The first thing out of John Iovine’s mouth is an apology.

“You got to forgive me if I don’t remember too much,” he says. “I had a stroke.”

Signs of that stroke are everywhere — the bed in the dining room, a shower installed in the pantry. John is thin and sits in blue pajama pants in the wheelchair he uses to get around.

He may, however, have overstated his memory problems.

“We went to Harding … that’s the school right up here,” he says. It was 1952, and that’s where he saw the woman who would become his wife — “this girl, in this long red sweater, and her red hair. And I said, ‘That’s the girl for me,’ ” he says of Carol Iovine.

“I came out on top,” he says, laughing.

Carol, who is sitting next to her husband, explains that John’s stroke came in the middle of a bad run of health. First, he developed an ulcer, she says. Then he needed an abdominal surgery. After that came the stroke — and more.

“He had pneumonia, jaundice, sepsis; clot in the right lung,” she adds. All of that hit between October 2013 and January 2014.

John, a former house painter, spent 79 days in the hospital — some of that unconscious, and nearly all of it stuck in a bed.

“Aw, man — it was hell,” he says.

Sink or Swim

John Iovine finally went home in April 2014, after several months in a rehab facility.

And this point in patients’ recovery — when they’ve been discharged and have to sink or swim on their own — is the stage that everyone in the health system is paying special attention to right now. For too long, too many people like John Iovine would take a dive at this stage and end up back in the hospital again.

The industry calls these returns to the hospital preventable readmissions, and they are a huge drain on finances, costing Medicare alone $15 billion annually. That’s why Medicare launched an initiative a few years ago that penalizes hospitals that see too many patients readmitted too soon. And in turn, that spurred many hospitals to pay more attention to the problem.

Now insurance companies are also taking a stab at a solution.

“We are trying to identify which patients are likely to be hospitalized in the next three months — so that’s our target,” says Somesh Nigam. He’s the chief informatics officer for Independence Blue Cross, a Philadelphia-based insurance firm.

Independence Blue Cross, he says, is working to identify all those among its customers who are sick or frail enough to be on the edge of hospitalization.

To do so, the company runs algorithms on the huge amounts of health data at its disposal: billing claims, lab readings, medications, height, weight and family history. It also throws in information about the client’s neighborhood, including poverty rates.

“The health care data we provided to build these algorithms is equivalent, I think, to [all the data in] five Wikipedias,” says Nigam.

The computer algorithm sifts through all that information and pops out a score for each individual patient, identifying those it deems at highest risk.

Independence Blue Cross then assigns each high scorer a staff member — what it calls a “health coach,” who will work at no charge to the client to see what extra services may be helpful.

“This coordinated effort then works for the patient,” Nigam says. The coach may assemble health information tailored to the patient’s needs; make medical appointments; resolve medication issues, or maybe help arrange transportation to the doctor’s office. Sometimes the coach helps arrange for a home care nurse.

“And all of that,” Nigam says, “is beginning to show a pretty significant drop in hospitalization rates in our region.”

Independence Blue Cross has identified 18,000 clients for this sort of extra attention and, as just one sign of success, has already seen a 40 to 50 percent reduction in expected hospital admission rates for people with congestive heart failure.

Early successes include the Iovines.

Life Changing

Carol Iovine’s life changed, too, after her husband’s stroke: She’s having to manage his new medications, and she helps John shower and get to the toilet. They need to hire a wheelchair-accessible van for each appointment and therapy session, and there are many.

She says having the support of John’s health coach has made a big difference in helping her manage her husband’s needs.

“He was supposed to get blood work, and they wanted me to take him to the ER to get blood work,” Carol remembers. ” ‘Uh-uh,’ I said. ‘No way.’ ”

She called their health coach Donna Crockett, and told her the problem. “And the next thing,” Carol Iovine says, “a nurse was here taking blood.”

Big picture: The money the health insurance plan spends on having Crockett arrange a visiting nurse, or streamline appointments is nothing compared to the cost of a hospital admission.

Writing the Rules

That promise of savings has a lot of health care specialists taking a harder look at the useful potential — and possible drawbacks — of these predictive computer formulas.

“There is a lot of interest in the area right now,” says Glenn Cohen, a professor at Harvard’s law school, who has written about the legal and ethical concerns raised by the collision of health care and big data. “It is a great coming together of the health care world and the computer science world, as well as the patient experience world.”

Still, he has some qualms.

“There are questions of whether people whose data is going to be used to build the engine have the right to opt out,” Cohen says. “Do they have to affirmatively opt in? Do they have to even be notified it’s being used?” These are still gray areas, he says.

The field is so new it doesn’t yet have established standards for how this information should be handled, Cohen says.

Independence Blue Cross says it follows federal health privacy guidelines regarding anonymity, and is only using the information to better serve its members. But it doesn’t ask the clients who subscribe to its health plans if they want to opt in.

“The data is only used to improve or coordinate care,” Nigam says. “And that is something that you would agree is our role.”

Health-wise, coordinated care seems to have made all the difference for John Iovine. He hasn’t been hospitalized in the year since Independence Blue Cross assigned him a health coach.

The insurer says the early results from its hospitalization efforts are so promising that the company is expanding its efforts. The firm is partnering with New York University’s Langone Medical Center on a next target — Type 2 diabetes. The goal is to spot those most at risk of getting diabetes before they start showing symptoms — and then intervene, in hopes of preventing the illness.

This story is part of a partnership that includes WHYY, NPR and Kaiser Health News.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Even in Kentucky, which championed the 2010 health care law by expanding Medicaid and running its own insurance marketplace, about half of poor people say they have heard little about the Affordable Care Act, according to a Harvard University study published Monday in Health Affairs.

Awareness of Obamacare was even lower in Arkansas and Texas—two states that have not embraced the law as warmly. The study — which surveyed nearly 3,000 low-income residents in the three states last December– found 55 percent of those Texans and 57 percent of those Arkansans had heard little or nothing about the law’s extension of health coverage. Arkansas expanded Medicaid eligibility to cover more people under the law, but the state legislature prohibited spending public money to promote that or the federal subsidies available to help people buy private Obamacare plans. Texas did not expand Medicaid and restricted private groups wanting to help people enroll in new insurance options.

Such assistance was critical to whether people completed the application for coverage process, the study found. In fact, enrollment assistance led to a nearly 10 percentage point increase in the probability of people getting coverage, the study found.

Not surprisingly, enrollment rates in Medicaid and the private health plans sold on the online Obamacare marketplace were higher in Kentucky, followed by Arkansas, with Texas having the lowest enrollment rate.  That was true even for applicants eligible for subsidized private coverage in all three states because their incomes fell between the federal poverty level (about $11,800 for an individual) and 138 percent of poverty (about $16,300). In Arkansas and Kentucky, people making up to 138 percent of the federal poverty level also had option to sign up for Medicaid. In Texas, they did not have that option.

The survey showed less than half of poor people in the three states said the law has helped them, though the rate of those saying they had been helped ranged from 40 percent in Kentucky, to 30 percent in Arkansas, down to 21 percent in Texas.

The findings confirmed what most experts have long presumed: State policies have a big impact not only on eligibility, but also on who chooses to apply for coverage and whether they successfully enroll.

That came as no surprise to enrollment workers in Arkansas and Texas.

Mimi Garcia, Texas state director for Enroll America, said her enrollment assisters have encountered people who thought the health law didn’t exist in their state because state leaders opposed it. “It’s definitely been an uphill battle,” competing with the governor and Republicans who constantly bash the law, she said.  Even if assisters get past that hurdle, explaining how insurance works to those who have never had it can be tricky. “This is all pretty intimidating,” she said.

Marquita Little, health policy director for Arkansas Advocates for Children and Families, said the study highlights just how important personal assistance is signing people up for Medicaid or subsidized coverage. Arkansas is exploring starting a state insurance exchange, though probably not until 2016 or 2017.

Few states have seen the impact of Obamacare more than Kentucky.

Since the fall of 2013, Medicaid enrollment in Kentucky has jumped by more than 500,000 people, or 88 percent, the highest increase in the country.  Another 109,000 people have enrolled in a private health plan through the state’s exchange. Since 2014, Kentucky’s uninsured rate has fallen from 20.4 to 9.8, the second largest decrease in the nation, according to latest Gallup poll. Arkansas has seen the biggest percentage drop in uninsured, from 22.5 percent to 11.4 percent.

While many of Kentucky’s poor may be unfamiliar with the terms “Affordable Care Act,” or “Obamacare,” they are familiar with Kynect, the state’s exchange. The Harvard survey did not ask people if they had heard of Kynect. But a survey by the Foundation for a Healthy Kentucky in January 2014 found 80 percent of Kentucky residents were aware of Kynect, and only 30 percent of low-income adults were not.

Benjamin Sommers, the study’s lead author and an assistant professor at the Harvard T.H. Chan School of Public Health, said the political fighting over the health law — which many predicted would end years ago — has hurt efforts to educate people about its benefits. “People are hearing conflicting messages,” he said.

Another factor in low awareness, he said, is that many poor people lead busy lives and don’t make health insurance a priority when they are healthy.

That lack of knowledge has implications because the biggest factor determining if people apply is not their political affiliation, nor education, but whether they are aware of the law, he said.

Among those who did not apply, the most common explanation was that they thought coverage cost too much, the study found. But in Arkansas and Kentucky, those surveyed could get Medicaid for free and in Texas those between the federal poverty level and 138 percent of the poverty level could get subsidies that would make the total cost nominal.  “People are worried about the cost when they don’t have to be,” Sommers said.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Advocates for children with rare diseases are watching closely a congressional effort to streamline the nation’s drug approval process because the bill includes a provision extending a federal program that rewards companies making remedies for these young patients.

The reward program, the advocates say, offers hope to families that often have very few options. Approximately 15 million children are diagnosed with rare diseases, and 35 percent of deaths in the first year of life are caused by them.

“Treatments aren’t getting to kids, and kids deserve more than the leftovers,” said Nancy Goodman, the founder and executive director of the advocacy group Kids v Cancer whose 10-year-old son died from brain cancer. She helped push for the original reward program in the hope that children like her son would have access to a wider range of treatments.

The extension of that program is part of the bipartisan 21st Century Cures bill, which seeks to rewrite the rules for drug development to make innovative treatments available faster. The overall bill has generated support on Capitol Hill, but some critics contend that it has the potential to undermine drug safety and profit drug makers.

Children’s advocates say there is a shortage of good therapies for rare and often deadly pediatric diseases that can include a wide variety of conditions including cancer, skull deformities or enzyme deficiencies. Pharmaceutical companies have historically been hesitant to test drugs for children because of concerns about potential negative outcomes, children’s inability to consent to treatment and the perception that the market for these drugs was limited. So doctors often have been left to use adult-tested drugs on sick children without the studies that show pediatric safety or effectiveness.  But drugs used on adults don’t always work on children in the same way because of differences in metabolism and maturation of organs.

The advocates say more research needs to be conducted with children. But that testing is a sensitive process. It can be very costly, and it requires extra care because there are more stringent ethical protocols to protect these minors. Bad results—either injuries or deaths – can set back research efforts and have financial consequences for the company.

With that in mind, Congress in 2011 set up a program to help promote more pediatric drug research. It gives creators of medicine for rare pediatric diseases a voucher that they can use to have another one of their drugs approved quicker than usual – six months vs. a process that can run a year or often more.

Drug makers can also sell that voucher, which can be a big windfall for a small drug company trying to recoup research and development costs. There have been four vouchers given out since 2014, and one was sold for $67.5 million and a second for $125 million.

The voucher program, which advocates say holds big potential, expires next year. The cures bill seeks to extend it another three years.

“A lot of companies are reluctant to get into pediatric drug development because it’s very difficult if something goes really wrong,” said Alexander Gaffney of the Regulatory Affairs Professionals Society, an association for people involved in overseeing health care or the quality of health care products.

Drugs that are approved for cancer in adults are commonly not approved in kids. “Children are not simply small adults, they metabolize drugs very differently,” Gaffney said.

Critics say that however well-intentioned the voucher program is, it could have some unintended consequences. For example, a company could get a drug approved by the Food and Drug Administration but never bring it to market, if the maker decides it would not generate enough money. Yet the company would still pocket the priority review voucher.

Because of the speed sought by the program, vouchers could be given out without some of the safeguards that come in more traditional testing. For example, the research might not uncover that the drug could be fatal to a child after a few months or years.

Diana Zuckerman, president of the National Center for Health Research, a nonprofit group that seeks to represent children and families on health research policy issues, says the rush in moving drugs through the system can obscure problems. Drug makers “shouldn’t be able to sell it [or use it] unless it works,” she said.

She noted that in some studies, as few as 10 kids are included because the disease is so rare. With such a small population size, the company is not likely looking at big profits.

“When you’re doing a study of rare disease, it’s a small sample size and it’s easy to manipulate the data to make it look better than it is,” said. “You don’t want an incentive to represent the company wrongly in the short-term,” to get the voucher for another larger drug.

Julia Jenkins, executive director of the EveryLife Foundation for Rare Diseases, an advocacy group pushing for drug companies to spend more on drug development, wants the pediatric drug voucher program extended. She notes that the program is still too new for officials to evaluate whether it is effective.

One problematic part of the current House version, she said, is that it only extends the program for three years, and drug companies generally need 10 years to scratch up investors and research a new drug. The potential reward of expedited drug review might not be enough to allow a company to make a financial plan for a drug based on the program.

The bigger cures bill covers more than 60 health issues, including a $10 billion boost in funding for the National Institutes of Health and $550 million in extra money for the FDA over the next five years. Other provisions include creating a database of genomic information from a million U.S. patient volunteers and allowing the FDA to approve drugs without the gold-standard clinical trial, instead using smaller observational studies or clinical experiences.

The bill passed the House Energy and Commerce Committee unanimously in May and is expected to come up for a vote in the full House.  Senators are in the early stages of working on a similar bill.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Later this month, the Supreme Court is expected to rule on King v. Burwell, a case challenging the validity of federal tax subsidies helping millions of Americans buy health insurance if they don’t get it through an employer. If the court rules against the Obama administration, those subsidies could be cut off for people in the approximately three dozen states using healthcare.gov, the federal exchange website.
 
Here are answers to some frequently asked questions about the case.

Q: What is this case about?
 
A: The case challenges the federal government’s ability to provide subsidies to individuals who buy health insurance on the federal marketplace, sometimes called an exchange. Those subsidies are provided to lower- and middle-income customers since the health law mandates that most people have insurance. At issue is a line in the law stipulating that subsidies are available to those who sign up for coverage “through an exchange established by the state.” In the heated politics following the health law’s passage, a majority of states opted not to set up their own exchanges and instead rely on the federal government.  
 
In regulations issued in 2012, the Internal Revenue Service said the subsidies would be available to those enrolling through both the state and the federal health insurance exchanges. Those challenging the law insist that Congress intended to limit the subsidies to state exchanges, but the Obama administration says the legislative history and other references in the law show that all exchanges are covered. Many lawmakers and staff membersinvolved in the debate agree.
 

A:  According to the Department of Health and Human Services,more than 6 million people would lose their subsidies in the states where the federal government operates the health insurance exchanges.
 An analysis from the Kaiser Family Foundation found that subsidized enrollees would face an average effective premium increase of 287 percent if the court rules against the administration. (KHN is an editorially independent program of the foundation).

Florida would have the most people lose subsidies (1.3 million), worth nearly $400 million, with Texas ranked second in both categories (832,000 residents losing $206 million per month), according to the KFF report.
 
Even people who were not getting subsidies could be indirectly affected by a Supreme Court ruling against the administration. That’s because the elimination of subsidies would likely roil the insurance risk pool. Without the subsidies, many healthy people are likely to give up their coverage and that would drive up costs for those continuing to buy insurance.
 
Individuals in state-run exchanges and the District of Columbia would keep their federal subsidies. 
 Q: If the Supreme Court rules against the Obama administration, when would subsidies disappear? Would those who lose subsidies still be required to buy health insurance under the law’s “individual mandate?”
 
A: Supreme Court decisions generally take effect 25 days after they are issued. That could mean that the subsidies would stop flowing as soon as August, assuming the decision is issued later this month, as expected.
 
Although the law’s requirement that individuals have health insurance would remain in effect, individuals are not required to purchase coverage if the lowest-priced plan in their area costs more than 8 percent of their income. So without the subsidies, many, if not most, people who had been receiving help would become exempt.
 Q: Will Congress fix this?
 
A:  Congress could restore the subsidies by passing a bill striking the line about subsidies being available through exchanges “established by the state.”  But given how many Republicans oppose the law, that sort of bipartisan cooperation is considered unlikely.
 
GOP lawmakers generally want to scrap the health law, but some back legislation that would keep the subsidies flowing temporarily.They would attach strings that Democrats and President BarackObama will surely object to. For example, a proposal from Sen. Ron Johnson, R-Wis., would maintain the subsidies for current beneficiaries through August 2017 but repeal the health law’s individual and employer mandates and requirements for specific types of coverage.  However, a report from the American Academy of Actuaries said some changes favored by Johnson and other Republicans, such as eliminating the individual mandate “could threaten the viability” of the health insurance market. Republicans have not coalesced around a specific strategy.
 
States could consider setting up their own exchanges, but that is a lengthy and complicated process and in most cases requires the consent of state legislatures.  Many of those legislatures will likelynot be in session when the court rules and would have to be called back to take action. 
 
Sylvia Burwell, the secretary of Health and Human Services, told Congress earlier this year that the administration has no authority to undo “massive damage” that would come if the court strikes down subsidies in federal exchanges. But she also has said the administration will work with states to help mitigate the effects.
 Q: Is this the last legal hurdle the health law will face?
 
A:  No, but it’s probably the most significant one left. In other suits,House Republicans are challenging the money used for the law’s subsidies, saying it was not properly approved by Congress and that the administration did not have the power to delay the law’srequirements that larger employers provide coverage or face a penalty. Additional legal challenges include several dozen cases still pending over birth control coverage.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Comprehensive prevention program effectively reduces falls among older people