Drug company CEO hangs up on charity head who called with offer to pay $50,000 for life-saving treatment for a dying 7-year-old boy

– the company received $72 million in federal funding to develop Brincidofovir

  • The CEO of  pharmaceutical company that could supply a life-saving anti-viral drugs to a 7-year-old cancer sufferer refuses to hand the drugs over
  • Chimerix chief Kenneth Moch hung up on charity that offered to pay $50,000 for Josh Hardy’s treatment
  • Hung up when asked if he would react the same if it was his own son
  • Hardy, seven, is battling a viral infection following a bone marrow transplant
  • A drug called Brincidofovir made by North Carolina company Chimerex could clear up the infection in two weeks
  • Brincidofovir has not received FDA approval but has been administered for ‘compassionate use’ to hundreds of patients
  • Chimerex CEO Kenneth Moch says the company no longer has a compassionate use program because it cannot afford it

By James  Nye and Alex Greig

PUBLISHED:          17:13 EST, 11 March 2014       | UPDATED:          19:06 EST, 11 March 2014

Denial:  Chimerix CEO Kevin Moch has refused to supply 7-year-old cancer sufferer Josh Hardy with the life-saving anti-viral drug he needs

Denial:  Chimerix CEO Kevin Moch has refused to supply 7-year-old cancer sufferer Josh Hardy with the life-saving anti-viral drug he needs

The CEO of a drug company that is refusing to supply lifesaving medication to a seven-year-old cancer survivor from Virginia hung up the phone to a charity that offered to buy it for the little boy.

Chimerix chief Kenneth Moch put down the phone on Richard Plotkin, vice chair of the Max Cure Foundation after he offered to pay the $50,000 needed to secure Brincidofovir – needed to help Josh Hardy fight off an infection he developed after a bone marrow transplant.

‘I spoke to Mr. Moch yesterday by phone.  I told him that we had the $50,000 that I thought he was claiming he needed to supply the drug,’ Richard Plotkin, vice chair of the Max Cure Foundation, said on Tuesday morning’s Fox and Friends.

‘He then told me it isn’t about money.  He told me it’s all about ethics.  I said, ‘Fine, tell me why you will not give it to this little boy.

‘If he does not get the drug, he will die this week, I’m told.  He said he cannot make an exception.’

Plotkin asked Moch what he would do if Josh was his child or grandchild, but Plotkin said Moch refused to answer this question and then hung up the phone.

‘As a result, it appears the final plea is to the board of directors at Chimerix…I ask the board to close their eyes, and as you close your eyes, assume there’s a little boy lying in a hospital bed who says to his father, ‘Daddy, am I going to die? And if I’m going to die, who will take care of me in heaven?’’ Plotkin said to Fox and Friends.

Courageous: Josh has already battled cancer four times in his seven years

Courageous: Josh has already battled cancer four times in his seven years

Fighter: Seven-year-old Josh Hardy has survived four bouts of kidney cancer, heart failure and a bone marrow transplant

 

‘And then I want you to assume that this little boy is your child or grandchild. And members of the board of directors, I have no doubt how you would respond to that.’

The drug that will save Josh’s life has not been approved by the FDA, but has previously been administered to hundreds of other patients under a prior ‘compassionate use’ allowance.

‘As we progressed to larger and more complex safety trials, we made the decision two years ago to stop the program and focus resources on earning FDA approval,’ Moch said yesterday.

Moch says that saying yes to Josh would mean saying yes to many more patients, draining the company’s resources and delaying the time it will take for the drug to progress through the formal studies required before it can be given FDA approval and help many more future patients.

However, the company received $72 million in federal funding to develop Brincidofovir.

Josh Hardy’s mother, Aimee Hardy, says the situation is devastating, especially for a boy who has fought so hard to live.

‘There’s no good excuse for us,’ she said. ‘There’s nothing they can say that will really keep us from asking. We’re begging them to give it to us.’

Mother: Aimee Hardy appeared on Fox and Friends, saying she was infuriated that she was not sitting by her son's side and holding his hand, but had to campaign so that he could get the medicine he needs

Mother: Aimee Hardy appeared on Fox and Friends, saying she was infuriated that she was not sitting by her son’s side and holding his hand, but had to campaign so that he could get the medicine he needs

 

Family first: Aimee Hardy (with her children - son Josh is second from left) says she will not stop campaigning until her son has the medicine he needs

Family first: Aimee Hardy (with her children – son Josh is second from left) says she will not stop campaigning until her son has the medicine he needs

Josh Hardy was diagnosed with cancer of the kidneys in 2007. Since then, he has battled the disease four times.

He had been in remission for two years when a bone scan in November of 2013 revealed he had developed a bone marrow disorder due to earlier cancer treatments.

In January of this year he had a bone marrow transplant and endured another round of chemotherapy at St Jude’s Research Hospital in Memphis, Tennessee.

Following the successful surgery he  developed adenovirus, an infection that can be deadly in people with weakened immune systems.

‘Normally, Josh’s immune system would be able to handle the adenovirus if his immune system was set free,’ Hardy wrote on her son’s CaringBridge page.

‘The challenge is his immune system can’t be set free yet because his body is still trying to adapt to the new bone marrow cells. So to keep the body from killing the new cells, they have to suppress the immune system, thus creating ideal conditions for adenovirus to advance. Catch 22.’

Brincidofovir has been shown to clear up adenovirus in children in two weeks, reports Fox and Friends.

Deadly virus: Josh is in hospital battling a virus that could claim his life, even though a drug exists that could cure it

Deadly virus: Josh is in hospital battling a virus that could claim his life, even though a drug exists that could cure it

 

In his hands: Kenneth Moch, CEO of Chimerex, says the company no longer has a 'compassionate use' program

In his hands: Kenneth Moch, CEO of Chimerex, says the company no longer has a ‘compassionate use’ program

Josh’s doctors have also contacted Chimerex requesting their patient be allowed to have the drug, to no avail.

‘I feel that it’s just an excuse and we need them to totally change their stance, not only for us but for hundreds or even thousands of people that need [this drug],’ Hardy told Fox and Friends.

‘…To me, [it’s] almost a crime to not make it available to everyone who needs it.’

Aimee Hardy has launched a campaign to save her son, and says she will not stop until Josh gets the medicine, even though the fight is stealing precious moments she could be spending with her son.

‘I want to be by his bedside, holding his hand, telling him, ‘It’s going to be okay,’ but because of this unwillingness to release this drug, I have to leave him and come talk to you and it infuriates me,’ Hardy told Fox and Friends.

Kenneth Moch said that even a visit to see Josh at St. Jude would not change his mind about letting the child have the medicine. Aimee Hardy told Fox and Friends what Moch would see if he visited Josh’s bedside.

Curable: Josh is suffering from a curable virus that's preying on him because of his compromised immune system

Curable: Josh is suffering from a curable virus that’s preying on him because of his compromised immune system

 

A chance to live: The little boy has been in and out of hospital for much of his short life, never having a chance to do the things other little boys get to

A chance to live: The little boy has been in and out of hospital for much of his short life, never having a chance to do the things other little boys get to

‘He would see a frail little boy who has a very weak voice and has a hard time staying awake because he’s in so much pain,’ she said.

‘It’s horrible for us as parents to see, because he’s a vibrant, strong little boy, and even though he is frail, he has a very strong will about him. But things just keep stacking against him, and we just want to do everything we can to give him the opportunity to make a full recovery.’

Moch told Fox and Friends that seeing Josh in this state would not change his mind.

‘We have have great compassion for this family,’ Moch says. ‘But this is not just about a single boy.’

Aimee Hardy is asking supporters to call or email Chimerex or tweet @chimerex with the hashtag #savejosh.

Supporters can also track Josh’s progress on the Save Josh Facebook page.

Read more: http://www.dailymail.co.uk/news/article-2578699/Drug-company-CEO-hangs-charity-head-called-offer-pay-50-000-access-life-saving-drug-dying-7-year-old-boy.html#ixzz2vi5xeV6J Follow us: @MailOnline on Twitter | DailyMail on Facebook

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