Finding a Fall Guy for Middle East Respiratory Syndrome

From the movie The Maltese Falcon:

We’ve got to have a fall guy… I’m in this up to my neck. I’ve got to find somebody, a victim when the time comes. If I don’t, I’ll be it. Let’s give them the gunsel… Wilmer! There’s our fall guy. ~ Sam Spade

Well, Wilmer, I’m sorry indeed to lose you, but I want you to know I couldn’t be fonder of you if you were my own son. Well, if you lose a son, it’s possible to get another. There’s only one Maltese falcon. When you’re young, you simply don’t understand these things. ~ Kasper Gutman

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Prominent officials in the World Health Organization and Saudi government point at surprising villains allegedly standing in the way of international efforts to combat the spread of Middle East Respiratory Syndrome Coronavirus (MERS-COV): (1) The doctor who first recognized the deadly new disease; and (2) The medical center which quickly identified the virus.

“Why would your scientists send specimens out to other laboratories on a bilateral manner and allow other people to take intellectual property right (sic) on a new disease? No IP should stand in the way of you, the countries of the world, to protect your people” said World Health Organization Director-General Margaret Chan last month to the World Health Assembly to “thundering applause.” Saudi Deputy Health Minister Ziad Memish told the same gathering that patents were hindering critically needed research on the disease.

However, there may be another answer to the Director-General’s rhetorical question: perhaps the actions were taken to find a cure. It’s impossible to know for sure, but intriguing clues imply that the two nominated fall guys face a bum rap.

In June, 2012 Dr. Ali Zaki an Egyptian virologist working in a Saudi hospital was asked to examine a patient suffering from strange symptoms. The patient died the next day. When a second case appeared, Dr. Zaki recognized the seriousness of the situation and that immediate action was required. What he did next is the subject of the dispute.

Working in his lab, Dr. Zaki was able to confirm that the virus was related to that causing the common cold, but potentially far more deadly. Dr. Zaki says that he notified the Saudi Ministry of Health, which tested his sample for swine flu and then stopped.

Dr. Zaki sent a sample to internationally recognized expert Dr. Ron Fouchier at the Erasmus Medical Center in Holland. In September, 2012 after the virus was sequenced and results were confirmed Zaki posted a notice warning of a new disease on ProMED, the international disease alert system operated by the Infectious Diseases Society of America.

Meanwhile doctors in London were mystified by a Qatari patient who had recently arrived from Saudi Arabia suffering from acute respiratory distress and kidney failure. Luckily, one chanced upon Dr. Zaki’s ProMED notification, and quickly isolated a sample. It matched the virus identified by the Erasmus Medical Center from Dr. Zaki’s patient.

The Saudi government said they were not notified by Dr. Zaki and knew nothing about the new disease in their country until they saw the ProMED notification.

Dr. Zaki was warned that he was in serious trouble, fleeing to Egypt in fear for his safety. The Saudi’s then officially fired him. Zaki reported that they also closed his lab and asked that all materials be destroyed.

[Joe-Allen]

Dr. Fouchier, Dr. Zaki and others co-authored a paper on what was named Middle East Respiratory Syndrome for the November 2012 issue of The New England Journal of Medicine. The disease caused 22 deaths and had spread to at least seven countries.

A story “Find the germs, don’t sack the messenger” says that few in the world could match Dr. Fouchier’s ability to identify a new virus, which his team did successfully for MERS-COV. “You can almost understand (Saudi) officials being upset about news of a novel virus a few weeks before millions of visitors arrive. Because of the prompt action, it was quickly established that the virus probably doesn’t transmit among humans. In October Memish could assure pilgrims that it posed little risk.” See Find the germs, don’t sack the messenger.

The “prompt action” was taken by Doctor Zaki and Erasmus Medical Center. Their actions could prove even more important to world health than the story indicated: the virus now seems to be spreading through human contact.

The Saudi’s asked that the new disease not be named in the traditional manner after the country in which it is discovered. Hence, it is Middle East Respiratory Syndrome, not “Saudi Syndrome.”

A follow up report last month (“As MERS-COV spreads, frustration at lack of info grows”) faults the Saudi’s for a lack of information on the spread of the disease in their country.

Dr. Fouchier said Erasmus offered assistance for testing and analysis to the Saudis, but their help was not accepted. See As MERS spreads, frustration as lack of information grows.

The seriousness of the situation finally led the World Health Organization to issue an unusually blunt statement to the Saudis that better reporting is urgently needed, particularly with Ramadan starting in July and the Hajj in October. WHO calls for urgent search, warns Saudi might be spreading.

However, the real focus of WHO and Saudi ire appears to be the existence of an Erasmus patent application on “the use of the sequence and host receptor data,” and the associated Material Transfer Agreement (MTA). The Saudi Deputy Health Minister seemed to blame the slowness of their subsequent actions on the patent application. When questioned about his assertion, the

Deputy Minister admitted that his frustration was mainly targeted at the Erasmus’ Material Transfer Agreement which he hadn’t actually read, instead relying on what he had heard from some scientists. He also admitted that the MTA had not impeded research in Saudi Arabia.

An independent review of the claims that patents and the MTA are hindering international MERS-COV research appeared in a May 28, 2013 story in Science Insider. Here’s the lead:

Are Dutch scientists hampering the fight against a lethal new coronavirus by patenting the virus and making it needlessly difficult for other scientists to study it? Accusations to that effect were flying last week at the World Health Assembly (WHA), the annual meeting of the world’s health ministers in Geneva, Switzerland. Margaret Chan, the director-general of the World Health Organization (WHO), used strong words in an apparent attack on virologist Ron Fouchier and his colleagues at Erasmus MC in Rotterdam, the Netherlands.

But there is nothing unusual about the arrangement under which Fouchier has shared samples of the virus, several scientists and an intellectual property expert tell Science Insider. And so far, nobody has offered concrete examples of how the legal arrangements have slowed down research. The criticism is “completely unjustified,” says Christian Drosten, a virologist at the University of Bonn in Germany who has developed diagnostic tests for the virus. “Nothing was blocked.”

Further, The Financial Times began a May 24, 2013 story on the controversy this way: “Leading international research groups have cast doubts on claims from Saudi Arabia that patenting of a lethal new virus first identified in the Gulf hinders diagnosis of patients.”

The article adds: “Public Health England said its speed in developing a diagnosis within 10 days of the discovery of the second infection and sharing it with the international community was ‘unprecedented’ and not impeded by patenting.”

In a bizarre twist, on May 29 (less than a week after Deputy Minister Memish blasted the patent application and MTA for hindering research)The New England Journal of Medicine published an article on the MERS-COV virus providing critical family cluster data necessary for containing and curing the outbreak. The study’s lead author– Deputy Minister Memish. Family Cluster of MERS.

Erasmus Medical Center said they had an “ethical obligation” to file for a patent because without intellectual property protection no company will develop badly needed vaccines or diagnostic tests. Erasmus added that they share the virus with anyone wanting to do legitimate research for free, and had not denied any requests to research organizations signing their standard Material Transfer Agreement. The MTA insures that the virus will be handled safely and will not be further distributed to third parties. It also restricts commercial use of the virus without permission. Forty research laboratories around the world have received samples of the virus from Erasmus.

Science Insider speculates that a key issue of the dispute is whether Saudi Arabia will benefit from the development of a cure. Erasmus says that it was not aware of the dispute between Dr. Zaki and the Saudi’s, and has always been willing to share any benefits they receive.

So are the attacks on Dr. Zaki and Erasmus based on the international health bureaucracy’s general disdain of intellectual property coupled with a desire of the Saudi’s to divert blame from their alleged slow response, together with an effort to get a cut of any resulting royalties? It’s hard to say for sure.

However, when so many accusations don’t hold up to scrutiny, it suggests another quote from The Maltese Falcon: “I certainly wish you would have invented a more reasonable story. I felt distinctly like an idiot repeating it.”

EDITORIAL NOTE: Since Joe Allen submitted this article the issue of MERS has become even more topical. See Businessweek and Washington Post.