The Genotype Test Bill: An attempt to curb Sickle Cell Disease in Nigeria?

The Genotype Test Bill: An attempt to curb Sickle Cell Disease in Nigeria?

Sickle Cell Disease is one of the most prevalent public health issues in Nigeria, which is known to have the greatest number of sickle cell disease patients per country in the world.

The American Centre for Disease Control and Prevention (CDC) states that, “Slightly above 300,000 babies globally are born with severe sickle cell disease. Seventy-five percent of that number, 225,000, are born in Sub-Saharan Africa. Nigeria carries 66% of the burden in Sub-Saharan Africa, with a total of 150,000 babies born with severe sickle cell disease annually. Nigeria also bears 50% of the global burden.” This means that, globally, for every two babies born with the sickle cell disease, one is a Nigerian.

Two Nigerian senators are sponsoring a bill that would make it mandatory for couples to get genotype testing before they can get married, and before new births can be registered. The bill has passed the second reading, and is scheduled for public hearing.

            
Senators Ogembe (at bottom) and Omo-Agege (at up), who sponsored the Compulsory Haemoglobin-Genotype Screening Test Bill

Sponsored by Senator Ahmed Salau Ogembe (Kogi Central) and co-sponsored by Senator Ovie Omo-Agege (Delta Central), the bill is titled, “The Compulsory Haemoglobin-Genotype Screening Test” Bill. According to the bill’s sponsors, its objectives are threefold; to establish a clear legislative framework for effective management of sickle cell disease; to avoid human anxieties, pains and deaths associated with the disease and; to improve the lives of citizens who live with it.

Sickle–Cell Disease (SCD) is a genetic disorder that affects the haemoglobin within the red blood cells. It causes recurrent pains and complications that interfere with many aspects of a patient’s life including education, employment and psychological development. It is a life-long illness, meaning that a person with SCD will likely suffer its complications and recurrent pain for life. These effects are more manifest and often more severe when the condition is not properly managed.

Research has shown that only 5% of children born with SCD live past the age of 10 in Nigeria. In parts of the world where care is available for the condition, such as the United States, the life expectancy of a person with SCD is 40 – 60 years. This was not always the case. For instance, in 1973, the life expectancy of a SCD patient in the US was 14 years. What seems to have made the difference in that system is legislation making genotype testing compulsory, as well as SCD management programmes.

Senator Ogembe pointed out at the second reading of the bill that, “Every State in the U.S.A and the District of Columbia require that every baby is tested for SCD as part of their new-born screening program. Ghana and Togo also have screening programs for new-born babies.”

He said the heart of the bill was to address the prevalence of SCD in Nigeria. “This Bill is a direct response to Sickle Cell Disease, a disease that is no respecter of status and position,” he said, adding, “When it comes into a poor home, it worsens their plight; and when it comes into a rich home, aside from depleting their wealth, it wrecks emotional havoc. If we achieve more effective management of SCD by this Bill, then we have played our role well as our people’s representatives.

SENAMI OHIOMOKHARE OF THE JEPHTHAH OHIOMOKHARE SICKLE CELL FOUNDATION AND MRS TAMARA AHMED OGEMBE AT THE LAUNCH OF A CAMPAIGN TO RAISE AWARENESS ABOUT THE GENOTYPE TESTING BILL. THE CAMPAIGN IS TITLED “WHAT’S YOUR TYPE?”

He noted that Anambra in 2002 enacted a law mandating intending couples to undergo SCD testing before marriage, but pointed out that there is no uniform law on Sickle Cell Disease in Nigeria. “This bill fills that lacuna,” he said.

According to a Vanguard Nigeria report, in a statement last year to mark Sickle Cell Day, Anambra State Governor Willie Obiano  reportedly said that his government would implement the State’s Sickle Cell Law. The report stated that couples who violate the law “would be denied certain privileges by the state government, adding that involving the churches would ensure strict compliance to the law. The governor said the state government would set up sickle cell clinics in the three senatorial districts of the state with state- of- the- art facilities and explained that people living with sickle cell disorder would be treated free of-charge under a Health Insurance Scheme that would be launched in the state soon.” Anambra State signed its Health Insurance Bill into law in June of this year, and has earmarked N200m for its Health Insurance Scheme.

THE JEPHTHAH OHIOMOKHARE SICKLE CELL FOUNDATION IS RAISING AWARENESS ABOUT THE GENOTYPE TESTING BILL. 

The Jephthah Ohiomokhare Sickle Cell Foundation in Abuja has partnered with Mrs. Tamara Ahmed Ogembe, wife of Senator Ahmed Ogembe, to raise awareness about SCD, and about the Bill. The Foundation was co-founded by Emmanuel and Senami Ohiomokhare, in memory of their first son Jephthah, who was a Sickle Cell Warrior. Jephthah Ohiomokhare passed away this year, at the age of 15. The Foundation and Mrs. Ogembe are currently advocating for young people to be knowledgeable about their genotype under the campaign #WhatsYourType?

Senami Ohiomokhare said the Genotype Test Bill is important because “it is big on prevention, making people go for compulsory testing. We have found out that people do tests and sometimes it comes out false, so the bill also ensures that people do their testing in government owned labs, so that the tests can be verified. The bill will also enforce that children from birth are screened and registered with their genotypes so that government can track children with sickle cell disease and make care and management of SCD available early.”

She said one major concern not addressed by the bill comes from those caring for or living with SCD. “The bill does open up a lot of other issues. There are people already living with SCD and they are more concerned about their current care. Medical personnel only treat them with general knowledge, and sometimes they accuse them of abusing their pain medication or pretending to be in pain. Most doctors are not trained on sickle cell management. We need to ensure that those living with sickle cell disease can access the specialist care they need. This is where hematologists come in. Right now in Abuja we only have one hematologist. We should have at least four in Abuja in secondary and tertiary health institutions.”

Ogembe and Omi-Agege’s Bill has 6 sections. Sections One and Two are on citations and requirements for SCD Testing for intending couples and new born babies. Section Three lists out the responsibility of certain persons, including registrars of marriages, and ministers in licensed places of worship, to advice and counsel intending couples on SCD testing before solemnization of marriage. Section Four is on offences and penalties under the Bill. Section 5 is on the responsibility of some government institutions and professional health bodies to sensitize the public about SCD testing under the Bill. Section 6 is the interpretation section.

The Compulsory Haemoglobin-Genotype Screening Test Bill is hinged on two existing laws in the National Assembly, namely, the Marriage Act and the Births, Deaths e.t.c. (Compulsory Registration) Act.

The bill has passed the second reading, and is slated to go to public hearing after the Senators’ recess.

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MADE IN NIGERIA ~ By Dike Chukwumerije

OBLONG MEDIA


I believe in One Nigeria. I know, you’re going to start asking me why – with herdsman running rampage, and Oba saying ‘jump in lagoon’, and Arewa Youth giving till October 1, and Evans and co waiting for me at home; with corruption, dysfunction and discriminatory cut-off marks, bombings in the South and shootings in the North; with President promising to work according to vote, bad schools, no-light, poor hospitals, bad roads; with Dino waxing new hits every day, newspaper trials and no convictions; with billions stashed in Ikoyi apartment – what can I say? It’s home.

For one, I like the smell of suya… And that early morning drive out of Jos this time of the year, with the fog like lingerie faintly masking the topography of beauty. I tell you, I grew up here, you know, born in that maelstrom that is Mushin, drinking in the sights from…

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Increased suicide bomb attacks: Borno residents appeal to military to intervene

Borno residents have appealed to the military to intervene in the increased suicide bomb attacks by suspected Boko Haram insurgents in the state.

Across section of those interviewed by the News Agency of Nigeria (NAN) in Maiduguri made the appeal on Sunday in Maiduguri.

suicide bomb

Malam Bakura Modu, a local hunter said that the wave of attacks especially in Maiduguri, has created negative impression about the current situation in the state.

“There is no doubt that the military has recorded great successes against the Boko Haram insurgents.

“But the recent spate of suicide bomb attacks is creating wrong impression in the media that the group is still strong,” Modu said.

He said that the military must live up to the expectations by finding quick solutions to the bombings.

Modu said local hunters were ready to join the military in the search for the insurgents in the bush.

 

“We have been expressing our willingness to join the fight against the insurgents in the bush, but the military had always turned us back.

“We are hoping that this time around they will consider our proposal,” he said.

Mr Samuel Anjukui, a retired police officer corroborated Modu’s claim.

“The military has within a few months decimated the insurgents, reclaiming territories and rescuing many abducted persons.

“But the recent up surge in the number of suicide bomb attacks has created worries in the minds of the people,” Anjukui said.

He added:” In the last few months it is almost certain that incidences of bomb blasts will occur every weekend.

“The situation has even worsened now as the blasts have almost assumed a daily dimension”.

Anjukui, however, expressed optimism in the ability of the military to address the situation.

“The military has the capabilities to address the problem; it must therefore rise up to the occasion by halting the negative trend.

“It is either they make use of high technology for early detection of explosive materials or take the battle to the door steps of the insurgents in the bush,” he said.

Malam Musa Inuwa a civil servant offered a different perspective.

“I think that the natives hold the key to ending the ugly trend the military has done its best by degrading the insurgents.

“But ending the crisis depend on the natives because the insurgents live among the people, they plan their attacks among the people.

“As long as the people are not willing to expose them, the attacks will continue,” Inuwa said.(NAN)

Source: NTA

Inclusion of youngsters will enhance Super Eagles’ performance, says Disu

The Technical Director, Lagos Junior League (J-League), Tunde Disu, on Sunday called for more inclusion of  home-bred youngsters in the national senior team, Super Eagles to enhance their performance.

Disu made the clarion call in an interview with the News Agency of Nigeria (NAN) while commenting on Wilfred Ndidi who was awarded the Leicester City FC’s Young Player of the Year.

disu advice use of youngsters

Disu also commended Genort Rohr, the Super Eagles Technical Adviser, for including three home-based players – MFM FC’s duo of Stephen Odey and Sikiru Olatunbosun and Akwa United’s Alhassan Ibrahim in the national team.

Reflecting on how the youngsters could be helpful in the Super Eagles’ squad, Disu said that the blend of young bloods from the local league with experience of older players would enhance the team’s performance.

“The Super Eagles need young bloods like Ndidi in the senior team which I believe will give the necessary blend the team needs to prosecute matches and achieve better performance.

“Experience has shown that these youngsters have passion for the game and they are more resilient in their approach to national engagements.

“Overtime some of the youngsters that broke into the national teams perform better than the older ones because the level of their productivity is still high.

“I will like to see some of the home grown talents being called up to the national team. We have many of their likes in the J-League,’’ he said.

Disu said that the J-League had produced players that could be regarded to as world class adding that some of the products of the league were making waves in Europe.

“Lagos J-League is a worthy example of grassroots academy that has produced world class footballers. Some of the graduates of the league are exceptional.

“We already have players such as Ndidi, Victor Osihimien, Taiwo Awoniyi, Stephen Odey and Dele Alampasu among others who can be regarded as the standing Eagles.

“There is no need of tagging them future stars; they should start to play now because this is the time the nation needs their youthful energy to perform.

“The inclusion of these youngsters will ensure better performance and results for the Eagles,’’ he said.

Disu said that the J-League would soon start and that he expected more super talents to be discovered during the season.

“The J-League will soon start and we are already screening the footballers. I hope to see more super stars discovered when we start the league.

“Within its short time in the football stage, the league is already making waves and I can attest to the fact that the league is one of the best organised junior leagues in Africa.

“The league is solely sponsored by the Lagos State Government and we are grateful to them for allowing the league to stand. The aim is to promote grassroots football.

“We have dutiful coaches who go out of their ways in recruiting outstanding players for the league, they are the ones calling the shot. We hope to see better performance this year,’’ he said. (NAN)

Source: NTA

Trump urges Muslim leaders to lead fight against radicalisation

Media captionTrump tells Muslim nations to “Drive out the terrorists”

US President Donald Trump has urged Muslim countries to take the lead in combating radicalisation in a major speech in Saudi Arabia.

“Drive them out of this earth,” he told regional leaders in Riyadh, as part of his first official trip abroad.

Mr Trump blamed Iran, Saudi Arabia’s rival, for instability in the region.

His speech is seen as an attempted reset with Muslims after his harsh campaign rhetoric stirred concerns in the Islamic world.

Mr Trump had previously suggested he would be open to creating a database of all the Muslims in the US. And he had also called for Muslims to be temporarily banned from entering the US over security concerns.

But, speaking in the Saudi capital to leaders of 55 Muslim-majority countries, Mr Trump called this a “new chapter”, saying he was not there to “lecture” them or impose the American way of life.

The fight against extremism, he added, was not a battle between different faiths or civilizations: “This is a battle between good and evil”.

Media captionMelania Trump didn’t wear a headscarf, but does it matter?

“A better future is only possible if your nations drive out the terrorists, and drive out the extremists”.

But, he added, the countries could not wait for “American power” to act, and had to “fulfil their part of the burden”.

He singled out Iran for criticism, accusing it of fuelling sectarian conflict and supporting “unspeakable crimes” by the government of President Bashar al-Assad in Syria.


A tough message: By Frank Gardner, BBC Security correspondent, Riyadh

Tea servers watch US President Donald Trump deliver remarks to the Arab Islamic American SummitImage copyrightREUTERS

Behind the lavish praise heaped on his hosts, President Trump used this speech to deliver a tough message to Arab and Muslim governments: deal with the ideology that fuels terrorism now or live with it for generations to come.

He went out of his way to avoid the sort of inflammatory language he’s more usually known for. His repeated condemnation of Saudi Arabia’s regional rival Iran will have pleased the Gulf Arab leaders listening.

Unlike his predecessor, Barack Obama, this US president made no mention of human rights or democracy. But he did condemn the oppression of women.

And amongst several cynical reactions to the speech from around the region on social media, some have pointed out that here in Saudi Arabia women are forbidden to drive and there are no parliamentary elections. In Iran, the country accused by Mr Trump of being behind much of the current terrorism across the Middle East, they have just had a free election and women are free to drive.


Analysts said the speech was a change for Mr Trump, who is trying to redefine his relationship with the Muslim world after several controversial remarks, including an interview last year in which he famously said: “I think Islam hates us.”

His highly anticipated address did not include the phrase “radical Islamic terrorism”, which he had used before and is considered offensive by many Muslims. A transcript of the text published on his Facebook page included a mention of “Islamist extremism” and “Islamist terror groups”.

But in his speech Mr Trump said: “That means honestly confronting the crisis of Islamic extremism and the Islamists and Islamic terror of all kinds.” It was not immediately clear if he stumbled over the word or decided to change the script.


Islamist and Islamic: The difference

  • Islamist: “It’s the name of a dystopian ideology which is destructive for everyone, including Muslims,” says Soner Cagaptay, from the Washington Institute for Near East Policy
  • Islamic: “It’s an adjective for Muslims,” he adds

Meanwhile, the US and six Gulf states announced a deal to co-ordinate their efforts aimed at cutting off sources of money for extremist groups, including so-called Islamic State (IS).

Media captionDonald Trump sways along with a traditional Saudi sword dance

The countries – Saudi Arabia, Qatar, Kuwait, Oman, the United Arab Emirates and Bahrain – are involved in the fight against the militants, but have been accused of backing the group and other Sunni militants – most notably in a 2014 email by Hillary Clinton released by Wikileaks.

“The unique piece of it is that every single one of them are signatories on how they’re responsible and will actually prosecute the financing of terrorism, including individuals,” said Dina Powell, US Deputy National Security Adviser for Strategy.


The agenda for the rest of Mr Trump’s trip

Mr Trump’s eight-day trip will also take in Israel, the Palestinian territories, Brussels, the Vatican, and Sicily.

The president’s visit has been overshadowed by his political difficulties at home, namely the fallout over his sacking of FBI chief James Comey.

Map showing Donald Trump's first foreign trip - May 2017
  • Monday-Tuesday, 22-23 May: Tel Aviv and Jerusalem, before visiting the West Bank on Tuesday
  • Wednesday 24 May: Rome and Brussels. Mr Trump will meet Pope Francis, then Belgian officials
  • Thursday, 25 May: A Nato summit in Brussels
  • Friday, 26 May: Sicily, for a meeting of G7 members

Source: http://www.bbc.com/news/world-us-canada

The man who brokered the deal to release the Chibok girls

Lawyer Zannah Mustapha, mediator for Chibok girls, speaks during an exclusive interview with Reuters in Abuja, Nigeria May 8, 2017.Image copyright REUTERS

In our series of letters from African journalists, novelist and writer Adaobi Tricia Nwaubani profiles the lawyer who brokered the release of 82 women captured by Nigeria’s militant Islamist group Boko Haram.

When 57-year-old Zannah Mustapha arrived for the handover of the 82 Chibok girls freed from Boko Haram after three years in captivity, a militant read out the girls’ names from a list.

One by one, the abducted schoolgirls, now women, lined up along the outskirts of a forest near Kumshe town, on the border between Nigeria and Cameroon. Each of them was covered from head to ankle in a dark-coloured hijab.

“I went ahead of the Red Cross. They [the militants] brought the girls to me,” said Mr Mustapha, the lawyer from Borno state in north-east Nigeria.

Mr Mustapha says the girls started singing for joy when they got into Red Cross vehicles

He has been mediating between the government and militants for the release of the Chibok girls and for an end to the Boko Haram insurgency.

In 2015, President Muhammadu Buhari told the media that his government was willing to negotiate with “credible” leaders of Boko Haram for the release of the girls.

More than 200 of them were abducted a year earlier from the north-eastern town of Chibok, sparking global outrage.

Previous attempts had failed, with different groups coming forward, each claiming to be the militants in possession of the missing schoolgirls.

It was Mr Mustapha who succeeded in convincing the Nigerian authorities that this particular group should be taken for what they say, presidential spokesman Garba Shehu told me.

The freed women will now have to rebuild their lives

“He had dealt with them in the past and they keep to their word,” he said.

Mr Mustapha’s role as a mediator dates back to his founding the Future Prowess Islamic Foundation School in 2007, to provide free Islamic-based education to orphans and the poor.

When the Boko Haram insurgency erupted in 2009, the school offered admission to the children of soldiers and government officials killed by the militants, as well as those of militants killed by the state.

The 82 met the Nigerian President Muhammadu Buhari after they were rescued

Mr Mustapha then sought the assistance of the International Committee of the Red Cross (ICRC), which began providing free meals to the pupils.

He also encouraged parents to form an association which would reach out to other widows and convince them to send their children to his school.

The ICRC soon extended its humanitarian services to the mothers, providing them free food and other items every month.

“This was at a time when the wives of Boko Haram militants were being arrested and their houses demolished, so Boko Haram saw me and the ICRC as neutral parties,” Mr Mustapha said.

During the previous government of President Goodluck Jonathan, former President Olusegun Obasanjo visited Maiduguri, the epicentre of the insurgency, to intervene in the escalating crisis.

He then set up a group to discuss peace with Boko Haram. Mr Mustapha was included in it because of the relationship he had forged with the families of Boko Haram militants.

After the Swiss ambassador to Nigeria paid a visit to the Future Prowess school in 2012, he arranged for Mr Mustapha to go to Zurich and Geneva to receive formal training as a mediator.

“We were already trying to negotiate peace with Boko Haram before the Chibok girls were kidnapped,” Mr Mustapha said.

The initial negotiation was for a batch of 20 Chibok girls to be released.

But, as a sign of commitment to their relationship, Boko Haram added an extra woman, whom Mr Mustapha said was their gift to him, hence the number 21.

The kidnapping provoked global outrage in 2014 including from Michelle Obama

When they were released in October 2016, she was chosen by Boko Haram to read out the names of the other 20 women from a list.

Mr Mustapha said the 21 women were lined up and asked by Boko Haram militants if they had been raped. They all said they were not.

When a militant approached a woman who was carrying a baby, she said that she was pregnant at the time of her abduction, having got married a few weeks earlier.

The baby girl in her arms, she said, was her husband’s child.

For some reason, Boko Haram, a group that has cultivated a reputation for brutality, wanted it to be known that it was only after the women “agreed” to get married that the militants had sexual relations with them.


Adaobi Tricia Nwaubani:

“I felt that I have done something that is worth saying to the world that I have done this,” Mr Mustapha said.


This process of lining up the women, pointing at each one and asking the same question, was repeated at the beginning of May when 82 more women were released.

One of about seven Boko Haram militants, who accompanied them, went from woman to woman asking: “Throughout the time you were with us, did anyone rape you or touch you?” Mr Mustapha said, adding that each of them replied in the negative.

None of the second batch of 82 captives came with a child.

But one had an amputated limb and was walking with crutches, an injury she sustained, according to what Mr Mustapha was told, during Nigerian military air strikes against Boko Haram.

‘They all ran’

“You are free today,” Mr Mustapha announced to the 82 women after all the names were called out.

“They all smiled,” he said.

He believes that their subdued reaction was as a result of the presence of the militants, all armed with guns, some wearing army camouflage uniforms and boots.

Mr Mustapha then took some photographs with the women. The militants also had their video camera on hand and recorded the event. ICRC vehicles eventually arrived.

“When I told them to go to the cars, they all ran,” Mr Mustapha said. “Immediately they entered the vehicles, they started singing for joy. Some shed tears.”

Mr Mustapha has received a number of accolades for his work with Future Prowess School. He was a finalist for the 2016 Robert Burns humanitarian award, given to those who have “saved, improved or enriched the lives of others or society as a whole, through self-sacrifice, selfless service, hands-on charitable or volunteer work, or other acts”. He was also given a 2017 Aurora Prize Modern Day Hero award, for those whose “life and actions guarantee the safe existence of others”.

However, he described handing over the 82 freed girls to the Nigerian government as “the highest point in my life”.

“I felt that I have done something that is worth saying to the world that I have done this,” he said.

Source: http://www.bbc.com/news/world-africa

NCAA orders Ethiopian Airlines to stop collection of unauthorised charges

The Nigerian Civil Aviation Authority (NCAA) has ordered Ethiopian Airlines to stop the collection of  unauthorized charges forthwith.

The order was contained in a statement signed by Mr Sam Adurogboye, NCAA General Manager, Public Relations, on Sunday in Lagos.

Adurogboye said these unauthorised charges referred to as” refundable deportation fee” is put at between 75 dollars  and 150 dollars.

According to him, all South Africa bound passengers on Ethiopian Airlines are compelled to pay this amount before boarding.

He noted that the authority had been inundated with several complaints from many passengers that have suffered this fate.

NCAA

“According to investigation by NCAA, all outbound passengers to South Africa from Murtala Mohammed International Airport, (MMIA), Lagos and Akanu Ibiam International Airport, Enugu, transiting through Addis Ababa, are liable to pay 75 dollars.

“However, if your transiting time is 24 hours or beyond, the passenger will pay 150 dollars.

“While passengers are not given prior notice concerning these charges before arriving at the airports, some were made to sign undertaken to be responsible for all expenses incurred if deported,” Adurogboye said.

He said consequent upon this, the Ethiopian Airlines’ Country management were summoned by NCAA, where they claimed the fees were always refunded when a passenger was not deported.

Adurogboye said the regulatory authority however found this unacceptable and viewed it as a violation of the its extant regulations.

“The Nigerian Civil Aviation Regulations (NCARs) Part 18.4.1(iii) stipulates that “all air carriers should obtain approval from the authority to introduce or increase add-on charges or surcharges prior to implementation.

“Till date, the authority has not received any request for fare increase, tariff or add-ons from the airline.

“On this strength, Ethiopian Airlines has been ordered to stop with immediate effect these illegal charges,” he said.

Adurogboye noted that the Airline could take advantage of the Nigerian Civil Aviation Regulations (Nig.CAR) and obtain necessary approvals from the Authority if it has genuine grounds to increase fares or obtain tariffs.

The spokesman said :”the NCAA hereby warns all operating airlines to endeavour to adhere to the regulations in all facets of their operations.

“It is part of our statutory responsibilities to protect the rights of passengers and this we shall continue to do in accordance to the law.” (NAN)

Source: NTA

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