For more than a year, NeDina Brocks-Capla avoided one room in her large, brightly colored San Francisco house — the bathroom on the second floor.

“It was really hard to bathe in here, and I found myself not wanting to touch the walls,” she explains. The bathroom is where Brocks-Capla’s son Kareem Jones died in 2013 at age 36 from sickle cell disease.

It’s not just the loss of her son that upsets Brocks-Capla. She believes that if Jones had gotten the proper medical care, he might still be alive today.

Sickle cell disease is an inherited disorder that causes some red blood cells to bend into a crescent shape. The misshapen, inflexible cells clog the blood vessels, preventing blood from circulating oxygen properly, which can cause chronic pain, organ failure and stroke.

About 100,000 people in the United States have sickle cell disease, and most of them are African-American.

Patients and experts alike say it’s no surprise then that while life expectancy for almost every major malady is improving, patients with sickle cell disease can expect to die younger than they did more than 20 years ago. In 1994, life expectancy for sickle cell patients was 42 for men and 48 for women. A 2013 study found that life expectancy had dipped to 38 for men and 42 for women in 2005.

Sickle cell disease is “a microcosm of how issues of race, ethnicity and identity come into conflict with issues of health care,” says Keith Wailoo, a professor at Princeton University who has written about the history of the disease.

It is also an example of the broader discrimination experienced by African-Americans in the medical system. Nearly a third reported that they have experienced discrimination when going to the doctor, according to a poll by NPR, Robert Wood Johnson Foundation and Harvard T.H. Chan School of Public Health.

“One of the national crises in health care is the care for adult sickle cell,” says researcher and physician Dr. Elliott Vichinsky, who started the sickle cell center at UCSF Benioff Children’s Hospital Oakland in California in 1978. “This group of people can live much longer with the management we have, and they’re dying because we don’t have access to care.”

Indeed, with the proper care, Vichinsky’s center and the handful of other specialty clinics like it across the country have been able to increase life expectancy for sickle cell patients well into their 60s.

Vichinsky’s patient Derek Perkins, 45, knows he has already beaten the odds. He sits in an exam room decorated with cartoon characters at Children’s Hospital Oakland, but this is the adult sickle cell clinic. He has been coming to see Vichinsky since childhood.

“Without the sickle cell clinic here in Oakland, I don’t know what I would do. I don’t know anywhere else I could go,” Perkins says.

When Perkins was 27, he once ended up at a hospital where doctors misdiagnosed his crisis. He went into a coma and was near death before his mother insisted he be transferred.

“Dr. Vichinsky was able to get me here to Children’s Hospital, and he found out what was wrong and within 18 hours — all I needed was an emergency blood transfusion and I was awake,” Perkins recalls.

Kareem Jones lived just across the bay from Perkins, but he had a profoundly different experience.

NeDina Brocks-Capla, who often goes by Brocks, says her son received excellent medical care as a child, but once he turned 18 and aged out of his pediatric program, it felt like falling off a cliff. Jones was sent to a clinic at what is now Zuckerberg San Francisco General Hospital, but it was open only for a half-day once a week. If he was sick any other day, he had two options: Leave a voicemail for a clinic nurse or go to the emergency room. “That’s not comprehensive care — that’s not consistent care for a disease of this type,” says Brocks-Capla.

Brocks-Capla is a retired supervisor at a workers’ compensation firm. She knew how to navigate the health care system, but she couldn’t get her son the care he needed. Like most sickle cell patients, Jones had frequent pain crises. Usually he ended up in the emergency room, where, Brocks-Capla says, the doctors didn’t seem to know much about sickle cell disease.

When she tried to explain her son’s pain to the doctors and nurses, she recalls, “they say have a seat. ‘He can’t have a seat! Can’t you see him?’ “

Studies have found that sickle cell patients have to wait up to 50 percent longer for help in the emergency department than other pain patients. The opioid crisis has made things even worse, Vichinsky adds, as patients in terrible pain are likely to be seen as drug seekers with addiction problems rather than as patients in need.

Despite his illness, Jones fought to have a normal life. He lived with his girlfriend, had a daughter and worked as much as he could between pain crises. He was an avid San Francisco Giants fan.

For years, he took a drug called hydroxyurea, but it had side effects, and after a while, Jones had to stop taking it. “And that was it, because you know there isn’t any other medication out there,” says Brocks-Capla.

Indeed, hydroxyurea, which the Food and Drug Administration first approved in 1967 as a cancer drug, was the only drug on the market to treat sickle cell during Jones’ lifetime. In July, the FDA approved a second drug, Endari, specifically to treat patients with sickle cell disease.

Funding by the federal government and private foundations for the disease pales in comparison to those for other disorders. Cystic fibrosis offers a good comparison. It is another inherited disorder that requires complex care but most often occurs in Caucasians. Cystic fibrosis gets seven to 11 times more funding per patient than sickle cell disease, according to a 2013 study in thejournal Blood. From 2010 to 2013 alone, the FDA approved five new drugs for the treatment of cystic fibrosis.

“There’s no question in my mind that class and color are major factors in impairing their survival. Without question,” Vichinsky says of sickle cell patients. “The death rate is increasing. The quality of care is going down.”

Without a new medication, Jones got progressively worse. At 36, his kidneys began to fail, and he had to go on dialysis. He ended up in the hospital with the worst pain of his life. The doctors stabilized him and gave him pain medicine but didn’t diagnose the underlying cause of the crisis. He was released to his mother’s care, still in excruciating pain.

At home, Brocks-Capla ran a warm bath to try to soothe his pain and went downstairs to get him a change of clothes.

“As I’m coming up the stairs, I hear this banging,” she says. “So I run into the bathroom, and he’s having a seizure. And I didn’t know what to do. I was like, ‘Oh come on, come on. Don’t do this. Don’t do this to me.’ “

She called 911. The paramedics came but couldn’t revive him. “He died here with me,” she says.

It turned out Jones had a series of small strokes. His organs were in failure, something Brocks-Capla says the hospital missed. She believes his death could have been prevented with consistent care — the kind he got as a child. Vichinsky thinks she is probably right.

“I would say 40 percent or more of the deaths I’ve had recently have been preventable — I mean totally preventable,” he says, but he got to the cases too late. “It makes me so angry. I’ve spent my life trying to help these people, and the harder part is you can change this — this isn’t a knowledge issue. It’s an access issue.”

Vichinsky’s center and others like it have made major advances in screening patients for the early signs of organ failure and intervening to prevent death. Patients at these clinics live two decades longer than the average sickle cell patient.

Good care for sickle cell requires time and training for physicians, but it often doesn’t pay well because many patients are on Medicaid or other government insurance programs. The result is that most adult sickle cell patients still struggle to access treatments that have been around for decades, Vichinsky says.

The phenomenon is nothing new — the disease that used to be known as sickle cell anemia has had a long and sordid past. It was first identified in 1910 and helped launch the field of molecular biology. But most of the research was used to study science rather than improving care for sickle cell patients, Vichinsky says.

In the 1960s and ’70s, sickle cell became a lightning rod for the civil rights movement. At the time, the average patient died before age 20. The Black Panther Party took up the cause and began testing people at their “survival conferences” across the country.

“I’m sure we tested over four-and-a-half-thousand people for sickle cell anemia last night — and I think that the voter registration is running neck and neck with it,” Black Panther Party Chairman Bobby Seale told news crews at an event in Oakland in 1972.

The movement grew, and Washington listened. “It is a sad and shameful fact that the causes of this disease have been largely neglected throughout our history,” President Richard Nixon told Congress in 1971. “We cannot rewrite this record of neglect, but we can reverse it. To this end, this administration is increasing its budget for research and treatment of sickle-cell anemia.”

For a while, funding did increase, newborn screening took hold and by the 1990s, life expectancy had doubled, with patients living into their 40s. But over time, funding waned, clinics closed and life expectancy started dropping again.

Vichinsky pushes against that trend for patients like Derek Perkins. The father of four looks healthy and robust, but like most sickle cell patients, he has episodes of extreme pain and has problems with his kidneys, heart, hips and breathing. Keeping him thriving requires regular checkups and constant monitoring for potential problems.

“The program Dr. Vichinsky is running here, I feel I owe my life to [it],” says Perkins. “If it wasn’t for him and the things that he did for me, my family wouldn’t have me.”

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

This story is part of an ongoing series, “You, Me and Them: Experiencing Discrimination in America.” The series is based in part on a pollby NPR, the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health. We will be releasing results from other groups — including Latinos, whites, Asian-Americans, Native Americans and LGBTQ adults — over the next several weeks.

Let’s block ads! (Why?)

The University of Notre Dame will no longer provide birth control coverage to students and employees, taking advantage of the Trump administration’s decision to weaken the Affordable Care Act’s birth control mandate.

As Indiana Public Media notes, the Catholic university previously “made the coverage available through a third-party service separate from the rest of its health insurance and attempted to sue for the right to not offer the coverage at all.”

That lawsuit, against the Obama administration, was unsuccessful.

But last month, the Trump administration rolled back the requirement, allowing any company or nonprofit to refuse to cover contraception based on a moral or religious objection.

That policy change allowed Notre Dame to opt out of providing contraceptive coverage in any form.

Notre Dame is the “first and most important employer publicly to take advantage” of the rollback, The Los Angeles Times reports.

The policy change will kick in for faculty and staff on Dec. 31 and for students on Aug. 14.

The American Civil Liberties Union has a lawsuit pending against the Trump administration’s weakening of the contraceptive mandate. One of the plaintiffs in that case is a Notre Dame student who was anticipating the university would drop its contraceptive coverage, as Indiana Public Media reports:

” ‘The Trump Administration Policy allows Notre Dame to declare a wholesale exemption and to not even allow their insurance company to provide the coverage, so we anticipated that Notre Dame would be revoking contraception coverage if given the opportunity,’ says Brigitte Amiri, an attorney with ACLU’s reproductive freedom project.

“Amiri says even though the university will still provide contraceptives as a treatment for other medical problems, it is still an infringement on a woman’s rights.

” ‘No matter where a woman works or goes to school, she should have coverage for basic health care services like contraceptives regardless of the purpose used for the contraception,’ she says.”

In an email to faculty and staff, which the university shared with NPR, a spokesman wrote that the school “honors the moral teachings of the Catholic Church.”

Let’s block ads! (Why?)

Can a puppy video get you to buy health insurance through the Affordable Care Act exchanges? Florida Blue, a major insurer in that state, hopes the answer is yes.

“It’s hard to resist puppies, right? Let’s just be honest,” says Penny Shaffer, the insurer’s South Florida regional market president, who talked to WLRN’s Sammy Mack. In the video, puppies tumble while the announcer pitches, in Spanish, affordable plans and personalized service.

According to a Commonwealth Fund analysis, Hispanics have seen the biggest increase in number of people insured of any ethnic group since the Affordable Care Act was passed. One zip code in the heart of Cuban Miami saw the most marketplace signups of any zip code in the country a couple of years ago. And market research shows that Latina women are very active video sharers.

Open enrollment for health insurance on the Affordable Care Act exchanges exchanges starts Wednesday. For anywhere from six weeks to a few months, depending on the state, people can buy plans on the individual markets for 2018.

But the Trump administration has cut the ACA advertising budget by 90 percent, as well as money to pay navigators, people who help customers pick a plan and enroll.

So across the country, municipalities, insurers and grassroots organizations are working even harder to to get the word out that the ACA is still in place. That explains the puppies.

California also sees Latinos as a key group for outreach, reports KQED’s April Dembosky. The video strategy of Covered California, that state’s marketplace, is a little different, emphasizing how important insurance is for unexpected illness.

In Phoenix, Ariz., KJZZ’s Will Stone reports that the Arizona Public Interest Research Group is part of a grassroots coalition advertising open enrollment. They are hoping to get younger people to sign up, because younger people tend to be healthier and less expensive and insurance pools need them to help pay for older and sicker people.

But Diane Brown, who heads Arizona PIRG, says consumer confusion over health insurance, complicated enough to wade through on a good day, is exacerbated by the political wrangling over the ACA.

Pennsylvania’s insurance commissioner’s office is spending some of its department’s budget on education, including setting up its own online tool to help guide consumers through how to pick a plan, reports Elana Gordon from WHYY.

And in Tennessee, Blake Farmer of Nashville Public Radio says that even though the navigator budget was cut, it was cut only by 15 percent and the state found enough savings in other places to keep roughly the same numbers.

Moving along to Texas, KUT’s Ashley Lopez finds that in the bigger cities, local taxpayers are filling in the gap. Austin is spending a lot more money this year on outreach efforts. Michelle Tijerina works for Central Health, which provides health care for low-income people in Travis County and is funded by local property taxes.

“We will have ads on radio — English and Spanish. We will be on Facebook. We will have Google ads and banners. We will be out in the community, talking to schools,” Tijenera says.

Tijerina says Central Health is also hiring twice as many people this year to help folks sign up once enrollment starts.

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

Let’s block ads! (Why?)

Forty days after Hurricane Maria struck Puerto Rico, most of the U.S. territory remains without power.

Over the weekend, the island’s power company fired a key contractor working to restore electrical service. The cancellation of the $300 million contract with Whitefish Energy, after the Federal Emergency Management Agency and other agencies expressed significant concerns about the deal, is expected to further delay the return of power throughout Puerto Rico.

The Puerto Rican government has prioritized getting power back to hospitals. Many smaller clinics and doctor’s offices, like other businesses on the island, still don’t have electricity.

Take, for instance, San Patricio Medflix, a diagnostic imaging center in greater San Juan. The center has state-of-the-art MRI, CT and nuclear medicine equipment.

Dr. Fernando Zalduondo Dubner, medical director imaging center, says his biggest job is battling with a heavy-duty diesel generator to keep the power on. “We are having trouble with it now as we speak,” he says.

With Puerto Rico’s electric grid down since Sept. 20, the diesel generator, housed in a metal box the size of a shipping container, has been the sole source of power for his four-story medical complex.

Fuel has been a big problem. The generator consumers about 500 gallons of diesel a day.

In the weeks after the hurricane hit, the diesel supply was incredibly tight. Zalduondo ended up buying whatever fuel he could get from whoever was selling it. But some of it was of such poor quality that it gunked up the generator. “The other day we had to cancel 70 patients that were here because we had to rely 100 percent on the diesel plant, and it just got clogged from all kinds of diesel that had been around,” he says.

For Zalduondo the stakes are higher than keeping the lights on. MRI machines like his need liquid helium to cool their superconducting magnets. If the MRI scanner loses power for very long, the helium overheats and evaporates quickly. If the helium level gets too low, the scanner can be permanently damaged.

Another radiologist in San Juan thought he had all the diesel, helium and other supplies he needed to ride out Hurricane Maria only to have his MRI machine seize up after looters drained his diesel tank. Early on Saturday morning engineers from Siemens, a medical equipment maker, were able to refill the center’s last working MRI machine’s liquid helium.

The hurricane’s winds also opened a crack in the imaging center’s roof that let water pour into much of the top floor. As the crisis has dragged on, some of Zalduondo’s employees have packed up and headed to the mainland.

“Practicing high-end radiology in Puerto Rico is extremely challenging in the best of times,” he says. “It seems like all the conditions conspire to make us radiologists leave Puerto Rico.”

The electric blackout isn’t just affecting high-end medical equipment that requires liquid helium.

Dr. Eduardo Ibarra says the conditions in Puerto Rico, including the lack of power, are killing patients who otherwise would survive.

Ibarra is making house calls to mostly elderly patients in devastated parts of Toa Baja just west of San Juan: “I would say that of the ones I visit, 100 percent don’t have electricity.

That means his patients don’t have air conditioning or even fans to keep cool, a situation which aggravates bedsores for his bedridden patients. A lot of people still don’t have running water, never mind hot water, so sanitation is poor. Their refrigerators aren’t working either, so some medicines are going bad. Some dialysis clinics have shut down, too, forcing patients to search for alternatives.

“Between no light and no water and no money and no help … the patients are getting very sick,” he says.

Even as October draws to a close, power has officially been restored to only 30 percent of customers in Puerto Rico.

On a hillside in Toa Baja, Carmen Garcia Lavoy’s relatives and neighbors are rebuilding her home with hand tools. The hurricane blew the roof and walls out of her house leaving behind a tiled cement slab littered with debris.

Dr. Ibara comes to see Garcia, who is 77. She has a host of medical issues, including high blood pressure. Last year she had open heart surgery. She also can’t see well.

Garcia she’s been very anxious living in the basement of the destroyed house with her son. Dr. Ibarra examines her in the open air of what used to be her living room. As he takes her blood pressure she breaks down crying and says she hasn’t been able to get to a doctor since the storm. “I’ve been dying to speak to my cardiologist and I’ve already cancelled or lost two appointments with him,” Garcia says.

Ibarra writes her a prescription for a blood pressure medicine that she had run out of. Garcia clutches the prescription to her chest as if it’s a treasure.

The official death toll from Hurricane Maria stands at 51, but Ibarra says far more people than that have likely died as a result of the storm. Doctors don’t write “hurricane” as the cause of death on a death certificate, he says, “the physician puts cardiac arrest, respiratory arrest.”

Let’s block ads! (Why?)

Most people can acknowledge that discrimination has an insidious effect on the lives of minorities, even when it’s unintentional. Those effects can include being passed over for jobs for which they are qualified or shut out of housing they can afford. And most people are painfully aware of the tensions between African-Americans and police.

But discrimination can also lead to a less obvious result: tangible, measurable negative effects on health. A new survey conducted by NPR, the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health asked members of different ethnic and racial groups about their experiences with discrimination. Ninety-two percent of African-American respondents said they felt discrimination against African-Americans exists in the United States today, and at least half said they have experienced it themselves at work or when interacting with police.

All of this discrimination can literally be deadly, according to Harvard professor David Williams, who has spent years studying the health effects of discrimination.

He tells NPR’s Michel Martin: “Basically what we have found is that discrimination is a type of stressful life experience that has negative effects on health similar to other kinds of stressful experiences.”

Interview Highlights

On the health problems caused by day-to-day discrimination

The research indicates it is not just the big experiences of discrimination, like being passed over for a job or not getting a promotion that someone felt they might have been entitled to. But the day-to-day little indignities affect health: being treated with less courtesy than others, being treated with less respect than others, receiving poorer service at restaurants or stores. Research finds that persons who score high on those kinds of experiences, if you follow them over time, you see more rapid development of coronary heart disease. Research finds that pregnant women who report high levels of discrimination give birth to babies who are lower in birth weight.

On discrimination at the doctor’s office

Across virtually every medical intervention, from the most simple medical treatments to the most complicated treatments, blacks and other minorities receive poorer-quality care than whites. African-Americans who are college-educated do more poorly in terms of health than whites who are college-educated. And these racial differences in the quality and intensity of care persist for African-Americans irrespective of the quality of insurance that they have, irrespective of their education level, irrespective of their job status, irrespective of the severity of disease.

On how to start combating discrimination

Much of this discrimination that occurs in the health care context, and in other contexts of society, may not even be intentional. There is intentional discrimination, but we think the majority of the discrimination that occurs in the health care context is driven by what we call “implicit bias” or “unconscious unthinking discrimination.”

If I am a normal human being, I am most likely to be prejudiced. Why? Because every society, every culture, every community has in groups and out groups. And if there are some groups that you have been taught — just subtly, as you were raised — to think of negatively, you will treat that person differently when you encounter someone from that group, without any negative intention on your part, even if you possess egalitarian beliefs. That’s why you have to acknowledge that I and everyone else is a part of the human family, and these are normal human processes that occur, and the first step to addressing it is to acknowledge: “It could be me.”

NPR’s digital news intern Jose Olivares produced this story for digital.

Let’s block ads! (Why?)

As deaths from opioid overdoses rise around the country, the city of Baltimore feels the weight of the epidemic.

“I see the impact every single day,” says Leana Wen, the city health commissioner. “We have two people in our city dying from overdose every day.”

As part of Baltimore’s strategy to tackle the problem, Wen issued a blanket prescription for the opioid overdose drug naloxone, which often comes in a nasal spray, to all city residents in 2015.

She says many deaths have been prevented by getting the drug into the hands of more people. But now, there’s a problem:

“We’re out of money for purchasing Narcan [a brand of naloxone]. We’re having to ration this medication,” Wen says.

People can purchase Narcan at pharmacies on their own. As we’ve reported, it’s now sold at all Walgreens. But at a cost of about $125 a pop, many people can’t afford it.

Thursday, the Trump administration declared the opioid crisis a public health emergency, but many critics say it doesn’t go far enough when it comes to funding.

Wen says she would like a commitment from the administration to help pay for this drug. She says the administration could also negotiate directly with manufacturers to lower the price of naloxone. “We know treatment works, but we don’t have [the] money,” Wen says.

Paying for rapid reversal drugs is certainly not the only challenge health officials face in tackling the opioid epidemic.

A recent nationwide study published in the Annals of the American Thoracic Society points toa significant increase in the cost of treating overdose patients who are admitted to hospital intensive care units.

“These are patients who have survived admission [to the hospital] and have significant complications from an overdose,” says study author Jennifer Stevens, a critical care doctor at Beth Israel Deaconess Medical Center. She says complications can include kidney failure and infection. Some patients require a ventilator during hospitalization to support breathing.

Researchers analyzed billing data from more than 150 hospitals in 44 states, and they evaluated all the opioid-associated overdose admissions to ICUs between 2009 and 2015.

The study found a 34 percent increase in overdose-related ICU admissions during that period. And costs rose by almost 60 percent. In 2009, the average cost of care per admission was about $58,000. By 2015, the cost had risen to about $92,000.

In addition, the study points to almost a doubling of deaths among opioid overdose patients in hospital ICUs during the study period.

“It’s a call to arms that everything we’re doing is not enough,” Stevens says.

Stevens says she thinks a lot about the services patients may need once they’re released from the hospital. “They need long-term support,” she says.

Many experts say this must include expanded access to addiction treatment.

“The key to unlocking the opioid crisis is the availability of quality treatment beds,” Gil Kerlikowske, a former drug policy adviser to President Obama, tells us in an email. “We know treatment works and is far less expensive than jail or hospitalization.”

Let’s block ads! (Why?)