Roy Exum: What Desperate People Do

Friday, March 14, 2014 - by Roy Exum
Roy Exum
Roy Exum

Doctors at St. Jude Children’s Hospital in Memphis are holding their collective breaths in hope that sometime today the miraculous hospital will receive a shipment of a new drug called brincidofovir. There is a 7-year-old boy who has been in intensive care since January and it may be Josh Hardy’s only hope.

What makes the story so fascinating is brincidofovir has yet to be approved by the Food and Drug Administration. Not until his frantic parents launched an intense campaign that included online petitions and a long string of desperate appeals to the manufacturer -- a small pharmaceutical company named Chimerix in North Carolina -- were they finally successful earlier this week in getting the FDA to open a 20-patient open-label clinical trial under a “compassionate use” protocol.

Dr. Herve’ Mommeja-Marin, the vice president of clinical research at Chimerix, has warned the drug hasn’t been proven to be effective in cases of advanced adenovirus. That is what is believed to have caused Josh to suffer complete heart and kidney failure on Jan. 14, but St. Jude doctors insist this may be the one and only option.

I don’t believe there is a human being on earth that would deny Josh Hardy’s parents a chance to save their son’s life with a drug that is unproven in clinical trials. Please! I remember when fabled actor Steve McQueen was so desperate before he died of cancer he went to Mexico for some zany elixir made from apricot pits. Nobody dared stand in judgment because nothing else under the sun was working either.

I know about desperation. About five years ago I was at Mayo Clinic and ravaged with five different infections. The best drugs were Vancomycin and Daptomycin but while “Dapto” was the best at fighting two of the infections, the other three types thought it was champagne and wanted to party. Only when doctors juggled the IV feeding just so, and I prayed for a solid three weeks, did it finally turn the corner. My point is that I was so sick I would have done anything.

So now let’s talk Janea Cox and her 4-year-old daughter, Haleigh. There was a small goodbye party staged for the two at the Georgia legislature on Wednesday just before a very desperate mother and daughter boarded an airplane and became “marijuana refugees” in Colorado. “My daughter is 4 years old and she quit breathing over 250 times in the past two months. It has to be a human side of the story,” Cox told a TV reporter.

Haleigh has severe epilepsy. Her mother is desperate. In over a dozen states there is legislation pending for medical marijuana – 20 states have approved it --  but opponents cite the lack of medical trials and vague scientific proof that cannabis oil really works. That is all true but parents like Janea don’t want to hear it. Instead she said: “We're living minute to minute with Haleigh. We don't know how much longer she has.”  

Get the full picture here. Janea won’t get the drugs that hundreds swear have already worked wonders by just showing up in marijuana-friendly Colorado. “We'll still be on a waiting list once we get out there. We have to meet with two doctors and get our red card and then we'll be on the 'realm of caring' wait list,” she told Channel 2’s Lori Geary. “We're not sure how long it's going to take us to get the medication.”

But she is that desperate to wrestle her baby from the demons that have thus far wrecked a 4-year-old’s life. Once the Cox request is filled, Janea will have to remain in Colorado because if she comes back with cannabis oil, she will be arrested and her child will be seized by the Department of Family and Children’s Services (where Haleigh will almost assuredly resume having seizures that stop her breathing.) Are you focusing here?

As Janea and Haleigh said goodbye to their family – having no idea when they will return – the Georgia Senate passed a bill that would improve their plight. “If you're a mother or father and you've gone somewhere out of state to get oil for your child and bring it back, you can be assured that you're not going to be arrested and not going to have DFCS taking your child away. That's a big, big step,” said state Rep. Allen Peake.

But – wait -- the House has to okay the bill and then it has to get the Governor’s signature in an election year. The House had passed a similar bill but in order for Rep. Peake to win Senate approval, he had to tack on a provision that would expand insurance for autism. The House may balk at that in a revote.

So listen to Mrs. Cox: “To be able to fly out there, get this medication and possibly be able to come home and be back with our families, I mean.... there's no words right now.”

She’s every bit as desperate as the parents at St. Jude’s who have been waiting for brincidofovir. But unlike the drug that has taken 14 years for the North Carolina company to develop, marijuana is still classified by the Drug Enforcement Administration as a “Schedule 1 substance” that has “no currently accepted medical use in the United States" and the government still claims it has high potential for abuse.

Before you tell me what a desperate parent should do, explain the difference between the life-saving needs of 7-year-old Josh Hardly and 4-year-old Haleigh Cox. For the life of me, I cannot do it. It is time for us crush down our phony barriers and try anything that might work.

royexum@aol.com



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