A costly journey to death’s door and back

P J Patterson’s former Chief Advisor Delano Franklyn warns about link between Zika and deadly disease

BY DESMOND ALLEN Executive editor special assignment allend@jamaicaobserver.com

Saturday, July 30, 2016

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On his back in a hospital bed since July 2, 2016 in a state of near paralysis, Delano Franklyn, the former Chief Advisor to Prime Minister PJ Patterson, gives a chilling account of his near-death experience when the marauding Zika virus opened the door to a little known but deadly disease, Guillain-Barré Syndrome (GBS).


Franklyn, a tall robust man whose clean-shaven face and head are familiar to many Jamaicans and Comrades of the People’s National Party (PNP), was reduced overnight to a mere shadow of his former self, bed-ridden and needing help to do even basic things most people take for granted.


Doctors treating him expressed shock that he was still alive, but he admits in an interview with the Jamaica Observer that had he not been able to meet the astronomical cost of the vital drugs that would save his life, this reporter would most likely be writing his obituary.


The United States Centers For Disease Control and Prevention (CDC) describes GBS as an uncommon sickness of the nervous system in which a person’s own immune system damages the nerve cells, causing muscle weakness, and sometimes, paralysis.


"GBS symptoms include weakness of the arms and legs…on both sides of the body. In some cases, the muscles of the face that control eye movement or swallowing may also become weak. In the most serious cases, this muscle weakness can affect breathing, and people sometimes need a breathing tube.


"These symptoms can last a few weeks or several months. Although most people fully recover from GBS, some people have permanent damage, and in one out of 20 cases people have died," the CDC says.



Lancet, the online medical journal, said that in the first study of its kind, between October 2013 and April 2014, French Polynesia experienced the largest Zika virus outbreak ever described at that time. During the same period, an increase in Guillain-Barré Syndrome was reported, suggesting a possible association between Zika virus and Guillain-Barré Syndrome.


"Because Zika virus is spreading rapidly across the Americas, at-risk countries need to prepare for adequate intensive-care bed capacity to manage patients with Guillain-Barré syndrome," the journal suggested.


Corroborating the information, the United Nations World Health Organization (WHO) said the virus had spread quickly throughout Central and South America and the Caribbean, churning its way across 64 countries since 2015.


It is the realisation that there is significant ignorance in Jamaica about Zika’s suspected complicity with GBS, plus the fact that most people of lesser means would be unable to afford the medication, that has spurred Franklyn, an attorney-at-law and political activist, to tell his story to journalists.


"If I can put my fellow Jamaicans on alert to the fact that Zika can open the door to this deadly and costly disease, it might just be that I can save someone, and nothing would give me greater satisfaction," said Franklyn, his voice now minus the boom and too weak to summon the familiar laughter.


Here now, in his own words, is Franklyn’s account of his journey to death’s door and back:


On or around the 16th or 17th of June, I felt what then turned out to be the symptoms of Zika – upper limbs a little weak, by the following day bloodshot eyes, but I kept going. I just never stopped at all. By the weekend of the 19th of June, I developed full-blown rashes.


I proceeded to do everything that I would normally do, including a graduation which I had at Kingston College as guest speaker on June 19. The only thing I took was Benadryl, which cleared up the rashes within two or three days.


After the rashes were cleared up — we are now into the 21st-22nd of June — I responded to an invitation to do a Diaspora conference in Orlando, Florida that weekend. I drove to the airport, parked, went on the aircraft, travelled, and I did the Diaspora conference which ran for two days — June 25-26.


The evening before returning to Jamaica, I went to my hotel and when I opened the door and stepped in, it was as if I was walking on air. I went to bed, took off my shoes and socks, and I realised that I was not having sensation in sections of my feet and that the palm of my hands were cramped, as they are now.


But I was still able to move around, to walk, to travel. I got on the aircraft and returned to Jamaica on June 27, came through the airport, went to my car which was parked there, and drove home. I got home very late that Monday. On the Tuesday when I got up I began to feel pain all over.


I was in contact with my doctor, just monitoring it on the phone. On the Wednesday, it got worse. So I went to see my doctor and he took me through a series of physical exercises. He did all the neurological soundings that a doctor would do and he said the only thing that he had determined is that I was suffering a relapse from the viral infection of Zika.


I asked him if there was any manifestation of GBS, because I had heard about this disease. He said you seem to be showing signs of Guillain-Barré Syndrome, but not the typical signs. Because GBS symptoms come through the toes, up legs, up to the waist and you are paralysed.


He said that if it was in fact GBS, I would not have been able to make it up the steps and I would not have been able to drive there. But he was not ruling anything out.


By the Wednesday afternoon I was in serious pain, from the top of my head to the bottom of my feet. I went back home. My doctor was consulting with another doctor and told me to keep in contact with him and monitor this thing as best we can.


"On the Thursday morning I got up early to go to the bathroom and I fell like a sack of potatoes. There was absolutely nothing beneath my feet. I realised at that time that something was fundamentally wrong. I sent for a walker because I realised that the only way I could move was with a walker.


So, between the Monday night when I came back to Jamaica, full and running up and down, and Thursday, I moved from being a man who was fit and strong, doing everything, to being almost like a baby. The pain threshold increased.


On Friday I was unable to keep down anything. All my facial and my oesophagus muscles began to get very weak. I said that I must have some solids, and when I began to eat the solids — breadfruit and ackee — and chewed it almost to a pulp, I could swallow nothing at all.


On Saturday, the doctors conferred with me and said, ‘Delano, you have to be hospitalised.’ I was brought here — the Tony Thwaites Wing of the University Hospital of the West Indies — on the second of July. I could not brush my teeth, put on any clothes, absolutely nothing that I could do that ordinary people would do.


I had cramps in my hands, so the level of my compression could not be assessed. I am using a toothbrush, for example, I’m using the flipping toothbrush and it went south. I took up the hairbrush to brush the little hair that I don’t have, and I don’t know how it defied the law of gravity, because while I was coming towards my head, the brush went the opposite direction…


The doctors at the hospital said they had to treat with this thing urgently. They did all the tests they thought appropriate. They did not rule out GBS, but they determined that whatever I was afflicted with was caused by Zika because that was the only viral affliction that I was troubled by.


Later they were able to determine definitively that it was Guillain-Barré as a consequence of my having Zika. Of course, from the literature, there is a raging debate out there as to whether, clinically, there is any connectivity between Zika and GBS. But more and more the conclusion is being drawn that the increase in Zika cases has led to an increase in the number of GBS being seen in Jamaica.


To determine that I had GBS, they did two tests — a lumbar tap in which they pulled fluid from the spine, using a needle; and a nerve conduction investigation by a neurologist. They prescribed a drug called immunoglobulin, or IVIG, which is administered intravenously.


The neurologist looked at me said ‘Delano, you are lucky to be alive.’ One morning about three o’ clock I could not feel my feet and I thought I was having a seizure. I pressed the panic button and the nurse came in and said, ‘Mr, you don’t see that your foot is stuck?’ (between the bars of the bed). It was black as ever. I just did not feel anything.


Zika weakens your immune system and lays bare any underlying health conditions which you may have, such as hypertension, diabetes, and brings them to the fore. I had a filling 12 years ago and suddenly developed an abscess. They had to rush me by ambulance to the dentist.


And this is why, although I am a very private person, especially when it comes to my health, I felt compelled to tell this story. This drug is distributed by the National Health Fund (NHF) through respective pharmacies on demand. It is administered based on the patient’s height, weight and some other clinical things that the doctors take into consideration.


In my case, I had to have five sessions of IVIG, which meant eight bottles a day over five days, or 40 bottles between Wednesday and Sunday. Each bottle cost $85,000! Do the multiplication and you see what I am talking about. I have gone through the 40 bottles.


The question I raise and ask is that, fortunately for me, because I’m in business and practise as a lawyer, I am able to pay for it. How are the others being afflicted by GBS able to afford it? I am not aware that this drug is one of those listed as a category by the NHF to be covered by NHF insurance. For example, I am an NHF insurance carrier, but my NHF card does not cover this particular drug.


What cemented it in my head is that my neurologist said to me that in the last two weeks he has seen 39 people suffering from GBS, three of whom have died. The specialist has projected that a large number of Jamaicans will eventually get Zika over the next several months, with a substantial number going on to get GBS. That will be heavily impacted by rains, so they are hoping that we will not have consistent rains.


A friend of mine who is in media came to visit me, and when she heard of my details said one of her neighbours had died just the night before and had suffered the same symptoms of the same thing. Since being hospitalised, I am hearing so many similar stories of people suffering the symptoms of GBS, including from a prominent church leader.


He said the information was not being publicised because no one wanted to cause any panic. I can understand where he is coming from, because to manage a health panic is not easy. But, at the same time, it has to be balanced by information that is going out in a way that helps people to take the matter of Zika very seriously, and not do as I did by not realising how serious it was, or what it could have led to.


I asked the neurologist what could happen between the time you lose all your muscular and your neurological sensations and you lose your legs to death. He said it could be a matter of hours, and it depends on when the critical intervention starts.


Many private practitioners don’t know GBS and can’t diagnose it so they prescribe soothing medicine. It is when I collapsed and the tests were done that I was diagnosed. It was when I started to hear these stories that I realised that this thing was beyond my personal situation. I am raising all of this from a public policy standpoint.


I am able to deal with it early because I am in a position to be able to. Beside the cost of the drugs, there are the hospital fees, the specialists, physiotherapy, and the loss of income from not being able to work. But what of those who can’t?


And I’m not hearing anybody speaking of it in a national way. Across the board, I don’t believe there is an appreciation for what is happening out there. I have shared from a personal perspective with the ministers of Government and politicians from both sides who have visited me.


  

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