts of the country.

According to a national survey from 2015, nearly every VA hospital now offers some kind of alternative health treatment — like yoga, mindfulness and art therapy.

Guo is teaching people in a half dozen VA hospitals in Florida, Texas, Utah and Arizona to use his version of tai chi. He believes the focus on breathing and mindfulness — paired with manageable physical activity — can help ease a variety of ailments.

“When you have a good amount of body harmony, people tend to engage in proactive life,” he says, “so that helps with all kinds of symptoms.”

In addition to making a vet feel better physically, the VA also hopes these alternative therapies might help ease symptoms of conditions like post-traumatic stress disorder.

Thomas Sales, of Nashville, Tenn., says his latest panic attack caught him by surprise. “Night before last, when we had the thunderstorm,” he says. “The thunder is a big trigger for some people.”

It’s been 25 years after Sales fought in the first Gulf War with the Navy Special Warfare Command, and he still has panic attacks regularly.

“You’ll find yourself flashing back to being out there with the fellas, and you’ll just kind of snap,” he says. “And I found myself, for some reason, thinking about doing the breathing techniques [from tai chi], and doing the ‘heaven and earth,’ and then breathing deep and slow.”

Sales says he knows it must look crazy to some people when he reaches to the sky and then sweeps his arms to the ground. There was a time when he would have agreed. Most of the patients in this class had some skepticism going into the tai chi program. But Vietnam veteran Jim Berry of Spring Hill, Tenn., says he’s now convinced of its value.

“My daughter sent me a t-shirt that sums it up,” he says. “Tai chi is more than old folks chasing trees.”

Berry credits meditation and tai chi with helping him quit smoking. “No cigarettes for three months now,” he says.

Zarita Croney, a veteran with the National Guard, says tai chi has helped her with chemical dependency. She now makes the nearly two-hour drive from Hopkinsville, Ky., to Murfreesboro each week, and has reduced her use of pills for pain.

“My whole life … revolved around, ‘Oh shoot, when can I take my next pill?’ ” Croney recalls. “I’ve gone from about 90 percent of my day being on my bed to being able to come out and be social.”

The VA has been aggressively trying to wean vets off high-powered opioids — using prescription data as a key measurement to judge how its hospitals across the country are doing with that goal.

The VA acknowledges that there’s little evidence at this point that tai chi or mindfulness therapy or acupuncture will ease PTSD or addiction, though recently there has been research into the quality of life benefits of tai chi among the elderly.

But physicians say they suspect many of the opioisa aren’t always helping veterans either, and the drugs carry more risks.

Aaron Grobengieser, who oversees alternative medicine at the VA hospital in Murfreesboro, says tai chi won’t replace medication. But it might help reduce prescriptions, and the agency plans to start measuring that.

“I believe this is going to be an avenue,” he says, “to really help address that group of folks [who are] looking for ways to manage those types of conditions without popping another pill.”

This story is part of NPR’s reporting partnership with Nashville Public Radio and Kaiser Health News.

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A measure signed into law in Kentucky this past week would prevent federally-certified radiologists from judging X-rays in state black lung compensation claims, leaving diagnoses of the disease mostly to physicians who typically work for coal companies.

The new law requires that only pulmonologists — doctors who specialize in the lungs and respiratory system — assess diagnostic black lung X-rays when state black lung claims are filed.

Up until now, radiologists, who work in evaluating all types of X-rays and other diagnostic images, had been allowed to diagnose the disease as well.

Just six pulmonologists in Kentucky have the federal certification to read black lung X-rays and four of them routinely are hired by coal companies or their insurers, according to an NPR review of federal black lung cases.

The two remaining pulmonologists have generally assessed X-rays on behalf of coal miners but one is semi-retired and his federal certification expires June 1.

Among the radiologists excluded by the law is Dr. Brandon Crum, who helped expose the biggest clusters ever documented of complicated black lung, the advanced stage of the fatal disease that strikes coal miners.

“I do believe the coal industry is writing this bill to exclude certain doctors that they don’t like,” said Phillip Wheeler, an attorney in Pikeville, Ky., who represents coal miners seeking state black lung benefits.

Experts in reading X-rays

The changes are part of sweeping reforms to Kentucky workers’ compensation law, known as House Bill 2. Workers’ comp provides medical and wage replacement benefits for miners suffering from black lung.

Dr. Crum is the most visible of the excluded radiologists. His clinic in Coal Run Village, Ky., was the focus of a 2016 study by epidemiologists from the National Institute for Occupational Safety and Health (NIOSH). They verified 60 cases of complicated black lung that had been diagnosed in a period of about 20 months in 2015 and 2016.

NIOSH had previously reported 99 cases nationwide over a five-year period.

At the same time, NPR and Ohio Valley ReSource reported nearly 1,000 cases across central Appalachia, prompting NIOSH epidemiologists to declare it the worst epidemic of complicated black lung they’d ever seen. Our ongoing survey of black lung clinics and law offices has the current count of advanced black lung diagnoses at more than 2,200 since 2010.

“Throughout the United States, I know of nowhere where radiologists are taken completely out of the evaluation for potential black lung disease,” Dr. Crum said. “That’s what we’re primarily trained in.”

Physicians who read chest X-rays for work-related diseases like black lung are known as “B readers” and are certified by NIOSH for both federal and state compensation claims. B readers do not specifically have to be pulmonologists or radiologists, though they can be both.

Radiologists, on the other hand, focus entirely on reading multiple types of X-rays and other diagnostic images.

The law also bars out-of-state radiologists who are both NIOSH-certified B readers and medically-licensed in Kentucky. That includes Dr. Kathleen DePonte, a radiologist in Norton, Va., who has read more than 100,000 black lung X-rays in the past 30 years.

“It is curious to me that the legislators feel that the pulmonologist is more qualified to interpret a chest radiograph than a radiologist is,” Dr. DePonte said.

“This is primarily what radiologists do. It is radiologists who receive all the special training in reading X-rays and other imaging.”

Dr. Edward Petsonk, a pulmonologist at West Virginia University with decades of experience and research focused on black lung, points to a 1999 report of pass-fail statistics for physicians taking the NIOSH B reader examination. Two-thirds of the radiologists passed, while the success rate for pulmonologists was 54 percent.

Relying on the expertise of industry

Radiologists, pulmonologists and other physicians don’t necessarily read X-rays the same way. Those who work for coal companies tend to be conservative in assessing black lung because the coal companies or their insurers pay black lung benefits. Those reading X-rays on behalf of coal miners are often accused of being too liberal in their assessments.

Judges often decide which assessments count most.

This seemed to frustrate Rep. Adam Koenig, a Republican from Erlanger and the primary sponsor of the changes in the law.

During the House floor debate on the measure, Koenig said one B reader finds black lung 41 percent of the time while another’s rate is 91 percent.

“Obviously we do not have a standardized process so we are trying to standardize it,” Koenig said. “No one here is trying to deny anyone who does that work from getting their black lung claims.”

That’s precisely what the new law will do, argued Rep. Angie Hatton, a Democrat from Whitesburg.

“When we’re finding increased amounts of this illness it seems to me that this is when they need us the most,” Hatton said. “Why are we making it tougher for them to prove their illness?”

In an interview with NPR, Koenig said he “relied on the expertise of those who understand the issue — the industry, coal companies and attorneys.”

He’d heard “anecdotal stories,” he said, about lung cancer being misdiagnosed as black lung.

Early stages of lung cancer and black lung can leave similar masses on lungs, according to West Virginia University’s Dr. Petsonk.

But Dr. Petsonk also noted that coal miners exposed to silica dust “are at an increased risk of lung cancer. They do get lung cancer. Silica is a carcinogen.”

A miner reacts

Former coal miner William McCool believes he would have been denied state black lung benefits if the new law had been in place when he applied for compensation.

“It’d be pretty much impossible,” McCool said. “I’ve had lung doctors tell me I don’t have black lung.”

McCool said it took two years to win his state claim because the doctors working on behalf of a coal company were conservative in assessing his disease. But the 64-year-old from Letcher County ultimately prevailed and has been diagnosed with advanced disease.

The federal black lung compensation program continues to rely on all NIOSH-certified B readers, whether they are pulmonologists, radiologists or other physicians. But seeking federal benefits instead of state workers’ compensation is not necessarily an easy option.

Dueling assessments in the federal system mean that some miners have waited more than a decade for decisions on federal benefits. Some die before receiving them. State benefits have traditionally been quicker and more generous to miners.

That seems to be changing, said Evan Smith, an attorney at the Appalachian Citizens’ Law Center in Whitesburg.

Smith said the new state law “keeps Kentucky coal miners from using highly qualified and reliable experts to prove their state black lung claims [and] looks like just another step in the race to the bottom to gut worker protections.”

Koenig insisted that’s not the case.

“All we’re doing is making sure that qualified doctors are making these determinations,” Koenig said. “And if this process doesn’t work, I’ll be the first in line to figure out how to do it better.”

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Straddled across Ausberto Maldonado’s backyard in Bayamon, Puerto Rico, a suburb of San Juan, is a nagging reminder of Hurricane Maria’s destructive power.

“See, that tree broke off that branch, which is as thick as a tree — and now it’s in my yard,” says Maldonado, a 65-year-old retiree.

Rats scurry from under the downed tree, preventing Maldonado from hanging his laundry. To get the tree removed, he must show up in person at a local government office. But the diabetic ulcers on his feet make it painful to walk.

After a lifetime of work on the U.S. mainland picking corn and asparagus and processing chickens in poultry plants, Maldonado returned to Puerto Rico a decade ago to help care for his ailing mother, who has since died. Today the retiree finds himself living day-to-day on the island. He receives $280 a month in Social Security and $89 a month in food stamps — or about $3 a day for food.

Six months after Hurricane Maria devastated Puerto Rico and its economy, the daily indignities are piling up, especially for people who are frail or elderly. Many are finding their current economic straits nearly as threatening as the storm.

The emergency government support that helped pay for some health care and medically related transportation needs of Puerto Ricans after Hurricane Maria is running out. Private donations of water and food have slowed. And it’s not clear who, if anyone, will carry on with that work.

Maldonado opens the cupboards in his tidy kitchen. There are a few cans of corned beef, SpaghettiOs and beans. When I ask him what he usually makes for himself, he sounds wistful.

“When I have enough food, when I do my groceries,” he says, “I have eggs and bread and coffee and juice for breakfast. I would make spaghettis or some sort of salad and maybe a little dessert.”

But, in truth, the oven is unplugged, there is no juice or eggs or lettuce. It has been months since Maldonado has had fresh vegetables in the house.

“When there’s very little, then I kind of go on a diet,” he says.

It was hard enough for the retiree to fill his cupboards before the storm, but now, as many aid groups are winding down their donations, Maldonado needs to find money to buy clean, bottled water and to replace his refrigerator, which was ruined during the hurricane.

To buy groceries, he must wait two weeks for his next Social Security check.

“I’m waiting until the 10th so I can go do my grocery shopping again — if I can find a way to get there,” Maldonado says. “That’s when I would have food again, enough to make three meals — lunch, breakfast and dinner.”

Maintaining a decent diet isn’t simply about staving off hunger; diabetes is consuming Maldonado’s foot, and unless he eats healthy food and takes his insulin, doctors have warned him, his foot will need to be amputated.

Maldonado opens the door to his broken refrigerator and points to a vial that holds a few drops of insulin — the last of his supplies until he can afford the $3 copay for his refills and find a ride to the pharmacy.

“The pharmacist said it could be stored in a dark place [without refrigeration] for a couple of weeks,” he says.

Ideally, insulin should be kept cool, but broken refrigerators and a lack of power in many homes in Puerto Rico pose grim hazards for the island’s expanding population of people with diabetes.

A visiting nurse, Leslie Robles, shows up for her monthly visit to Maldonado’s home. She examines the 3-inch gaping wound on his foot. They sit at the kitchen table under a painting of The Last Supper and sift through piles of paperwork for Maldonado’s upcoming cataract surgery.

Robles tells him that the free medical transportation service that the government made available to large numbers of people after the storm is expiring soon, and he’ll no longer qualify for free rides.

What Robles does not say is that the visiting nurse program she works for, operated by VarMed, a health care management company whose services had been paid for by the government, is shutting down too.

VarMed has been helping to coordinate medical care, social services and housing for thousands of Puerto Ricans for four years. But, already, in recent weeks, the company has laid off more than 100 nurses and social workers across the island as the local government seeks to overhaul its Medicaid contract with insurance companies.

It is unclear how much longer Robles will be able help Maldonado and other patients like him who are on Medicaid and have complex medical needs — the so-called “high cost, high need” patients on the island.

The government wants Medicaid-contracted insurers to develop their own programs for these patients, but the earliest that would happen is this fall.

In the meantime, Maldonado says he has no one to help him grocery shop, fill prescriptions and get to doctor’s appointments; the volunteers who helped him survive Hurricane Maria are returning to their own lives. In many ways, he, too, is returning to the same spartan life he had before the storm. But with a weakened island safety net that continues to unravel, and with his own health increasingly tenuous, Maldonado feels alone.

Sarah Varney is a senior national correspondent at Kaiser Health News, a nonprofit health newsroom that is an editorially independent part of the Kaiser Family Foundation.

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Treading into ethically and legally uncertain territory, a New York end-of-life agency has approved a new document that lets people stipulate in advance that they don’t want food or water if they develop severe dementia.

The directive, finalized this month by the board for End Of Life Choices New York, aims to provide patients a way to hasten death in late-stage dementia, if they choose.

Dementia is a terminal illness, but even in the seven U.S. jurisdictions that allow medical aid-in-dying, it’s not a condition covered by the laws. Increasingly, patients are seeking other options, says Dr. Timothy Quill, a palliative care specialist at the University of Rochester School of Medicine and longtime advocate of medical aid-in-dying.

“Developing incapacitating dementia is certainly my and a lot of people’s worst nightmare,” he says. “This is an aggressive document. It’s a way of addressing a real problem — the prospect of advanced dementia.”

The document offers two options. One option is a request for “comfort feeding” — providing oral food and water if a patient appears to enjoy or allows it during the final stages of the disease. Another alternative would halt all assisted eating and drinking, even if a patient seems willing to accept it.

Supporters say it’s the strongest effort to date to allow people who want to avoid the ravages of advanced dementia to make their final wishes known — while they still have the ability to do so.

“They do not want their dying prolonged,” says Judith Schwarz, who drafted the document as clinical director for the advocacy group. “This is an informed and thoughtful choice that needs a great deal of reflection and discussion.”

But critics say it’s a disturbing effort to allow withdrawal of basic sustenance from the most vulnerable in society.

“I think oral feeding is basic care,” says Richard Doerflinger, an associate scholar with the Charlotte Lozier Institute, which opposes abortion and euthanasia. “It’s what they want here and now that matters. If they start taking food, you give them food.”

Advance directives are legally recognized documents that specify care if a person is incapacitated. They can confirm that a patient doesn’t want to be resuscitated or kept on mechanical life support, such as a ventilator or feeding tube, if they have a terminal condition from which they’re not likely to recover.

However, the documents typically say nothing about withdrawing hand-feeding of food or fluids.

The New York directive, in contrast, offers option A, which allows refusal of all oral assisted-feeding. Option B permits comfort-focused feeding.

The options would be invoked only when a patient is diagnosed with moderate or severe dementia, defined as Stages 6 or 7 of a widely used test known as the Functional Assessment Staging Tool (FAST). At those stages, patients would be unable to feed themselves or make health care decisions.

The new form goes further than a similar dementia directive introduced last year by another group that supports aid-in-dying, End of Life Washington. That document says that a person with dementia who accepts food or drink should receive oral nourishment until he or she is unwilling or unable to do so.

The New York document says, “My instructions are that I do NOT want to be fed by hand, even if I appear to cooperate in being fed by opening my mouth.”

Whether the new directive will be honored in New York — or anywhere else — is unclear. Legal scholars and ethicists say directives to withdraw oral assisted-feeding are prohibited in several states.

Many care facilities are unlikely to cooperate, says Thaddeus Pope, director of the Health Law Institute at Hamline University in St. Paul, Minn., and an expert on end-of-life law. Doctors have a duty to honor patient wishes, but they can refuse if they have medical or moral qualms.

“Even solidly legal advance directives do not and cannot ensure that wishes are respected,” Pope writes in an email. “They can only ‘help assure’ that.”

Directors at End of Life Choices New York consider the document “legally sturdy,” Schwarz writes, adding: “Of course it’s going to end up in court.”

Whether assisted feeding can be withdrawn was at the center of recent high-profile cases in which patients with dementia were spoon-fed against their documented wishes because they continued to open their mouths. In a case in Canada, a court ruled that such feeding is basic care that can’t be withdrawn.

People who fill out the directives may be more likely to have them honored if they remain at home, Schwarz says. She stresses that patients should make their wishes known far in advance and choose health care agents who will be strong advocates. Attorneys say the documents should be updated regularly.

Doerflinger, however, says creating the directive and making it available misses a crucial point: People who don’t have dementia now can’t know how they’ll feel later — yet, they’re deciding in advance to forgo nourishment.

“The question is: Do we, the able-bodied, have a right to discriminate against the disabled people we will later become?” Doerflinger says.

Already, though, Schwarz has heard from people determined to put the new directive in place.

Janet Dwyer, 59, of New York, says her family was horrified by her father’s lingering death after a heart attack four years ago; Her family has a strong history of dementia, so when Dwyer learned there was a directive to address terminal illness and dementia, she signed it. So did her husband, John Harney, who is also 59.

“Judith informed me of the Option A or Option B scenarios,” says Dwyer, who opted for the more aggressive option — refusal of all oral assisted-feeding. “I said, ‘Well, that is just perfect.”

Kaiser Health News (KHN) is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

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Velva Poole has spent about 20 years as a social worker, mostly in Louisville, Ky. She’s seen people ravaged by methamphetamines and cocaine; now it’s mostly opioids. Most of her clients are parents who have lost custody of their children because of drug use. Poole remembers one mom in particular.

“She had her kids removed the first time for cocaine. And then she had actually gotten them back,” she says. But three months later, the mother relapsed and overdosed on heroin.

“She had to go through the whole thing all over again — having supervised visits with the kids, then having overnights,” Poole recalls. Starting again from the bottom, the mom took steps to reclaim her life.

And, eventually, she did regain custody of her children. Poole recently ran into the woman at the grocery store.

“She hugged me,” Poole says. “I don’t know how to describe it. It just makes you feel like, wow, what you did really did make a difference in someone’s life.”

Poole is now a supervisor in the Sobriety Treatment and Recovery Teams program, which is funded primarily by the state. It’s an intensive program for parents who have had their kids taken away because of substance abuse and the resulting neglect or mistreatment of the children. The goal is to create a faster process to reunite those families.

It works like this in Kentucky: Someone reports a parent to Child Protective Services if they suspect the adult has an addiction problem and children aren’t being taken care of. If there’s evidence to support the claim, the parent then has a choice — they can go through the standard CPS process, or enroll in START.

Both options have the parent meet with a social worker, and include weekly drug screenings and daily drug treatment, as well as regular attendance at meetings of Alcoholics Anonymous or Narcotics Anonymous. But START also assigns a mentor to families; the parent has to meet with the mentor once a week. The mentor also drives the parent to and from some appointments and helps them get other services they may need.

Rhonda Maddox is one the family mentors.

“I’m able to open that door, and say, ‘I’ve been where you are. We might not walk down the same road but I done some of the same things you have,’ ” Maddox says.

She stopped using drugs 14 years ago.

“I began using drugs at the age of 9,” Maddox recalls. “My mom was gone [and] my dad was gone, due to their addictions. So I started using. It stayed like that for a long time, going on into high school. I had a few kids then, and then I abandoned those two kids on my granny.”

Maddox eventually got sober and regained custody of her children. Hearing her story makes it easier for clients to open up and and accept help, Poole says.

“It’s very helpful for the client to be able to relate to someone that’s been in their shoes,” she says.

The START program began in Ohio and expanded into Kentucky in 2007. Since then, research has shown it has a higher success rate in reuniting families than the traditional child welfare process.

But the opioid crisis has posed new challenges, Maddox says.

“I had a few of my clients that passed away [after] an overdose — was kind of devastating,” she says. “Sometimes I wonder if there was something else I could have done.”

In each case, Maddox and Poole have a year to try to reunite START parents with their children.

Former START director Tina Willauer says, despite the benefits of enrolling in the START program, parents are still up against significant societal stigma because of their drug use.

“There’s this question, ‘should we even give them treatment?’ — almost as if they’re throwaway because they have an opioid use disorder,” Willauer says.

She believes there are important reasons to keep families together.

“If you’re pulling a child out of a home and putting them in a foster home, we’re removing them from the only people they know — their family. They might have to leave their church; they might have to leave their community,” Willauer says. “So, everything they know. It’s traumatic on many, many levels.”

Willauer and the staff at START wish every parent could go through their demanding program. But START costs more money than the standard, less-intensive process of child protective services. With the state of Kentucky facing a budget crunch, expansion of START is not likely to happen anytime soon.

This story is part of NPR’s reporting partnership with Louisville Public Media and Kaiser Health News.

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When journalist Maya Dusenbery was in her 20s, she started experiencing progressive pain in her joints, which she learned was caused by rheumatoid arthritis.

As she began to research her own condition, Dusenbery realized how lucky she was to have been diagnosed relatively easily. Other women with similar symptoms, she says, “experienced very long diagnostic delays and felt … that their symptoms were not taken seriously.”

Dusenbery says these experiences fit into a larger pattern of gender bias in medicine. Her new book, Doing Harm, makes the case that women’s symptoms are often dismissed and misdiagnosed — in part because of what she calls the “systemic and unconscious bias that’s rooted … in what doctors, regardless of their own gender, are learning in medical schools.”

“I definitely believe that the fact that medicine has been historically and continues to be mainly run by men has been a source of these problems,” she says. “The medical knowledge that we have is just skewed towards knowing more about men’s bodies and the conditions that disproportionately affect them.”

Dusenbery is also the executive editor of Feministing, a website of writing by young feminists about social, cultural and political issues.

Interview Highlights

On how women have been left out of drug trials and medical observational studies

There was a lot of concern about including women in drug trials, specifically because of concerns about affecting their hypothetical fetuses. So in the ’70s the FDA had a policy of prohibiting any woman of childbearing age from participating in early-stage drug trials. …

But we also see that at that time, women were also excluded from studies that were just observational studies — not just drug trials. In the ’90s, when there were congressional hearings about this problem, the public learned that women had been left out of things like a big observational study looking at normal human aging that was ongoing for 20 years. It started in the ’50s, and for the first 20 years women had been left out of that.

On women’s recent inclusion in National Institutes of Health studies

[In] 1993, Congress passed a law saying that women need to be included in NIH-funded clinical research. And in the aggregate, women do make up a majority of subjects in NIH research. However, we still don’t know that women are necessarily adequately represented in all areas of research, because the NIH looks at the aggregate numbers, and the outside analyses that have been done show that women are still a little bit underrepresented.

More importantly, even though women are usually included in most studies today, it’s still not the norm to really analyze results by gender to actually see if there are differences between men and women. So experts have described this to me as an “add women and stir” approach. Women are included, but we’re still not getting the knowledge we need about ways that their symptoms or responses to treatment might differ from men.

On why some medicine affects men and women differently — and how that results in women receiving excessive doses of most drugs

There are a lot of factors that go into these recognized sex differences in drug metabolism and response. … Percentage of body fat affects it. Hormones, different levels of enzymes — all of these things go into it. But really, probably the most straightforward [factor] is that, on average, men have a higher body weight than women. And yet, even that difference is not usually accounted for. We prescribe drugs based on this one-size-fits-all dosage, but that ends up meaning that, on average, women are being overdosed on most drugs.

On the difference between how men and women experience heart disease

Over the last couple of decades, there’s been a recognition that for the first 35 years we were studying heart disease, we were really mostly studying it in men. And so there’s been a concerted effort to go back and compare women’s experiences to men’s, which has led to the knowledge that women are more likely to have what are considered to be atypical symptoms. [And] the only reason they’re considered “atypical” is because the norm has been this male model — so, atypical symptoms, like pain in the neck or shoulder, nausea, fatigue, lightheadedness. …

Partly as a result of those differences in symptoms — which are still not always recognized by health care providers — women (especially younger women) are more likely to be turned away when they’re having a heart attack, sent home. One study found it was younger women — so women under 55 — were seven times more likely than the average patient to be sent home mid-heart attack. … Even if they’re not sent home, you see longer delays [for women] to getting [electrocardiograms] and other diagnostic testing or interventions in the ER setting.

On how the subjective symptom of fatigue is dismissed in women

One of the most common [symptoms] that really is common across … [the autoimmune diseases] is fatigue — a really deep, deep fatigue that isn’t just being sleep-deprived from staying up too late. That fatigue, comparable to pain, is this very subjective symptom that’s hard to communicate to other people. And I think that women are up against this real distrust of their own reports of their symptoms.

So conditions like autoimmune diseases that really are marked by these subjective symptoms of pain and fatigue, I think, are very easy to dismiss in women. … Even though we do know about autoimmune diseases, during that diagnostic delay, women are often told, “You’re just stressed. You’re tired.” And [they] have a really hard time convincing doctors that this fatigue is abnormal.

On some female patients taking a male relative or spouse with them to doctors’ appointments to vouch for them

I found this to be one of the most disturbing things that I found in my research: how many women reported that as they were fighting to get their symptoms taken seriously, [they] just sort of sensed that what they really needed was somebody to testify to their symptoms, to testify to their sanity, and felt that bringing a partner or a father or even a son would be helpful. And then [they] found that it was [helpful], that they were treated differently when there was that man in the room who was corroborating their reports.

Heidi Saman and Seth Kelley produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Scott Hensley adapted it for the Web.

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