Ali Hussain Khan: Teenage boy with body of PENSIONER due to rare disease

August 27, 2013
PENSIONERAli Hussain Khan ages eight times faster every year from the condition, which has already killed his five brothers and sisters
Tragic Ali Hussain Khan looks like a wizened old man – yet he is only 14.
Heartbreakingly, he’s also the last surviving child of SIX siblings hit by a rare, crippling ¬and incurable disease.
But despite suffering such a terrible loss, brave Ali refuses to give up hope a miracle cure will be found so he will reach adulthood.
Ali was born with progeria, a ¬genetic condition that ages his body eight times faster than normal.
There are only 80 known cases of progeria on the entire planet.
Yet Ali, his two brothers and three of his sisters had the condition, which ¬usually kills victims by the age of 14 with a heart attack or pneumonia.
But Ali refuses to give up hope a miracle cure may be found, even though he knows his life could end any moment.
He told the Sunday People : “I very much want to live and I hope there is medicine for my disease out there.
“I’m not scared of death but my parents have suffered a lot.

“I’d love to live much longer for them. I don’t want to burden them with any more pain.”
Dad Nabi Hussain Khan, 50, and mum Razia, 46, from Bihar – the poorest state in India – are first ¬cousins who were the product of an arranged marriage 32 years ago.
When their first daughter Rehana was born in 1983 they had no idea anything was wrong.
It was only after her second birthday when she couldn’t eat or walk properly they visited a local doctor.
But he was baffled and sent them home with a useless medicine.
They went back to the doctor after their son Ikramul was born in 1987 showing the same symptoms – and got the same reaction.
Nabi, who earns £20 a month as a factory guard, said: “The doctors were as clueless as us.
“If one of them had told us our children had some kind of genetic problem and we were connected we’d have stopped having children.”
Daughters Gudiya and Rubina were born in 1989 and 1992, Ali arrived in 1999 and a newborn baby boy died. All had progeria.
But the couple also had unaffected children – Sanjeeda and her sister Chanda are now 20 and 10.
Nabi and Razia only found out about progeria in 1995 after seeing an expert – who told them it was ¬incurable.
Nabi said: “No one in our community ¬believed it.
“Neighbours and extended family tormented us for not getting help for the children – they just couldn’t ¬understand a disease with no cure.”
Meanwhile, life was unbearable for Rehana, Ikramul, Gudiya, Rubina and Ali as they grew up with progeria.
They were ridiculed and bullied till none of them went to school.
Ali, who weighs just 1st 8lbs and is 3ft 7in tall, said: “None of us has had a childhood because we were confined to home.
“We had each other but that was it – we had no life.”
He added: “I’d love to be a normal person who can play, go to school, do some sports, take some risks.”
Gudiya and Rubina both died in 2004 aged 15 and 12. Rehana died three years later aged 24.
But 22-year-old Ikramul’s death in 2009 hit Ali hardest.
He said: “Ikramul was my best friend. He was very strong and didn’t pay any attention to the bullies.
“When he died I cried for weeks and couldn’t eat. But I realised I’d do him a huge injustice if I crumbled.” He added: “I have no one now – but I have to stay strong.
“It’s very lonely living this life since my siblings have gone.
“I’d like to be in the company of others like me again.”
Ali is cared for by expert Dr Sekhar Chattopadyay, who said: “There is nothing similar in the world where five siblings are affected.
“Ali’s parents are related to each other and that could be the reason for the disorder, though they have two children who are normal.
“We’re trying our best to keep Ali mentally and physically fit.
“The average life expectancy is 13 to 15 but let’s hope we can prolong Ali’s to 24 like his brother.”
There are four known cases of progeria in the UK.
They include Birmingham-born Dean Andrews, 21, who is the ¬oldest survivor in Europe.

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Agencies
June 4,2020

The World Health Organisation on Wednesday said that anti-malarial drug hydroxychloroquine (HCQ) will return to the solidarity trial for the potential treatment of coronavirus disease.

At a press conference in the WHO headquarters in Geneva, Director General Tedros Adhanom Ghebreyesus said: "On the basis of the available mortality data, the members of the committee recommended that there are no reasons to modify the trial protocol. The Executive Group received this recommendation and endorsed continuation of all arms of the solidarity trial, including hydroxychloroquine."

The world health body had temporarily suspended the usage of HCQ from the solidarity trial for coronavirus treatment on May 25 soon after a study published in one of the most reliable medical journals, which had suggested that the drug could cause more fatalities among COVID-19 patients.

However, the WHO chief said that the decision was taken as a precaution while the safety data was reviewed.

Ghebreyesus also said that the Data Safety and Monitoring Committee will continue to closely monitor the safety of all therapeutics being tested in the solidarity trial.

"So far, more than 3,500 patients have been recruited in 35 countries. WHO is committed to accelerating the development of effective therapeutics, vaccines and diagnostics as part of our commitment to serving the world with science, solutions and solidarity," he said.

Soon after HCQ was suspended from the trial, the Indian government had said that the antimalarial drug has been known for its benefits for a long time and its usage will be continued on the frontline workers, including police and healthcare professionals, as prophylaxis. The government had also said that studies were being conducted and the drug would be included in the clinical trial also for the treatment of coronavirus disease.

US President Donald Trump also had strongly advocated the use of HCQ and called it a "game-changer". He went to the extent of saying that he had taken the medicine.

Launched by WHO and partners, solidarity trial is an international clinical trial to find an effective treatment for COVID-19, including drugs to slow the progression of the disease or improve survival. The trial, which enrols patients from different countries, "will compare four treatment options against standard of care to assess their relative effectiveness against COVID-19", said WHO. 

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Agencies
February 24,2020

Singapore, Feb 24: Last week Singapore's Ministry of Trade and Industry revised their 2020 GDP growth projections downwards to -0.5 to 1.5 per cent, confirming fears of economic fallout from the coronavirus COVID-19. Just three days earlier, while visiting Changi Airport, the Prime Minister told the media that the country is bracing for a significant hit on the economy and the possibility of a recession.

In the budget announcement on February 18, various measures to help affected companies were announced.

This included a jobs support scheme to help companies retain workers that will see the government offset 8 per cent of wages up to SGD3,600(USD2,600) per worker, per month, for a three-month period. Companies will also get a 25 per cent rebate on their taxes for the year capped at SGD15,000 (USD10,800) per company.

There will be additional support for sectors directly affected by the virus outbreak such as tourism, aviation and retail. Qualifying companies will be given property tax rebates and can apply for temporary bridging loans to ease cash flow. Rebates will be offered on aircraft landing and parking charges as well as rental rebates for shops and cargo agents at Changi Airport.

Overall, the economic package will cost Singapore some USD 4.6 billion, well in excess of the USD 500 million some analysts had predicted. The resulting spending plan including the virus economic package will see a budget deficit of SGD 10.9 billion or 2.1 per cent of GDP, the highest since the Asian financial crisis of 1997.

It is hoped that with financial support, companies in Singapore will not only be able to ride through the current rough patch but be able to position themselves better to take off once the economic crisis brought upon by the contagion is over.

Which then are the Singapore companies that can potentially ride out the current storm and emerge stronger?

Aviation and hospitality firms are among those most impacted by the virus outbreak and Singapore Airlines (SIA) comes to mind. SIA is a well-run company but has seen its share price fall about 5.2 percent since the beginning of the year. In the short term, revenue and profits will no doubt be affected but it will recover in the long run.

Hospitality sector companies like Ascott Residence whose main sponsor is Capitaland, Southeast Asia's largest landlord, and CDL Hospitality, have seen 1.5 and 5.5 percent (respectively) shaved off their share prices since the start of the year.

In reporting financial results for the quarter which ended in December on February 14, Alibaba CEO Daniel Zhang said that due to the virus, they are seeing large changes in buying patterns. With widespread home confinement, there is a growing demand for delivery services including online food and grocery delivery, as well as office apps and streaming entertainment.

Similarly, in Singapore, with more people staying and working from home, the three main food delivery services, Grab Food, Foodpanda and Deliveroo, are doing roaring business. All three are privately held.

In late January, as the scale of the outbreak became more apparent, investors began pouring money into health-product firms in Asia that they think will benefit from the virus outbreak.

Bloomberg reported that when Chinese pharmaceutical companies like Da An Gene Co, Xilong Scientific and Shanghai Kehua Bio-Engineering said they have developed kits for detecting the virus, their stocks soared to hit the 10 per cent daily limit. Firms manufacturing protection gear and air-cleaning equipment climbed more than 10 per cent in Japan, while Malaysian rubber gloves producers climbed at least 5 per cent.

Naturally, many would view that pharmaceutical companies that have the technology and expertise to develop drugs to treat patients with the virus or are able to develop a vaccine, would stand to benefit from the coronavirus outbreak.

Firms like and Johnson & Johnson, Pfizer, MSD, GlaxoSmithKline (GSK) and Sanofi are the pharmaceutical behemoths that dominate the global vaccine market.

However, industry experts speaking to the BBC warned that a pot of gold is not necessarily waiting for any company that successfully develops a vaccine. Although the global vaccine market is expected to grow to USD60 billion this year, it is costly and time-consuming to develop and pass it through for use by the general public.

It is also unclear if Indian pharmaceutical firms will be able to benefit from the demand for medicines that can treat or prevent the virus.

India is the world's largest manufacturer of generic drugs and it supplies 20 percent of the world's drugs by volume. However, it sources 70 percent of its raw material from China. If supplies are disrupted beyond a month to a month and a half, they may see a slow-down in production. According to a CNN report, the companies that are most impacted by material shortages are GSK India, Pfizer (PFE) and Cipla. Other companies like Aurobindo Pharma, Cadila Healthcare and Sun Pharma are said to be carefully monitoring the situation.

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Agencies
July 15,2020

The first COVID-19 vaccine tested in the US revved up people's immune systems just the way scientists had hoped, researchers reported Tuesday -- as the shots are poised to begin key final testing.

No matter how you slice this, this is good news, Dr. Anthony Fauci, the U.S. government's top infectious disease expert, told The Associated Press.

The experimental vaccine, developed by Fauci's colleagues at the National Institutes of Health and Moderna Inc., will start its most important step around July 27: A 30,000-person study to prove if the shots really are strong enough to protect against the coronavirus.

But Tuesday, researchers reported anxiously awaited findings from the first 45 volunteers who rolled up their sleeves back in March. Sure enough, the vaccine provided a hoped-for immune boost.

Those early volunteers developed what are called neutralizing antibodies in their bloodstream -- molecules key to blocking infection -- at levels comparable to those found in people who survived COVID-19, the research team reported in the New England Journal of Medicine.

This is an essential building block that is needed to move forward with the trials that could actually determine whether the vaccine does protect against infection, said Dr. Lisa Jackson of the Kaiser Permanente Washington Research Institute in Seattle, who led the study.

There's no guarantee but the government hopes to have results around the end of the year -- record-setting speed for developing a vaccine.

The vaccine requires two doses, a month apart.

There were no serious side effects. But more than half the study participants reported flu-like reactions to the shots that aren't uncommon with other vaccines -- fatigue, headache, chills, fever and pain at the injection site. For three participants given the highest dose, those reactions were more severe; that dose isn't being pursued.

Some of those reactions are similar to coronavirus symptoms but they're temporary, lasting about a day and occur right after vaccination, researchers noted.

Small price to pay for protection against COVID, said Dr. William Schaffner of Vanderbilt University Medical Center, a vaccine expert who wasn't involved with the study.

He called the early results a good first step, and is optimistic that final testing could deliver answers about whether it's really safe and effective by the beginning of next year.

It would be wonderful. But that assumes everything's working right on schedule, Schaffner cautioned.

Moderna's share price jumped nearly 15 percent in trading after US markets closed. Shares of the company, based in Cambridge, Massachusetts, have nearly quadrupled this year.

Tuesday's results only included younger adults. The first-step testing later was expanded to include dozens of older adults, the age group most at risk from COVID-19.

Those results aren't public yet but regulators are evaluating them. Fauci said final testing will include older adults, as well as people with chronic health conditions that make them more vulnerable to the virus and Black and Latino populations likewise affected.

Nearly two dozen possible COVID-19 vaccines are in various stages of testing around the world. Candidates from China and Britain's Oxford University also are entering final testing stages.

The 30,000-person study will mark the world's largest study of a potential COVID-19 vaccine so far. And the NIH-developed shot isn't the only one set for such massive U.S. testing, crucial to spot rare side effects. The government plans similar large studies of the Oxford candidate and another by Johnson & Johnson; separately, Pfizer Inc. is planning its own huge study.

Already, people can start signing up to volunteer for the different studies.

People think this is a race for one winner. Me, I'm cheering every one of them on, said Fauci, who directs NIH's National Institute of Allergy and Infectious Diseases.

We need multiple vaccines. We need vaccines for the world, not only for our own country. Around the world, governments are investing in stockpiles of hundreds of millions of doses of the different candidates, in hopes of speedily starting inoculations if any are proven to work.

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