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Millions of Egyptians live with the Hepatitis C virus and don’t know it. Blood donation centers know it, but not all of them will tell you you’re sick.
By: Ethar El-Katatney
Hatem Mohammad was only 28 when a relative approached him with concern and told him that his eyes were yellow. One week later, after getting a check-up, he found out that he had been living with Hepatitis C for the majority of his life and had probably contracted it when he was circumcised as a baby. His best bet at staying alive was a liver transplant.
After four years of searching for a donor and spending a quarter of a million Egyptian pounds, Mohammad finally received a partial liver transplant in September 2008.
Mohammad had donated blood several times in the past decade. If any one of the places where he had donated blood had taken the time to let him know he was sick, he would not be in the state he is today.
“I am running for my daily bread,” says Mohammad, who runs a chain of successful koshari shops. “I and Egyptians like myself don’t have time to go for check-ups. [If we donate blood] and you find out we’re sick, […] tell us we’re sick [so] we can save ourselves.”
Blood donations in Egypt have come under the microscope lately, with the company Haidylena making headlines in 2007 when it was accused of providing the Ministry of Health with more than 200,000 defective blood bags, which could have spread diseases had they been used.
In addition to the concern that the blood-borne Hepatitis C virus (HCV) may spread if infected blood is used in transfusions, an additional worry has been raised: If blood donors are found to have HCV and are not being notified, they are at risk of infecting others.
Mohammad’s case is not unique. In Egypt, according to 2003 figures from both the World Health Organization (WHO) and the Ministry of Health, an estimated 10-15 percent of the population — a whopping 8-12 million people — have Hepatitis C antibodies in their bloodstream (meaning they have or have had HCV), making Egypt the country with the highest prevalence rate of the virus in the world. The WHO reported in 2003 that approximately 20% of Egyptian blood donors are anti-HCV positive.
Hepatitis C, which attacks the liver, can be cleared from the bloodstream only if caught very early on; left untreated, it can be deadly.
“It’s ridiculous how when 10 people in Egypt had bird flu the whole country was agitated and Sha’bola [popular singer Sha’ban Abdel Rahim] was singing about it,” says Dr. Hassan Azzazy, chair of the chemistry department at the American University in Cairo. “But when you have 10 million people with a disease that’s almost as deadly as AIDS — both are viruses, both kill the immune system, and [neither] have vaccines — no one pays any attention.”
Azzazy, who has taught at three universities in the United States, is currently developing new diagnostic techniques to detect the presence of HCV at extremely low levels, meaning the disease can be treated earlier. He is also using nanotechnology, molecular biotechnology and bioinformatics — microbiology and information technology combined — to develop new treatments for the disease.
In essence, the problem of HCV has simply become too big to be seen. At the National Hepatology and Tropical Medicine Research Institute, where many HCV patients come for treatment, dozens and dozens of people, most dressed in galabeyyas and abayas, sit on the stairs and floors for hours, waiting with dozens of others to receive their medications or letters authorizing them to receive subsidized treatment.
HCV is transmitted by bodily exposure to blood infected with the virus, for example, through injections with an infected needle, blood transfusions or organ transplants. Substandard practices by personnel who perform medical procedures such as circumcisions can also spread the virus. The WHO also estimates that five out of every 100 infants born to HCV-infected women become infected.
More rare, although also possible, are cases where the virus is transferred via shared personal care items such as razors or toothbrushes that have been in contact with an infected person’s blood. There is also a risk of transmission through sexual relations with an HCV-infected partner, though studies have proven it to be low unless a person has multiple partners, which ups the risk factor. HCV is not spread through food or water, nor is it transmitted through sneezing, coughing or kissing.
According to the WHO report, some 40 percent of people infected with HCV recover fully; the rest become chronic carriers of the virus. About 20 percent of the chronic carriers develop cirrhosis, scarring of liver tissue. Of those people, up to 20 percent develop liver cancer. HCV is one of the top five causes of death in Egypt. Both cirrhosis and liver cancer require liver transplants for the patient to survive, but even then the liver will become reinfected after 5-7 years.
Part of the reason Egypt has so many carriers of HCV, according to the WHO and Ministry of Health, is due to government campaigns between the 1950s and 1980s treating rural populations for schistosomiasis, also known as bilharzia, an endemic water-borne parasitic disease present in the Nile River. The treatment was given by injection, and glass syringes were re-used extensively without proper sterilization. Bilharzia treatment today is pill-based rather than intravenous, while plastic disposable syringes have eliminated the problem of HCV transmission by syringe. However, latrogenic infection (through medical or dental procedures) is still very common, especially as operations such as circumcisions are often performed by non-medical personnel.
HCV has no unique clinical presentation — 60-80 percent of cases are asymptomatic, and the rest only experience flu-like nausea, fever, fatigue and vomiting. Many Egyptians live and die without knowing they were sick, in the meantime infecting many others, who could potentially get very sick. Even then, it can take up to 30 years for the disease to present itself.
In 1999, the WHO estimated that 18 percent of Egyptians had HCV, while the Ministry of Health, which has postponed its January 2009 release of new figures to March, put the number closer to five percent.
Applying WHO ratios to Azzazy’s estimate of 10 million HCV carriers, about six million Egyptians are chronic carriers. About 1.2 million of those will develop cirrhosis and 240,000 will get liver cancer. Dr. Wahid Doss, director of the National Hepatology and Tropical Medicine Research Institute, estimates that 300,000-500,000 Egyptians will need liver transplants in the next three years.
A partial liver transplant can cost up to LE 600,000, and fewer than 10 hospitals in the country perform the procedure. For the lucky ones who manage to detect the virus early on, before it damages the liver, the HCV treatment — a drug called Interferon — costs a prohibitively expensive LE 40,000 for a 24-week treatment. Interferon is only effective in 30-50 percent of cases and has severe side effects including fever, chills, and headaches every time the drug is injected.
The estimated annual infection rate, extrapolated from prevalence rates, is a seemingly tiny 0.0875 percent, which actually translates into a significant 70,000 new cases every year. The infection rate for women in rural areas stands at a much higher 0.5 percent, according to a 2008 report in the journal Transactions of the Royal Society of Tropical Diseases and Hygiene.
A decade ago, blood donations in Egypt were a haphazard mess, according to the National Blood Transfusion Center (NBTC), established by the Ministry of Health in 2001 to develop the country’s blood transfusion services. At that time, less than 1.5 percent of the public donated blood, compared to the international standard of 5 percent (plus or minus 3 percent according to the population size of the country). From 2002 to 2007, blood donations had almost doubled from 500,000 to nearly one million units.
The NBTC now has 16 centers around the country and aims to have 24 by the end of 2009. The goal of the NBTC, according to its director Dr. Abdel-Hamid Mansour, is to be “the only [entity] in charge of collecting, analyzing and distributing blood.”
At one point, Mansour says, there were over 360 different blood banks in Egypt, each working to its own standards. Today, of the million units (each unit is 500 milliliters) collected each year, approximately half is collected by the Ministry of Health — 25 percent from the NBTC, and 25 percent from government hospitals and other public entities such as Vacsera, a holding company producing vaccines and other biological products. Five percent is collected through private hospitals, 10 percent from the military and the remaining 35 percent through teaching hospitals. Each blood collection entity operates according to varying standards for testing, operating and monitoring.
Now the Ministry of Health wants to eliminate all other blood banks, and has already begun shutting down public hospital blood banks that operate under its umbrella. No new licenses for blood banks are being issued.
“All public hospitals are now going to stop collecting and rely on us,” says Mansour. “More than 50 percent of them have now stopped.” This means that one unified standard will be applied to the process of blood donation. In addition to providing blood to hospitals, the NBTC also runs blood drives for non-governmental and charity organizations such as Resala and Life Makers.
Since the disease has no unique symptoms, HCV can only be diagnosed through a blood test to determine the presence of the virus. But in a country, says both Azzazy and Doss, where the majority of the citizens rarely go for check-ups and would only do so if they feel sick, the disease can be transmitted by one infected person to his entire family through something as simple as sharing a shaving kit.
“Usually they find out [they’re sick] by chance,” says Doss, who is also the head of the National Committee for the Treatment and Control of Viral Hepatitis (NCTCVH), created by the Ministry of Health in 2006.
In Egypt, there are typically three occasions when a person would take a blood test that could reveal if he or she has HCV. The most common, says Doss, is the test Egyptians are required to have “when they come to travel for work in the Gulf.” The other two occasions are during medical check-ups or blood donations.
According to a 2006 report in the Journal of Viral Hepatitis, HCV prevalence rates are six percent of the population in Alexandria, nine percent in Cairo, 20 percent in Upper Egypt and 28 percent in the Delta. Voluntary medical checkups are far less common in rural places where the disease is most prevalent. This is why blood donation test results are an important mechanism to let people know they are sick. International standards for blood donations stipulate that blood should be tested for at least four diseases: HIV, HCV, syphilis and Hepatitis B.
On average, according to the NBTC, four to five percent of all donated blood units collected nationwide are infected with HCV: approximately 35,000 people in 2007. According to one doctor at a large private hospital in Heliopolis, who asked not to be named because he is not allowed to speak to the press, the rate is consistent with the hospital’s records.
Before the NBTC was established, most people donated blood for monetary reward and voluntary donations were non-existent. Now they make up all donations at NBTC centers. This is due to a ban on paying for donations, and a successful campaign that portrayed blood donation as a good deed in Islam. While there are no official numbers, solicited donations are still quite common, with many government hospitals requiring families of patients to donate blood when the patient needs surgery.
A statement released in mid-2008 by lobby group Doctors Without Rights notes it is common knowledge that family members must donate blood before their loved one can be admitted to a public hospital for surgery. But “there is a tragedy happening and no one is moving. The infected donors are not notified that they are carriers of the disease. [They must be notified] so they can get treated to stop the spread of the disease in our country.”
According to Dr. Gamal Abdel-Latif, head of the NBTC’s Blood Donor Recruitment Committee, donors like Mohammad were kept in the dark about their test results until quite recently. In 2004, the NBTC began sending letters to donors whose results were positive for any of the four diseases they tested for, asking them to come in and be retested for free to confirm the results. If the results were positive, they gave the donor two free counseling sessions on how to seek appropriate medical follow-up for their condition.
In 2007, the NBTC collected 214,944 units from blood drives and in-house donations. Of those, 11,526 (5.36 percent) tested positive for HCV, and 1,370 (0.63 percent) for one of the three other diseases.
As an example, in 2007, 3,625 donors at the Mohandiseen headquarters of the NBTC tested positive for HCV (up 528 from the year before). Of them, 2,900 were sent letters and 100 phone calls were made. Only 870 came back for additional tests.
What’s the Big Deal?
The NBTC is the most likely blood donation entity in Egypt to let a donor know they’re sick, and the center made 350 phone calls last year, compared to 100 in 2007. But the NBTC covers only approximately 25 percent of all blood donations in the country. What about the rest?
Many “free” government hospitals such as Demerdash and Ahmed Maher in Cairo ask relatives of a patient to donate blood. Some, like Cairo’s Ma’had Nasser, which use 200-250 bags of blood a day, require it. “What’s the big deal?” asks a surgeon at one of these hospitals, who declined to give his name. “These patients are getting free treatment, aren’t they? Donating blood is the least their relatives can do.”
The big deal, explains Azzazy, is that many of these donors are then pressured to lie on the supposedly prerequisite questionnaire. If a potential donor answers yes to “did you go the dentist in the past three months,” then they are disqualified from donating because under current test methods, the presence of HCV can only be detected after 6-10 weeks. Azzazy’s preliminary experiments on his new diagnostic tests have revealed that some people with negative test results actually turn out to be positive for HCV.
So if a potential donor has been to a dentist who used infected tools during the previous three months, he may be infected and not even know it. His blood test result would be a false negative for HCV, and the donor would inadvertently infect his sick relative.
As the WHO notes, “donors who give blood voluntarily and for altruistic reasons have the lowest prevalence of HIV, hepatitis viruses and other blood-borne infections, as compared to people who donate for family members or in lieu of payment.”
Not all hospitals and blood donation centers are scrupulous. “There are [some] places that don’t even ask for a questionnaire,” claims Abdel-Latif. “Some places will do only four tests [stipulated by the WHO], and we can’t guarantee their quality.”
These places are not necessarily the seedy hospital rooms of our imagination — they can be top-of-the-line private facilities.
When this reporter went to donate blood at Al-Nozha Hospital in Cairo, ID (which is required by law) was not even requested, and there was no questionnaire to fill in. Asked only for her age and if she was menstruating or pregnant, she then donated blood under the care of a doctor who was not even wearing disposable gloves.
And if a donor turns out to be infected when the blood is tested, few of the hospitals et spoke to take the time to follow up on positive test results, though most will let the donor know the results if they call for them.
“If you calculate it, it’s too much hassle to let someone know he’s sick,” says Abdel-Latif, “but at the NBTC we don’t think of the donor as someone to suck dry.”
The NBTC hopes that all hospitals and blood banks will follow their example. But teaching hospitals, such as Kasr El-Aini and Ain Shams, which collect substantial numbers of blood donations, actually operate under the Ministry of Education, not the Ministry of Health, which means they are under no obligation to adhere to the NBTC’s standards.
According to Dr. Shereen Nasser, head of the blood bank at Kasr El-Aini, the hospital collects 40,000-50,000 units of blood a year, making it one of the largest collectors of blood after the NBTC. Collecting an average of 70-80 bags a day, the hospital sends two to three blood drives a day to hospitals, factories, universities, mosques and other places with large gatherings of people. On an especially good day, during Ramadan for example, the hospital can collect up to 2,000 bags.
Three to six percent of the collected blood is infected, says Nasser, with over half the percentage attributed to HCV. For those approximately 2,000 people a year, a letter could save their lives.
“[If people] call, we tell them,” says Nasser. “If it’s a blood drive, we send individual closed letters to […] the management of the school or university, imam of the mosque, etcetera.”
According to Doss, the NCTCVH is currently working on a five-pronged plan to combat the spread of HCV in Egypt: conducting intensive research about HCV in Egypt; decreasing treatment costs; creating a system where the government pays for treatment; increasing prevention programs through infection control in hospitals and media campaigns; and increasing liver transplants.
In the past two years, the national committee has opened 16 centers around the country at a cost of LE 300 million, decreased the price of a single Interferon injection from LE 1,400 to LE 480, and treated 60,000 patients (40 percent of whom had their treatment completely subsidized by the government).
But all the effort will be for naught if HCV-carriers never find out they are sick and carry on inadvertently contributing to the spread of the disease. A national campaign to increase awareness of how the virus is spread and how you may have it and not know is vital.
The lowest estimate of the number of Egyptians chronically infected with HCV, according to Doss, is five million — that’s more than the population of Lebanon. The first and easiest step to combating the HCV problem is for all blood donation centers — not just NBTC—to let those who are sick know they are sick.
It costs LE 400 to prepare a bag of donated blood for transfusion. It costs LE 2 to send a letter and even less for a phone call.
In Mohammad’s case, one such letter 10 years ago could have saved him a difficult and expensive operation and years of agony. Instead, he had to spend his life savings and go deeply into debt to pay for his partial liver transplant. And, in five or six years, the new liver will become re-infected.
“The health of a person [with HCV] is not cheap but to save him it is,” says Mohammad. “Don’t leave him marmy [thrown like garbage] in the street after you take his blood — his life —from him.” et