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Widowed father works with congresswoman on legislation to prevent maternal deaths

Sitting in the hospital room, mother and newborn baby were sound asleep.

“I was overjoyed. I reme..

Sitting in the hospital room, mother and newborn baby were sound asleep.

"I was overjoyed. I remember thinking my family is complete," Charles Johnson told ABC News.

But then he looked down and saw his wife Kiras catheter turn pink and then red with blood.

April 12, 2016 was supposed to be a joyous day for the Johnson family, but it turned into a "nightmare."

Ten hours later, Kira Johnson died as a result of internal bleeding following a cesarean section.

Now, two years later, Johnson is raising two children on his own and advocating to rectify the country's maternal health policies and regulations to prevent anyone else from sharing the same tragedy. Johnson took to Capitol Hill to share his wife's story before members of Congress, working alongside a congresswoman who experienced her own personal difficulties during pregnancy.

Charles and Kira Johnson welcomed their first son Charles V. in 2014. He was delivered via C-section. Two years later, the Johnson family relocated from Atlanta to Los Angeles and learned they were expecting their second baby boy.

"Kira and I had always wanted two boys," Johnson said. "I was excited."

The Johnsons decided to have Langston delivered at Cedars Sinai medical center, a non-profit hospital that is currently ranked as the eighth best hospital in the country by U.S. News and World Report.

Charles Johnson said his wife was in exceptional health and that she took all the necessary prenatal measures to ensure their second child would be born healthy. Since their first son was born via C-section, the doctor suggested the same for their second.

The Johnsons arrived at Cedars Sinai at 2 p.m. that day for Kiras scheduled surgery. The C-section was a success and Langston was born without incident.

As his sleeping wife's catheter, which is a tube inserted in the bladder to drain urine, began to fill with blood, he alerted the nurses. It was 5:34 p.m. and a resident physician was called by a nurse, according to Johnson and medical records released by Cedars Sinai. At 6:44 p.m., a CT scan was ordered for a "surgical emergency."

Four hours later, the CT scan still had not been completed. Doctors had performed ultrasounds which showed her hematoma had enlarged, according to medical records.

Doctors came into the room and left, but Johnson said he doesn't remember them doing anything to help his wife. He said she was in more pain than she exhibited.

"Kira was such a strong woman, she always tried to put on a brave face," Johnson said.

About ten hours after reporting the blood in her catheter, Kira was taken to a procedure room. Johnson was told his wife would be back in 15 minutes.

"Baby Im scared," Kira said holding her husband's hand.

He sat waiting in an isolated waiting room, listening to a vacuum roar as a custodian worked nearby.

After waiting patiently for 15 minutes, two residents walked into the room.

"Mr. Charles we need you to have a seat," Johnson recalled one of them saying.

There had been heavy internal bleeding, she flatlined and her situation was critical.

The residents informed Johnson they found 3 1/2 liters of blood in Kira's abdomen.

"But we're continuing to work on her," he was told.

He urged them to save his wife. Before he'd fully processed the dire situation, a doctor he'd never met before came out to tell him his wife had died.

Kira Johnson's death is not unique.

Pregnancy-related deaths have increased from 7.2 per 100,000 live births in 1987 to 18 deaths per 100,000 live births in 2014, according to research cited in H.R. 1318. The United States is ranked 50th globally for its maternal mortality rate and is one of eight countries in which the mortality rate has increased.

Research in the bill also states that women of color, in particular, are at a higher risk than others of dying from pregnancy complications.

The Center for Disease Control and Prevention cites an abnormally significant ratio difference in pregnancy-related mortality rates by race. Black women are three to four times more likely to die from pregnancy-related issues than white women. During 2011-2014, the CDC reported "considerably racial disparities in pregnancy-related mortality exist" in its findings of 12.4 deaths per 100,000 live births for white women compared to the 40 deaths per 100,000 live births for black women.

Separately, the Brookings Institution conducted a study showing the most prevalent racial disparities within America's middle class and determined that black mothers with advanced professional degrees, such as a master's degree or higher, have a higher chance of infant mortality compared to white women whose highest education level is the 8th grade.

The causes of the gap remains unclear, but the National Academies of Sciences Engineering and Medicine found it may be due to the way healthcare systems are organized and operated. Healthcare providers' biases, prejudices and uncertainty when treating minorities could also contribute to healthcare disparities. The study also claims patients' attitudes and behaviors play a role. A small percentage of minority patients do not trust health care professionals, according to NASEM.

U.S. Rep. Jaime Herrera Beutler, R-Washington, who experienced pregnancy complications of her own, sponsored H.R. 1318, the Preventing Maternal Death Act of 2018.

In 2012, Herrera Beutler and her husband discovered they were expecting their first child — only to be told their unborn child had Potter Syndrome, a rare disease that occurs when there is a critical lack of amniotic fluid surrounding a baby while in the uterus. It prevents the baby's kidney development, according to the National Institutes of Health.

They were told by doctors the disease was 100 percent fatal, but despite the prognosis, Herrera Beutler underwent an experimental treatment in which saline was injected to replace the amniotic fluid and help develop their unborn child's lungs.

"As she dug more into the issue, she was saddened to learn that this crisis impacts women of color and women in rural areas even more acutely, and she redoubled her effort to get this across the finish line," Herrera Beutlers communication director Angeline Riesterer told ABC News in a statement.

The bill requires the Department of Health and Human Services to provide grants to all 50 states to establish state-based maternal mortality review committees to determine why women are dying from pregnancy-related deaths. The bill also ensures that the state department of health develops a plan for ongoing health care provider education in order to improve the quality of maternal care, disseminate findings and provide disclosure information in state reports for the public.

Johnson, who created 4Kira4Moms, in honor of his wife and to advocate for improved maternal health policies and regulations, has worked with Herrera Beutler on the issue.

"When I spoke about Kiras story in front of Congress members, multiple members of Congress on both sides of the aisle were in tears," Johnson said. "Some members who werent even able to meet with me in times past, signed onto the bill a week later after my testimony."

The bill became law in December when the president signed it.

"Myself, an African American male from the deep South came together with a white Republican woman from Washington," Johnson said. "We worked together to make this what it truly is — a human rights issue.

"This affects all women. I was proud the congresswoman stood shoulder to shoulder with me without backing away from acknowledging racial disparities within these stats. The fact we do come from such different worlds makes it all the better. This is a true bipartisan effort."

Johnson credited his wife as his motivation to move forward with his life, raising their two sons. He said she was an independent woman with "contagious energy."

"I made eye contact with this beautiful woman who was standing by the front door with her arms folded," Johnson said remembering when they first met at a party in 2005. "Frankie Beverly's 'Before I Let you go' played in the background. As I was leaving the party, I stepped out of my comfort zone and sang to her, 'Before I let you go, oh, I would never, never, never…'"

Kira, who had looked exasperated, couldn't help but smile. From there, they developed a close friendship and eventually a romantic relationship. They married in 2012.

Johnson said she was someone who "challenged him in every aspect of his life." After she died, that didn't change. He was inspired to try to prevent other families from experiencing the same tragedy.

"I thought I had a big heart until I met her — she was just different," Johnson said. "She made my life full and complete."

Original Article

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The organization helping to bring new drugs for rare diseases to market

A research team has reason to celebrate after the Food and Drug Administration granted it approval o..

A research team has reason to celebrate after the Food and Drug Administration granted it approval on Friday to begin a clinical trial for a new pediatric brain cancer drug, one that might have ended up overlooked by pharmaceutical companies.

The lead researcher on the team, Dr. Teresa Purzner has already beat impossible odds. The neurosurgeon and mom of three managed to get the approval in record time and with little money thanks to the help of a team of scientific altruists called SPARK.

The development of new medications in the United States is driven by pharmaceutical companies; researchers at universities rarely bring their discoveries to the bedside. For every 10,000 potential new medicines sitting on laboratory shelves around the country, only one will ever reach patients in need, according to the National Institutes of Health. Why? Because the process can take 10 to 15 years, costing upwards of a billion dollars per drug.

As a result, the number of new medications approved by the FDA has remained stagnant at about 31 per year over the past 10 years. The majority of these medications are similar to already existing ones, and many target diseases for which there are large markets — like hypertension and high cholesterol — and therefore, a return on investment.

Enter SPARK, a non-profit program created in partnership between Stanford University and volunteers from the biotechnology, pharmaceutical, and investment industries, which helps academic researchers bring their discoveries to patients. Since its founding, SPARK has given special consideration to projects typically neglected by pharmaceutical companies, including rare diseases and diseases affecting children.

Purzner put her neurosurgery practice on pause to study medulloblastoma, a type of childhood brain cancer. Compared to diseases like hypertension and high cholesterol, which affect millions of Americans, medulloblastoma is rare, affecting only 250 to 500 children every year.

“Theres something especially poignant about seeing children —beautiful, wonderful, innocent things — and seeing the impact of the therapies we are giving them. The medications, the radiation therapies impact their cognition, their quality of life and their ability to function as independent adults in the future,” Purzner said in an interview with ABC News.

Purzner had a clear goal: to find a targeted therapy that could shut down the basic biochemical pathway responsible for the development of this cancer, and she did. She tested the potential drug in mice with good results, and she just received FDA approval to test it in clinical trials, which she will do through the Pediatric Brain Tumor Consortium. She did it all in five years and for a price tag of $500,000.

“To get from my initial findings in the lab to the point where the Pediatric Brain Tumor Consortium picked it up for clinical trials would have never happened without the help of SPARK… they gave me a clear pathway and made me believe it was possible,” said Purzner.

Every year, SPARK provides 10 teams with funding and expert mentorship to promote efficient and cost-effective drug development. (more…)

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States look to breathalyze convicted drunk drivers to reduce fatalities

This story is from Kaiser Health News

On Jan. 1, California joined the majority of states that ha..

This story is from Kaiser Health News

On Jan. 1, California joined the majority of states that have laws requiring drivers with drunken-driving convictions to install breathalyzers in vehicles they own or operate.

Researchers, public health advocates and political leaders believe these laws are helping reduce alcohol-related road deaths.

The gadgets, known as ignition interlock devices, are mounted on the steering wheel of a vehicle and prevent it from starting if the drivers blood-alcohol reading is above a predetermined level.

In California, the breathalyzers are mandatory only for repeat offenders. Five other states — Georgia, Indiana, Massachusetts, Montana and Ohio — have similar laws. Thirty-two states and D.C. require the devices even for first-time offenders.

The advent of such laws across the United States in the past 15 years has been accompanied by some good news: Deaths involving drunken driving are only about half of what they were in the early 1980s, though they have ticked back up in recent years. The long-term decline is largely attributable to greater public awareness, stricter seat belt enforcement and the establishment in 2000 of a nationwide legal blood-alcohol threshold of 0.08 percent — far below the 0.15 percent standard commonly used before then.

State Sen. Jerry Hill (D-San Mateo), the author of the California law, said breathalyzers in cars will make roads safer than under the current law, which generally relies on license restrictions and suspensions.

“Weve seen people on a suspended license continue to drive and continue to cause destruction,” said Hill, who lost his best friend to drunken driving in the 1980s.

There is some evidence that the breathalyzers have an impact. Nationally, from 2006 to 2016, ignition-locking breathalyzers prevented 2.3 million attempts to drive by people with a blood-alcohol level at or above 0.08 percent — the legal threshold for driving under the influence — according to a 2017 report by the advocacy group Mothers Against Drunk Driving.

Emma McGinty, an associate professor at the Johns Hopkins Bloomberg School of Public Health, found that laws requiring interlocks for all DUI offenders were associated with a 7 percent drop in the rate of fatal crashes caused by drunken drivers. Another study found that laws covering all offenders were associated with 15 percent fewer alcohol-related fatalities compared with states that have less stringent laws. (more…)

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NHS long-term plan: Non-hospital care to get biggest funding rise

GPs, mental health and community care are the services to get the biggest increases in funding as pa..

GPs, mental health and community care are the services to get the biggest increases in funding as part of a new long-term plan to overhaul the NHS.

The aim is to curb the reliance on hospitals, which will get a smaller cut of the budget as health chiefs overhaul the way the service works in England.

NHS bosses say it will kick-start a greater focus on preventing ill-health – and could save up to 500,000 lives.

But senior doctors said hospitals were facing a "near-on impossible task".

Society of Acute Medicine president Dr Nick Scriven said he was "staggered" by the plans given the problems facing hospitals.

Many trusts are missing all three key waiting time targets for A&E, cancer care and routine operations, and are struggling to balance the books.

If you can't see the NHS Tracker, click or tap here.

The full details of the 10-year plan are to be unveiled later by NHS England chief executive Simon Stevens and Prime Minister Theresa May.

But ahead of the publication, NHS England confirmed a third of the extra £20bn the NHS will get in 2023 will go on GPs, community care and mental health.

Currently they account for less than a quarter of spending, while hospitals take up around half of the £114bn frontline budget. (more…)

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