28, May 2018
Cameroonian children with sickle-cell disease face death 0
Sitting on a stool outside her wood-plank house in Cameroon, indifferent to the light rain falling, Diane described how she killed her five-year-old “sorcerer” son.
They boy had suffered from episodes of severe pain his whole life, and was weak and thin, she said. As is the custom in the Central African country, she and his father consulted traditional healers known as marabouts about what to do.
“Madam, your child is a sorcerer,” they said. “He came into the world to torture you. He will die one day,” recalled Diane, who asked not to be identified by her real name. The marabouts told her it was useless to seek medical help.
So on a Thursday morning in February last year, at the rooster’s crow, she suffocated her son with an old pillow.
“I kept the pressure on like in movies and he died,” she told the Thomson Reuters Foundation, with no sign of remorse.
“I killed my child because he was going to die anyway. Before, he was suffering greatly. Now he is at peace.”
What the boy really suffered from was sickle-cell disease, a genetic condition that causes abnormally shaped red blood cells and a variety of complications. It can be treated but not cured.
Diane had learned that she and her partner carried the disease trait during a hospital visit with their first child, who died. But she believed the marabouts over the doctors.
“They told us we couldn’t have more children because we would give them the disease. It was false. The marabouts showed us that sickle-cell children came into the world to torture us and spend all our money,” said the frail 32-year-old.
It took seven months for Diane to agree to tell her story, on the condition that her real name and location not be revealed.
Of the 19 people with sickle-cell disease the Thomson Reuters Foundation interviewed for this story, 16 said they were called “sorcerers” and “devils” as children, abandoned by their fathers and subjected to “demystification” rituals that could have killed them.
Eleven mothers said they believed their children were sorcerers.
“In Cameroon, sickle-cell disease is synonymous with discrimination, the disease of shame, something mystical,” said Fernand Tekoua, president of the national association of people with sickle-cell disease.
“It is ingrained in habits and in society. Even the family thinks you are worthless and just waiting for your day to die,” he said.
LIVING DEAD
Sickle-cell disease is most common in Africa, and affects up to two percent of the population in tropical countries such as Cameroon, according to the World Health Organization (WHO).
The main symptoms are pain attacks which can last up to a week, a susceptibility to infections, and anemia, which causes weakness and fatigue. Most children with the most severe form die before the age of five, according to WHO.
Like Diane, other parents interviewed described their children as having been constantly sick since birth.
“Sickle-cell crises are frequent and a week of hospitalization can cost over 200,000 CFA francs ($350). The majority of families don’t even have money to eat,” said Tekoua of the national association.
“The child with sickle-cell disease is thus seen as the one that ruins the family.”
Although there is no evidence that children with sickle-cell disease are regularly murdered in Cameroon, interviews with doctors, patients, and parents suggested that it is possible, and that others die of intentional neglect.
“He’s a monster, he deserves to die,” said one mother in the capital Yaounde of her nine-year-old son. When she found out he had sickle-cell disease two years ago, her partner abandoned her and she never took the boy to the hospital again.
“I wouldn’t shed a tear at the death of this child that separated me from my husband,” she said.
Several people with the disease said their parents would tell them: “Why did I bring you into the world? You shouldn’t be alive. Die and leave us in peace.”
They were referred to as “living dead”, “revenants”, “disciples of the devil” and “guardians of hell”, they said.
Hans Edgar, 24, who is living with the disease, said that his father walked out on the family after refusing to spend a penny on his “sorcerer son”.
His mother then took him to a marabout, who one day put him on a grate over burning coals to rid his body of the bad spirit.
“I was little and I jumped with all the force of desperation to save my skin,” he said. “He wanted to grill me like a chicken.”
PREVENTION
Cameroon’s health ministry estimates that sickle-cell disease is responsible for 16 percent of all deaths of children under five, said Etoundi Mballa, head of the division for diseases and epidemics.
“This is a lot. It’s a really worrying problem,” he said.
In 2014, the first treatment center devoted to the disease was opened in a hospital in Cameroon’s second city Douala. But unlike HIV, tuberculosis and malaria programs, it is not subsidized by the government.
Mballa said the health ministry’s plan for fighting the disease included awareness-raising, free vaccines for certain infections and free iron tablets and antibiotics.
The ministry also recommends that young adults get tested for the trait before marrying and having children, he said.
But people living with the disease said much more must be done to spread correct information and make treatment affordable.
In Douala, those who have survived into adolescence and adulthood meet twice a week to console one another, discuss the future, and share concerns and advice.
To end the disease, they think the government should make blood tests free and mandatory.
“If my parents had done this test, I would not be going around today with this disease that destroyed my life,” said Allan, a 17-year-old student.
“We must give all Cameroonians a chance to save the next generation of children.”
Source: Reuters
3, June 2018
US states resist Trump administration’s bid to replace ObamaCare 0
Some US states are defying the Trump administration’s plans to replace the ObamaCare insurance scheme in their bid to protect the Obama era health care policy and keep their insurance markets stable.
A number of states, including California and Maryland, are making efforts to impose limits on short-term insurance plans, even as the Trump administration intends to expand access to them throughout the country, US news outlets reported Saturday.
According to the reports, the states are taking the measure out of concerns that the availability of the newly-prescribed short-term plans will drive up premium costs for ObamaCare.
This is while northeastern states of Vermont and New Jersey have already passed state laws that require their residents to purchase health insurance. These individual mandate laws are aimed at replacing the now-repealed federal requirement.
Advocacy groups and state authorities backing such measures further underline that the states are seeking to protect advances made under ObamaCare from harassment by the Trump administration, which tried to repeal and replace the law and, failing that, initiated efforts to chip away at it.
High costs are reportedly the major incentive behind the efforts by the largely Democratic states.
The administration proposed rules back in February that would allow people to purchase short-term health insurance for up to 12 months, lifting restrictions from the Obama administration that limited the coverage to a maximum of three months.
The short-term plans don’t need to meet ObamaCare’s consumer protections, so they would potentially be much cheaper than a traditional plan. But people with pre-existing conditions can be charged more.
The cost of health insurance premiums on the ObamaCare exchanges is expected to climb in the coming weeks and months. Several states may face major double-digit hikes next year.
The high costs are blamed on measures the Trump administration has taken that could cut into ObamaCare’s enrollment.
“There’s been a series of actions taken by the current administration that have undermined enrollment,” said president and CEO of CareFirst BlueCross BlueShield, Chet Burrell, as he declared a potential 26-percent premium rise for next year in the state of Maryland.
Meanwhile, California also passed a bill that would completely ban the sale of short-term plans beginning in 2019, though it has yet to be signed into law.
Moreover, Hawaii lawmakers passed a bill that would essentially eliminate the state’s short-term health plan market by prohibiting their sale to anyone eligible for a plan on the ObamaCare exchange. That bill is also pending the governor’s signature.
Source: Presstv