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Stephen Ziel still carries around a recording of his daughter’s heartbeat on his phone. It sounded strong the whole time she was in the womb.

“And the heartbeat’s not supposed to be that strong,” he says.

Not for babies like her. Lydia Joy Ziel was diagnosed with a rare genetic disorder called Trisomy 18 — also known as Edwards syndrome — a few months after Stephen and his wife, Melissa, found out she was pregnant.

“That was probably the moment where it felt like the world kind of shattered on us,” Melissa says.

Most babies with the disorder are either miscarried or stillborn, or die shortly after birth. Melissa and Stephen didn’t know how long they would have with their baby, so they tried to make every moment of the pregnancy count. They picked out a name and started a little book documenting her first experiences.

They captured moments like “Lydia’s first snowfall, Lydia’s first Thanksgiving, Lydia’s first Christmas,” Melissa says. And every night, they read a picture book and a Bible story to Melissa’s growing belly.

The couple also read everything they could find on how to deal with their grief. That included a book by Sherokee Ilse, who personally knows the pain of losing a baby.

“It’s important to grieve and mourn these little ones, to recognize that our lives are different,” Ilse says.

That’s been Ilse’s mission ever since her son Brennan was stillborn decades ago. Ilse briefly held him, but other than that, she feels she and her husband did everything wrong.

“No pictures, no mementos of any kind,” she says. “We literally left with empty arms. I have nothing that he touched.”

Ilse says such deep regret is still the norm for grieving parents. And many feel as if they’re going through it alone, she says, even though this kind of loss is actually common. Roughly 1 in 5 pregnancies ends in miscarriage in the U.S., and every year thousands of babies are stillborn.

So, in the years since her son’s death, Ilse has tried to change our culture’s relationship to infant death. She’s written books, trained hospital staff and most recently co-founded Baby Loss Family Advisors. It’s a certification program that trains professional doulas and others to help people through the death of their babies.

That’s what Ilse did for Melissa and Stephen Ziel. Melissa says she helped them have those difficult conversations that needed to happen.

“Because I think it is hard to talk about what happens if your baby does die,” Melissa says. “It’s not something, I think, as you get married and talk about having kids and a family, that [you think] is going to happen or you’re going to have to think in this direction.”

As the due date got closer, the couple spoke with Ilse many times over the phone and in person, since they all live within miles of one another in Tucson, Ariz. She helped them plan for the birth, even embrace it.

As Melissa puts it: “Being able to say hello and goodbye at the same time.”

When Melissa’s water broke, she and Stephen say they felt prepared. Almost a day later, Lydia was delivered. Melissa remembers listening for her baby’s cry — and hearing nothing.

“It almost felt you were holding your breath, waiting to figure out what was going on, what was happening,” she says.

Stephen remembers asking the nurse to check for a heartbeat “multiple times,” he says, “because I thought, ‘Well, maybe it just took a minute.’ “

Lydia was stillborn. But she was still their baby. So with Sherokee Ilse’s help, they started making all the memories they could, as quickly as they could. They got footprints and handprints, took professional photographs, introduced her to their families.

Melissa and Stephen spent hours and hours with Lydia, trying to memorize every little part of her, just as Ilse had suggested.

“You know, look at her eyes, see if she has any birthmarks, who does she look most like? And we all agreed she looked more like Steve,” Melissa says, smiling.

“She looked pretty good,” Stephen says, as he and Melissa laugh together.

They’re able to be happy now when they talk about Lydia, because they say they have no regrets.

“There can be blessings. There can be peace. There can be joy in the midst of difficult circumstances,” Melissa says, “and those are things to, no matter how hard they are, they’re also things to be able celebrate.”

Melissa and Stephen Ziel say having someone to help guide their grief made that celebration possible.

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Kids from less affluent homes, even when they have health insurance, aren’t as likely as others to get vision screenings that can identify conditions like lazy eye before the damage becomes irreversible.

Researchers at the University of Michigan examined commercial health insurance claims data between 2001 and 2014 for nearly 900,000 children from birth to age 14. They tracked how often kids at different family income levels visited ophthalmologists and optometrists and the diagnosis rates for strabismus (crossed eyes) and amblyopia (lazy eye).

The two conditions are relatively common, serious eye disorders in children. Because the eyes are seeing different things, the brain suppresses the vision in one eye. If not corrected by age 10, either condition can result in permanent vision loss. Treatment generally involves glasses, surgery, eyedrops or patches, or some combination.

Children in families with the lowest net worth (less than $25,000 a year) had 16 percent fewer eye care visits than those in the middle-income category ($150,000 to $250,000 a year), the study found. Meanwhile, kids from families with the highest net worth ($500,000 or more annually) had 19 percent more visits to eye care professionals than those in the middle-income group.

Lower-income kids were also less likely to be diagnosed with strabismus or amblyopia than were children from higher-income families. By age 10, an estimated 3.6 percent of children in the lowest-income category were diagnosed with strabismus, and 2 percent were diagnosed with amblyopia, the study found. For kids in the highest-income bracket, the estimated diagnoses were 5.9 percent for strabismus and 3.1 percent for amblyopia.

“We think that affluence is driving the eye care visit and the visit is driving the diagnosis of eye disease,” said Dr. Joshua D. Stein, the study’s lead author and an associate professor of ophthalmology and visual sciences at the University of Michigan’s medical school. The findings were published in the August issue of the journal Health Affairs.

The researchers estimate that the lack of eye care visits by lower-income children resulted in 12,800 missed cases of strabismus and 5,400 missed cases of amblyopia.

Many children receive vision screening in schools, which wouldn’t appear in the claims data that were analyzed. Children who fail a school vision screening, however, should be referred to an optometrist or ophthalmologist for further testing, and that visit would show up in the claims data.

Less affluent parents may have more difficulty taking time off from work or face transportation challenges getting a child to an eye care provider, said Stein, and there may be fewer eye care providers available in less affluent areas.

Under the health law, services recommended by the U.S. Preventive Services Task Force, an independent panel of medical experts, are covered by insurance without requiring most people to pay anything out of pocket. The task force recommends that children between the ages of 3 and 5 receive at least one vision screening to check for amblyopia. That recommendation is being updated.

Please contact Kaiser Health News to send comments or ideas for future topics concerning health insurance.

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Some of the Affordable Care Act’s insurance marketplaces are in turmoil as the fourth open enrollment season approaches this fall. What’s ahead for consumers depends very much on where they live.

Competition on some exchanges will be diminished next year when three of the nation’s largest health insurers — Aetna, UnitedHealthcare and Humana — will sell individual plans in many fewer markets. The departure of several Blue Cross and Blue Shield plans in various states will also hurt. These pullbacks also come on top of the closure of 16 nonprofit co-ops, another coverage option, since January 2015.

Aetna’s exit announcement Monday that blamed financial losses on its marketplace plans gave Obamacare opponents who have from the start predicted the health law’s failure a fresh chance to proclaim, “I told you so.”

That story line got more complicated Wednesday after the Huffington Post reported Aetna CEO Mark Bertolini sent a letter to the Justice Department on July 5 threatening to withdraw from the Obamacare marketplaces if the government sued to block his company’s planned merger with Humana. The Justice Department did just that a couple weeks later.

Still, most marketplace consumers won’t see any ill effects from insurers’ withdrawals, say the health law’s advocates and independent analysts.

“The effect on consumers is going to be mixed around the country,” said Katherine Hempstead, a senior adviser at the Robert Wood Johnson Foundation. “Most of these marketplaces are not dependent on” the large national carriers.

Also, the big insurers’ announcements apply generally only to the individual market. The much larger market of employer-sponsored insurance is not part of the health law exchanges.

Many major metropolitan areas, such as those in California, New York and Texas, will still have several insurers for individual health insurance consumers to choose from. In Texas, all major metro areas — including Austin, Dallas, Houston and San Antonio — will have at least three insurers after Aetna and UnitedHealthcare exit.

That’s true also for most urban exchange customers living in the Northwest, the Midwest and New England.

Most hurt will be marketplace consumers in Arizona, North and South Carolina, Georgia and parts of Florida, where only one or two insurers will be left when open enrollment season begins Nov. 1.

Remaining insurers might raise their monthly premiums as a result, but more than 8 in 10 consumers on the marketplaces who get government subsidies would be insulated. Subsidies increase as premiums rise.

One concern is that with less competition, insurers may tighten their provider networks and give these consumers fewer choices of hospitals and doctors. That trend started several years ago, and some states have responded with regulations requiring insurers to provide customers with reasonable access to doctors and hospitals in each county where they sell plans.

Nearly 13 million people signed up for Obamacare marketplace policies for 2016. Aetna, UnitedHealthcare and Humana have 2 million members in total, but their exit from certain states is predicted to affect between 1 million and 1.5 million people who will have to choose new carriers.

While changing plans can force people to find new doctors, it’s also the best way for consumers get the best deals on coverage.

Aetna will exit 11 of 15 states where it sells plans on the exchanges. UnitedHealthcare has said it will quit 22 of 34 states, and Humana will leave four of the 15 states where it operates.

In late May, the Kaiser Family Foundation estimated the number of rural counties at risk of having one insurer on the exchanges would triple in 2017. That was before Humana and Aetna detailed their plans. (Kaiser Health News is an editorially independent project of the foundation.)

“We could be looking at about 1 in 4 counties in the U.S. with just one exchange insurer next year, though this could change between now and open enrollment in November,” said Cynthia Cox, associate director for the Kaiser Family Foundation Program for the Study of Health Reform and Private Insurance.

Overshadowed by the big insurers’ withdrawals is the prospect that other carriers will enter markets the three giants are leaving. Smaller insurers Molina and Centene have said they’re doing fine on the exchanges. And Cigna, a larger insurer, has said it will move into some North Carolina counties for 2017.

North Carolina will be left with just one or two plans in most of the state after it loses UnitedHealthcare and Aetna plans. Health insurance analysts say three insurers are needed for a healthy competitive market.

“We’ve had a very robust enrollment under the ACA and hope consumers will still see benefits of having coverage even if they have fewer options,” said Ciara Zachary, health policy analyst for the North Carolina Justice Center’s Health Access Coalition.

Rural Americans had few health insurers to choose from even before Obamacare, but some suburban and urban parts of the Southeast will be in the same fix next year. In southeast Florida, consumers in counties near Naples and Fort Myers will have only one marketplace insurer — Florida Blue — next year, unless other insurers step in.

“There are some headwinds, but it’s not a question of whether the market will stabilize but how quickly and how well,” said Hempstead.

Strong winds are already blowing with hurricane force toward Arizona’s Pinal County, southeast of Phoenix, health care advocates say. Nearly 10,000 people enrolled in Obamacare marketplace policies this year and about 85 percent received a federal subsidy.

In 2017, Pinal stands to lose its only two insurers — UnitedHealthcare and Blue Cross and Blue Shield of Arizona. “Clearly this is a big concern for consumers,” said Allen Gjersvig, director of navigator and enrollment services for the Arizona Alliance for Community Health Centers. He said he is hopeful another insurer will step in, but not confident.

Neighboring Maricopa County, which includes Phoenix, is expected to have just two relatively small insurers in the area left on its marketplace next year. Gjersvig questions whether those two — Cigna and Phoenix Health Plan — will have enough doctors and hospitals under contract to handle their new members after larger rival Blue Cross and Blue Shield of Arizona gives up its 40,000 customers.

At least a dozen other counties in Arizona will be left with just one health insurer, he said.

Arizona had eight insurers operating in various parts of the state this year, but four are leaving entirely — Aetna, UnitedHealthcare, Humana and Health Choice. Two more, Blue Cross Blue Shield and Health Net, are scaling back their participation.

Despite the problems with the marketplaces, Gjersvig said thousands of people have gained coverage through them and he is confident they will survive. “We do not see this as a death knell for the marketplace,” he said.

Tammie King, an insurance agent in Columbia, S.C., is less sure how insurer departures will affect consumers in the Palmetto State. The pullouts by UnitedHealthcare and Aetna mean there will be only one carrier in the state in 2017 — Blue Cross and Blue Shield of South Carolina.

That’s a particular concern in Columbia, she said, because the Blue Cross plan does not include one of the biggest hospitals, Lexington Medical Center, and its affiliated physicians. “People will be left unable to see the doctors they are now using,” King said.

King said she worried the Blue Cross plan will use its monopoly power to further reduce the number of doctors and hospitals in its network and limit its choice of prescription drugs. “You can’t blame them because … they have to do something to control costs,” she said.

Kaiser Health News is an editorially independent news service supported by the nonpartisan Kaiser Family Foundation.You can follow Phil Galewitz on Twitter: @PhilGalewitz.

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It’s not often in the midst of an antitrust fight that the public gets a look at the gamesmanship that’s happening behind the scenes.

But thanks to the Huffington Post’s Jonathan Cohn and Jeff Young, we got a glimpse at how health insurer Aetna is making its case to acquire rival Humana — and new insight into Aetna’s decision announced Tuesday to pull out of Obamcare exchanges in 11 states.

The reporters obtained a copy of a letter from Aetna CEO Mark Bertolini to the Justice Department on July 5. The letter was written while the government was still deciding whether to oppose the insurance companies’ merger on the grounds that it (and another proposed deal between Anthem and Cigna) would hurt consumers and reduce competition.

The Bertolini letter was in answer to a Department of Justice request for information about how a decision on the Humana deal would affect Aetna’s participation in the health insurance exchanges created by the Affordable Care Act.

The letter is pretty direct: If the government moved to block the merger, then Aetna would begin to pull out of the health insurance exchanges.

Here’s the key paragraph (emphasis added):

“Our analysis to date makes clear that if the deal were challenged and/or blocked we would need to take immediate actions to mitigate public exchange and ACA small group losses. Specifically, if the DOJ sues to enjoin the transaction, we will immediately take action to reduce our 2017 exchange footprint. We currently plan, as part of our strategy following the acquisition, to expand from 15 states in 2016 to 20 states in 2017. However, if we are in the midst of litigation over the Humana transaction, given the risks described above, we will not be able to expand to the five additional states. In addition, we would also withdraw from at least five additional states where generating a market return would take too long for us to justify, given the costs associated with a potential breakup of the transaction. In other words, instead of expanding to 20 states next year, we would reduce our presence to no more than 10 states. We also would not be in a position to provide assistance to failing cooperative exchanges as we did in Iowa recently.”

The Huffington Post reporters calls the letter “a clear threat.”

A little more than two weeks later, on July 21, the Justice Department said it would sue to block the Aetna-Humana deal and the other proposed megamerger between Anthem and Cigna.

On Tuesday, Aetna said it would dramatically scale back its participation on the insurance exchanges in 2017. The company move would take it out of 546 counties in 11 states, leaving it active in 242 counties in four states: Delaware, Iowa, Nebraska and Virginia.

Aetna said the pullback was a business decision stemming from a loss in the second quarter on individual plans and uncertainty about the policy outlook for the exchanges.

In the company’s statement, Bertolini said, “As a strong supporter of public exchanges as a means to meet the needs of the uninsured, we regret having to make this decision.”

The statement made no mention of the company’s pending offer for Humana nor its recent correspondence with the government about how Aetna would likely respond if the feds moved to block the deal. Aetna didn’t immediately respond to a request for comment on how to reconcile Tuesday’s announcement with the July 5 letter made public by Huffington Post on Wednesday.

The change in tack for Aetna is also noteworthy because Bertolini was talking up the business potential of the exchanges as recently as April, when he said during a call with analysts and investors that the exchanges were “a good investment,” despite the losses incurred.

At the time, Bertolini said that Aetna was “committed to working constructively with the administration and lawmakers to find solutions that can improve this program, stabilize the risk pool, and expand product flexibility, all with the goal of creating a sustainable program that makes health care more affordable and accessible for all consumers.”

Now, the company appears to be taking its ball and going home.

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At 10 a.m. on a recent Wednesday morning, a line of parents pushing strollers filed into a conference room at the Sacramento County Courthouse in California. They sat at rows of narrow plastic tables, shushing their babies and looking up at a man in a black robe.

Hearing Officer Jim Teal sounded his gavel. “This is the time and place set for Early Intervention Family Drug Court,” he began, gazing sternly at the parents who sat before him. “Graduation from this court is considered a critical factor in determination that the children of participants will be safe from any further exposure to the danger and destructive impact of parental substance abuse.”

There has been a surge recently, across the U.S., in the number of children entering the foster care system after years of decline. Nationally, roughly 265,000 kids entered foster care in 2015 — the highest number since 2008, according to a recent government report.

Substance abuse is a factor in up to 80 percent of cases where a child is removed from a home. And there are signs that the opioid epidemic may be to blame.

Parents who receive addiction treatment are much more likely to get their kids back, but 4 in 5 parents fail to complete their treatment regimen.

The Early Intervention Family Drug Court aims to change that by helping parents with substance abuse problems to complete treatment before their children enter the foster care system. If the parents fail, they’ll be sent to a formal family drug court, where their children are taken away and given attorneys of their own.

But before that, the parents get this opportunity to enter recovery, through a mix of support, medication-assisted treatment and tough love.

Many parents participating in the early intervention drug court entered the system after having babies born dependent on opioids or other drugs. Others were reported to Child Protective Services by friends or family. All are at risk of losing custody of their children because of their drug abuse.

Emma, 20, a striking woman with long blond hair, approached Teal’s podium holding a baby. NPR is withholding her last name because her case is active with Child Protective Services.

“Good morning,” Teal said. “Who do you have with you there?”

“My daughter, Cailynn,” Emma answered proudly, bouncing the cooing child on her hip.

Emma started using drugs when she was 16. At first it was methamphetamines, she said, but she quickly transitioned to heroin. Then she got pregnant.

Her daughter Cailynn tested positive for opioids at birth. Child Protective Services came to the hospital and took the baby into custody.

“I regret every moment of it,” Emma said. “It’s hard. But I’ve got to keep my head up and keep going.” From the start, she wanted her daughter back.

Usually, Sacramento County has a three-month wait for people who need substance abuse treatment. But by volunteering to participate in the drug court, Emma was able to get treatment right away and her baby back.

“So Emma, it says here you’re 63 days compliant,” Teal said that day in court. “And 63 days in the program, so you’ve been good. You’ve been doing what you’re told. Congratulations.”

The other parents in the room burst into applause — this is a major accomplishment. The six-month program is rigorous. In addition to monthly sessions at the court, the parents must attend almost daily group meetings, submit to random drug tests and take parenting classes. Many, like Emma, go to inpatient rehab. Medication-assisted therapy for opioids is also available. And once or twice a week, they get a home visit from their social worker.

Emma attributed much of her success in the program so far to social worker Matthew Takamoto, whom she called “amazing.”

Takamoto has been a social worker for 20 years and has been part of the EIFDC since the program began six years ago. The program, he said, is an important change in way the county handles addiction.

“In the olden days, we were quicker to send them to court,” he said. Their approach was “more ‘blaming the addict,’ versus giving them the tools they need.”

In the afternoon following the court meeting, Takamoto drove to the inpatient residential facility where Emma lives with her daughter. In the back is a grassy yard with a small jungle gym, where several mothers sat, watching their children play. Emma was there, too, holding Cailynn in her lap.

Takamoto seemed happy with Emma’s progress. “You take these clients from the very beginning, where they’re broken and it’s the worst day of their life,” he said. “And to see them slowly get back up as they have days of clean time — it’s been incredible.”

The hardest part of his job, he said, is realizing that not all the parents are going to make it. In fact, just a third end up graduating from the county’s program.

“If these parents aren’t successful, it’s the kids [who] pay the price,” Takamoto said. “The parents are doing what they want to do, but the kids don’t have a choice.”

Just 5 to 10 percent of families in the United States who could use family drug courts have access to them, according to Children and Family Futures, an organization that advises and evaluates family drug courts. Sacramento’s program is one of about 350 in the country; most of the rest work with families after their children have entered the foster system.

Sherri Z. Heller, director of Sacramento’s Health and Human Services Department, described family drug courts as a success story.

“People can overcome addiction if the motivation is strong enough, and this is the most effective motivation I have ever seen,” Heller said.

Just 10 percent of kids with families in the program end up being removed from their home, compared to 30 percent of children in families who do not participate. That represents a major savings to the county — about $21,000 dollars a year for every kid who doesn’t have go into the court and foster system, for an annual total savings of $7 million.

“The rush that comes with getting high is pretty spectacular,” Heller said. “And it’s very hard physically, once the addiction happens, to overcome. But if there is one thing that matters to people more than the thrill of getting high, it’s the thrill of doing the right thing for your children and keeping your family intact.”

Kaiser Health News is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation. You can follow Jenny Gold on Twitter: @JennyAGold.

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The battle continues to rage between drug companies that are trying to make as much money as possible and insurers trying to drive down drug prices. And consumers are squarely in the middle.

That’s because, increasingly, prescription insurers are threatening to kick drugs off their lists of approved medications if the manufacturers won’t give them big discounts.

CVS Caremark and Express Scripts, the biggest prescription insurers, released their 2017 lists of approved drugs this month, and each also has long lists of excluded medications. Some of the drugs newly excluded are prescribed to treat diabetes and hepatitis. The CVS list also excludes some cancer drugs, along with Proventil and Ventolin, commonly prescribed brands of asthma inhalers, while Express Scripts has dropped Orencia, a drug for rheumatoid arthritis.

Such exclusions can take customers by surprise, says Lisa Gill, an editor at Consumer Reports‘ “Best Buy Drugs.”

“We’ve talked to dozens and dozens of people who find themselves at the pharmacy counter, shocked to find out that the drug is no longer covered,” she tells Shots. Patients can appeal the decision in individual cases, but that process can be arduous.

CVS Caremark has been the more aggressive of the two prescription insurers, listing roughly 130 drugs on its “we won’t pay” list. Express Scripts lists 85 and has a policy of not banning cancer drugs or mental health medications.

The threat of kicking drugs off their covered lists — which are known as formularies — is a powerful way to drive discounts, says Adam Fein, CEO of the Drug Channels Institute and author of a blog on prescription drug markets.

“Exclusions are one reason why discounts have been growing,” he tells Shots.

Express Scripts and CVS Caremark only started actively using their lists this way in 2012. Both firms claim they’ve already extracted huge savings for their customers: the health insurance companies and private corporations who hire them to manage their prescription drug plans.

CVS says its formulary management will save its customers $9 billion over the next five years.

For 2017, the company has excluded nine drugs that it deems “hyper-inflationary” — defined as “products with egregious cost inflation that have readily available, clinically appropriate and more cost-effective alternatives,” says Carolyn Castel, a spokeswoman for CVS Caremark.

The company specifically looks at drugs whose prices more than triple over three years, Castel says.

Those drugs include three skin creams that combine an over-the-counter ingredient, such as hydrocortisone or aloe, with a generic prescription drug to make a new and expensive brand name medication.

CVS manages prescription coverage for about 75 million people. For the first time in 2017 it is dropping from its list two so-called biologic drugs — the diabetes drug Lantus and Neupogen, a medicine commonly given to patients undergoing chemotherapy to help boost white blood cells and immunity. Instead, the company will pay for alternatives known as biosimilars. It was an important move; because of the way these drugs are made, biosimilars aren’t exact equivalents of the medications they replace.

But that’s part of the strategy of formulary exclusions. The managers of pharmacy benefits pit brand-name drugs that treat the same condition against each other, rather than waiting for generic drugs to come on the market and drive prices down.

Express Scripts covers about 85 million people, according to a recent investor presentation. Spokesman David Whitrap says the company tried to avoid excluding drugs; he recognizes the exclusions are an inconvenience to patients.

“Express Scripts will only ask members to switch their medication if there is a clinically equivalent alternative,” he tells Shots, “and only if that switch delivers a significant cost savings for their employer.”

For patients, the inconvenience can be minor, or it can be a real medical issue.

“From a consumer standpoint, you can wind up with a much bigger headache, with a lot more time invested in trying to sort out your prescriptions,” says Gill.

That’s because when the excluded medications don’t have generic alternatives that pharmacists can substitute automatically, patients have to go back to their doctor to get a prescription for a new drug.

“It’s a tricky trade-off,” says Jack Hoadley, a professor and researcher at Georgetown University’s Institute for Health Policy. “Am I getting enough of a discount to offset the inconvenience?”

Sometimes the drug on the approved list doesn’t work as well for some patients as the one that’s been kicked off.

“You end up having to switch to a drug that your prescriber thinks is less than optimal for treating your particular health condition,” Hoadley says.

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Lead problems with the water in Flint, Mich., have prompted people across the country to ask whether they or their families have been exposed to the toxic metal in their drinking water, too.

When it comes to assessing the risk, it’s important to look in the right places.

Even when municipal water systems’ lead levels are considered perfectly fine by federal standards, the metal can leach into tap water from lead plumbing.

Kate Gilles moved to Washington, D.C., from Rhode Island for a job in international public health six years ago. When she was pregnant with her son, now 3, and her daughter, who turned 1 in July, she says she paid close attention to her health.

She ate better. She exercised. She followed her doctor’s orders. Gilles checked off every task on the long list of things that she was supposed to do to help protect her babies.

But that was before Flint, and it never occurred to her to test her drinking water for lead.

No one — not her pediatrician, not authorities at her local water utility and not the realtor who sold her the home she lives in — suggested that she might have a problem with lead.

In April, she learned that her home is one of more than an estimated 6 million in America that gets its water delivered through a lead service line.

When There’s Lead Underground

When there is a problem with lead in drinking water, service lines are the most likely culprit. Service lines are like tiny straws that carry water from a utility’s water main, usually running below the street, to each building.

In older cities, many of them in the Midwest and Northeast, these service lines can be made of pure lead.

Wherever lead service lines are in place, there is a risk of water contamination. The toxic metal can leach into the water whenever something jostles the pipes, like nearby construction, a heavy truck coming down the road or when the water just sits still for too long.

Civil engineer Marc Edwards, the Virginia Tech professor who helped document the lead problems with water in Flint, calls lead service lines “ticking time bombs.”

The Risks Of Low-Level Lead Exposure

Dr. Bruce Lanphear has spent decades researching low-level lead exposure, and his work is often cited by the Centers for Disease Control and Prevention. He says that while blood lead levels have been reduced drastically in recent decades, even levels as low as 5 micrograms per deciliter can lower IQs and increase the risk of attention and behavioral problems in children. For adults, lead exposure can cause kidney problems and high blood pressure.

Because it would be unethical to expose people to a known toxin, clear data are lacking on exactly how much lead a person must be exposed to before it shows up in the blood or triggers health and behavioral problems. Public health officials say that removing all lead from a person’s environment is the best course of action.

Wherever lead service lines or other lead plumbing fixtures exist, there are precautions people can take to protect themselves — if they know they are at risk. They can flush their pipes every morning. They can purchase a filter certified for lead removal. Ultimately, they can replace lead service lines and lead plumbing in the house, though those replacements can be costly.

Still, there aren’t any federal notification laws for the presence of lead plumbing as there are for lead paint. Checking the service line isn’t part of typical home inspections. Landlords aren’t required to warn tenants about lead pipes, and realtors don’t need to tell potential buyers.

Gilles, who has a master’s degree in public health, said she felt silly for not looking into lead risks from pipes. “But I also feel really angry that there’s nothing that flags it for homeowners,” she says.

Lead Regulations: ‘Illusion Of Safety’ Or Protection?

After learning that her house has lead pipes, she ordered a test kit from DC Water, the local authority. When she got the results, she was more confused than relieved. The test showed 0.7 parts per billion of lead in the water, far below the EPA’s so-called action level, set at 15 parts per billion.

But what did the results mean? “I’m marveling at the total lack of lucidity of this letter,” she says. “Because it doesn’t say whether or not we need to be concerned. I’m guessing that the EPA decided that the margin of safety was this 15 parts per billion, and we’re under that.”

Except that isn’t at all what the EPA decided.

The EPA seeks to control lead in the drinking water with its Lead and Copper Rule, created in 1991. The rule says that, depending on factors like how big a city is and how long it has been since high lead levels were last detected, water utilities have to test the water in between 50 and 100 homes with lead service lines every six months to nine years.

If 90 percent of homes have lead below the 15 parts per billion action level, the water utility passes the test. Nothing has to change. If the utility fails the test, it has to take follow-up action, including more testing and possibly changing water treatment methods.

But, critics say, there are several problems with the EPA’s rule. For one, the most severe cases are essentially tossed out of the utilities’ reports.

Also, according to the EPA’s own research, the current lead sampling protocol requires water be collected immediately after the water has been stagnant for six hours. That means they are likely capturing the water that has been sitting inside the house, rather than the water that has been sitting in the lead service line. In other words, the utilities aren’t capturing the full extent of the problem.

In addition, critics say, the EPA’s trigger for action — or so-called action level — is set too high, at 15 parts per billion of lead in the water. Too many test results above that threshold are a red flag for water utilities, a sign that they might have a lead problem.

The number is often cited as a threshold for public health, but no amount of lead is considered safe for human consumption.

Jeff Cohen helped develop the EPA’s Lead and Copper Rule back in the late ’80s. He says that the action level didn’t come from medical research; it came from water utilities.

“It was based on the little data that was available at that time from water utilities in the U.S. that had installed different levels of corrosion control treatment,” he says.

Cohen points to the goal written into the rule, which is zero lead in drinking water. The action level, he says, is “not really designed to identify a safe level of lead in drinking water. It’s simply one of many pieces of data that should be used to determine whether corrosion control treatment is working or not.”

In June, the American Academy of Pediatrics called on federal regulators to tighten lead oversight, including lowering the action level. The Academy claimed that lead thresholds are set too high, they aren’t based on science, and they create an “illusion of safety.” Dr. Lanphear was the lead author on the AAP policy.

“We’ve consistently said that no level of lead is safe,” says Joel Beauvias, the deputy assistant administrator for the EPA’s Office of Water. He said that the 15 parts per billion action level isn’t meant to be a threshold for public health.

The Safe Drinking Water Act says that the rule has to be updated every six years. The agency has been discussing possible revisions since 2010 and is looking at making improvements to the rule. But an agency spokesperson said it is too early to speculate on exactly what the agency will propose or when.

While the ultimate fix would be to replace all lead service lines and lead plumbing, that’s a daunting task. In the meantime, there is a call for greater transparency about where lead service lines are in use so that people can reduce their risks.

The EPA wrote governors in February across the country encouraging, but not requiring, disclosure.

After multiple inquiries from NPR, D.C.’s water utility published a map of the lead service lines it knows about. The map is incomplete; there are more than 13,000 homes on the map that may or may not have lead pipes. Still, the map gives residents — particularly renters — easier access to the utility’s records. In most cities, the information is still considered private and available only to the person paying the water bill.

George Hawkins, the general manager for DC Water, said it is in everyone’s best interest to make lead service line inventories public. The information helps homeowners manage risks in the short term and can encourage them to replace lead service lines.

Although lead levels have gone down significantly in D.C. since the 2004 crisis, the majority of homes the utility has tested in recent years have still shown small amounts of lead in the water — 1 or 2 parts per billion.

Hawkins says that might be a problem for certain households. “Were I [in] a household with a wife who was pregnant or small children, I’d want that number at zero or as close to zero as it can be,” Hawkins said.

Gillis decided that even small amounts of sporadic lead release weren’t OK for her two children. She and her husband decided to have their lead service line replaced in May. It cost them $1,400.

She’s had both of her children tested for lead and is reassured by the results. But she’s still angry that no one told her about the lead service line — or the potential risk — earlier.

“The argument can be made that the onus was on us,” she says. “But we didn’t even know to look at it. This should really be the duty, the responsibility of the government.”

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Retail giant Wal-Mart uses its market dominance to inflict “ruthless,” “brutal” and “relentless” pressure on prices charged by suppliers, business writers frequently report.

What if huge health insurance companies could push down prices charged by hospitals and doctors in the same way?

The idea is getting new attention as already painful health costs accelerate and major medical insurers seek to merge into three enormous firms.

Now that hospitals have themselves combined, in many cases, into companies that dominate their communities, insurance executives argue the only way to fight bigness is bigness.

No. 2 health insurer Anthem’s proposed marriage to No. 6 Cigna would let the combined company “manage the cost drivers that negatively impact affordability for consumers,” Anthem CEO Joseph Swedish told Congress last year. The bigger company could “negotiate better reimbursement rates” with medical providers, says Anthem spokeswoman Jill Becher.

In metro areas with only a few big insurers, hospital and doctor bills tend to be lower than economists would otherwise expect. If only one or two insurers are bidding to include providers in their networks, hospitals and doctors must submit to the offered deal or risk getting shut out of a huge piece of business.

“There’s some literature out there that does show that when you have relatively concentrated insurance markets, they tend to keep actual hospital costs down,” said Yevgeniy Feyman, a researcher at Harvard T.H. Chan School of Public Health and a fellow with the Manhattan Institute.

The American Hospital Association as well as the American Medical Association, trade groups for hospitals and doctors respectively, have long worried that insurance mergers do just that. Now that Anthem is trying to buy Cigna, and No. 3 health insurer Aetna wants to buy No. 5 Humana, they’re even more concerned.

Both deals “have the very real potential to reduce competition substantially” and “diminish the insurers’ willingness to be innovative partners with providers and consumers,” AHA lawyer Melinda Reid Hatton wrote to antitrust authorities after the combos were announced.

But hospitals have built their own market power through numerous mergers, giving them broad ability to raise prices paid by employers, taxpayers and consumers beyond what a competitive market would allow, economists argue.

Hospitals “are much more concentrated than insurance markets,” said Glenn Melnick, a health care economist at the University of Southern California who has researched the subject. “They face a lot less competition than the [health] plans do.”

Why not give hospital giants somebody their own size to negotiate with?

For one thing, insurers might just pocket higher profits from low provider prices instead of passing the savings to consumers and employers.

“I don’t find any evidence that reduction in provider payment leads to reduction in insurance premiums, and I don’t know of any study that does,” said Leemore Dafny, an expert in insurance markets and an economist at Harvard Business School.

Feyman suggests requiring insurers in concentrated areas to spend 90 percent of their revenue on medical care. That might reduce their ability to boost profits with premium increases while preserving their ability to hold down hospital and doctor costs, he said.

But he sees such a measure as only a “worst-case scenario” for the most monopolized insurance markets, not a recipe to allow the Anthem and Aetna deals to go through.

Antitrust regulators are siding with the hospitals and doctors.

In late July, the Justice Department sued to block both insurance mergers, arguing that competition is important to keep premiums down and that the deals “would leave much of the multitrillion-dollar health insurance industry in the hands of three mammoth insurance companies.”

They also rejected the Wal-Mart argument, which is related to what economists call “monopsony,” a concentration of buying power.

Monopsony is the opposite of monopoly: Instead of using market dominance to raise prices for consumers, huge buyers force down prices from suppliers. Wal-Mart is often described as holding monopsony-like power.

But critics of the insurance deals say monopsony can go too far. If the buyer pushes prices too low, suppliers stop producing, making needed goods and services unavailable.

“As a result of the merger, Anthem likely would reduce the rates that … providers earn by providing medical care to their patients,” the Justice Department argued. “This reduction in reimbursement rates likely would lead to a reduction in consumers’ access to medical care.”

Accepting Wal-Mart logic for health care might bolster arguments for an even bigger, more powerful buyer of medical services: the government.

A single-payer, government health system, of the type advocated by Democratic presidential candidate Bernie Sanders, would be the ultimate monopsony: one buyer, negotiating or dictating prices for everybody.

Neither the hospitals nor the insurance companies want that.

Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Neither of them is affiliated with health insurer Kaiser Permanente. You can follow Jay Hancock on Twitter: @jayhancock1

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A few months ago, when Dr. Thomas Lee logged in to his patients’ electronic medical records to renew a prescription, something unexpected popped up. It was a notice that one of them had died.

Lee, a primary care doctor at Brigham and Women’s Hospital in Boston, was scheduled to see the patient in three days.

“I was horrified,” he says. The patient had been in his 80s, and his wife had died a few months before. “And everyone in medicine knows that when someone dies, there’s an increase in risk of death for their spouse over the next six months.”

He wanted to know what had happened, but he couldn’t find anything in the medical records or in a Web search. “I just felt really guilty that I had not pushed harder to get him in sooner,” says Lee. When he couldn’t find out anything, he decided to phone the man’s house to offer condolences — maybe even to apologize.

“So I called, and to my shock he answered,” says Lee. It was the patient, a retired professor living in Boston.

“I assume you’re calling about my death,” the man said.

“It gave me goose bumps,” says Lee. “I said, ‘Yeah, I guess I am.’ And then he explained to me what had happened.”

The professor explained that he’d been dealing with his own death for the past two weeks. It all started when he went to the ATM, only to find that he no longer had access to his bank account. When he went to the pharmacy to pick up his medicine, he found he no longer had health insurance.

Soon after, he got a letter in the mail from the Social Security Administration offering condolences about his recent loss of life and informing him that his monthly payments would end and that payments made since his “death” a few months prior would be removed from his bank account.

Because of a clerical error, the Social Security Administration believed he had died in December. That information had quickly spread to banks, pharmacies, hospitals. His doctor’s appointments had been wiped out and other patients had taken his place. Essentially, he’d been locked out of his life.

“It was a major nuisance, let’s put it that way,” he says. And to add insult to death, says the professor, “Social Security actually gave my date of death as the same date as my wife’s, which was really creepy. Not pleasant to see.”

He spent weeks on the phone trying to correct it all. In the process (which was reminiscent of a certain Monty Python skit), the man learned that because he had supposedly died, all his information — his full name, Social Security number, birthday and supposed death date — had been released to the public in a document called the Death Master File.

The publication of the file is a measure taken to prevent fraud, such as someone taking out a credit card in a deceased person’s name. But for those who are still living, the file is a recipe for identity theft. (That’s why we’re not naming the man.)

“I’m keeping an eye out fairly carefully to see if anything goes awry,” he says. “But it’s also somewhat amusing to know that you really are alive when everybody thinks you’re dead.” He even got a hug from a surprised doctor who didn’t expect him to show up for his canceled appointment, let alone in relatively good health.

It took about two months to resurrect him in the federal system.

And as Lee wrote this week in the New England Journal of Medicine, what happened to the professor happens to thousands of people each year.

“When we called the information system folks to bring him back to life, the response that we got was, ‘Oh no! Not another one,’ ” says Lee. There’s even a frequently asked question about it on the Social Security Administration’s website.

“And this is where I made the transition from thinking about this as something funny to something important,” says Lee. “We have a society where information travels quickly and there are many great things about it, but what if that information is wrong? There just is no process in most information systems for saying ‘Oops, we were wrong.’ “

In 2011, an audit found that about 1,000 people a month in the U.S. were marked deceased when they were very much alive. Rona Lawson, who works in the Office of the Inspector General at the Social Security Administration, says that number has gone down. It’s now around 500 people a month.

“But for those 500 people, it’s still a big impact on their lives, so we’d like to see the number even lower,” she says. Because most of them are Social Security clients, she says, they likely tend to be retired and over the age of 60.

Lawson says 90 percent of the time, the cascade of misinformation starts with an input error by Social Security staff — a regular mistake on a regular office day that just happens to kill a person off, at least on paper.

And she says the professor’s case, where someone is given the death date of their spouse, is fairly common.

“Oh, yes,” says Lawson. “That was a very common cause for the errors that we saw.”

In 2011, Congress passed legislation to remove a few pieces of information from the Death Master File – the state, county and ZIP code where a person lives or lived. And in 2013, based on recommendations by Lawson and her colleagues, Congress passed another piece of legislation to keep a person’s information from becoming public until 3 years after their death date. The change will kick in in late November.

“So, that’s an improvement — more time to get it right before it gets into the public domain and starts spreading to all the different websites and so forth,” says Lawson.

She says the information would still go to authorized users like banks and credit reporting agencies, so while the change might keep back identity thieves, it wouldn’t do much to prevent the headache that the retired academic went through.

“At least we can keep the information restricted to those who have a right to know it and not just everybody that has an Internet access point,” says Lawson.

But wait a minute. Putting aside the headache of having to convince everyone you’re still alive just so you can withdraw cash from an ATM, or pick up your prescriptions, might a fake death be seen as an opportunity? Maybe to disappear to a tropical island and start a new life?

“I never thought of that,” says the professor. “But that might have been an interesting way to proceed.”

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