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With the Zika virus in the daily headlines, public health authorities should be looking carefully at how they communicate about this latest emerging infectious disease.

People need to be alerted, not alarmed.

That balance can be hard to strike when the health sources people turn to range from acquaintances on social media to politicians, instead of physicians and other medical professionals.

The Ebola outbreak in 2014 demonstrated that many of the old rules about public health communication no longer apply. Elected officials and media used to turn to professors or government public health officers. Now, headlines can be dominated and people can be swayed by a clever tweet or caustic comment on a talk show, even if they come from someone with no public health expertise.

Zika virus is considerably less dangerous than Ebola, but communicating about the risks requires some of the same delicate handling. In the past, politicians would yield and let physicians lead. In the Ebola outbreak, politicians not only demanded the spotlight, they often stoked fear by providing inaccurate information. Sen. Rand Paul, who has a medical degree, said that people could get Ebola just by helping someone into a taxi. There was no evidence to support that statement.

When scientists explained that Ebola isn’t transmitted by casual contact, many members of the public didn’t listen. A poll by Harvard researchers found that 4 in 5 Americans thought a person was likely to get Ebola if a person with Ebola coughed or sneezed on them or if they touched an object that had been in contact with an Ebola patient’s body fluids. (Ebola transmission requires direct contact, such as when an Ebola patient’s sweat gets into another person’s body through a cut or the eyes, nose or mouth, according to the Centers for Disease Control and Prevention.)

Those of us who led medical center communications during the crisis had to play defense against false facts spread by people who should have been more responsible. Our experts had to get in front of people personally to overcome needless alarm stoked by misinformation in the media and elsewhere.

When Awareness Goes Awry

Errors in communications planning, preparation and practice contributed to unfounded hysteria about Ebola. As in the 2012 movie Contagion, fear can as dangerous as the infectious disease itself.

When World Health Organization Director-General Margaret Chan declared Zika virus a “public health emergency” on Feb. 1, her words were measured and precise. She focused on the need for international coordination to detect and study Zika infection cases and their consequences, develop tests and vaccines, and prevent new infections. She said there was no justification for travel restrictions. U.S. officials initially followed the WHO recommendation, but issued their own travel advisory on Feb. 12 suggesting that pregnant women “consider postponing travel to any area where Zika virus transmission is ongoing.”

Even before the CDC advisory, a Reuters/Ipsos poll conducted in early February found that 41 percent of Americans who are aware of the Zika virus now are less likely to travel to Latin America and the Caribbean, where Zika virus cases have been reported. The poll also found that 60 percent of Americans are concerned about Zika virus, including 18 percent who are “very concerned.”

Those poll numbers reflect that people worry, especially when they do not know much about the risks. With Ebola, people knew little more than that it was deadly. That lack of understanding undercut efforts by health officials to prepare for Ebola cases and manage the few that U.S. hospitals treated.

Getting accurate information out to more people in advance of an outbreak could have made a difference. That means more than just distributing messages via email. Texas Presbyterian Hospital executives apparently thought that distributing an Ebola policy to medical staff was sufficient preparation in case a person with Ebola might walk in the front door, as Thomas Earl Duncan did on Sept. 25, 2014.

“We believe that we were very well attuned to the potential risk of Ebola, and that we had communicated that fairly aggressively. What we didn’t do is train and simulate for that,” said Dr. Daniel Varga, chief clinical officer of Texas Health Resources, the company that operates Texas Presbyterian Hospital, in an interview with member station KERA.

Communication Requires Interaction

At Emory University in Atlanta, where Dr. Kent Brantly was successfully treated for Ebola, leadership figured out fast that face-to-face conversations were required to effectively inform hospital staff and media, says Vince Dollard, one of Emory’s communications leaders.

When Dr. Craig Spencer was taken to Bellevue Hospital in New York with Ebola symptoms, there was plenty of hysteria, but health care workers throughout the city already knew the protocols, had gone through training and had fact sheets, posters and other materials on hand to help explain facts to concerned people. People may not believe government scientists, but they had a chance to get reliable information from their own doctors.

“One of the realities we learned and have to face is that today, many in the public simply will not believe a ‘government expert’ or top scientist anymore, not when they rely on Donald Trump, Sarah Palin and Jenny McCarthy for health information,” says public relations consultant Kathleen Lewton, who has worked with hospitals for more than 30 years. “People stopped listening when it came to vaccines, so by the time we got to Ebola, experts from NIH and CDC were in some cases drowned out by others who saw a spotlight opportunity.”

Lewton cites New Jersey Gov. Chris Christie as one example. On Oct. 22, 2014, Christie said elected officials “need to be responsible and cautious when talking about Ebola.” Two days later, he and New York Gov. Andrew Cuomo announced mandatory quarantines for returning health care workers, despite objections from the National Institutes of Health and the CDC.

So far, with Zika, the tone has been relatively calm. The CDC was ready with posters, fact sheets and fliers. President Obama went on CBS This Morning on Feb. 8 with a clear, reassuring message: “The good news is this is not like Ebola, people don’t die of Zika — a lot of people get it and don’t even know that they have it,” said the president. But he said Zika appears to present a risk to pregnant women and their offspring, echoing public health notices from both WHO and CDC.

Whether the public stays calm remains to be seen. Just as public health professionals keep watch for the next emerging disease, they also must anticipate the next source of fear and be ready to respond with more than just talking head experts. The days of waiting until an orderly news conference can be arranged are gone.

Doug Levy is former chief communications officer of Columbia University Medical Center in New York and has been an adviser to public health and other officials on crisis communications for more than 15 years. Previously he covered medicine and health at USA Today.

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The doctor told Sharlene Adams to get a blood pressure cuff, so she set out to buy one.

For Adams, who lives in West Baltimore, that meant four bus rides, a stop for a doctor’s signature, two visits to a downtown pharmacy for other medical supplies, a detour to borrow money for a copay, a delay when a bus broke down and, at last, a purchase at a pharmacy on the east side of town.

The 7-mile trip there took 5 1/2 hours. Then she had to get back home.

She seemed unfazed. For Adams, this is what it takes to follow a doctor’s recommendations.

Adams’ neighborhood is not far from where Freddie Gray grew up and died after being injured in police custody last April, an event that triggered unrest.

Incomes here average less than $28,000 a year, according to the U. S. Census. Drugs and violence plague the area.

Adams’ story isn’t about huge barriers to medical care but about a series of smaller hurdles that hinder access for her and many other low-income people.

Adams, 55, has no car, no computer and no credit card. Her insurance will pay for a blood pressure cuff, but only with a prescription. She doesn’t have the ready cash that would allow her to pop into a drugstore and pick up a $40 blood pressure cuff off the shelf.

She’s been treated for mental health problems including bipolar disorder, and she has been homeless — a time when she never saw a doctor.

Adams acknowledges she used to use illegal drugs, but that, she said, ended years ago. Yet when doctors hear she used crack, she said, they sometimes dismiss her complaints.

“You have some of them that, they treat you like dirt, really, because they think you’re the scum of the earth anyway,” Adams said.

She tries to stay healthy, but she is working with few resources and has to overcome most of a lifetime spent ignoring her health. She fails as often as she succeeds.

Adams has diabetes but isn’t clear on exactly when to test her blood sugar. She doesn’t like needles and doesn’t want to take insulin. She wants to eat better but says the food her doctor recommends costs too much. She wants to lower her blood pressure but she still smokes.

For Adams, seeing a doctor, filling a prescription or scheduling a medical test comes with frustration that middle-class patients don’t have to deal with. She knows the difference, and she resents it.

When Adams needed a colonoscopy, for example, a doctor referred her to a center in Pikesville, about 8 miles from her home on North Bentalou Street. Adams says she can’t get there.

“We don’t have the opportunity to get things like some other people get,” she said. “You lost. You run around, you don’t know if you have cancer.”

The Journey Begins

Adams has lived on North Bentalou Street since December 2014, and uses a housing voucher to help with her rent payments. One Monday morning last fall, she pulled on a pair of brightly patterned leggings and topped them with a pink zip-up jacket.

Her long, fake nails were painted with ornate patterns, and she wore earrings. She was ready for the long trip she hoped would end with the purchase of a blood pressure cuff.

Adams went out the door of her rent-subsidized, porch-front brick rowhouse and headed to the bus stop.

Along the way, Adams seemed to know everyone. She said hi to the women with children clad in school uniforms, to the men sitting on their porches sipping cans wrapped in black plastic bags.

She asked every one of them for a cigarette or for spare change to buy a loose cigarette from a former Army medic who lives next to the bus stop.

“I can’t start my day without a cigarette,” Adams said. She knows smoking is bad for her, but quitting is low on her list of priorities.

The quest for a blood pressure cuff had been initiated the week before, when Adams visited her primary care doctor at University Family Medicine on Redwood Street.

During the 20-minute visit with Dr. Kerry Reller, she managed to discuss Adams’ two dozen prescriptions, check her blood sugar and pressure, make sure she was scheduled for a mammogram and colonoscopy and attend to Adams’ seemingly endless list of ailments, from her eyes to her ankles. She also asked about Adams’ diet and if she’s getting the right kind of exercise.

Reller told Adams to start monitoring her blood pressure daily along with her blood sugar.

Medicaid, the health insurance plan for low-income people that covers Adams, would pay for a blood pressure cuff to help her.

But there was a problem with the paperwork. Later in the week, when Adams called to check on her order, the pharmacy where she was going to buy the cuff told her she would need the doctor to sign a new prescription and fax it over again.

That missing signature was the reason Adams was once again heading downtown. She had left her house a little after 11 a.m. She watched three No. 13 buses, part of Baltimore’s notoriously unreliable public transportation system, go by. It would be 45 minutes before a No. 91 bus would come to take her downtown.

Bus riders with smartphones can use an app to track the buses and see what time they will really arrive, but the app is of no use to Adams. She doesn’t have a smartphone.

Before getting to the doctor’s office, she stopped at the University of Maryland pharmacy to pick up lancets for her diabetes test monitor. Adams is supposed to check her sugars, in West Baltimore parlance, every morning, fasting until she draws her blood and writes down the results.

On this morning, she was out of lancets, the tiny needles she uses to prick her skin to get the blood sample, so she hadn’t done the test. Because she hadn’t yet checked her blood sugar, she also hadn’t eaten — dangerous for someone with diabetes. But Adams was trying to follow the doctor’s instructions literally.

This was another miscommunication between Adams and her doctor, something that happens regularly. Adams acknowledges that she has a short attention span and says she doesn’t read well, problems that make it difficult for her to fully understand doctors’ instructions.

She said she is like many other people she knows. “A lot of people don’t understand the words they use,” she said. “Half of them don’t know the meaning. Half of them can’t even read. Half of them can’t even spell. Half of them are partially illiterate,” Adams said. “Basically they are going to be lost.”

Adams said she tries to take care of herself. She weighs herself at exercise classes she attends at a community center on Mondays and Wednesdays. She stays away from fried foods and salt, but sweets are her weakness — one cookie can turn into 24.

She said she often can’t afford the foods and sugar substitutes that her doctor recommends. “It is kind really of confusing and hard because prices are so high,” Adams said. “You don’t get that many [food] stamps, the check’s not that big, you are barely making it to pay your bills. And you go to pantries and they don’t have food that you basically can eat as a diabetic.”

At The Doctor’s Office

By 12:30 p.m., Adams had left the pharmacy and walked a block to her doctor’s office on Redwood Street to begin the process of getting a signed prescription faxed over to the medical supply store. It would take an hour and a half.

While Adams waited, Reller faxed a refill for a diabetes prescription to a downtown pharmacy — the same one Adams had just been to for lancets. At 2 p.m., Adams was out of the clinic, walking back to the university pharmacy to pick up her pills. But they weren’t ready. She would have to return another day.

At 2:15, Adams boarded another bus for the trip to East Baltimore to the medical supply store where she now had a prescription to buy a blood pressure cuff.

But she first had to make another stop, this time at a friend’s house to borrow money in case the pharmacy demanded a copay. The friend lives next door to Adams’ daughter, Shardaye.

The friend gave Adams a cigarette and $11, seven of which were in rolls of coins.

They chatted a bit, so that Adams could be updated on the comings and goings at her daughter’s house. Then Adams went back up the street to catch a bus to Northern Pharmacy & Medical Equipment on Harford Road.

There would be another complication.

The bus broke down on the way. It got rolling again, but it would be 3:30 before the bus finally dropped Adams off outside the pharmacy.

Searching For Instructions

Inside the store, Adams browsed the aisles of medical equipment like a budget-conscious shopper in a high-end department store. She muttered to herself about getting her Medicaid plan to pay for diabetic socks and canes.

There was a bowl of old Halloween candy on the counter. Adams picked up a mini chocolate bar. It was the first thing she had eaten all day.

At 4 p.m., a woman in a short lab coat and high heels handed her a box holding the cuff and moved on to the next customer. Adams stepped back and opened the box, unwilling to leave until she understood the equipment. She hunted down another worker and, trying the cuff on, asked if it fit correctly. The clerk assured her that it was big enough.

Three bus rides, three trips to two pharmacies, a stop at the doctor’s office and five hours later, Adams had her blood pressure cuff.

Now she’d have one more bus ride to carry her home. She left the pharmacy and crossed the street. But before the bus arrived, Adams strode over to a gas station, pulled out the rolls of coins her friend had given her, and bought a pack of cigarettes.

This story is part of a reporting partnership between Kaiser Health News and University of Maryland College Park’s Philip Merrill College of Journalism, which operates Capital News Service.

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Midway through Matt Keil’s second deployment in Iraq, he came home and married his fiancee, Tracy, in 2007.

He had two weeks R&R; no time for a honeymoon.

Before he went back to war the couple had the sort of conversation unique to newlyweds in the military. “I told her if you get a phone call that I’m injured, I’m probably fine,” Matt says. “But if they come to the apartment or to your work in person, then I’m dead.”

Six weeks later the news came — a phone call, thankfully. Matt had been shot in the shoulder. It wasn’t until Tracy got to Walter Reed Army Medical Center that she got the full story. The sniper’s bullet had nicked Matt’s spine.

“The doctor came in and told me he was paralyzed from the neck down, and he said it was a ‘Christopher Reeve’-type injury,” says Tracy.

Questions overwhelmed them about the future, including whether they’d ever be able to have children. It seemed like something they could figure out later.
“They were kinda telling us we’re putting the cart before the horse,” Matt recalls. “You guys got to get through a whole hell of a lot of rehab.”

Time was running out, though, and the Keils didn’t realize it.

To have children they’d need help: in vitro fertilization. But IVF is expensive, costing, on average, at least $12,000 per cycle of treatment, according to the American Society for Reproductive Medicine.

The Pentagon’s health care system for active duty troops covers IVF. The Department of Veterans Affairs for veterans doesn’t. By the time the Keils learned about the difference, it was too late.

“We were just swallowing the fact that he was never going to go back to work,” Tracy says. “But finding out that IVF wouldn’t be covered because we agreed to retire out so quickly, that was hard, because nobody told me that.”

A law passed in 1992 made it illegal for the VA to pay for IVF, which some people oppose because embryos are often destroyed in the process.

The only option for the Keils would have been to get the procedure done immediately after Matt’s injury. They had missed the window.

Matt was just starting to accept that with the limits of current science he might never walk again. But the limit on his ability to pay for IVF was put in his way by Congress.

“This is a direct result of a combat injury,” says Tracy. “Don’t tell me that his service wasn’t good enough for us to have a chance at a family. Because we’ve already lost so much. I just want to have a family with the man that I love and please don’t make this any worse than it already has to be.”

In the decades since Congress banned IVF for the VA, the procedure has become much more common. And about 1,400 troops came back from Iraq and Afghanistan with severe injuries to their reproductive organs. Thousands more have head injuries, paralysis or other conditions that make IVF their best option.

Bills to change the law come up periodically, only to be blocked at the last minute, says Sen. Patty Murray, a Democrat from Washington. “They don’t come out and say that directly, but there continues to be a backroom concern about the practice of IVF,” Murray says. Murray’s bipartisan IVF bill nearly passed last summer.

Republican Sen. Thom Tillis of North Carolina, who is staunchly against abortion rights, effectively blocked it. Tillis declined requests for comment, but said at the time that he opposed the bill because other problems at the VA need to be fixed first.

The Congressional Budget Office estimates a change in VA policy to pay for fertility treatment could cost more than $500 million over four years.

Murray says vets should get the same options as active-duty troops. “It’s really ridiculous that Congress would deny a widely used medical procedure to our veterans just because of their own … beliefs,” she says.

Rep. Jeff Miller, the Republican chairman of the House Committee on Veterans’ Affairs, said he’s working toward a compromise that “meets the needs of this special group of severely injured veterans while being sensitive to concerns surrounding IVF procedures.”

In the meantime, many fertility clinics across the country offer discounted rates for veterans who are paying out of their own pockets for IVF.

For the Keils, who spent the year after Matt’s injury figuring out how their new life could work, offers like that came too late.

“We weren’t at a good spot in our marriage at the time, and thought that if we’re going to bring kids into this world they need to be brought into a healthy relationship,” says Matt.

“What if we didn’t even end up staying together?” Tracy adds.

They took a year to work it out, and then decided it was for sure — their marriage would survive. They also wanted a family.

“We were ready, and it didn’t matter what it was going to take,” Tracy says.

The VA told them what they already knew — no coverage for IVF. The decision still seemed crazy to them, considering how much medical care VA would pay for.

“I served my country. I was injured,” Matt says. “All my medical supplies are paid for, but the one thing they won’t facilitate [by] paying — that I lost the ability to have — was a family.”

Paying for IVF on their own seemed impossible to Matt and Tracy.

Matt’s condition meant that IVF would be even more of a financial strain than usual. Among other things, Tracy was her husband’s full-time caregiver, and they would need to hire help while she was getting treatments.

Their savings weren’t going to cut it.

But then a veterans charity paid for the Keils’ wheelchair accessible house, so they could target their money toward IVF. The local VFW held a fundraiser to help. Kids all around Denver and then Colorado set up lemonade stands and collected donations, too.

The couple’s twins, Faith and Matthew, were born in November 2010. They ride on the back of their dad’s motorized wheelchair. When he wants to lift them high in the air they jump on his feet and he reclines the chair until he’s upside down.

This winter the kids are outside building igloos and snowmen.

Thousands of vets have injuries that make IVF their only option for having a family. Matt and Tracy Keil say they want them all to get that chance.

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As the 2015 tax filing season gets underway, tax preparers said a delay in health law tax forms is tripping up some consumers, while others want details about exemptions from increasingly stiff penalties for not having insurance.

Under the law, most people must have health insurance or pay a fine. In 2015, the penalty was $325 per adult and $162.50 per child up to $975, or 2 percent of household income, whichever is greater.

This is the first year that employers, insurers and government programs such as Medicare and Medicaid are required to send consumers tax forms that report whether they offered or provided health insurance that was considered affordable and adequate under the law.

The forms — 1095-B or 1095-C — are designed to help consumers in filling out their taxes but the forms don’t need to be filed with their tax returns. The issuers also send copies to the Internal Revenue Service.

Some consumers, however, may not receive the forms until shortly before the April 15 tax filing deadline because the IRS has pushed back the due date from Jan. 31 to March 31 for employers and others that provide insurance.

In a notice describing the change in due dates, the IRS said, “Following consultation with stakeholders, however, the Department of the Treasury … and the Service have determined that some employers, insurers, and other providers of minimum essential coverage need additional time to adapt and implement systems and procedures to gather, analyze, and report this information.”

What’s a consumer to do if the form hasn’t arrived? File anyway, even without the form, the IRS says. If people make a mistake on their return because they didn’t have the 1095-B or 1095-C forms and relied on information from their employer or other coverage providers instead, they won’t have to amend their return, the IRS said.

For the 85 percent of people who had coverage all year, the delay is a non-issue, said Tara Straw, a senior policy analyst at the Center on Budget and Policy Priorities who manages one of the IRS’ Volunteer Income Tax Assistance offices that provide free tax help for lower income people. These people can just check the box on their return that reports that they had full-year coverage. If their 1095-B or 1095-C reports that they did not have coverage all year, they can simply ask their employer or insurer to correct their records and what they sent to the government.

But there will be a small number of people who enrolled in marketplace coverage that now show overlapping coverage.

In these situations, consumers may need to contact the marketplace and whoever provided their other coverage to correct the forms.

People who have marketplace coverage receive 1095-A forms that report when they had coverage and the amount of advance premium tax credits received. The 1095-A forms weren’t delayed and went out on schedule in January.

In addition to questions about the 1095 forms, consumers are asking tax preparers at H&R Block about qualifying for exemptions from the penalty for not having insurance, said Lindsey Buchholz, a tax attorney at H&R Block’s Tax Institute.

Among the most asked about of the roughly two dozen exemptions is the one that allows people to avoid a penalty because the lowest priced coverage available to them either from their employer or on the marketplace would have cost more than 8.05 percent of their income, the threshold at which it’s considered unaffordable, Buchholz said.

“Most of the time they don’t qualify for the exemption because they would have qualified for premium tax credits, and the assistance makes it affordable,” she said.

People can also apply for exemptions because of hardship, including eviction or foreclosure, bankruptcy, the death of a family member and medical debt, among others.

“We’re seeing more interest in hardship exemptions this year,” probably because the penalties for not having insurance are increasing, Buchholz said.

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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Dr. Seth Ammerman listens intently to his new, 21-year-old patient. Ernesto, who does not want his last name disclosed, is homeless. He is earning a high school degree and working part time, but at night, he and his brother share a tent that they set up on the streets of San Jose, Calif. The daily stress of being homeless is wearing Ernesto out, and making him light up too many cigarettes.

“I just want to cut down on my smoking,” says Ernesto, in a tentative, soft voice. “I’ve been on the streets all the time, you know? I just want to make sure I’m OK.”

That’s why Ernesto walked into this mobile clinic, parked just a few steps from his classroom at a continuation high school. Inside the shiny blue tour bus, the exam room where Ernesto sits is equipped with Wi-Fi and the ability to get HIV test results in 20 minutes.

Ammerman, medical director of the van clinic and a clinical professor of adolescent medicine at Stanford University, nods sympathetically as he listens. In his 20 years of working with the program, he says, he has treated thousands of uninsured and homeless young people ages 24 and under.

Twice a week, Ammerman and two nurses park the clinic at continuation high schools and other places frequented by at-risk adolescents in Santa Clara, San Mateo and San Francisco counties. The van is a community project of the Lucile Packard Children’s Hospital Stanford and the Children’s Health Fund, with support from Samsung.

The team provides free medical, nutrition and mental health services, including reproductive health care and treatment for chronic illnesses, substance abuse and depression. All medications are free and provided at the time of consultation. A social worker available for counseling sometimes connects patients to outside resources. And a registered dietitian works with teens who are malnourished, which is a frequent health issue for this population.

Some of the 400 patients annually who visit the teen health van have never before seen a doctor, Ammerman says.

“Going to the patients makes all the difference,” he says, “and it’s not just a matter of convenience. It really is that these kids, because of all these access barriers — lack of insurance, lack of transportation — they’re not going to get this kind of care unless we go to them.”

For many patients, the teen health van becomes a trustworthy and reliable place in an otherwise unstable world.

Grace Kim first set foot in the van 10 years ago, when she was 17. She admits she was skeptical.

“Because it was a van, and I wasn’t really sure what they could really provide for me,” Kim says. She doesn’t initially trust people very easily, she says. “That probably comes from the territory that I grew up in.”

Kim says she grew up with abusive relatives in a house “full of conflict.” By the time she was 14, she had already attempted suicide. With the help of a high school counselor, Kim moved out of her parents’ home into a transitional living program, which initially required her to get medical checkups at the van. For the next four years, Kim was a regular patient.

Ammerman and other staff at the van treated Kim’s malnutrition, substance abuse and other health issues. They also connected her with free visits to see a psychiatrist at Stanford Medical Center who treated her depression. Kim thrived.

“If I didn’t get that help, I would probably be in a very bad place,” says Kim, who is now working on her master’s degree in counseling psychology at Santa Clara University. “The whole mental health aspect of it was probably the most beneficial, probably the most powerful.”

Today, Kim facilitates a support group for suicide survivors at Santa Clara Valley Medical Center and says her passion for her work comes from those dark days in her past. She still keeps in touch with Ammerman, calling him once in a while with health-related questions.

“I trust him absolutely with everything because he’s seen me at my worst, and he still, to this day, has the most faith in me,” says Kim, adding that Ammerman motivated her to take care of herself and do better. “To have someone care for you and tell you that you can get better and do anything that you put your heart into. … I mean, there are no words for that.”

Kim recognizes she was lucky to have access to housing, medical and mental health resources — that isn’t always true for others, she says.

Health Van’s Patients Often Face Precarious Housing

More than 40 percent of the patients treated at Stanford’s health van are homeless, says Ammerman. They are under the age of 25 and live on the streets, in cars and, most commonly, in overcrowded apartments. While doubling up with relatives or friends may sound like housing, Ammerman explains, it’s not stable because people can be asked to leave at any time.

Ammerman says he’s seen a significant increase in the number of teens and young adults living in overcrowded conditions since 2008. Working families unable to make rent are more likely to end up in these challenging conditions.

“We are seeing, unfortunately, more homeless kids,” he says. “And that’s really due to the housing crisis that we are all aware of, here in the Bay Area.”

Numbers Of Homeless Youth Growing In California

California as a whole has seen a greater number of homeless kids in recent years, according to figures collected by the California Department of Education and crunched by Kidsdata.org. The education department designates students as “homeless” if their primary residence at any point in the school year was a shelter; a hotel or motel; shared housing with others due to loss of housing or economic hardship, or if they had no shelter at all.

Statewide, the rate of homeless public school students in kindergarten through 12^th grade jumped in just three years from 3.6 percent in 2011 to 4.8 percent in 2014. More than 86 percent of the nearly 300,000 homeless public school students statewide are living “doubled up with friends or relatives,” according to the Kidsdata.org report.

“So it’s a very unstable housing situation, and that is always problematic for your health,” says Ammerman.

Studies show that children and youth facing homelessness or housing insecurity are more likely than their peers to face chronic illness and mental health problems, as well as traumas and safety risks.

Resources For Homeless Youth Are Not Keeping Up

Shahera Hyatt directs the California Homeless Youth Project at the California Research Bureau in Sacramento. She supports Ammerman’s assessment of why the state is seeing a lot more homelessness among children, youth and families.

“We know that housing affordability is in crisis proportions,” says Hyatt. “In many communities across the state there’s rapid gentrification happening, and a very low housing stock.”

Homeless youth — particularly those constantly on the streets or without any access to shelters — risk sexual abuse, police harassment and substance addiction, she says. Yet the state is still lacking in services and resources for this population.

For example, Hyatt says, Sacramento has a single six-bed transitional housing center for young adults — and a nine-month waiting list of about 100 people. Two-thirds of the state’s counties lack shelters and other basic services for homeless youth, she says.

“There’s a lot of mythology about why young people become homeless … that they are unruly or want to live outside. But that’s not true,” says Hyatt.

According to a spokesman for the California Department of Finance, the state spends $1.1 million annually on programs that serve homeless youth, including the Homeless Youth and Exploitation Program and the California Youth Crisis Line.

A bill recently introduced by Assemblywoman Young Kim, AB1699, would provide $25 million in funding for homeless youth emergency service projects. The bill’s first hearing should take place within the next couple of months, according to her office.

Popularity Of Mobile Clinics Increases

Meanwhile, mobile health clinics like Ammerman’s in San Jose continue to fill a gap in access to care for young people who lack health insurance. The model of delivering care directly to underserved populations has been gaining popularity nationwide.

In the last two decades, the number of mobile clinics has grown to about 2,000 throughout the country, according to the Mobile Health Clinics Association.

“What we are seeing is greater acceptance that mobile care can be really high-quality care,” says Dr. Delaney Gracy, chief medical officer with the Children’s Health Fund. “More people are realizing that mobile health is an important part of safety net care.”

Inside the teen health van’s exam room, Ammerman ends his consultation with Ernesto by handing him packages of nicotine gum — the medication Ernesto chose from several options to help him quit smoking. Before Ernesto leaves, Ammerman has one last question for the first-time patient.

“We literally ask each kid, ‘What are you good at, what are your strengths?’ And they’re shocked at this question because no one’s ever asked that before,” says Ammerman.

Ernesto thinks for a while before responding.

“Um … I like to work and stay busy,” Ernesto says. “And I motivate my brothers a lot, as much as I can.”

“Cool! That’s a really cool thing,” Ammerman tells him.

As patients successfully take steps to care for their health, Ammerman says, they also gain the confidence to tackle other goals — like getting steady housing.

“These kids have strengths,” he says. “And by focusing on their strengths, it can really make a difference. Because strength builds strength. And success builds success.”

This story was produced by KQED’s health blog, State Of Health.

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The Baltimore health system put Robert Peace back together after a car crash shattered his pelvis. Then it nearly killed him, he says.

A painful bone infection that developed after surgery and a lack of follow-up care landed him in the operating room five more times, kept him homebound for a year and left him with joint damage and a severe limp.

“It’s really hard for me to trust what doctors say,” Peace said, adding that there was little after-hospital care to try to control the infection. “They didn’t do what they were supposed to do.”

Pushed by once-unthinkable shifts in how they are reimbursed, Baltimore’s famous medical institutions say they are trying harder than ever to improve the health of their lower-income neighbors in West Baltimore.

But dozens of interviews with patients, doctors and local leaders show multiple barriers between the community and the glassy hospital towers a few blocks away.

Reporters from Kaiser Health News and the University of Maryland’s Merrill College of Journalism spent much of the fall in and around Sandtown-Winchester, a Baltimore neighborhood where violence flared last year after Freddie Gray was fatally injured in police custody.

Residents say they have little more confidence in the medical system intended to heal them than in the criminal justice system intended to protect them.

Even though his accident happened in 2004, Peace says he cannot view doctors and hospitals with anything less than deep suspicion.

“They almost let me die,” he said.

As with so much else, there are two Baltimores when it comes to health. One population is well off and gets the best results from elite institutions on the city’s west and east sides, the University of Maryland Medical Center and the Johns Hopkins Hospital.

The other is a poor minority that gets far less even as it uses hospital services at higher-than-average rates. One indicator: The typical Sandtown resident lives a decade less than the average American.

“They come in with a great service, but they don’t have relationships with people in the community,” said Louis Wilson, senior pastor of New Song Community Church in Sandtown, a small wedge of about 5,000 households. “They want the people in the community to come in and respect them, but they don’t respect the people in the community. It does not work. It just doesn’t.”

The gap is more than the cultural distance between lower-income African-Americans and the wealthier practitioners, often of other ethnicities, who treat them, although that’s a part, Wilson said. It’s about insurance that is still unstable, confusing and perceived as expensive despite the health law’s recent expansion of Medicaid for low-income patients.

It’s about a system that still treats too many residents in the most expensive way possible — in crisis visits to the emergency room — rather than keeping people healthy in the community. It’s about having too few primary care doctors addressing everyday needs to change that.

It’s about inadequate transportation to get to appointments and jail stays that cut patients off from family doctors. It’s about avoiding medical institutions often seen in the same light as the justice system that held Freddie Gray when he died: as biased, haughty and dangerous.

“I Lost Two Aunts In That Hospital”

“When you walk into a hospital, it’s like walking into a courtroom,” said William Honablew Jr., who volunteers at LIGHT Health and Wellness, a nonprofit whose community services include helping those with HIV and other chronic illness navigate the system. “You know who’s in charge, and you know who’s not.”

Many in Sandtown have heard of Henrietta Lacks, an African-American woman whose tissue was used without permission by Johns Hopkins Hospital in the 1950s to establish a line of experimental cells. For years Baltimore blacks associated Hopkins, on the city’s east side, with the “night doctors” of African-American folklore who supposedly kidnapped black children for medical experiments, residents and community leaders say.

Bon Secours Baltimore Health System, Catholic, nonprofit and the nearest inpatient provider to Sandtown, has reduced potentially deadly, in-hospital hazards such as pneumonia and blood and urinary tract infections in recent years. Adjusted for illness severity, its death rates for Medicare patients with major conditions such as heart failure and stroke are little different from national scores.

But to the frustration of hospital officials who say they deserve better, Bon Secours is still known across West Baltimore as “Bon Se-Killer.”

“I lost two aunts in that hospital, an uncle and two cousins — five people,” said Arnold Watts, 60, in a grim accounting matched, unprompted, by several other residents interviewed.

The average Sandtown resident lives to be 69.7 years old, according to the Baltimore City Health Department — the same life expectancy as in impoverished North Korea.

Detailed data from the Maryland agency that regulates hospital prices, seldom seen by the public, illustrates why.

Residents of the ZIP code including Sandtown accounted for the city’s second-highest per-capita rate of diabetes-related hospital cases in 2011, the second-highest rate of psychiatric cases, the sixth-highest rate of heart and circulatory cases and the second-highest rate of injury and poisoning cases. Asthma, HIV infection and drug use are common.

In Sandtown, 2 of 10 babies born in 2013 were underweight — the highest percentage in any of Baltimore’s 55 neighborhoods. The share of Sandtown mothers getting early prenatal care fell by 25 percentage points in 2013 from the year before.

Dr. Jay Perman is a pediatric gastroenterologist who is president of the University of Maryland, Baltimore, which shares its downtown campus with the University of Maryland Medical Center. Perman, who says the school has a critical role to play in fighting poverty, looks out of his 14th-floor, paneled office across a boulevard that marks the beginning of Baltimore’s poor west side.

“Why,” he asks, “in the midst of this extraordinary health care enterprise that is present in Baltimore, with all this expertise, are we sitting here on this side of Martin Luther King [Boulevard] and on the west side … you have some of the most disappointing life expectancies that one could imagine?”

Two miles away, residents such as David Johnson start to provide an answer. Johnson, 52, sits in the nave of First Mount Calvary Baptist Church, waiting for food-bank vegetables and talking about being newly out of jail, lacking identification and trying to qualify for Medicaid.

Police arrested Freddie Gray, 25, five blocks from the church last April, allegedly for carrying an illegal switchblade. He died of spinal injuries that prosecutors filing manslaughter charges blamed on police.

Western District police station, where officers removed Gray’s unconscious body from a prisoner van and protesters surged a week later, is a block south.

“I think I have diabetes,” said Johnson. “I know I have high blood pressure. I know that. I get dizzy a lot, especially when I wake up in the morning. I need to see a doctor.”

Months To Qualify For Medicaid

But he can’t. Baltimore jail authorities lost his identification cards, he said, before releasing him in October from an 11-month stay related to a drug arrest. He spent weeks reapplying for a Motor Vehicle Administration identification card, which social workers said he needed to qualify for Medicaid.

“You need ID to get ID, you know?” he joked. Nobody told him he could use incarceration credentials to qualify.

Medicaid’s expansion to include low-income adults was seen as an unprecedented opportunity to cover former inmates such as Johnson as they rejoin the community. (Inmates are not usually eligible while incarcerated.)

But limited administrative resources and a pile of other paperwork for release planning means sign-ups are often limited to the most severely ill, said Lena Hershkovitz, a vice president with HealthCare Access Maryland, a nonprofit working to increase enrollment.

“I know for a fact that he’s not unusual,” she said of Johnson. “I would say the majority of people leaving the prison or detention system are leaving without Medicaid.”

Communication barriers and “poor customer service” are also barriers to care in West Baltimore, according to a 2012 report by John Snow Inc., a Boston consultant hired by an association of community health centers.

William Ferebee, 66, has obstructive lung disease and a stent implanted after a 2001 heart attack. He avoids doctors at a University of Maryland Medical Center clinic because “they don’t even really come look at me,” he said. Instead, they give orders to a nurse or resident, “and then he comes in and says, ‘OK, here’s what we’re going to do.’ “

A doctor at a nearby, independent clinic “is a sweetheart,” he said. “But it’s so hard to get an appointment.”

Fear of legal consequences also keeps people away from the health system. Some men worry doctors will report their undocumented address to social services, which they believe could reduce aid for female partners who live with them, said Wilson, the New Song pastor.

Medical privacy laws allow hospitals and clinics to help law enforcement officials trace suspects and fugitives. Residents subject to outstanding warrants fear they’ll be arrested if they seek care.

“Some people got a case out there — they’re not going to the health clinic,” Wilson said. “They’re going to die without giving up their information.”

Even when patients get access, care is disrupted by physician turnover, poor follow-up or insurance companies’ changing medical networks.

“The system is fragmented,” said Debbie Rock, who has run LIGHT Health and Wellness, on Sandtown’s western edge, since the 1990s. “I think that people need to go back and talk to each other. I think the doctors and the health insurance companies need to sit down and listen to each other.”

One homeless West Baltimore patient left an oral surgeon’s office with a wired jaw and no way to pay for the liquid nutrition he needed to feed himself, said Carol Marsiglia, senior vice president at the Coordinating Center, a nonprofit consulting organization that is working to reduce readmissions and emergency visits in the neighborhood.

A home-oxygen company wouldn’t serve a discharged lung patient because he had a $27 balance, she said. A hospital directed two home-health companies to teach a patient how to deal with a new colostomy bag; neither showed up. The Coordinating Center fixed the breakdowns.

Poverty makes Sandtown’s health worse. Many say poverty causes Sandtown’s poor health.

Four Liquor Stores And Three Sub Shops

Many residents hold jobs in government or manufacturing, run churches or collect pensions from the military or Social Security. Even so, the median Sandtown household income in 2011 was $22,000.

Roofs leak. Mold and mildew grow. Baltimore Gas and Electric cuts off energy to Sandtown households for nonpayment at twice the rate it does in the rest of the city. Lead paint violations like the kind that allegedly poisoned Freddie Gray are nearly four times higher in Sandtown than in Baltimore as a whole.

Drug and alcohol use are common. Diets are often poor. Many lack cars and the nearest supermarket is more than a mile away from the church.

“If we walk around this block, we’ll pass four liquor stores and three sub shops,” said Derrick DeWitt, pastor of First Mount Calvary, on Fulton Avenue.

Even small copayments required by many health plans dissuade low-income West Baltimore residents from seeking care, the John Snow report found. Some constantly switch doctors to find the lowest price, leading to “disjointed services” and potential harm if information falls in the cracks, it found.

“I change doctors like I change underwear,” said Eddie Reaves, 64, who tries to find practices that won’t charge him copays as little as $12 or $15. His income is $1,170 a month, he said. In 2014, he added, “I must have seen a good total of about 10 doctors.”

Reaves has diabetes and high blood pressure. He’s on Medicare because of a disability. He has applied twice to Medicaid since the health law expanded coverage two years ago. That would improve his benefits. But he never received the paperwork, he said.

The best care he ever received, Reaves said, was when he didn’t need an insurance card — when he was homeless.

Health Care for the Homeless, a nonprofit a couple miles east of Sandtown, delivers comprehensive services to the homeless without regard for ability to pay.

“Didn’t have no bills,” Reaves said of the clinic when he used it a few years ago. “Your medicine they helped pay for. They did a lot for you. You could get your teeth done and everything. It was just great, man.”

The rest of the medical system is so unsatisfactory by comparison that low-income Baltimoreans sometimes claim to be homeless when they’re not, just to use the clinic, he said.

What happened after a 2004 car accident that broke Robert Peace’s pelvis is a glaring example of what many say is the kind of medicine that has been practiced too long in West Baltimore and what many say they are working to change.

Emergency surgery at UMMC fixed the fracture. But Peace developed a persistent bone infection. He received little or no follow-up care, he said, getting treatment only when the infection surged out of control and required repeated, expensive surgeries.

“The pain would be so intense — it’s like, wracking my body. I would literally sit there and shake,” he said. “That’s when I would know I had to go to the hospital, because I knew the infection was back.”

He said he required five more surgeries over a year and a half — the kind of return trips to the hospital, or readmissions, the health industry and the Affordable Care Act of 2010 are trying to reduce by promoting coordination between hospitals and community doctors.

“I’m blaming it on the follow-up,” said Peace, 58. “They knew the infection wasn’t going away, but the only time they would really tend to it was when I was in the hospital.”

Today Peace walks with a cane and a pronounced limp.

It’s a story that’s still too common in West Baltimore, said Antoine Bennett, a lifelong Sandtown resident and an elder at New Song Community Church.

“We’ve got a joke here, but it’s a serious joke,” he said. “If they ain’t medicating, they’re amputating or operating. But what’s missing is the care. Primary care.”

When asked about Peace’s case, UMMC spokesman Michael Schwartzberg said, “Much has changed in the Maryland hospital environment” since his surgeries. Improvements include new emphasis on preventing readmissions and “significant investment” in care coordinators and other post-discharge management, he said.

Keeping People Healthy And Out Of The Hospital

By many accounts, hospitals, doctors, health plans and governments in Annapolis, Maryland’s capital, and Washington are making unprecedented efforts to bridge the medical divide with Sandtown and the rest of low-income Baltimore.

The grand idea is to save money and simultaneously improve lives by keeping people healthier in the community instead of letting them become ill enough to land in the hospital.

Maryland undertook an ambitious overhaul of hospital reimbursement, made possible by the federal health law, that is supposed to back that philosophy with powerful incentives. Starting in 2014, hospitals have been assigned annual budgets for all government and private payers, instead of being paid per admission or treatment.

The idea is to boost their motivation to contain costs by delivering preventive, community care — to pay them for keeping people out of the hospital. Hospitals are also getting penalized for excessive readmissions and preventable harm such as infections and accidental punctures.

In October Bon Secours bought a nearby church that it intends to turn into a primary care and wellness center. UMMC and Bon Secours are working with “transition coaches” from the Coordinating Center to make sure people leaving the hospitals take medicine and schedule follow-up appointments. UMMC’s transition clinic serves hundreds of recently discharged patients.

Maryland is developing one of the most advanced electronic networks for letting medical providers collaborate by sharing patient records. Health Care for the Homeless has opened a clinic in Bon Secours.

Dr. Samuel Ross, Bon Secours’ CEO, talks about working more closely with the churches and continuing to improve the hospital’s outcomes and reputation.

“No, it’s not solved,” he said. “We need to keep doing what we’re doing, and understand that some of this is a person at a time. There is no wholesale campaign or branding message that’s going to cause people to say, ‘You’re wonderful.'”

In 2012 Maryland’s legislature created “health enterprise zones” to increase the supply of primary caregivers in West Baltimore and other underserved areas. UMMC puts emergency room patients in touch with a primary care doctor if they don’t have one.

In September hospitals proposed taxing insurance companies, employers and other payers so they could hire up to 1,000 caregivers directly from West Baltimore and other low-income communities with poor health results.

The Baltimore health department is pressing hospitals to collaborate on high-risk patients and is building ties with lower-income neighborhoods by hiring residents, said Dr. Leana Wen, the city’s health commissioner.

Baltimore’s B’more for Healthy Babies program has reduced the city’s African-American infant mortality rate by nearly a third since 2009, to 12.8 per thousand births. But that’s still a fifth higher than the rate for all of Maryland.

UMMC has workshops and internships for high schoolers interested in health careers. The University of Maryland, Baltimore, got a federal grant to mentor and train West Baltimore middle schoolers to increase the number of African-Americans in health care jobs.

More and more professionals echo UMB’s Perman, who said a medical professional’s duty to patients does not end at the hospital or clinic door.

“As a profession, as an industry, we have not sufficiently appreciated, let alone done something about, the impact of social determinants” such as poverty, poor housing, lack of food choices and low education, he said. “Guys like me and gals like me can easily say, ‘I made the correct diagnosis. I wrote a proper prescription. I’m done.’ What I say to my students is, if you think you’re done — if ‘done’ means the patient is going to get better — you’re fooling yourself.”

Poor people, however, know that between ambitions and accomplishments is a chasm of disappointment.

In the face of wider primary care shortages and the difficulty for doctors to make a living in low-income neighborhoods, the zone fell far short of its original goal of adding 48 primary care professionals to West Baltimore.

“Some of the goals and objectives across almost all of the zones were a bit ambitious,” said Maura Dwyer, a senior policy advisor for the Maryland Department of Health and Mental Hygiene.

In 2014 People’s Community Health Center closed three nonprofit clinics for low-income patients in Baltimore and later entered bankruptcy proceedings, demonstrating the difficulty.

Officials at Total Health Care, a federally supported nonprofit with several primary care clinics near Sandtown, say they are proud of their service to West Baltimore.

“We want to bring the standard health in this neighborhood up to national standards,” Dr. Marcia Cort, Total’s chief medical officer, told students from the Merrill College. “We don’t want it to be the neighborhood and area [where] life expectancy is low and people are dying from preventable things.”

Still, she said, “Baltimore City is in a health crisis.”

Readmission rates for Bon Secours were still the highest in the state in 2014, although the Coordinating Center’s transition coaches helped reduce them by 14 percent from the year before.

But state financing to pay for the transition coaches expires at the end of March. The Coordinating Center is optimistic it will be renewed but nothing is set, Marsiglia said.

In 2014 only 37 percent of surveyed Bon Secours patients “strongly agreed” that they understood their care after they left the hospital. Many resent that it took this long for the industry to try the very solutions — improving primary care, giving communities resources to help themselves — that residents of neighborhoods like Sandtown have been advocating for years.

“Unfortunately the hospitals didn’t hear us,” said Diane Bell-McKoy, CEO of Associated Black Charities, a Maryland nonprofit. “As a person of color giving that information — most people think we don’t know what we’re talking about.”

Distrust of the system, still more widespread than medical officials imagine, is passing to a new generation, residents say.

“It’s a culture that has come about over time, because younger people have seen or feel like their parents and their grandparents didn’t get the best medical treatment when they went to the hospital,” said First Mount Calvary’s DeWitt. “So they have this why-go attitude.”

On Dec. 9, Maryland regulators shrank funding by two-thirds for the proposal made three months earlier to create hospital jobs in poorer neighborhoods.

Other initiatives do little to address the low incomes and unemployment linked to Sandtown’s poor health. Nor do they simplify the shifting maze of private and government insurance plans and hospital and doctor networks that patients must navigate to get care.

One example: Nearly 2,000 low-income Medicaid members, including many in Sandtown and nearby, had to change coverage in August or get new doctors because insurer UnitedHealthcare dropped University of Maryland Faculty Physicians from its Medicaid network in a contract dispute, said Shannon McMahon, deputy secretary of the Maryland Department of Health and Mental Hygiene.

United “had thorough continuity of care measures in place before the contract ended to ensure ongoing care was not disrupted,” said company spokesman Ben Goldstein.

For many residents, enrolling in a plan is too complicated and time-consuming, requiring time off from work to get coverage they don’t understand and can’t afford, said LIGHT Health’s Rock. In some ways the health law and its new coverage rules have made things more complex, she said.

“As the landscape is changing, people really just don’t know what to do,” she said. “They sit you down with somebody that’s supposed to help you fill [an insurance application] out, which is like a Charlie Brown episode. Once you start on the second page it’s like ‘Wah, wah, wah.’ You don’t hear nothing else. You walk out and it’s like, ‘What happened?'”

David Johnson, who was concerned about his blood pressure, dizziness and possible diabetes, joined Medicaid in December. It took two months, three trips to the motor vehicle bureau to get a new ID and two trips to social services to enroll.

An estimated 133,000 eligible but uninsured Marylanders still hadn’t signed up for Medicaid as of October. As of early February, Eddie Reaves, the man with diabetes who gave up applying after his second attempt, was still among them.

This story is part of a reporting partnership between Kaiser Health News and University of Maryland College Park’s Philip Merrill College of Journalism, which operates Capital News Service. Kaiser’s Jay Hancock and students from the school are examining how Baltimore’s respected health system serves the community where violence flared in April after Freddie Gray was fatally injured in police custody. To see all the students’ work go to the CNS website.

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