Many medical studies involving children never end up being put to use because scientists frequently don’t publish the results of their work, according to an analysis published online Thursday.

The findings raise both scientific and ethical issues regarding research on this vulnerable population.

Previous studies have documented that about a third of all clinical trials conducted in the United States end up as largely wasted effort, because the scientists doing that work don’t take the effort to publish and share their results with the scientific community.

Pediatricians Florence Bourgeois and Natalie Pica at Harvard Medical School and Boston Children’s Hospital wondered whether researchers focusing on children took this obligation to publish more seriously. As they report in the journal Pediatrics, the experience with childhood research is just about as bad.

The report, reviewing clinical trials started in 2008-10, finds that 19 percent of the studies that recruited children didn’t run to completion. That was often because researchers weren’t able to recruit as many volunteers as they needed to run the experiments. And of the 455 trials that were completed, the results from 30 percent weren’t published.

“That means all the participants who are enrolled in these studies aren’t able to contribute in a meaningful way to our clinical information and knowledge,” Bourgeois said. One reason may be that scientists didn’t get the results they were hoping for. It’s less rewarding to publish results that report a failed trial, but Bourgeois says it’s just as important for science to do so.

“The harm is we end up with scientific literature that only shows all the things that do work,” she said. “It may falsely appear that certain interventions do work. So our literature may become biased and may not be representative of the true efficacy or safety of an intervention.”

One result of that is that other scientists may try to run the same failed experiment, and end up down the same blind alley as scientists who had tried it before. “That leads to a lot of inefficiency and waste,” she said.

Parents volunteer their children for these studies with an understanding that their efforts are contributing to the advancement of medical science.

Vincent del Gaizo, the parent of a child with a hard-to-treat form of juvenile arthritis, is passionate about that commitment. He’s taken a very active role in managing his son’s disease. When his son was about 9, he suffered from a flare-up so acute that he couldn’t bend his right elbow at all. Del Gaizo learned of a clinical trial of an experimental drug near his home, in Hackensack, N.J., and decided to take the risk that the drug would help.

Del Gaizo paid close attention to how the drug affected his son. But he also cared about how the work benefited the community more broadly. “It is hugely important to me as a patient-family,” for scientists to publish their results and explain them clearly, he said. It’s important “not only for the patient-families but also for the clinicians,” del Gaizo said. Doctors need to know what works — and what doesn’t work — to guide their treatment of children who aren’t participating in studies.

The results of the clinical trial his son participated in were eventually published: The drug worked better than an injection of plain salt water but hasn’t ended up on the market to treat this condition. But del Gaizo says he talks to many other families, as a patient advocate, and finds they frequently don’t learn the results of the experiments involving their children. “Just having information available to you … would make it so patient-families like us can sleep at night with the decisions we have to make on a daily basis.”

The shortcomings of pediatric research come as no surprise to Dr. Joseph Ross at the Yale School of Public Health. He arrived at similar results when he analyzed clinical trials that include adults. Scientists have many explanations for why they don’t publish their results. “Maybe the results don’t show what the investigator wants and they move on,” Ross said. “But more often people are busy and people don’t focus enough time and attention on getting those results out.”

Ross considers this an ethical lapse. “When you do a clinical study and you’re asking patients to participate and subject themselves to a risk, in order to inform science and generate knowledge, you have an ethical obligation to disseminate those results to the wider scientific community,” he said.

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Donna Nickerson spent her last working years as the activity and social services director at a Turlock, Calif., nursing home.

But when she developed Alzheimer’s disease and needed that kind of care herself, she and her husband couldn’t afford it: A bed at a nearby home cost several thousand dollars a month.

“I’m not a wealthy man,” said Nickerson’s husband Mel, a retired California State University-Stanislaus professor. “There’s no way I could pay for that.”

About half of all people turning 65 today will need daily help as they age, either at home or in nursing homes. Such long-term care will cost an average of $91,100 for men and double that for women, because they live longer.

In California and across the U.S., many residents can’t afford that, so they turn to Medicaid, the nation’s public health insurance program for low-income people. As a result, Medicaid has become the safety net for millions of people who find themselves unable to pay for nursing home beds or in-home caregivers. This includes middle-class Americans, who often must spend down or transfer their assets to qualify for Medicaid coverage.

Medicaid, known as Medi-Cal in California, was never intended to cover long-term care for everyone. Now it pays for nearly 40 percent of the nation’s long-term care expenses, and the share is growing. As baby boomers age, federal Medicaid spending on long-term care is expected to rise significantly — by nearly 50 percent by 2026.

The pressure will only intensify as people age, so both state and federal officials are scrambling to control spending.

State Medicaid directors are closely watching as long-term care spending takes up larger shares of their budgets and squeezes out other programs, said Matt Salo, executive director of the National Association of Medicaid Directors.

“There isn’t a day that goes by they are not thinking about long-term care,” Salo said. “It makes up a huge portion of the entire budget and it’s growing … It is absolutely not sustainable.”

In the meantime, people who need long-term care are depleting their savings or transferring their assets to others so they can qualify for Medicaid. Long-term care insurance rates are rising, and many seniors find they can no longer afford policies they purchased long ago.

In California, seniors typically can qualify for Medi-Cal if their yearly incomes are under $16,395. To get long-term care through Medi-Cal, they also must show a need for assistance with certain “activities of daily living,” such as dressing or bathing. Incomes can be higher if seniors can demonstrate medical need and have spent much of their savings, with some exemptions for homes and other assets.

About 21 percent of the state’s over-65 population is enrolled in Medi-Cal, according to the state Department of Health Care Services. Medi-Cal paid for long-term care for an estimated 716,000 people who are aged, blind or disabled in 2013, the most recent data available. In 2014, nearly a quarter of Medi-Cal’s dollars went to pay for long-term care — about $14.7 billion, according to the California Health Care Foundation.

When Nickerson, 85, realized a nursing home bed was too expensive, he sought guidance from an attorney, who helped him take his wife’s name off their home and take their assets out of her name. Then Nickerson applied for her to receive Medi-Cal, and he helped her move into a Turlock nursing home near the one where she once worked.

Now, Nickerson said he pays about $1,700 a month from her Social Security, and Medi-Cal picks up the rest of the tab, he said. Nickerson said his wife, now 84, is getting the care she needs, and he can’t imagine having her anywhere else.

“It is absolutely the best place for her,” he said. “She needs help 24 hours a day.”

If more middle-class Californians like the Nickersons seek help from Medi-Cal, however, the program could be overwhelmed and unable to help the people who need it most, said Joanne Handy, CEO of LeadingAge California, an advocacy group that represents nonprofit nursing homes.

“The pressure on the state Medicaid budget, not only here in California but across the country, is just going up, up, up,” she said. “If you put on top of that more and more what we call middle-income Californians spending down and then going onto Medi-Cal, it is just a crazy policy.”

Salo, of the National Association of Medicaid Directors, said people shouldn’t have to impoverish themselves to get financial help paying for long-term care, but states cannot afford to cover the care for everyone who needs it and are trying to come up with ways to control spending.

More than a dozen states, including California, are contracting with managed care companies to provide both medical care and long-term care services to their Medicaid beneficiaries. These services can range from nursing home care to at-home assistance with bathing, chores and transportation to medical appointments.

States are hoping that contracting with managed care plans will help save money, improve care and better coordinate services for seniors. But some health advocates say that managed care organizations — traditionally geared towards providing only medical care — aren’t necessarily prepared to offer other forms of care such as bathing or cooking and could end up restricting services or providers to save money.

California recoups some of what it spends on nursing homes and other services by collecting what it is owed from people’s estates.

“We can’t do both — serve as a payer of last resort and let people keep their assets,” said Jennifer Kent, head of the state’s Department of Health Care Services.

The state has been holding informational hearings in Sacramento this year to brainstorm about other ways to grapple with long-term care costs in California. “It all falls to Medicaid, and that is problematic,” said state Sen. Carol Liu (D-La Cañada Flintridge).

Several organizations, including the SCAN Foundation, the Urban Institute and the Bipartisan Policy Center, also have been working together to come up with possible solutions. These could include new insurance options that would take some burden off Medicaid.

About 1.4 million people are in nursing homes nationwide, and about 62 percent of those beds are paid for by Medicaid.

The percentage is even higher at the Los Angeles Jewish Home in the San Fernando Valley, where about 85 percent of the beds are paid for with Medi-Cal dollars. Some of the residents “exhaust every penny they have” to be able to afford the care, said CEO Molly Forrest.

Sitting in a courtyard at the nursing home, Josephine Rudolph, 99, said she gets help with dressing and bathing. Rudolph, who still loves to read, said Medi-Cal has paid for her to live at the home since 2005. Otherwise, she said, she couldn’t afford it.

Herb and Judie Schwartz, both in their 80s, also rely on Medi-Cal to live at the Jewish Home. Family photographs cover their walls. An oxygen tank and a walker sits in a corner. Just above the bed is an emergency tab that notifies the nurse’s station if the couple needs help.

They moved to the Jewish Home about four years ago after Herb Schwartz, a former computer program analyst, had a fall and it was no longer safe for the couple to live at home.

“I don’t know where we would have been without Medi-Cal,” said Judie Schwartz, a retired teacher. “We would have probably ended up with one of our kids. I love them but I can’t imagine having to live with them.”

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

Blue Shield of California Foundation helps fund KHN coverage in California, and The SCAN Foundation supports KHN’s coverage of aging and long-term care issues.

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Copycat versions of biotech drugs work just as well as the originals and cost a lot less, according to an analysis of studies of the medicines.

The analysis by researchers at Johns Hopkins Bloomberg School of Public Health finds that so-called biosimilars — medications that are meant to mimic, and compete with, complex and expensive biotech drugs — perform as well as the brand-name versions.

The researchers looked at data from 19 studies of biosimilar drugs that treat rheumatoid arthritis, inflammatory bowel disease and psoriasis, and found that they were comparable to the originals and would cost less. The findings will appear in the Aug. 2 issue of Annals of Internal Medicine.

“Hopefully, this will encourage the brisk adoption of these products,” said Caleb Alexander, the study’s lead researcher, in a release. “There is no question that greater competition in this market will benefit patients, prescribers and society in the long run.”

Biologics include proteins and antibodies that are typically made by living organisms. They’re more difficult to produce than medications made from mixtures of chemicals. It’s also next to impossible to make an exact copy of a biological product, which is why the drugs are often referred to as biosimilars.

There was a provision in the Affordable Care Act meant to encourage development and approval of biosimilars, but progress has been slow. The Food and Drug Administration has approved only two such drugs since the law passed in 2010.

Zarxio, the first biosimilar drug approved in the U.S., is expected to save about $6 billion a year because it costs less than Amgen’s Neupogen, the brand-name product. The medications help boost the immune systems of chemotherapy patients by increasing production of white blood cells.

In April, the FDA approved a second drug that is similar to Johnson & Johnson’s Remicade to treat colitis and Crohn’s disease. That drug, called Inflectra, is one member of the class of biosimilars that the researchers at Johns Hopkins examined. There are several other biosimilar drugs in this class available in Canada, Asia and Europe.

The Johns Hopkins study is important because drugmakers have raised questions about biosimilars since they aren’t identical to the drug they’re supposed to mimic. Many are fighting approval of the drugs, and some argue that they should not be substituted for a brand-name drug without a patient’s consent.

But IMS Health Informatics says there are 50 biosimilars under development. All told, they could save U.S. and European health systems as much at $110 billion over the next five years, the company estimates.

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Opioids are often considered mandatory for treatment of chronic pain, but many patients would prefer an alternative. Doctors say those alternatives may also work better in some cases.

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Health care claims for people with opioid dependence diagnoses rose more than 3,000 percent between 2007 and 2014, according to an analysis of insurance records.

The findings illustrate that the opioid problem is “in the general mainstream,” says Robin Gelburd, president of Fair Health, a nonprofit that analyzes health care costs and conducted the study.

The researchers used de-identified claims data from insurers representing 150 million patients who either have insurance through work or buy coverage on their own. They looked for diagnosis codes related to opioid dependency and abuse, adverse effects of heroin use or problems caused by the misuse or abuse of other types of opiates, including prescription drugs.

They found that health care costs related to opioid dependence increased most sharply since 2011, a period marked by increased attention to the problem and a growing pressure on physicians to reduce the number of opioid prescriptions.

Younger patients ages 19 to 35 were most likely to be diagnosed as opioid dependent. Dependence is defined by symptoms such as increased tolerance, withdrawal or unsuccessful attempts to quit.

Those younger patients were also more likely than older ones to overdose on heroin. The reverse was true for overdoses related to other types of opioids, which were more common in people in their mid-40s to mid-50s.

The number of medical services such as office visits and lab tests for patients with a dependency diagnosis rose from about 217,000 in 2007 to about 7 million in 2014.

“A 3,000 percent increase is enormous,” says Andrew Kolodny, senior scientist at the Heller School for Social Policy and Management at Brandeis University. He did not work on the study.

Such a sharp rise over a short period of time is a classic definition of an epidemic, Kolodny says, and one that points out that much more effort is needed to prevent future cases and treat people who already have addiction problems.

Still, basing an analysis solely on insurance claims data, while common, may not paint a complete picture. The accuracy of billing codes may be poor, for example. In this case, increased attention to the opioid problem may have also resulted in an increased use of related codes. Some research studies also pair claims data with medical record information, which includes doctors’ notes. This study did not.

Other findings include:

• Across all age groups, men were more likely than women to be diagnosed with dependency. That gap narrowed among patients in their 40s and 50s, with women representing 45 percent of those diagnosed.
• Women were more likely than men to overdose.
• The ratio of opioid dependence to other substance abuse problems varied by state. Rhode Island had the highest ratio of opioid problems, while Maine and Montana had the lowest.

Kolodny is among those who say that the increase in addiction is directly tied to the run-up in opioids prescribed by doctors in the past decade. Some of those who develop dependency problems are the patients who get the prescriptions. But many also obtain the drugs illicitly, from a friend, family member or dealer.

Younger people, says Kolodny, may start with prescription medications but then turn to street drugs like heroin because they have “a harder time maintaining their opioid supply by visiting doctors.”

Older patients, he says, are less likely to turn to street drugs because they have an easier time getting refills from their doctors.

Data from IMS Health, which tracks prescription drug sales, shows the number of prescriptions for opioid-based drugs have ticked down, falling 11.8 percent from 2012 to 2015. That decline, however, followed a huge increase: The number of opioid prescriptions more than doubled between 2000 and 2012, when more than 282 million prescriptions were written.

In 2014, federal health officials reclassified certain drugs containing the opioid hydrocodone, including Vicodin, making refills harder to get.

In addition, many states have begun prescription monitoring programs, which aim to identify and track people who are “doctor shopping” in order to get multiple prescriptions for narcotics. Pharmacists or physicians can check those databases to see if a patient already has a prescription for narcotics before dispensing another.

In 2001, only 16 states had laws allowing monitoring programs. By 2012, 41 states were operating one, according to a report by the Pew Charitable Trusts.

“There’s some evidence that those are helpful in reducing prescribing,” says Allan Coukell, senior director for health programs at Pew. But he added that treatment options are still lacking. “The reality is, even in states that have done that, demand is far in excess of what they can provide.”

In mid-July, President Obama signed the Comprehensive Addition and Recovery Act of 2016, which aims to make prevention and treatment more widely available.

Supporters say the legislation will help, but criticized lawmakers for not including more funding.

The data from Fair Health, Coukell says, show the scope of the problem.

“What this tells you is this is not limited to a problem of the poor and unemployed,” he said. “This is a problem that is cutting right across society.”

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Mario Perez lives in Miami, but he was in Orlando for a housewarming party Saturday, June 11. After the party, the 34-year-old went to Pulse for Latin night.

At 2 a.m., he heard gunshots. Loud. He knew it was real.

“And the minute he started shooting, I got hit from the side, I got grazed by a bullet,” Perez says. “My first instinct was to fall to the floor, that’s what you’re taught to do.”

He heard gunshot after gunshot after gunshot. It was too many to count. But then there was a brief break in the firing, and Perez ran out the back of the club. He hid inside the kitchen of a nearby 7-Eleven until police and paramedics showed up. He was taken to Orlando Regional Medical Center, and was at the emergency room from 3 a.m. until 8 a.m.

The gunshot wound on his side is purple and swollen, and he has nerve damage from the bullet fragment. He cut his elbow from glass on the floor of the nightclub and received six stitches. Perez doesn’t know how much bills coming from specialists, X-rays or other tests may cost him. But his bill from Orlando Regional Medical Center’s emergency department: $20,000.

“$20,000,” Perez said. “That’s the quote, that’s what they told me.”

Perez has no health insurance. He’s working for a temp agency right now and doesn’t have the money to be seen by a doctor for follow-up care in Miami.

So just how much will the Pulse nightclub shooting cost all of the victims? It’s a difficult, if not impossible question to answer right now. At last check, there were 56 people brought to the hospital, including three patients who spent two weeks in the intensive care unit, and one patient is still in the hospital in critical condition.

Embry Howell is a senior fellow at the Urban Institute, a think tank in Washington, D.C. She studied the average cost of a gunshot victim in 2010. Using that benchmark, she estimates the hospital costs from the Pulse shooting will be about $1 million.

“And I would imagine that would be an underestimate,” Howell said.

Howell said many of the victims may be in the same boat as Mario Perez – uninsured.

“They’re young, primarily Latino and living in Florida,” she says, a state that has not expanded Medicaid to its population.

“My guess would be you have a high rate of uninsured,” she concludes.

Ted Miller is a researcher with the Pacific Institute for Research and Evaluation. He has been studying the cost of firearm injuries for more than two decades. He used the 2011 shooting of former Congresswoman Gabby Giffords and 18 others in Arizona to make what he calls a conservative estimate.

That estimate: $4 to $7 million dollars in medical costs and mental health costs for victims and survivors of people who died. That’s the lifetime medical costs for the survivors, the costs of surgery, the cost of rehab. But it doesn’t count the long-term costs for those who are severely injured.

“They said some time ago that there were six people in ICU who would have long time, serious consequences,” Miller said. “And my guess is most of those folks will have traumatic brain injuries that will have continuing lifetime care.”

Miller also makes a broader estimate beyond just the medical costs. That includes the cost of the police response, the cost to employers – and the dollar value of those 49 lost lives.

“I estimate that the total cost of the Orlando shooting is around $385 to $390 million,” Miller says. “To put that in context, on that same day, the cost of other gunshot wounds in the U.S. was probably about $600 million. So about one and a half times the cost of the Orlando incident. That tells you that there are a lot of people killed and injured by firearms every day in this country,” he says. And, he explains, “Suicide deaths account for the largest share of gun violence costs.”

What’s not included in Miller’s $385 million estimate is the cost of mental health counseling for people who were in the club but not physically shot – and friends and family of those there. And then there’s the cost of fear: People being afraid to go out to a dance club, or maybe skipping a visit to the theme parks.

Orlando Regional received 44 of the shooting victims. A hospital spokeswoman says some patients have insurance coverage, some don’t. The hospital is going to look for payment sources from the community or the state, such as victim funds that are raising money across the country. But she says the hospital expects unreimbursed costs of more than $5 million.

Pulse shooting victim Mario Perez is calculating his personal costs. He’s worried he’s going to lose his job. He’s anxious knowing millions of dollars have been raised to help victims, but his bills are arriving now. He started his own GoFundMe campaign but it’s only raised about $600.

“As long as it gets covered, I’m going to be fine,” Perez said. “If they don’t cover it, I’m stuck in a hole. I don’t know what I’m going to be able to do if they don’t assist me.”

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

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There are apps that can help people with diabetes keep track of their blood sugar and apps that can attach to a blood pressure cuff and store blood pressure information. I use an app called ZocDoc to schedule and manage doctor’s appointments. Every time I see a therapist or a primary care doctor or dentist, the data get stored in my personal account.

But we leave behind other trails of health data, too, from apps and activities that are sometimes only tangentially health related. When I walk down the street, an app on my phone logs steps as it bounces against my thigh. When I swipe a loyalty card at the pharmacy, the over-the-counter medications that I buy become bits of data attached to my name. Medical information can be gleaned from all this and more, says Nathan Cortez, a professor of law at the Southern Methodist University Dedman School of Law.

Those data aren’t always protected. A recent report from the Department of Health and Human Services showed that the vast majority of mobile health apps on the marketplace aren’t covered by the Health Information Portability and Accountability Act. “HIPAA is pretty narrow as far as these things go. It applies only to traditional entities [like hospitals, doctors and health insurance providers], and it’s not surprising. HIPAA was written by Congress in 1996 before we had health apps,” Cortez says.

Apps or devices used in conjunction with a doctor’s office or a hospital can’t share or sell your information. But there’s no definitive federal law governing what happens to the data that an app developer, tech company or private individual collects. Cortez and I spoke about what that means and what people can do with individuals’ data. This interview has been shortened for length and clarity.

So if you share your data with a physician or a hospital, then it’s covered under HIPAA. If you share it with someone like Apple, then it’s not?

Yeah, that’s right. If your physician tells you to use an app and tells you to share that data with her, then for most purposes that data-sharing would be covered by HIPAA. And physicians have professional obligations to maintain confidentiality. So if you’re sitting and show them data on your app but don’t send it to their computer, they would have professional obligations under state law to keep that information confidential.

Now let’s say there’s an app made by a third-party developer. It’s not covered under HIPAA. Then you take that data and send it to your physician, who puts it into your medical record. The data in your medical record would be covered by HIPAA. The data that the third-party app developer has would not.

It’s literally that identical bits of data in different computers have different protections. The data the app developer has are not protected, while the very same bits of information in the doctor’s computer are?

Yup. But the Federal Trade Commission has taken a few enforcement actions where mobile app developers made privacy promises but haven’t kept those promises. If you’re an app company you might not be governed by HIPAA, but you have to be careful to do what you’re saying you’re doing with that information. If you’re engaging in any unfair or deceptive practices with regards to user data, the FTC could swoop in and take action.

What are the kinds of data that mobile app developers and tech companies have that people might be concerned about?

There’s quite a few thoughtful researchers in this space who basically say that any data can be health data. Your online search terms, location, all of these are combined into a kind of profile of each of us. There’s the famous case of Target sending mailers to a house because they accurately predicted the high-school-age daughter was pregnant. That was all predictive analytics based on shopping patterns and the like.

If you start shopping for certain goods and analytics online, it’s not that hard for companies to figure out what medical conditions you might be dealing with.

Amazon has these shopping lists or wish lists that are public. I realized that somebody with my email address could probably learn a lot about me just based on what I have on that shopping list. Or if you’re sending more texts than usual that could that mean you aren’t feeling so great that day — that kind of thing?

Yeah, or what words are you using? Do you check into certain restaurants? Your gym patterns? Your travel patterns? There’s a huge industry that’s emerging around this data-gathering where you can predict a lot and ascertain a lot about people from data where on its face doesn’t seem like health data. You can learn a lot about someone’s health, even really intensely personal information, by analyzing this information.

Do you think an employer purchasing those data could use the information to figure out whether you have a certain medical condition that might give the company second thoughts about hiring you?

The discrimination question is really interesting and really scary, potentially. We have laws that inhibit medical insurance companies from discriminating based on your past medical history. But you can take a lot of data points and make inferences that get you to the same spot.

Legal scholars are wondering — is this a backdoor way to discriminate against insured populations based on their medical history? There’s a company called Oscar based out of New York that has [become] really popular. They market themselves as a next-generation health insurance company where we’re smart and we’re data driven, we use modern technologies, we’re not an old stodgy health insurance company. They give you an incentive to use [wearables] and use apps [to track exercise and give an opportunity to earn rewards].

But if you’re using a Fitbit and you have a desk job and you sit around, will you be charged premiums for that or denied coverage in the future? Can we measure people’s health risks in advance based on data points that individually seem innocuous but put together paint pretty detailed pictures?

Of course, some people would be happy to share those data, right? We do it all the time to get better traffic information. We could potentially be getting much better health care and health apps by freely sharing our information.

Of course! Not all consumers want their data to be locked up and in silos and kept confidential. I went to a conference at Stanford last month, and a bunch of patients there wanted their data to be open and free. One good thing about health going online is you have patient communities with chronic or difficult diseases where patients can find and help each other.

But there are certain egregious practices [from data brokers] that are predatory and abusive. It’s very tricky to come up with a legal system that will work for everybody.

So, say I’m a consumer who wants to use these apps. How do I check and make sure that my data are protected to my satisfaction?

It depends on your level of concern. If it’s very sensitive and you’re very concerned, I wouldn’t use an app unless it’s from a traditional provider. If you’re going to a hospital and they have an app that allows you to access records, which should be protected by definition.

If you’re downloading … fitness tracking, health, lifestyle apps or even apps for chronic disease that aren’t being offered by traditional providers, there’s a good chance it’s not covered by HIPAA. If you are concerned, read the privacy policy. Unfortunately, they’re written by lawyers and aren’t always clear. That’s a lot of work for a consumer. It’s a very buyer-beware market.

This story is part of the bonus material for NPR’s podcast and show Invisibilia, which this week tells the tale of a woman who used a blood-glucose monitoring app to track the health of her twin sister from afar.

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Backers of ColoradoCare — the state ballot initiative that would establish universal health care in Colorado — think they have the perfect job for former presidential candidate Sen. Bernie Sanders.

With the Democratic National Convention in Philadelphia behind him, Sanders “comes to Colorado and campaigns for single-payer — and we win,” says T.R. Reid, one of the architects of ColoradoCare. The initiative aims to provide every resident of Colorado with affordable health insurance. Sanders made universal coverage one of the cornerstones of his presidential bid.

The proposal comes with a $38 billion annual price tag — to be paid by a tax on workers and businesses. The program would eliminate the need for insurance premiums and deductibles, and proponents claim it would save the state and individuals a lot of money.

Reid says the backers of ColoradoCare have pitched Sanders’ team, hoping he will campaign on behalf of the measure that will come before voters in November.

Sanders has already championed the issue in the state — he pushed for a single-payer system during his Democratic primary campaign in Colorado. It was one of his key health care positions, and it got thousands of his supporters cheering at an event in Denver in February.

“I believe that health care is a right, not privilege,” Sanders told cheering crowds.

He also beat that drum during a TV appearance with MSNBC’s Rachel Maddow in May. Sanders pointed out that Canada started what would eventually become its nationwide system of universal health care by persuading lawmakers in each province — one province at a time.

“So if you’re asking me, do I think if a major state — whether it’s Colorado or California or whatever — goes forward and it works well, [will] other states say ‘Hey, you know, I got a brother over there in Colorado and he’s getting health care, great health care and it’s less expensive than the current system,’ ” Sanders said. “Yeah, I think that is one possibility.”

The whole concept of ColoradoCare — or Amendment 69, as it will appear on the ballot — appeals to Andrew Kleiman, a 35-year-old Sanders supporter from Grand Junction.

“I think we’re just at such a tipping point,” Kleiman says. “The momentum of Bernie’s campaign carried over into something like this would be a perfect fit and pretty necessary.”

Kleiman says if Sanders actively backed the proposal in Colorado it would help motivate millennials like him to vote.

Reid agrees. “The last poll showed 60 percent of millennials support ColoradoCare,” he says. “Those are Bernie people and if he can turn them out to vote, we win.”

But a coalition of opponents, including conservatives, insurance firms and business groups, has come out against the initiative, which is expected to draw big money from both sides.

“I don’t think the economics of it work out,” says Nina Anderson, a small business owner in Grand Junction. She says the proposed program would be too expensive for small businesses and employees.

Colorado has been on the cutting edge of some other big policy changes, like legalizing recreational pot. Anderson says she’s not ready for the state to take the lead on a huge government-run health care system, and does not think Sanders should jump in.

“That is the scary part, I think, about being in Colorado and being on the forefront of anything that is attempting to move to socialized care,” Anderson says. “You do get everybody with outside interests coming in and playing in your sandbox.”

Cody Belzley, who served as senior health policy analyst to former Democratic Gov. Bill Ritter, opposes the proposal and says she’s not sure what difference Sanders would make — if he did come.

“It’s such a strange political year,” Belzley says. “I think it’s really hard to know what’s going to impact Colorado voters or the outcome of Amendment 69. I think this is a decision to be made by Colorado voters, based on what’s going to be best for them and their families.”

Colorado voters haven’t passed a general tax increase in years. Obamacare cut the state’s uninsured rate in half, but many residents still struggle with high premiums and deductibles.

Belzley, who works for a group opposing the amendment, Coloradans for Coloradans, urges voters to look at the details. “I think when folks look at that,” she says, “they come to understand this is just too risky a proposal.”

Sanders’ presence in Colorado could motivate voters on both sides, says Seth Masket, a political science professor at the University of Denver.

“That’s kind of the mixed message of initiatives,” Masket says. “They can really draw out both sides, depending on how passionate people are on the subject. The key for supporters of this initiative would be to translate passion for Sanders into passion for this initiative. Sanders is probably the best equipped to actually make that case.”

A representative from the Sanders campaign, Michael Briggs, says the topic is something that “interests Bernie very much. We don’t have a trip scheduled yet, but he has been keeping a close eye on this.”

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

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For some people, the attack on police officers by a gunman in Dallas this summer brought to mind another attack by a sniper in Austin 50 years ago – on Aug. 1, 1966. That’s when student Charles Whitman stuck his rifle over the edge of the clock tower at the University of Texas at Austin and started shooting. Ultimately, he killed 16 people — and wounded more than 30 others.

For decades, people have struggled to figure out why. There have been theories about abuse, a brain tumor and, of course, mental illness.

Six months before Charles Whitman took aim from that tower he visited a school psychiatrist, and admitted while there that he had a violent fantasy of going to the top of the tower with a deer rifle and shooting people.

Gary Lavergne, who wrote A Sniper in the Tower, says the school psychiatrist, Dr. Maurice D. Heatly, claimed he’d had many students who recounted violent fantasies during therapy sessions.

“Today we take it a whole lot more seriously because of our history,” Lavergne says. “But back then, that kind of thing didn’t happen.”

Soon after the 1966 shooting, Heatly spoke in a news conference.

“It’s a common experience for students who come to the mental hygiene clinic to refer to the tower as the site of some desperate action,” Heatly told reporters. “They say ‘I feel like jumping off of the old tower.’ [Charles Whitman had] no psychosis symptoms at all!”

Whitman never went back to the clinic, but did return to his violent fantasy. Lavergne says the 25-year-old former Marine and Eagle Scout was incredibly methodical as he went about killing his mother the night before the tower shootings, placing her body in bed as if she were sleeping. Then he went back home and stabbed his wife.

“By 3 o’clock in the morning, his wife and his mother are both murdered,” says Lavergne. “After that, until he goes to the campus, he spent the rest of his time polishing, getting weapons ready, buying more ammunition. All for the specific goal of going to the top of the UT tower and shooting people.”

Nearly two hours later, 16 people were dead all-told, and 32 more were wounded. Police finally killed Whitman.

Speaking to the media, John Connally, who was then governor of Texas, could barely find words.

“Of course I am concerned, disturbed, and yet somewhat at a loss to know how you prevent a maniacal act of a man who obviously goes berserk,” Connally said.

Fifty years later, when news about shootings in Dallas, in Orlando or San Bernardino hits, our reactions are much the same. We use different words, but we often assume the shooter is mentally ill, and that crimes like this could be avoided if those with serious mental illness didn’t have guns.

Which raises two questions: First, was Charles Whitman mentally ill? And second, could policies focusing on mental health prevent mass shootings?

As to the first question, Lavergne doesn’t think Whitman had serious mental illness. Whitman, he says, did have mental health challenges that are common – depression and anxiety. But more than anything, he was manipulative.

“He was always who he was expected to be,” Lavergne says. “In front of his father-in-law he at times appeared to be a dutiful husband, when — in fact — he assaulted his wife, just like his daddy assaulted his mother. And he gave people the impression he was an honor student, when — in fact — when he died he had a 1.9 grade point average.”

Charles Whitman did seem to think something was wrong with him. This is an excerpt from a note he left on his wife’s body:

“I don’t really understand myself these days,” he wrote. “I’m supposed to be an average, reasonable and intelligent young man. However, lately, I can’t recall when it started, I have been a victim of many unusual and irrational thoughts. These thoughts constantly recur.”

Whitman didn’t mention he’d also been abusing amphetamines. The potential impact of those chemicals fizzled out of the public conversation as soon as a pathologist made a striking discovery in his autopsy: a brain tumor.

One doctor said the “grayish yellow mass” wasn’t a factor in explaining what Whitman had done. But a medical panel later diagnosed the mass as a glioblastoma and said it could have contributed to Whitman’s inability to control his emotions and his actions. Dr. Elizabeth Burton, a Dallas pathologist, agrees it’s possible.

“You can have headaches, you can have seizures, and you can have changes in cognition, and you can actually have personality changes,” she says.

But plenty of people have tumors and are not violent. And plenty of people have depression, anxiety and paranoia and aren’t violent.

Dr. Paul Appelbaum, a psychiatrist and director of the division of law, ethics, and psychiatry at Columbia University, points out that only a tiny percent of violence – about 4 percent in the U.S. — is attributable to mental illness.

“We know that people with serious mental disorders are at somewhat elevated risk of committing violence,” Appelbaum says. “Even so, the vast majority of them never commit a violent act. And we know that people with serious mental illnesses are much more likely to end up as victims of violence rather than as perpetrators.”

But Democrats and Republicans both tout mental health care legislation as a way of preventing mass shootings.

After a shooter killed 20 children in Newtown, President Obama called for a gun crackdown. That didn’t happen. But, Obama’s 2017 budget does include $500 million for mental health services.

Appelbaum says this is a misguided approach.

“We need more funding for treatment of people with mental illness in this country,” Appelbaum says. “But to argue for that funding on false grounds — namely to try and persuade the public that it will protect them [to] have more mental health clinics — in the long run can only backfire.”

Applebaum believes there are alternatives. He says at least temporarily limiting access to guns for some people make sense. In general, people who have been convicted of violent misdemeanors, or who are a under temporary restraining order, or who have multiple DUI convictions over a 5-year period are more likely to commit acts of violence than people with mental illness are.

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

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For people with diabetes who take insulin, the risk of losing consciousness from low blood sugar is a constant fear. Devices called continuous glucose monitors (CGMs) can alert wearers to dropping levels, but not everyone has access to them. And even among those who do, some prefer a furrier and friendlier alert option: A service dog with special training to alert owners when their blood sugar reaches dangerously low levels.

These dogs are trained in a variety of ways, and although they receive certification, there is no universally accepted test to ensure their competence. Fully-trained dogs can cost in the $20,000 range and typically aren’t covered by insurance, although some nonprofit organizations can help offset the cost.

But as the popularity of diabetes alert dogs to detect hypoglycemia has increased dramatically, their effectiveness is largely unknown, according to Evan Los, a pediatric endocrinologist at Oregon Health & Science University who has studied their use. “Though dog trainers and dog users are generally enthusiastic,” he notes.

Moreover, it’s not clear exactly what the dogs may be detecting. Are they actually “smelling” low blood sugar, or are they reacting to typical hypoglycemia symptoms in their owner, such as sweating or shaking?

Two new studies add scent to the trail. One, published in the journal Diabetes Care, suggests that the dogs may be smelling a particular substance in the person’s breath that rises as blood sugar falls.

But a second study, presented by Los at the recent meeting of the American Diabetes Association in New Orleans, found that although the dogs do appear to detect low blood sugar, they also often alerted owners when they didn’t have low blood sugar, and were usually slower than a CGM to alert to actual low blood sugar.

Sniff Test?

In the Diabetes Care study, Sankalpa Neupane and colleagues at the University of Cambridge measured the amounts of volatile organic compounds in exhaled breath in eight adult women with type 1 diabetes. When the patients were given insulin infusions to induce hypoglycemia, levels of one of the most common VOCs in human breath, called isoprene, rose “strikingly,” the researchers said.

No relationship was seen between hypoglycemia and any other VOC, including acetone, ethanol or propane.

It’s not clear exactly why this happens, but one theory is that isoprene may be a byproduct of cholesterol production, which may be influenced by blood sugar levels. Or the fast heart rate and blood flow that accompany hypoglycemia may simply result in the delivery of more isoprene to the lungs.

While diabetes alert dogs were the impetus for this study, the researchers didn’t test dogs to see if they react to the chemical. It’s certainly possible that isoprene isn’t the whole story, says Dr. Mark Evans, the study’s lead investigator and a University of Cambridge lecturer. “All we have done is find one signal,” he told NPR. “I suspect that dogs respond to a combination of cues including [VOCs], but also subtle behavioral cues.”

Asked to comment, Los said, “Their study didn’t test whether dogs have any ability to detect or alert to different concentrations of isoprene, so … whether this is a compound used by the dogs is unknown.”

Doggie Over-Do?

Los became interested in diabetes alert dogs when some of his patients asked his advice about getting them. “I didn’t know anything about them. It turns out almost no one did, but patients were using them anyway.”

He and his colleagues studied eight patients with type 1 diabetes aged 4 to 48 years along with their own trained dogs for one week each, comparing the dogs’ accuracy with those of both fingerstick and CGM blood sugar monitoring.

The dogs did alert the owners over three times more often during low blood-sugar episodes than when blood sugar was normal. But just 12 percent of the 16 to 20 average weekly alerts occurred when the patient actually had hypoglycemia.

And when both the dog and the CGM alerted, the CGM alerted first in 73 percent of low blood sugar events, an average of 22 minutes sooner than did the dog.

Los speculates that the dogs might also be reacting to high blood sugars or rapid changes in blood sugar, situations that CGMs also detect and provide feedback for. “Given that a CGM differentiates its alerts clearly, the dog is operating at a disadvantage.”

A Dog’s World

Despite the many false alerts, surveyed dog users were very satisfied (8.9 on a 10-point scale) and fairly confident (7.9/10) in their dog’s ability to detect hypoglycemia.

Evans told NPR those results don’t surprise him. “I suspect that dog owners are more tolerant of false negatives [from their dog] than a device falsely alarming, which really irritates.”

For patients without CGMs who have a trained dog and find it helpful, Los says that “I would never tell them to get rid of it, because it’s alerting them to more hypoglycemia symptoms than they would otherwise know about.”

More research is needed, he said, to determine whether particular training approaches, breeds, or other factors might make dogs better hypoglycemia-detecting best friends.

“Although it appears CGM outperformed trained dogs in this study, it is intriguing that dogs were able to detect some hypoglycemia,” Los said. “Perhaps understanding what factors impact dog reliability could help optimize dog performance.”

Then there’s the warm fuzzy effect. Other possible benefits not measured in the study could include having a positive partner in the daily management of a chronic disease, Los added, especially one “in which the daily tasks are not very rewarding.”

This story is part of the bonus material for NPR’s podcast and show Invisibilia, which this week tells the tale of a woman who uses a blood-glucose monitoring app to track the health of her twin sister from afar.

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