Last year, the Texas legislature approved a $350 million cut in Medicaid reimbursement rates to early childhood intervention therapists and providers. The cuts, made to help balance a billion dollars in property tax relief, affect the most vulnerable Texas children — those born extremely prematurely or with Down syndrome or other genetic conditions that put them at risk for developmental delay.

For months, providers of in-home physical, speech and occupational therapies have continued to serve children who have disabilities, despite mounting financial losses. Now some have had to shut their doors, curtail services or halt their home-visit programs, leaving many children without treatments their parents feel are crucial to the kids’ well-being.

That’s what’s happened to 2-year-old Haylee Crouse, who lives with her three brothers and sisters in the small town of Whitehouse, in East Texas. When she was just 8 days old, Haylee contracted newborn meningitis. It left her with some mental and physical deficits, and she started having periodic seizures.

But at the age of 9 months, Haylee started getting home visits and treatments from physical, occupational and speech therapists, several days a week. The therapists worked for the non-profit Andrews Center, in Tyler, Texas. Amanda Crouse, Haylee’s mother, said the therapists have made all the difference in the world for her baby girl.

“They were a lifesaver to her and to our family,” Crouse said. “They worked her hard. For example, she was not rolling over. They taught her how to roll over. They then taught her how to crawl, pull up on the couch and then, finally, she learned how to walk.”

Today, Haylee walks and laughs and is learning to talk. But all this progress is now at risk, her mother says. The state’s cuts to its Texas Medicaid Acute Care Therapy Programs have meant that the one provider of early childhood intervention treatment in Tyler — which has provided in-home therapy to hundreds of families in five East Texas counties — can no longer do so. And so, that’s it.

On the 2-year-old’s last day of therapy, Crouse said, “her therapist actually cried. Gave her a hug, said goodbye. We took a picture, just to kind of document that moment. And it was an emotional day.”

As news of the cuts became public, parents and grandparents of children who have disabilities flocked to Austin in March to implore the state Senate not to do this. Mothers wept in frustration as they testified before the Texas Senate Finance Committee about the vital these early interventions play in their children’s quality of life.

“This is Elijah,” Mary Castro told the committee members that day, holding up a photo of her 2-year-old son. “When my son was born, my husband and I found out eight days later that he has Down syndrome. He’s medically fragile and developmentally delayed.”

Without the support of early childhood intervention therapists that Medicaid provided, Castro told the lawmakers, “Elijah would not be walking, signing, doing word approximations, dancing to music, or interacting with his peers. With that said he is delayed. Quite delayed. But we love him, and he loves people.”

Republican Sen. Jane Nelson, who heads the Texas Senate’s finance committee, tried to reassure Castro and other anguished parents that the state would make sure there would be no interruption of services, whatsoever.

“Every eligible child for these services will continue to receive them,” she told the parents. “And we’re going to monitor it and we’re going to make sure that happens.”

But that’s been a promise the state has not been able to keep, and it’s in the rural parts of Texas where collapse of service has already begun.

“Sometimes you need to come out to these rural areas and see how things are done — and how they have to be done — and even talk to some of the parents before you just decide to cut a program,” said Waymon Stewart, the executive director of the Andrews Center in Tyler.

Stewart predicts that children with profound disabilities will suffer most from the closure of his program and others like it, especially in rural regions. It’s not uncommon for early childhood intervention therapists to have to drive an hour each way to get to far-flung patients. For children who are prone to seizures, or who have to be connected to machines for daily living, long trips in the car several days a week for treatment in other clinics are simply not going to happen, he says.

The cuts made in the state capital took a $312,000 bite out of his center’s budget, forcing him to terminate 20 employees.

“It really hit us hard,” Stewart said. So we were really digging into reserves to try to make this program last, and we did for a year.”

But after that, he said, “we just decided to give our notice. We couldn’t continue to do it unless the rates were changed.”

In Wichita Falls, 235 miles away, the same thing has transpired at the North Texas Rehabilitation Center, which serves 10 North Texas counties. Mike Castles, the center’s president, said they hung on for a year, but it cost them more than $200,000 in losses. So, after 30 years of service to thousands of North Texas families, that’s it for them too.

“It’s all about money,” he said, “and it created some internal problems financially with our other programs as well. There’s just so much money to make this all work. We tried to for a year; it got worse instead of better with even more bad news coming for this fiscal year.”

The state is actively hunting for new therapy providers. But the trick is finding new providers who can make work the same difficult financial circumstances that drove previous health providers out of the program.

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When Mike Stabile first moved to Los Angeles in 2011, he was struck by a freeway billboard that showed a line of cocaine and an overturned shot glass. The caption read: “You know why. Free HIV test.”

“I literally pulled over the car and was like what’s going on?” Stabile remembers. “I was having a panic attack.”

He describes another billboard showing two men in bed, looking nervous, and posing this question: “Trust Him?”

“As a gay man, you really have to fight against this idea that you’re constantly in danger,” says Stabile, who came of age during the height of the AIDS epidemic in the ’80s. “Fear and stigma actually works against people getting tested.”

Stabile is a documentary filmmaker, activist and a spokesperson for the Free Speech Coalition, the trade association for the adult entertainment industry, which is opposing Proposition 60.

He says he sees the same heavy-handed, moralistic attitude behind Proposition 60, the California ballot initiative that would require adult film performers to use condoms on porn sets. If the performers don’t comply, and state regulators fail to enforce the mandate in a timely manner, any Californian can sue the film producer.

“Its success depends on stigma around sex, stigma around porn,” says Stabile.

The man behind Proposition 60 — and all those billboards — is Michael Weinstein, president of the AIDS Healthcare Foundation and a longtime maverick in gay activist circles.

The nonprofit runs pharmacies and provides HIV care in 13 states and 37 countries, and it gave away 38.5 million condoms last year. It’s putting $4.5 million from its pharmacy sales into backing the Proposition 60 condom mandate. (It has also put $14.7 million behind Proposition 61, Weinstein’s initiative aimed at lowering prescription drug prices in California.)

Weinstein says he’s steadfastly promoting condoms when other groups seem to have forgotten them.

“It’s unfashionable,” he says. “I was on a panel discussion and one of the guys said, ‘You’re acting like our mother telling us to wear galoshes.’ And my reaction was ‘Yeah, somebody needs to do that!’ I mean, I’m not trying to win a popularity contest, obviously.”

For Weinstein, Proposition 60 is primarily about protecting adult film workers against sexually transmitted diseases — at a time when infection rates are at a 20-year high across California. But it’s also another large-scale condom campaign.

“A lot of people get their sex education through these films, and I think it’s sending a bad message,” Weinstein says. “I don’t want young people to be educated that the only kind of sex that’s hot is unsafe sex.”

Weinstein has long taken controversial positions, but he’s often landed on the right side of history. In the 1980s, he fought lawmakers in California who wanted to quarantine AIDS patients. When nurses were afraid to touch patients, leaving them languishing in the hallways of county hospitals, he helped set up one of the first AIDS hospices, where people could die with dignity and compassion. And when AIDS drug cocktails became available, Weinstein risked bankruptcy to provide the life-extending drugs to uninsured patients.

“We decided we had a moral obligation to give them, and we paid for them and those people lived,” he says.

One of Weinstein’s more recent and most unpopular stances is on pre-exposure prophylaxis, or PreP, the daily pill that can prevent people from contracting HIV. Many activists consider it a powerful tool for prevention.

Weinstein doesn’t see PreP that way. “It’s often taken in conjunction with crystal meth and other party drugs,” he says. “It’s really a get-out-of-jail-free card.”

He says it gives people a free pass to not use condoms and be reckless, driving a rise in other STDs, which recent studies bear out.

But other public health groups say PreP will reduce HIV transmission and save lives, which the studies also support. “It’s not helpful to have one of the largest HIV organizations in the world trivializing it or downplaying its importance,” says Courtney Mulhern-Pearson, director of state and local affairs at the San Francisco AIDS Foundation.

Her group, along with AIDS Project LA, is opposed to Proposition 60, in part, because it ignores PreP. Mulhern-Pearson says Weinstein’s singular focus on condoms is outdated and unrealistic.

“Condom fatigue is real,” she says. “And I think that all of us are probably not realistic and not forthcoming about our condom use.”

History and opposition

Weinstein has been fighting to mandate condoms in adult films for years. While federal and state worker safety laws technically already require producers to protect performers against STDs with condoms, the law is largely ignored and poorly enforced. Weinstein has pushed California’s Division of Occupational Safety and Health, known as Cal/OSHA, to refine and clarify its regulations, without success. He’s backed local measures in Los Angeles County to require condoms, which passed, but enforcement has, again, been minimal.

At every turn, the adult film industry has fought the condom mandates. Some say it would force them to make products that won’t sell, or that it would drive the business underground or out of state.

In mid-October, more than a hundred adult film performers rallied outside Weinstein’s office in Los Angeles to protest Proposition 60. They chanted slogans like “Our Bodies, Our Choice!” and carried signs that read “Where is Weinstein?”

They say they prefer to rely on the industry’s bi-monthly testing protocol over condoms. Performer Ela Darling says condoms don’t work on porn sets; they’re uncomfortable and cause friction rashes.

“The sex you have on camera isn’t like the sex you have at home,” she says. “It’s like Olympic-level, athletic sex.”

She’s frustrated that Weinstein is ignoring performers’ concerns.

“He will not hear us, he will not speak to us, but he’s happy speaking for us,” she says. “And that’s the problem.”

Weinstein defends his refusal to meet with the adult film industry.

“I’m not going to put myself in a position of debating people where all they do is call me names,” he says.

Weinstein’s critics have called him bombastic, a bully. They compare him with Donald Trump. They post tweets that refer to him as the “Condom Nazi.”

“In case they haven’t noticed, I’m Jewish and I’m gay, OK?” he says. “It makes my skin curl.”

Weinstein says he’s never liked the limelight. He’s had to develop a thick skin to stay in this business, to stand up for what he believes is the moral thing to do, for what he believes is his responsibility toward young generations.

Yet it’s clear that the criticism bothers him.

“He’s been hurt,” says Sharon Raphael, an old friend and fellow activist. “I know that it hurts him.”

Still, she adds, everyone knows he’s a force to be reckoned with.

“When most people would be down and out, strike three, he’d get up again,” she says. “He never gives up. Ever.”

This story is part of a reporting partnership with NPR, KQED and Kaiser Health News.

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The number of preterm births in the United States rose in 2015 for the first time in eight years, according to data presented Tuesday by the March of Dimes. Babies born too early face a risk of health complications that can last a lifetime.

The organization also reported that racial minorities continue to experience early labor at higher rates.

Preterm births increased from 9.57 to 9.63 percent of births in 2015, an additional 2,000 babies born prematurely in the U.S., the report found.

Seven states — Arkansas, Connecticut, Idaho, Nebraska, New Mexico, Utah and Wisconsin — had higher preterm birth percentages than in 2014. Four states — Vermont, Oregon, New Hampshire and Washington — earned the highest marks from the organization for having a preterm birth rate at 8.1 percent or below.

Overall, the national uptick earned the U.S. a C rating on an A to F scale. The March of Dimes researchers used data compiled by the National Center for Health Statistics and assigned grades using a formula that compared the state’s current prenatal birth rate to the national average in 2014 and the organization’s goal of 8.1 percent.

Despite its wealth and medical prowess in saving the lives of premature newborns, the U.S. lags behind the majority of industrialized countries and some less developed ones in preventing their early arrival. According to the latest data available from the World Health Organization, the U.S in 2010 ranked in the middle of the pack, falling behind Somalia, Afghanistan and Thailand.

Lowering the rate of preterm births to 8.1 percent would place the U.S. among countries with the lowest rates of preterm births. The March of Dimes says the U.S. should reach this goal by 2020, but the lack of progress signals to Edward McCabe, the chief medical officer of the organization, that new responses are needed. “We feel that this is a recognition that we need to work harder as a nation, that we need to focus,” he says.

Preterm birth is defined as a child born before 37 weeks of pregnancy. It’s the leading cause of neurological disorders such as cerebral palsy, according to the Centers for Disease Control and Prevention, and also can cause blindness, hearing problems and developmental delays. It’s the single largest cause of infant death.

Preterm births cost society more than $26 billion a year, according to a 2005 report from the National Academy of Medicine.

Disparities continue across geographic, ethnic and racial lines, McCabe said. Asians and Pacific Islanders fared best, with a preterm birth rate of 8.5 percent, a full percent lower than the national average. Preterm birth rates in Hispanics and whites hovered at about 9 percent.

African-American women were most likely to give birth prematurely, with 13 percent of births affected, according to the report. States with large African-American populations and a lack of access to health care, such as Louisiana, Mississippi and Alabama, had the highest percentages of preterm births.

“We want every baby, no matter where they’re born, no matter their birth ethnicity, to be born with the best start in life,” McCabe says.

Vermont officials agree. The state boasts a 7.3 percent birth rate, the lowest rate in the U.S. It runs the Vermont Regional Perinatal Program, which allows smaller medical facilities to transfer high-risk pregnant women to larger tertiary hospitals. It also supports nurse home visits to help new mothers.

Breena Holmes, maternal and child health director at the Vermont Department of Health, says though she is proud of the state’s low rate, she still worries that there are too many preterm babies born there. “I’m still aware that every time a baby comes early, there was a system problem that we could have worked on,” she says.

The racial and ethnic divides reveal an overemphasis on medical intervention and a lack of knowledge among women, says Claire Brindis, director of the Philip R. Lee Institute for Health Policy Studies at the University of California, San Francisco. Planning for pregnancy does not start with prenatal care, she says, but with understanding risk factors and a woman’s wishes regarding family planning.

The causes of preterm birth aren’t clear, but risk factors include high blood pressure, diabetes, smoking and having had a previous premature birth.

While not every preterm birth can be prevented, McCabe acknowledges, a woman should be able to have the best pregnancy possible.

“Every woman is trying to do the best that she can,” he says. “We need to show her what can be done.”

Kaiser Health News is an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.

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Young children and teenagers are increasingly likely to be poisoned by opioid painkillers that are often prescribed for other family members, a study finds.

The rate of children hospitalized for opioid poisoning increased 165 percent from 1997 to 2012, from about 1.40 per 100,000 kids to 3.71 per 100,000.

“Opioids are ubiquitous now,” says Julie Gaither, a postdoctoral fellow at Yale School of Public Health and the study’s lead author. “Enough opioids are prescribed every year to put a bottle of painkillers in every household. They’re everywhere, and kids are getting into them.”

The study, which was published Monday in JAMA Pediatrics, examined more than 13,000 hospital-discharge records from 1997 to 2012 for opioid poisonings and used census data to extrapolate rates. The discharge data was collected by the Agency for Healthcare Research and Quality.

The data stops in 2012, so it may not reflect more recent trends in opioid prescribing and public awareness. But the findings track with adult rates of abuse and addiction, which have dropped since 2012 but remain troublingly high, experts say.

The rate of toddlers hospitalized more than doubled, going from 0.86 per 100,000 to 2.62 per 100,000. It’s likely that these very young patients take the drugs because they think they are candy or a treat. Opioids can be dispensed as pills, patches or a flavored lollipop.

Teens are also at risk of overdosing on their parents’ meds. Of all children, this age group is most likely to be hospitalized for opioid poisoning, and teens are more likely to do be poisoned deliberately — likely, the researchers wrote, because teenagers are at a particularly high risk of depression and suicide. In 2012, 10.17 per 100,000 teenagers were hospitalized for opioid poisoning.

The findings, Gaither and her co-authors say, indicate a need for public health approaches that not only address overprescribing, but also try to raise awareness about the need for safe storage of these painkillers.

Doctors need to to talk to patients about ways to store drugs safely, especially if children are in the household, Gaither says.

That’s a good idea in theory, says Jonathan Chen, a physician at Stanford Medicine who has researched how guidelines for prescribing opioids affect primary care. But doctors already face a lengthy list of sensitive subjects they should discuss with patients. And they aren’t always conditioned to consider how a patient’s medications could affect other family members.

“Conceptually, yes, of course that should be part of the conversation,” Chen says. But he notes that doctors have a long list of things to discuss with patients, and “there’s a lot of things we should discuss.” Chen was not involved with the study.

Pediatricians could also play a role by asking parents at well-child and well-baby visits about whether there’s a risk of children being exposed to opioids. But that sort of screening hasn’t traditionally been drilled into doctors the same way as discussing other risks, such as safe storage of cleaning supplies, whether the family has a swimming pool and whether there are guns in the home.

Doctors also may not be conditioned to considering toddlers as particularly at risk of opioid poisoning.

“This is largely seen as an adolescent problem or an adult problem,” says Sharon Levy, who directs the adolescent substance abuse program at Boston Children’s Hospital and is an associate professor of pediatrics at Harvard Medical School. “But this paper really highlights that this really knows no age boundaries.” Levy was also not involved with the study.

It’s also unclear, Levy says, what the long-term health effects, including addiction, are for children who ingest opioids they weren’t prescribed.

And there are serious short-term risks, including death. “Opioids cause respiratory suppression,” she said. “If you are a 30-pound person and getting into the medication that was supposed to be for a 150-pound person, it’s going to be a whopping dose for you.”

The findings also suggest doctors should be more thoughtful in prescribing to children, especially teenagers. About 1 in 10 high school students reports having taken opioids for a nonmedical reason, and close to 40 percent of them say they got those drugs through their own prior prescriptions.

The American Academy of Pediatrics notes that the rate of young patients being prescribed opioids almost doubled between the 1990s and 2000s.

The Centers for Disease Control and Prevention has been pushing doctors to prescribe opioids more safely by prescribing for just a few days. That could help reduce the number of leftover pills. Large prescriptions — coupled with the fact that many people don’t know how to dispose of drugs when they no longer need them — can make it easier for children and teens to get ahold of them, Gaither says.

That’s an important factor to consider, Chen says. “Leftover pills aren’t used, but do they get returned to the pharmacy, or thrown in the trash? Nope. They’re stored in the medicine cabinet.”

Smaller prescriptions will likely help, but they won’t solve everything, Chen notes. After all, there are situations where a larger opioid dosage makes sense. For instance, someone suffering long-term cancer probably needs a larger amount of heavy duty painkillers, even if he or she has children in the house.

But the risk to children must be a part of the conversation, Gaither says. “We’ve got to pay attention to children and the toll the opioid crisis is taking on them,” she says. “Kids make up about a fourth of the U.S. population, and they’re suffering from this crisis, too.”

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Just about every day, genetic counselor Shawn Fayer heads to the maternity ward at Brigham and Women’s Hospital in Boston and tries to convince new parents to give him a blood sample.

Fayer is offering gene sequencing for newborns. It gives parents a tantalizing look at their baby’s genetic information.

New parents Lauren and Ian Patrick, from Marion, Mass., were excited when they were first approached earlier this month.

“My initial reaction — why wouldn’t someone do this? Why wouldn’t they want the information?” Ian Patrick says as he cradles his newborn son, Finn. “For me, more information is better, even if it’s not always good.”

If his parents sign him up, Finn would join the BabySeq project, an NIH-funded study led by Dr. Robert Green, a medical geneticist at Brigham and Women’s Hospital. With genetic testing getting cheaper and cheaper, Green wants to figure out what happens when parents know their child’s genetic blueprint from day one.

Half of the babies who join the study will have their protein-coding genes sequenced and screened for variants that are associated with diseases of childhood, with a method called whole-exome sequencing. The other half will get the regular heel-prick blood test offered to all newborns which screens for major genetic disorders like cystic fibrosis.

Researchers will follow both sets of babies to figure out how genetic sequencing impacts them. They want to find out if knowing a child’s genetic makeup could actually make them healthier, or if it could increase their health care costs, or even change their relationship with their parents.

“We are looking for all sorts of unanticipated variations in DNA,” Green says. “And we say right up front we don’t know what they all mean. We don’t know what they’re all going to mean for your baby,”

Green is particularly interested in a list of 1,514 genes where there are good reasons to reveal a mutation because a disease might be treated or prevented. But there are so many changes in everyone’s DNA, he says he’s finding something to report in every baby he sequences.

Right now, that’s a pretty small number of babies. Green has sequenced the genes of 51 newborns so far, and he’s found five who have genetic mutations families wouldn’t have known about otherwise. Two babies have pharmacogenetic variants — mutations that mean certain drugs might not work as well on them. Three have heart conditions they inherited from a parent who appears to be totally healthy.

One of those babies is Kai Gracia. His parents, Alyssa and Jason Gracia, agreed to the test when Kai was just a few days old. They didn’t expect to find much. Alyssa had her own genome sequenced a few years before, and the information she got was mostly trivial — she learned she metabolized caffeine particularly quickly and she discovered she didn’t have the photic sneeze reflex, meaning she wasn’t likely to sneeze when suddenly exposed to bright light. So when the results on her baby came back,she was shocked. Right there in Kai’s genetic report was this: supravalvular aortic stenosis.

It turns out Kai has a mutation in a gene that codes for a protein called elastin. Elastin helps heart muscles bend and stretch. Not producing enough of it can cause the aorta to narrow. People can die from this, or need multiple surgeries as they grow.

Now that she knew her baby might get sick, Alyssa Gracia had lots of questions. Would Kai be able to play sports when he got older? Did he need surgery? Could crying too much be dangerous?

She made appointments with pediatric cardiologists and brought in Kai’s genetic report. One doctor said he looked fine, and only needed to be monitored every few years. Another said his parents should bring him back after just a few months. Usually, a condition like Kai’s isn’t diagnosed until a child is showing symptoms. That means doctors still aren’t quite sure how to treat Kai.

This is the kind of story that both thrills and terrifies the observers of this new technology, according to Green.

“There’s no consensus on how to manage these findings,” he says. And it’s unclear if the follow-up is worth it, or if it might actually do harm.

And gene sequencing reveals medical information not just about one person, but potentially a whole family. So all that follow-up is being done not just on Kai, but on his dad and his grandmother — all people who might be carrying this gene and might be at risk themselves.

So what can families do with all this information? Dr. Green says that for one family, this genetic report was potentially lifesaving.

It showed an inherited mutation in the baby’s BRCA2 gene, which increases the risk of breast, ovarian, prostate and pancreatic cancers. This means not only is the baby at risk, but the child’s mother or father could be, too.

Before they told the family, the researchers had to deal with “a really pernicious ethical problem,” says Green. He and his colleagues had agreed they would only tell parents about genetic variants that could impact babies in childhood, since the children weren’t able to decide for themselves whether they wanted to know their genetic risks. BRCA2 causes cancer in adults, not children.

But this information was so important, Green decided to break protocol.

“You know what the first four words were out of the mother’s mouth when she was told?” Green asks. ” ‘Oh, that explains it.’ “

It turns out the mother knew distant relatives who had died from cancer, but she hadn’t thought it meant anything for her. Without her baby’s test, she might never have learned about her own risk.

Not every mutation is actionable like this. Green is also finding a lot of single recessive mutations for conditions like cystic fibrosis, Tay-Sachs, and sickle cell. Since it takes two mutations, one each from mother and father, to cause the disease, it becomes an issue only when these babies grow up and decide to have children themselves.

One thing Green hadn’t anticipated is how hard it has been to convince new parents to do this screening in the first place. Early research showed the majority of parents were interested in the medical information. But 94 percent of parents Green and his team are approaching are saying no.

Lauren and Ian Patrick, the parents of baby Finn, are a good case study.

Initially, they were convinced they wanted the screening. But after an hour talking to a genetic counselor about all the ways this sequencing could go wrong, they decided against it.

They learned that any genetic sequencing would go in their son’s medical record, and it wouldn’t be able to be removed. And while federal law prohibits genetic discrimination by health care providers and in the workplace, life insurers can still use genetic information to pick and choose who they’ll sell policies to. By the time the meeting was over, the Patricks’ excitement had been replaced with concern.

“It really gave me pause that this would be part of the medical record that private companies would have access to,” Lauren Patrick says. “That was my full stop in the end.”

After all, for the first time she’s making a decision for someone who has no say, she says. “That’s the biggest thing on my mind, this new dynamic.”

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The largest provider of health coverage on the Affordable Care Act’s online marketplace in Maine has dropped coverage of elective abortion services.

Community Health Options, an insurance co-op, decided to eliminate the coverage as it tries to dig itself out of a $31 million financial hole that it accumulated in 2015. (It’s one of six co-ops remaining of the 23 initially created by the Affordable Care Act.)

“This decision was really driven by economic considerations,” says CEO Kevin Lewis, “as well as the construction of the Affordable Care Act and how it regards essential health benefits in the individual marketplace.”

Elective abortions aren’t considered an essential health benefit under the federal health care law. Neither is adult vision care, which Community Health Options also dropped. Both services were included in all of the 56,291 policies the co-op sold on the individual market in 2015.

Lewis says he can’t pinpoint exactly how much the co-op will save, but eliminating elective abortion coverage is one of several changes the co-op made to rein in an already steep premium hike of 25 percent. Without the changes, Lewis says, the average increase would have been 33 percent.

While Community Health Options describes the change in abortion coverage as one piece of an overall strategy to contain costs, abortion services providers in Maine are calling it a major decision that erects barriers to women’s health care.

“It further stigmatizes a normal procedure that we’re trying to help people understand is part of the comprehensive experience of women’s health care,” says Andrea Irwin, executive director of the Mabel Wadsworth Health Center in Bangor, one of three main providers of abortion services in the state.

Though Community Health Options says it provides coverage for birth control above and beyond the requirements of the Affordable Care Act, Irwin says sometimes birth control doesn’t work and women need another option. Most people buying insurance in the online marketplace “are by definition working people with low to moderate income who need help buying health coverage,” she says.

A spokeswoman for Planned Parenthood of Northern New England, Nicole Clegg, says she appreciates the financial issues Community Health Options is facing but is skeptical that cutting coverage of abortion services will do much to help buoy the co-op. The cost for a first trimester abortion is about $550, she says. Community Health Options says 33 women in Maine used their elective abortion coverage in 2015.

Clegg says Community Health Option’s decision can’t be viewed in isolation. “You kind of need to look at the larger strategies that have been deployed by Congress, by legislators, to restrict access to safe and legal abortions,” she says. “And one of the tools that they use is to make it harder for insurance to cover it.”

Abortion is the only service under the Affordable Care Act that is explicitly allowed to be banned, says senior policy analyst Laurie Sobel of the Kaiser Family Foundation. Twenty-five states ban it, she says, and “six of the remaining states that have no ban on abortion coverage did not have any plans that offered coverage in 2016.”

For plans that do provide coverage, there is administrative complexity. Funds for abortion services must be segregated, and insurance companies are subject to extra reporting and audit requirements.

Even though the state of Maine doesn’t ban marketplace coverage, Sobel says Community Health Options’ decision is “a reflection of abortion coverage being extremely restricted in the country as a whole.”

This story is part of a reporting partnership with NPR, local member stations and Kaiser Health News.

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Federal regulators said 12 U.S. hospitals, including well-known medical centers in Los Angeles, Boston and New York, failed to promptly report patient deaths or injuries linked to medical devices.

The Food and Drug Administration publicly disclosed the violations in inspection reports this week amid growing scrutiny of its ability to identify device-related dangers and protect patients from harm.

Some of the reporting lapses were found at Massachusetts General Hospital in Boston, New York-Presbyterian Hospital and two hospitals in Los Angeles — Ronald Reagan UCLA Medical Center and Cedars-Sinai Medical Center.

Dr. Jeffrey Shuren, director of the FDA’s Center for Devices and Radiological Health, said the violations pointed to a larger problem among hospitals nationwide in reporting patient harm tied to medical devices.

“We believe that these hospitals are not unique in that there is limited to no reporting to FDA or to the manufacturers at some hospitals,” Shuren wrote Monday in an agency blog post. “Hospital staff often were not aware of, nor trained to comply with, all of the FDA’s medical device reporting requirements.”

Under federal rules, hospitals have 10 days to report serious injuries potentially caused by devices to the manufacturer and notify both the manufacturer and the FDA about any deaths that may have resulted. Manufacturers are required to file reports to the FDA within 30 days of learning about an injury or death that may have been caused by a device. For the most serious problems that would require immediate action to prevent major public health harm, companies have five days to report them to FDA.

It’s hard to discern from the FDA inspections which devices were involved or other details in many cases because the reports released publicly are brief and partly redacted by the FDA. The reports indicate that in some cases hospitals reported events late and in others not at all.

At Massachusetts General, FDA investigators found reporting delays of 10 months and 18 months in two separate patient deaths related to devices.

In a statement, hospital spokeswoman Terri Ogan said the FDA’s findings all have been addressed. “Massachusetts General Hospital takes its reporting obligations very seriously and strives to comply with all requirements in a comprehensive and timely manner,” she said.

At Huntington Memorial Hospital in Pasadena, Calif., an FDA investigator found that a patient died from complications related to a multidrug-resistant infection and cardiac arrest following a procedure involving a duodenoscope, a long and flexible instrument put down a patient’s throat.

According to FDA records, the hospital learned through test results that the patient’s infection was likely related to 14 other confirmed infections caused by contaminated duodenoscopes. “However, this death was not reported to the FDA and the manufacturer by your facility,” the FDA inspector wrote in a December 2015 report.

A spokeswoman for Huntington Hospital, Eileen Neuwirth, said, “We have taken steps to ensure rigorous compliance going forward.”

Many of the hospitals involved — such as Cedars-Sinai — said they welcomed the agency’s feedback and supported efforts to improve device oversight, but some disputed them or offered explanations.

New York-Presbyterian said in a statement that it filed medical device reports “in accordance with FDA regulations” and none of the agency’s findings related to the quality or safety of patient care. Also in a statement, UCLA said it promptly reported scope-related cases to the FDA but that the agency asked for duplicate reports through a separate system.

The findings underscore concerns raised by a Senate report in January, which exposed reporting failures by hospitals as well as mistakes by device makers that contributed to multiple superbug outbreaks across the U.S. from contaminated duodenoscopes. The FDA’s oversight of medical devices was also faulted in the report.

As many as 350 patients at 41 medical centers worldwide have been infected or exposed to contaminated duodenoscopes from 2010 to 2015, according to the FDA.

The agency initiated its investigation of hospitals’ reporting in December 2015, a month before the Senate report was released. But the agency was already under fire by then for spotty oversight of duodenoscope manufacturers and other devices.

Shuren said in his blog post that the agency focused on 17 hospitals where safety issues had occurred involving either duodenoscopes or power morcellators, a surgical tool used in hysterectomies. Morcellators are used to cut up benign growths called fibroids, but the FDA has warned about the device spreading cancerous tissue in the abdomen and pelvis. The investigators examined incidents involving other devices as well.

Other than publicly announcing the violations, Shuren said the agency didn’t plan on taking further action against the hospitals. Instead, he said he wants to work with the hospital industry to improve monitoring of devices.

“We feel certain there is a better way to work with hospitals to get the real-world information we need, and we should work with the hospital community to find that right path,” Shuren wrote.

Lawmakers, health policy experts and the FDA have proposed various reforms aimed at strengthening device surveillance, including tracking insurance claims data to supplement the injury reports and automating so-called adverse event reports through electronic health records.

The issue may take on more urgency after federal authorities this month highlighted the infection risk from yet another commonly used device — heater cooler units used in open-heart surgeries. The FDA is holding a public meeting Dec. 5 on improving hospital-based surveillance of devices.

Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. You can follow Chad Terhune on Twitter: @chadterhune.

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Aging can take a toll on teeth, and for many older people paying for dental services is a serious concern because they can’t rely on their Medicare coverage.

Low-income seniors in particular are struggling. More than a third with incomes below 200 percent of the federal poverty level (about $23,000 annually) had untreated tooth decay between 2011 and 2014, according to an analysis of federal data by the American Dental Association.

“What ends up happening is that almost everybody, when they get to be 65, is sort of on their own and they have to pay for dental care out of pocket,” says Dr. Michael Helgeson, chief executive officer of Apple Tree Dental. Apple Tree is a Minneapolis-based nonprofit organization that operates eight clinics in Minnesota and California that target underserved seniors. It also has mobile units that provide on-site dental care at nursing homes and other facilities.

Traditional Medicare generally doesn’t cover dental care unless it’s related to services received in a hospital. Medicare Advantage managed care plans generally provide some dental care, but the coverage can vary, and often is minimal, dental care advocates say. The plans often are “a loss leader,” said Dr. Judith Jones, a professor of dentistry at Boston University. “It’s meant to attract people. It gets people in, but the coverage is really limited.”

In a way, older people are victims of dentistry’s success. Regular visits to the dentist, along with daily tooth brushing and water fluoridation, have all contributed to improvements in oral health. In the first half of the 20th century, by the time people reached their 30s or 40s many had already lost all their teeth, Helgeson said. Today, more than 60 percent of people in nursing homes still have at least one tooth.

But teeth need tending. Without regular dental care, tooth problems can cause pain and limit how much and what type of food people are able to eat. Similarly, gum disease can loosen teeth and allow bacteria to enter the body. A growing body of research has linked treating periodontal disease with lower medical costs for diabetes and heart disease, among other conditions.

People’s lives are affected in other ways by their oral health. “You use your mouth to eat and kiss and smile and interact socially,” said Jones. “It’s a source of great embarrassment and suffering for many adults without access to care.”

With limited income and no insurance, seniors may skip visiting the dentist regularly, even though many report that their mouths are dry and painful and they have difficulty biting and chewing, not to mention avoiding smiling and social interaction if they have missing or damaged teeth.

Medicaid, the state and federal insurer for lower income people, covers dental care for children in every state, but coverage for adults is much spottier. Most states cover emergency dental care for people covered by Medicaid, but eight states offer no adult dental benefits at all, according to a study by Oral Health America, an advocacy group.

Even trying to purchase private dental insurance, which typically covers a few thousand dollars’ worth of dental care, may not provide good value, said Marko Vujicic, vice president of the American Dental Association’s Health Policy Institute. “When you add up the premiums and copays, for the vast majority of adults it’s not worthwhile to have dental insurance,” he said.

Seniors with limited means have few options for help affording dental care. Federally qualified health centers may provide geriatric dental services on a sliding-fee scale based on income, and clinics like Apple Tree help a limited number of seniors who live in their service area. But they’re a Band-Aid, said Jones.

She and other advocates want Medicare to add a dental benefit to Medicare Part B. Their proposal would provide a basic bundle of diagnostic and preventive services through a premium increase, and seniors would only be responsible for copayments if they need pricey restorative work like crowns and bridges.

But a dental benefit has faced stiff competition from other priorities, including adding a prescription drug benefit in 2006 and preventive coverage under the health law in 2010.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Michelle Andrews is on Twitter:@mandrews110.

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Workers in California’s hospitals and doctors’ offices may be less likely to get hit, kicked, bitten or grabbed under workplace standards adopted by a state workplace safety board.

Regulators within the California Division of Occupational Safety and Health approved a rule last Thursday that would require hospitals and other employers of health professionals to develop violence prevention protocols and involve workers in the process. The standard now will be reviewed by the Office of Administrative Law, which proponents expect will approve the new rules. The earliest they could take effect would be January 2017.

“This is a landmark day for the entire country,” said Bonnie Castillo, a registered nurse who is director of health and safety for the California Nurses Association/National Nurses United, which represents 185,000 registered nurses across the U.S.

There are no federal rules specifically protecting workers from violence, but some states, including California, New York, Illinois and New Jersey require public employers to take preventive measures, according to the American Nurses Association.

The Cal/OSHA rules apply to private health care facilities in the state and are more robust than existing workplace protection rules, union officials say. Site-specific assessments will be done to identify violence risks, and the resulting plans to prevent injuries will address concerns identified by workers.

“California has now set the bar with the strongest workplace violence regulation in the nation,” wrote Castillo in a statement.

Two unions, the California Nurses Association and the Service Employees International Union, have been pushing for more comprehensive protections because of what they see as an alarming rate of health care workplace assaults, such as the 2010 strangling death of a nurse at a state-run psychiatric hospital in Napa.

“Unfortunately, [violence] is sort of a daily occurrence,” said Kathy Hughes, a registered nurse and spokesperson for the SEIU Nurse Alliance of California. She said her union formed a campaign and talked to hundreds of health care professionals, many of whom had accepted the idea that assaults happen at work. But “violence shouldn’t be part of the job,” said Hughes.

The California Nurses Association sponsored the 2014 bill that required the board to adopt the violence prevention rules this year.

National research shows that health care workers are at a “substantially higher” risk of workplace violence than the average worker. In 2013, for example, private-sector hospital workers were five times more likely to take time off from work because of an injury caused by violence than a typical private sector worker.

Workplace safety standards already exist in California, but the Cal/OSHA rules are specifically designed to prevent violence.

“It can’t be a cookie-cutter approach,” said Hughes, adding that emergency departments and pediatric care units pose different dangers to workers, so safety protocols can’t simply be a canned plan found on the Internet.

Both the California Nurses Association and SEIU say they hope the new California standards will become a national model.

Testimony at hearings leading up to the approval of the rules to prevent violence suggest that worker assaults vary in severity.

As a student nurse at a San Francisco hospital, Amy Erb remembered being kicked in the head by an agitated, confused patient with a traumatic brain injury.

Other health care workers told stories about patients throwing lamps, lifting caregivers up by their necks or stuffing dirt into the mouths of their colleagues.

Under the new rules, California employers wouldn’t be liable for every act of violence against a worker, such as a mass shooting, but they could be cited by Cal/OSHA for not following protocols, Hughes said. The standard applies to hospital-affiliated facilities and clinics, including home health care settings and drug treatment programs.

Hospitals and physicians were at the table when regulators hammered out the workplace rules. The California Hospital Association didn’t provide comment for this story, but it had been opposed to creating new standards when lawmakers looked at the issue in 2014. Hospitals also wanted “workplace violence” to be better defined.

The hospital trade association said several recent trends may contribute to violence at health care facilities. Cuts to mental health care services lead to more psychiatric patients in hospitals. The aging patient population may include more Alzheimer’s patients, some with aggressive tendencies. And hospitals caring for current or recently released prisoners face a higher risk of violence.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

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Researchers have launched an innovative medical experiment that’s designed to provide quick answers while meeting the needs of patients, rather than drug companies.

Traditional studies can cost hundreds of millions of dollars, and can take many years. But patients with amyotrophic lateral sclerosis, or Lou Gehrig’s disease don’t have the time to wait. This progressive muscle-wasting disease is usually fatal within a few years.

Scientists in an active online patient community identified a potential treatment and have started to gather data from the participants virtually rather than requiring many in-person doctor’s visits.

How is that possible?

In this case, doctors and patients alike got interested in an extraordinary ALS patient whose symptoms actually got better, which rarely occurs. He’d been taking a dietary supplement called lunasin, “and lo and behold six months later, [his] speech [was] back to normal, swallowing back to normal, doesn’t use his feeding tube, [and he was] significantly stronger as measured by his therapists,” said Richard Bedlack, a neurologist who runs the ALS clinic at Duke University.

Of course, it could just be a coincidence that the man who got better happened to be taking these supplements. To find out, Bedlack teamed up to run a study with Paul Wicks, a neuropsychologist and vice president for innovation at a web-based patient organization called PatientsLikeMe.

The study they came up with dispensed with many of the standard features of research that make it so expensive, time-consuming and often so hard to recruit patients:

• There’s no comparison group taking a placebo; instead the researchers match each patient with three to five people whose disease was on a similar course.
• The researchers could skip safety testing because the supplement is already on the market.
• Most important, they aren’t looking for subtle effects, like slower disease progression. That may be vital for a pharmaceutical company seeking approval for a new drug, but isn’t necessarily what patients want.

“I think what people are really looking for is to regain some function,” Wicks says. “So with limited time resources, limited patients available to take part in studies, perhaps we want to swing for the fences every now and then.”

Chances are the dietary supplement won’t help, but at least people will learn the outcome quickly and won’t waste their time and money if lunasin fails.

“If we find just one patient that has a reversal the size of the initial patient, that in itself is incredible, because these reversals are once in a generation,” Wicks said. He and Bedlack have identified just 24 patients, over many years, whose disease actually reversed course, at least temporarily.

The study recruited 50 volunteers at a record pace for ALS research, Bedlack said. That’s partly because it only requires three doctor visits. Those appointments are frequently challenging for people with this debilitating disease.

Most of the data are gathered virtually — patients post their own weekly assessments in a secure area of the PatientsLikeMe website.

Karen Lorne, a 58-year-old nurse practitioner from Chapel Hill, N.C., had cared for patients with ALS, so she knew about the inexorable nature of the disease. This spring, she noticed she could no longer hold medical instruments securely in her left hand, and her speech started to slur. She was diagnosed with ALS in July.

“I was pretty shocked that we know so little and that we have no idea how to fix it — because that’s what we do in medicine,” she says.

After considering her options, Lorne decided to sign up for the low-hassle trial with the supplement. She reports her own symptoms once a week, by typing them in on the PatientsLikeMe website. She can track her own progress, as well as that of the other patients in the study.

And it also serves as a support group. “You can type in, ‘I’m having a bad day,’ and somebody will give you a list of pointers to help you keep in the center, which is where you really want to live,” she said.

And the study doesn’t consume her precious days. She still can focus on her family and life’s daily pleasures.

“We try to live in the present and enjoy every moment as thoroughly as possible,” she says. “And actually, some of my friends who do not have the disease, seeing me having it has helped them shore up their lives and recognize what’s important.”

She is also helping advance knowledge about ALS, even if this trial doesn’t end up helping her.

Patients are a valuable resource, yet only 10 percent ever end up in a study.

“If this infrastructure works, in two years could you imagine 20 trials like this run in parallel?” Wicks asks. “You know, I have a question for the field: Why isn’t every patient in a study?”

One reason that’s not the case is that very ill patients are not likely to recover under any circumstances, so they don’t usually provide a lot of value in scientific studies, says Jeffrey Rothstein, a neurologist who runs ALS studies at the Johns Hopkins University School of Medicine. “That’s why almost no trial is open to all-comers,” as this one was, he says.

He agreed, though, that the study would show whether the supplement has a truly dramatic effect, which is the main purpose of the experiment. “The value of getting patients involved is fantastic,” he says.

If a virtual study like this identifies a promising lead, scientists could quickly pursue that through laboratory studies and more traditional studies with volunteers. Clearly that approach, of starting with animal studies and building on that knowledge, has been a huge disappointment so far with ALS.

And if the approach is successful, it could apply to other diseases as well.

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