In one of the great medical tragedies in modern history, well-meaning Egyptian authorities are believed to have infected millions of people with hepatitis C.
Swaddled between two arms of the river Nile, the delta is a place where everything seems to grow. Sunflowers line roads; shallots, bulbs as big as fists, sprout from the soil. Miles and miles of canals feed thick blankets of green.
Only a few hours north of Cairo, El Tod sits off a road that shifts from dust and sand to lush patches of vegetation. Camels stand tied to posts near produce carts and butcher shops where suspended animal carcasses hang outside like potted plants. News in this village is still passed from neighbor to neighbor — and the people in each story are usually known to all.
“Are you looking for the El Sayeed family?” asks a man walking beside my car, which has slowed to a crawl. He leads me down a garbage-strewn alleyway, past kids playing, to the El Sayeeds’ modest apartment. A steady wail signals sundown — a time to pray.
On this particular evening, most of the El Sayeed family is crowded into one room waiting for me. Hamdy, the father, is present only in a framed picture on the wall. The 50-year-old man lies in a hospital bed on the outskirts of Cairo. His neighbors know why he isn’t at home. They also know why Hamdy’s cousin doesn’t show up at his clothing store on some days — probably feeling too weak — and why yet another cousin, Hamed Zayed, stayed in El Tod instead of moving to Saudi Arabia as he had planned. The reason? Zayed did not pass the blood test required to work in Saudi Arabia. Like those of many others in town, his came back positive.
The disease infecting the El Sayeeds isn’t AIDS. Their medical records tell the story of another blood-borne pathogen — the hepatitis C virus (HCV) — which has its grip on this region and 130 million to 170 million people worldwide. The virus is spread mainly by blood; everything from intravenous drug use to tattooing and body piercing is a common vehicle for transmission. Globally, HCV is three to four times as prevalent as HIV, and there is no vaccine to prevent it. Yet, perhaps because it is a benign companion for the majority of carriers, HCV has not received a great deal of attention as a major public health issue.
The number of people worldwide with this highly contagious virus will continue to climb until 2015 to 2035, according to estimates from the World Health Organization. And many cases have fatal consequences. In the United States, 8,000 to 10,000 victims of HCV die each year, and the number of Americans who are waiting for a liver transplant has increased almost sixfold over the last decade, according to the United Network for Organ Sharing. Unless organ donations increase drastically, the organization’s officials warn, there won’t be enough livers to go around when they are desperately needed. There aren’t enough even now.
“Hepatitis C still doesn’t have the pizazz of AIDS. It doesn’t drive countries to do something,” says Harvey J. Alter, chief of the infectious-disease section at the National Institutes of Health. “But in point of fact, it’s a huge global problem.”
Egypt, with 12 to 15 percent of its population estimated to carry the virus’s antibodies, hovers near the top of the global HCV chart. (In the United States the percentage is 1.8.) The El Sayeeds live in a region that lies at ground zero in the HCV crisis. Studies of villages in the Nile Delta show that about half of the residents older than 35 have the virus or have had it in the past.
“We heard about it two years ago,” explains Hamdy’s brother, Moawed El Sayeed. “We heard about it but didn’t see no one sick of it. Now many, many have hepatitis — I feel that if I do the test, most likely it’s positive.”
The viral time bomb is set to go off in Egypt — and the United States — in the next few years. And yet most people who are chronic carriers do not know they have it. In some cases, people in Egypt know they are ill but aren’t able to distinguish the virus they carry from the other alphabet of hepatitises — A, B, D and E.
Making matters worse are the prohibitive cost and limited effectiveness of treatment with the latest antivirals. In a dilemma similar to that caused by HIV, it is not possible in Egypt to provide the drugs to all who need them. A further complication is that liver transplants are basically not an option here. Procuring livers from the dead is culturally taboo in Egypt.
The country’s burden — in the sheer number of victims and the hurdles to treatment — makes Egypt a worst-case scenario worthy of global attention. Indeed, Egypt is a laboratory for the world’s HCV researchers: Epidemiologists are monitoring the largest group of patients here as they approach the time — decades after infection — when malignancies such as cirrhosis or liver cancer tend to occur.
But Egypt’s tragedy also has a unique aspect that other countries are unlikely to encounter: The virus is believed to have been spread here, unintentionally, through improperly sterilized syringes used by government health workers to treat millions for bilharzia, a debilitating illness that was sickening farmers and others who lived around the Nile. The government medical campaign, now thought to be largely responsible for the HCV epidemic, took place before hepatitis C was identified. Epidemiologists now contend that it may be the medical community’s largest transmission of a blood-borne pathogen in history.
Any outrage over the fact that this country’s misfortune can be attributed, in large part, to the actions of its government, has been largely absent among its citizens, most of whom see their plight as the will of Allah. And talking about the campaign against bilharzia, and its disastrous impact, makes Egyptian officials extremely uncomfortable; even those doctors researching the issue admit there’s a problem, but they play down any grave ramifications. The “healthy” are routinely pointed out to visitors; the “ill” are barely acknowledged. Liver specialists say they have been fearful of speaking out for fear of losing their jobs or seeing their programs eviscerated.
Researchers from the University of Maryland — who published a study three years ago in the Lancet linking the prevalence of hepatitis C in Egypt to actions of its government — worry about discussing the disease’s impact. The university has a Cairo-based hepatitis C prevention project, which has been examining the routes of transmission.
“When the paper originally came out, there were headlines saying, ‘Ministry of Health infected millions with hepatitis C and dirty needles,’” says Dr. George T. Strickland, the director of the University of Maryland’s international health division as well as a coauthor of the study. “It was embarrassing to them and unfair because it’s retrospectively looking at something that was meant to do great good and ended up harming. The sensationalism has made everybody fearful.”
Indeed, when a doctor who studies HCV learned that I met with patients suffering from the virus, he was panicked, and then tough. “Which hospital did you go to? Who let you in? You then went to the delta? Who did you go with?” he asked in a rush.
“People in Egypt don’t want to talk about problems,” says Dr. Frank J. Mahoney, director of the U.S. Naval Medical Research Unit No. 3′s office in Cairo. “No one has been willing to step forward like the way [former U.S. Surgeon General] C. Everett Koop did in the U.S. [for AIDS]. It wasn’t until Koop came in and said, ‘This isn’t a gay disease; it’s a disease of everyone in America’ that the debate changed.
“No one has done that here,” Mahoney continues. “Someone needs to stand up and do that.”
As Mahoney’s comments become increasingly bold, he is interrupted several times by a colleague who wants to make sure that he is fully cognizant of what he’s saying. He thinks about it and says he is.
“[Egypt] is the world’s laboratory for studying hepatitis C,” he says. “Unfortunately, it’s not the laboratory for prevention. And it’s frustrating because it should be.”
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The same waterways that give so much life to the verdant Nile Delta are also home to a parasitic worm called the schistosome. Its underwater attack on the El Sayeed family members occurred on the most blissful of days — when, as children, they would congregate at the Ferhashe canal for swimming and picnicking. The Ferhashe, which runs just outside town, is one of the only respites from temperatures that soar into triple digits.
The schistosome enters the body in the soft webbed area between the toes. It then infiltrates the bloodstream and lays eggs that settle in organs like the liver, bladder and intestines. A buildup of these eggs — which causes the disease called bilharzia, or schistosomiasis — can lead to bladder cancer and sometimes death. Bilharzia’s most famous victim is Abdel Halim Hafez, a beloved singer who died from complications from the disease in the 1970s. These days, his music, which still blares on the radios of passing cars, serves as one of the few reminders that the disease was once a scourge here.
At the time that bilharzia was a problem, Egypt was the hardest-hit country in the world, and in agricultural areas like the delta, where residents rely on water for farming, bilharzia had infected 70 percent of the residents of some communities. Many members of the El Sayeed family, including Hamdy, fell ill. It was in response to this epidemic that the government launched a national campaign to treat those with the illness and prevent others from suffering.
“Schistosomiasis killed people — they could not walk, they had bleeding from the mouth, they found really young people dying,” says Dr. Mohamed Abdel-Hamid, in his Cairo office of the University of Maryland School of Medicine’s Viral Hepatitis Reference Laboratory. “That’s why people started this campaign. During this time, they didn’t even know of something called HCV.” Hepatitis C wasn’t identified until 1989, at which time it was renamed, dropping the highly ambiguous “Non A, Non B Hepatitis.” Blood wasn’t adequately screened for HCV until three years after that.
When the government combated bilharzia, patients lined up to receive 10 to 12 shots of tartar emetic to kill the blood flukes. Although the anti-bilharzia campaign dates back to the 1920s, it ramped up in the 1960s. The delta’s high prevalence of HCV may be explained by the fact that the campaign lasted the longest here, until the mid-’80s, when oral medication replaced the intravenous.
“[The swimming] was nice, but if I would have known that it would have caused me this illness, I would have thought differently,” says Hamdy El Sayeed. The yellow cast of his skin and eyes, the result of cirrhosis, stands out in contrast to the white prayer cap and tunic that he wears in the hospital.
Hamdy first felt the pathogen’s effects 25 years ago. A fatigue descended on him and, like a shadow, followed him everywhere. Then the color of his eyes changed. Someone told him that sugarcane, marmalade and honey — whose healing properties are noted in the Quran — could cure these mysterious ailments. And it seemed to work. Hamdy repeated this regimen for years, until the day when all this sweetness couldn’t erase the ever darkening yellow of his limbs and torso. Simple activities like walking became a chore. When he finally sought medical attention and was tested for hepatitis C, it was positive. Three months later, he ended up at this Cairo hospital.
“What increases the death rate is people present themselves too late,” says Dr. Hesham Dabbous, assistant professor of tropical medicine and liver diseases at Ain-Shams University. “I see it every day. You have a perfectly healthy life with no signs of disease or symptoms. The liver is damaged silently and the patients come in with end-stage liver disease like cirrhosis, digestive bleeding, liver cancer and liver failure.”
Over the last decade, cirrhosis has increased substantially in Egypt, and liver cancer has risen in rank to be the third most common cancer. About six years ago, doctors at the Cancer Institute in Cairo used to see one case of liver cancer a week or every other week. Now they see one every day. By comparison, it is not even in the top 10 cancers in the United States.
For the majority of its carriers, the hepatitis C virus is not life threatening. Doctors don’t understand why an estimated 20 to 50 percent can rid themselves of HCV — with antibodies left in many as the virus’ sole calling card. They don’t understand why it leads to serious complications such as cirrhosis and end-stage liver disease in 20 percent of the patients. To those individuals, this virus can be just as crippling as AIDS, and some wither away to little more than skin and bones. And researchers are not even close to finding a vaccine.
“Is it frustrating?” asks Dr. Robert Purcell. The chief of the hepatitis viruses section at the National Institute of Allergy and Infectious Diseases, Purcell has been traveling to Egypt since 1997 to research the virus. “I have been involved in the development of a vaccine for hepatitis B, hepatitis A, hepatitis E. And all of them are a hell of a lot easier than hepatitis C. You do all the right things and still it doesn’t work. Just like HIV.”
In the United States, doctors commonly prescribe antivirals for their patients with HCV. The drugs peginterferon and ribavirin, taken over 48 weeks, can help 55 percent of the patients rid themselves of the virus for at least six months after treatment. But the therapy varies in effectiveness from genotype to genotype, and it is so expensive it may not be feasible for a country like Egypt to cover the costs for all of those in need.
Dabbous, of Ain-Shams University, says one of the most trying aspects of his job is witnessing the disease progress in those patients whom he cannot offer much more than unproven vitamins and Chinese herbs, or procedures to allay their pain temporarily. But antivirals — which are not as effective in the genotype most common in Egypt — cost $20,000 for a course of treatment. They tend to reach only a small circle of people who can afford to pay or whose insurance covers it. Beyond that, Egyptian officials say that perhaps more will be gained if the money is spent on prevention.
“I think everybody in Egypt knows there’s a problem with hepatitis C,” says Dr. Mohamed M. Zahran, professor of urology at Cairo University and chairman of health board of the opposition party, Al Wafd. “Their relatives or cousins have it. You can’t hide it. [The government] should face the facts by calling for financial aid. We need the help of other countries, like the United States and Europe, to treat our patients.”
Dr. Zahran says that Egypt needs the international community’s help in controlling this disease. He says there should be assistance to pay for medicine and organ transplants. This would ostensibly reduce both transmission and morbidity rates. But even officials from the World Health Organization contend that it’s not that simple. Besides the huge financial cost to a poor country like Egypt, where antivirals might work in about 50 percent of the cases where they can be used, the treatment has severe side effects, such as depression, personality changes, debilitating fatigue, nausea and weight loss.
And there are cultural and spiritual barriers to the effective prevention and treatment of HCV in Egypt. Ignorance about its origins and transmission is rife; fatalism about the chance of contracting it creates recklessness and a dangerous climate of resignation. And strict cultural ideas about transplants mean that survival for the hardest-hit victims is almost impossible, unless the person can travel abroad for the surgery.
Walking through the corridors of the liver unit of a public hospital on the outskirts of Cairo, it’s difficult to ignore the men, weak from the virus, sleeping in fetal position. It’s equally impossible to deny the virus’s impact while sitting by Talaat Hassan’s bedside and listening to the toll it’s had on his life.
“I am not in contact with my children because of fear of infecting them,” says the 54-year-old father of three, his eyes glassy. “I’m isolated in a different room and try to decrease hugging and kissing. I eat alone and live alone while the family is in the rest of the house.” As he speaks, a tube drains liquid from his distended belly into a Siwa water bottle. Too much fluid in the abdomen swells the midsection to the curves of a woman nine months pregnant. The drainage helps alleviate the pain for about one week.
Doctors have repeatedly informed Hassan that touching won’t transmit hepatitis — only blood-to-blood contact will — but the situation at home remains the same. He isolates himself from his loved ones despite the heartbreak that it causes everyone involved.
“Our communities aren’t very well educated,” says Dr. Soraya A. Sharaf, head of parasitology at the National Liver Institute and vice dean for environmental affairs at the Menoufeya University. “So you need to convey the message that it’s blood. They think it’s only major procedures that cause it.”
Hamdy’s cousin, Zayed, who couldn’t go to Saudi Arabia, believes he may have contracted HCV from dental surgery, though, like most people, he can’t say for sure. “I didn’t have any symptoms before the blood test,” Zayed says as he sits on a couch, squeezed in between his male cousins. “And I still don’t have any.”
Zayed is representative of another class of individuals with the virus. They didn’t contract it from the bilharzia-treatment campaign, but sometime after, once it took hold in the community and continued to spread. It’s almost impossible to trace the source of infection for these people, especially since many patients can go years without knowing they have it. And because so many practices inherent to village life involve shared blood, it is extremely difficult for doctors to identify specific risk factors. The possibilities are endless: Could families share toothbrushes? Go to the same community barber who doesn’t sterilize his equipment? Pass around the gouza, a water pipe, when some may have gingivitis? Have babies circumcised by nontraditional health practitioners?
“So you have this huge pool of infected people, living, aging, with HCV,” says Mahoney of the U.S. Naval Medical Research Unit. “[Say] you go to the barbershop and people have HCV, and you get a nick. Things that are low risk in a low-prevalence country become high risk.”
But the high potential for contracting the virus doesn’t create much anxiety; nor does having the virus create much anger or fear. Zayed is feeling fine, so — like many others who are antibody-positive — his only complaint is that he missed an economic opportunity by staying in El Tod. His acceptance is not particularly unusual. Even those who were most likely infected by their government’s medical campaign feel this way. “We believe it is all from Allah,” explains Moawed El Sayeed, Hamdy’s brother. “No one can prevent it.”
Public health officials say this belief makes their job — altering a population’s behavior because of a disease’s threat — that much more challenging.
“Usually Egyptians are fatalistic,” says Sharaf, the parasitology expert. “They may think, ‘I may catch this anyway.’ They are very religious but it makes them a little too fatalistic, so they’re not careful enough. This concept has to be passed on to them: Do your part, protect your family, your children, and then be fatalistic.” Protecting oneself can be as simple as not sharing needles for the administration of medication and using orally administered drugs as an alternative.
On the second floor of the National Liver Institute in Shibin El Kom, which sits in Minufiya at the heart of the delta, Dawood Faragiskander, a frail man who looks to be in his mid-50s, is slowly dying. He wears a red jogging suit that almost mocks the state he’s in, one in which he can barely talk. “In 1996, I would smoke and it would hurt in my abdomen,” says Faragiskander in a hushed tone that is more of a whisper. “[The doctors] didn’t discover hepatitis C until I started vomiting blood.”
His brother reveals Faragiskander’s I.D. card — he is pictured wearing a big cheeky smile, a bow tie and a dinner jacket. Now his skin looks more like a loose canopy tent, caving in where there are no bones to hold it up. The I.D. also shows how old he really is — only 39. “He’s been here since Sunday,” says his wife, Amal Aziz. “We came here because we heard this is the best place.”
Faragiskander has end-stage liver failure and has just waked up from a coma. Like most other people in the hospital here, he is not alone; his brother, and wife wait by his side.
“Can you do anything to help him?” asks his brother Samir, helpless, as he and the others start crying. “We are willing to give everything we have. We just want him cured somehow.”
The family knows that a transplant is the only thing that can possibly save him. Faragiskander came in too sick for doctors to do much more. But what the family doesn’t know is that the country’s largest liver institution doesn’t even perform them at this time. Same with the National Cancer Institute in Cairo.
Cultural and religious opposition to removing organs from the deceased has kept Egypt from recovering livers from cadavers. The only treatment option has been the partial liver transplant, in which doctors take a lobe from a healthy donor, and then place the reddish-brown organ into the person in need. But the surgery is prohibitively expensive — hundreds of thousands of dollars — and difficult to justify because it jeopardizes the healthy donor’s life. A healthy man died last year following surgery at New York’s Mount Sinai School of Medicine.
The partial transplant also doesn’t guarantee that the virus won’t invade the new liver, leading to failure once more. Nonetheless, doctors at both the Liver and Cancer Institutes say there are plans to begin split liver transplants in the near future. And some private hospitals have recently begun to do so as well.
It’s too late for Faragiskander. He died a few weeks after I visited. He leaves two little girls, a wife, and a family without their main breadwinner.
During that time I also visited Hamdy in the hospital, where he drifted in and out of sleep. He looked tired but happy and talked about how much he missed his daughter. Asked if he is angry about contracting the illness, he said nothing but pointed up, to the heavens. There was no talk of reparations, no demand of the government, no grievance with anyone. “It’s up to destiny,” Hamdy said. “It’s up to God if we should find treatment now.” Soon afterward, he died.
Dawn MacKeen covers health for Newsday. More Dawn MacKeen.
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