How to make Parkinson's Disease crueler.

Parkinson’s disease is cruel. There is no better adjective to characterize the disease other than cruel. But my country, the United States of America, accomplished something I thought not possible. We made the impossible possible. My country was able to make this disease crueler.

I found out how cruel when my precious wife was being treated for that disease. It was a Monday morning in the grand lobby of the Neurological Center at the University of Florida in Gainesville that I learned how to make Parkinsons crueler. That morning in February 2015, my wife had just been diagnosed with Parkinsons. It turns out that a young Iranian intern had convinced Mariam’s doctor, Dr. Okun, to go to Tehran earlier that year. That intern was introduced to my precious Iranian-born wife. That Monday morning, while we stood next to the elevator banks in that lobby, the intern turned to Mariam and said, “You know medications for Parkinsons is not available in Iran”. Mariam cocked her head and said, “Really?” then shook her head in disbelief. Medical science has, for over fifty years, been able to make Parkinsons less cruel. The way to make it crueler is to preclude that medication getting to sufferers of that disease. That is how my country made the impossible possible.

After I lost Mariam to complications related to that disease, I went in search of how we made that disease crueler. The reason was easy to find. Through a link at the National Institutes of Health’s website I found a study published June 6, 2016. That study estimated that six million Iranians suffered because of the lack of medications. The reason was sanctions. That is how we made the impossible possible.

Just as I was hit in the face with this issue in that lobby, I was hit in the face again in May 2017. I had started exchanging private messages on Facebook with a young Iranian, his name is Omid. There was a posting related to the US Vincennes shooting down Iranian Air 655 and killing 290 people. An Iranian and I had a difference of opinion regarding the incident. I got a private message from Omid, “Sir, please do not pay attention to that jerk. I do not want you to think ill of Iranians”. I assured Omid that was not the case then I went to his face book wall. There was a video of him trying to eat. His arms and shoulders were flailing around uncontrollably. Turns out he had a Parkinsons-like illness. I asked him about medications. He said he was lucky because, although sanctions forced him to go to the black market to get the meds, his insurance paid for it. The price was around $5,000/month. After I told him my wife had Parkinsons he fired off several questions about deep brain stimulation which is where wires are inserted into the brain to try and control the motor problems with his illness. He wondered if those wires that connected his brain to a battery would be available in Iran or whether sanctions precluded his being able to purchase them. I did not know the answer.

Omid was not the only person that told me of problems that day. I got another private message from a friend whose wife is a doctor in Tehran and he asked me if I was still working on the medication/sanction issue. When I said yes, he reported that an Iranian minister had just stated there were 30 medications still in short supply. That same day I had another exchange with a friend, Amir, who is a drug salesman for an international drug company. I asked Amir about this issue. He informed me that he is forbidden to even talk to his American counterparts in the pharmaceutical industry for fear of sanctions. He knows that because of sanctions certain cancer medications are not available and “people are still dying needlessly as a result”.

So, what is the deal? That aforementioned study clearly concluded people had indeed died because of sanctions but Congress conveniently puts that one sentence in sanctions legislation that states that this legislation is not to impact humanitarian aid. That should fix things, right? OFAC (Office of Foreign Assets Control) issued new regulations in December 2016 that makes it easier to license the sale of medicines and medical devices. After these new regulations that Iranian hospital is NOW allowed to purchase more than ONE replacement part for that American made CT scanner and NOW the staff of that American manufacturer of that scanner can actually TALK and offer training to the Iranian techs in Iran. So that should fix things, right? Why does Omid need to pay big bucks to the black market for medications and why are people dying of cancer when medications are available? There are several problems.

Along my journey into the land of sanctions/medicines I encountered Bert Sacks. Bert Sacks became a celebrity when the US government fined him $10,000. The US Government sued him because Bert, blatantly, transported $40,000 worth of medicines to Iraq. Bert had to. After he became aware that sanctions were causing the death of Iraqi children due to lack of medicine he had no other choice. The numbers vary but it was estimated that as many as 500,000 children died as a result. Secretary of State Madeleine Albright famously stated that the price of 500,000 dead children is worth it if it gets rid of Saddam Hussein. Bert told me, the problem you are going to have is your average American will see Iran and the only thing they see is ayatollahs just as they saw Iraq as 37 million Saddam Husseins. Bert is right. Americans will never see 275,000 sufferers of Parkinsons in Iran. And it is far less likely they will see those 15,000 Omids desiring those wire leads.

Despite that one line in sanctions legislation and despite the “make nice” revisions to Treasury’s regulations, there are problems. People died and suffered because of the US government sanctions. I cannot imagine the pain in seeing your loved ones when their limbs are trembling uncontrollably, and they cannot feed themselves because my country made Parkinsons crueler. The dead and suffering will remain in the hearts of those family members for the rest of their lives. I know this to be true. Mariam will be in my heart as long as it beats. The difference is Mariam had medicine and those six million Iranians did not.

At a conference in DC in October 2016, I heard story after story after story of the medication/sanction problems. It was absolutely heart breaking. But, beyond those stories, I heard something else. It was at that conference I heard two other problems. A lawyer distilled those medication/sanction problems perfectly. He said, “OFAC” and “Iran is toxic”. One year and four months later, I found he nailed it.

OFAC, in the words of one Secretary of Treasury, is the most important agency in the Federal Government that no one has ever heard of. It controls whether an American plant scientist can attend a conference on forest blight in Iran. It also controls the flow of everything from paperclips to flower seeds to airplanes between the US and Iran. Just ask the Illinois Seed Company that was fined over $4 million for selling $400,000 worth of flower seeds to Iran.

OFAC also controls the flow of medicines. There is an easier pathway for the sale of medications and it is called a “general license” and there is a harder pathway known as a “special license”. For reasons of national security, Parkinsons medications requires a special license. This medication has been in use since the 1950s to treat Parkinsons. I have tried to find out why the national security of the US is so imperative that we require the export of this Parkinsons medication to undergo an extremely complicated export procedure, but I failed. I asked Senator Kaine’s office to help but that failed also (details at OFAC is a black box. A cruel black box.

Listen to John McCain, Tom Cotton, Chuck Schumer, Ed Royce, Donald Trump, George Bush, Jon Bolton, etc., and you will learn Iran is composed of 83 million ayatollahs. That is how US foreign policy works. Our actions are always directed at governing elite. That is why Iran is toxic. But herein lies the problem. We have sanction those ayatollahs for 38 years. And the result is? I can tell you. The only success is we have made the impossible possible. We made Parkinsons Disease crueler. How many American manufacturers of Parkinsons medication are willing to pony up to the bar, navigate onerous OFAC export regulations and make that disease less cruel? When McCain wants to bomb bomb bomb Iran, how many brain wire manufacturers are willing to help Omid? The rhetoric of McCain and his ilk makes Parkinsons disease crueler. They make the impossible possible.

I have a message for my fellow Americans and John McCain. Iran is not composed of 83 million ayatollahs. It is composed of 83 million ordinary people like Omid and the sons, daughters, husbands and wives of those six million Iranians. It is composed of the husband who needed to squeeze through the hallways of that cancer clinic in Shiraz. A hallway crowded with useless medical devices for want of parts. The citizens of Iran deserve better. They deserve our apology and our promise that never again will we allow the aged, the young, the sick and the under privileged to suffer. They are the ones that suffer not the regime’s elite. I pray that the world does not see my country as 326 million John McCains. I would like to think we deserved better. I would prefer to think the world views us as 326 million Bert Sacks. There is one way to help make this possible. We can start by making sure we do not make Parkinsons crueler.

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