Not worth the Shot

Not Worth The Shot?
As the cost of the only FDA-approved medication to fight hepatitis C virus rises farther out of the average patients reach, quacks and swindlers are cashing in on victims suffering. Meanwhile, some are wondering: Just how effective is HCV treatment anyway?
By Manal el-Jesri



HAMDI ALI IS three years old, and his PCR tests have shown high levels of active hepatitis C virus (HCV). His mother, a young veiled woman with Hamdis green eyes, finds it difficult to hold back the tears as she hugs her baby tightly. She has come all the way from Alexandria to the National Liver Center in Monoufia, one of the most reputable in the Middle East, to make sure the boy gets his interferon injections.




The doctor from the health insurance program in Alexandria refused to allow him the interferon injections, she tells us. He says he doesnt need it. But he does. The doctors here have been wonderful. They help us out of their own pockets. A zakat [charity] committee takes care of the bills, but the treatment is too costly.


We are all interested in this case, says Dr. Mohamed el-Tabbakh, the hepatology resident at the center. He is what we call a precious baby: His mother has had a hysterectomy. He is her only child.

At LE 1,800 per shot, interferon treatment can cost up to LE 80,000 for a 24-month course, far beyond the means of most patients in Egypt. But prohibitive cost aside, just how effective is the medication at attacking HCV?

No Pain, No Gain

Although interferon, a naturally secreted chemical that is found at low levels in patients with HCV, is currently the only approved treatment for HCV, Dr. Hatem Qunsowa, director of the Monoufia center, refuses to even consider it. It is all a matter of pharmaceutical trade. Its business. Take it from me, write my name under what I am about to say: Any medication whose success rate is 50 percent is not considered a medication. [Fifty percent of those who respond to the injections will suffer a relapse after six months.] I am a pediatrician, and when I prescribe penicillin to a child with tonsillitis, I know that the medicine will work in 90 percent of the cases. If I give Erythrosine, I know 80 percent will be cured. But until today, there exists no working cure for any virus. Viruses mutate. Take SARS, for example; it was killing off people and no one was able to stop it. Take the influenza virus. It was discovered at the beginning of the 20th century, and until now the WHO releases a new vaccine for it every year. The same applies to AIDS, the weakest virus on earth, which disappears at temperatures as low as 40 C. No, Interferon is not a medicine, he claims.

Nevertheless, Dr. Qunsowa does concede that interferon is the only approved treatment. Pharmaceutical companies call it an immune modulator. Very diplomatic, right? So we give it to the patient without knowing what it will do to the body. And you have to consider the side effects, of course. It causes a decrease in white blood cell counts, can cause immune-inflammation in the liver and blood cells, and may also cause the formation of tumors. But I cannot stop the rich from taking it if they can afford it, he says.

Dr. Qunsowa believes interferon is nothing but a dangerous game. I even said it to the minister of health once. I told him, You should ban the import of interferon. Why should only rich people be able to take it? It is much ado about nothing, so just ban it.

Dr. Omran El-Bishlawi, the senior researcher at the National Hepatology and Tropical Medicine Research Institute (NHTMRI) in Qasr El-Aini also believes interferon, can often be futile, but for reasons completely different from Qunsowas. El-Bishlawi claims there is nothing to cure in the first place.

It is a big mafia, a business mafia. HCV does not exist. They made it up to scare people and create a market for interferon. LE 80,000 per year! Ridiculous! he rages.

He takes us back to an important year in history. In 1882, Koch and Pasteur discovered viruses and microbes. Koch came up with a foolproof formula to identify the properties of a virus. You have to inject it into a living organism and watch for its effects. Why arent they able to do this with HCV? Here, look at this, he says, showing me some pictures of people infected with smallpox. This is the effect a virus has. There have to be symptoms you can see. Any virus must be studied through a clinical investigation supported by a picture, he claims.


And what is their only method of testing for HCV, he asks me. PCR, or Polymerase Chain Reaction]? Correct. Do you know what PCR is? Do you know how to make yogurt? It is the same idea, they take the blood, and add materials to it, creating a polymer chain, enlarging the DNA and RNA millions of times, and they call what they see HCV, he alleges.

The trick, El-Bishlawi continues, is that the virus is made up of the same matter as the DNA and RNA. The virus is just some impurities, simply residues of the natural processes of the death of blood cells. It is not a virus, it is viral material, he says. He believes the impurities result from frequently invading the closed circulatory system with injections. You damage the fragile cells which then die and appear as distortions in the DNA and RNA, he explains.

According to El-Bishlawi, patients undergo routine blood tests, which are required by companies in the Gulf, and then they are told they have HCV. They exhibit no symptoms, do not feel anything, but are told they have a life-threatening disease. It is a mafia that aims at draining Egyptians of their health and money. They say Egypt is the country with the highest rates of HCV in the world. They do this to make us look bad, and then make money in the process, he alleges.

And then they tell us it will cause cirrhosis and cancer in the far future. But that would be because of bilharzia, and not HCV. The most dangerous and draining health problem in Egypt is bilharzia. I come from Sharqia and have worked with my own people, the Delta peasants, for 40 years. Why did the ministry tone down its campaign against bilharzia, do you think? Its because the cure is cheap. But they have to find a way of taking back the aid they give us. The only way to do it is through the pharmaceutical companies, he offers.

Needless to say El-Bishlawi has no faith in interferon. It is a naturally existing protein that helps boost the bodys immunity. Anyone who prescribes it to patients is a criminal and must go to prison. They do not carry out tests to check if the patient is low on interferon or not. And the side effects are horrendous. They range from retinal fibrosis to bone marrow depression and severe psychological depression that may lead to suicide.


It was seven years ago that El-Bishlawi developed his theory. Since then, he has tried to approach the NHTMRI, the ministry and the liver center in Monoufia. They meet all my efforts with silence. They dont want to argue with me because they dont want the media to feel my presence. They only want their voice to be heard. How else can they sell interferon? he questions. His book, The Lies of AIDS and HCV, will be on the market in a few weeks.

A Shot in the Arm

So what, then, should those diagnosed with HCV take if not interferon, the only officially accepted medication? I ask Dr. Qunsowa this question directly, and I get a direct answer: Its none of your business what I prescribe. Readers may just go and buy it and start taking it. Interferon is the only approved treatment. Thats all I can say.

As we approach the ward we hear one of the patients shouting at the top of his voice. I have lived in Saudi Arabia for 30 years, it is only a few years ago that I came back to Egypt, and I got infected with HCV, Shebl Moussa Ghannam barks. Dr. El-Tabbakh whispers to us that this is not the case. Ghannams is an end case. He must have had HCV for at least 10 years. He has cirrhosis and blood vomiting, he tells us.

In the opposite bed, Mahmoud Abdel Hamid Hassan, 47, winces with pain. Hassan is a secondary school teacher from Samannod. I was vomiting blood so badly last night I almost died. But they were able to rescue me, God bless them, he tells us. Hassan has seven children, and is paid a monthly salary of LE 221. Every time he needs injections, he pays LE 200, which he borrows from friends. The health insurance program has referred me to El-Hilal hospital in Shebin, but I do not trust them there. I like it here. Doctors come in to check up on me all night, but over there they just leave you to rot, he alleges. Hassan has to take time off work when he gets his vomiting bouts. Sometimes, they deduct some of my pay, sometimes they dont. It depends on the health insurance.


Kamel Mohamed, 59, is also reeling from the exorbitant costs. He works at the Tala railroad booth, and came here four days ago after he began vomiting blood. I used to get stomachaches. Thats all I had. I have undergone four or five operations. They tell me it is all the effect of bilharzia, but I was cured from that as a child. I took the injections. Now they want me to pay LE 2,000. Look, heres the bill, he says, showing it to us. El-Tabbakh says he is HVC positive as well.

Despite the excellent care they receive, most patients at the clinic are too far gone to care much about treating HCV. They have to deal with the more dangerous end-of-the-road effects. Most of our patients have C virus. But they come to us when its too late to try to cure the virus with Interferon. They are mostly end patients who have been suffering from HCV for 20 or 30 years. They have liver cirrhosis and are vomiting blood. We have to work on the symptoms, try to stop the vomiting, says El-Tabbakh.

As for the disease itself, many, like Qunsowa, brush HCV off as a ridiculously weak virus. It is easily destroyed at temperatures of 60 C to 100 C. Only 50 percent of the patients will develop chronic liver conditions, which will turn into cirrhosis in 20 years or more. People should not worry; it is not dangerous. Like any virus, it can be overcome if the immune system is strong. This is why the mental and psychological condition of the patient is of the utmost importance. When a patient discovers he has C, he gets scared, and is barely able to walk, so the virus overtakes his body. We are a religious people. We know that it is only in 20 or 30 years that the virus can do anything to us, and we know that God will take us whenever he deems it suitable. So why worry?

Qunsowa goes on to relate a favorite example, the case of his farmer relative who came asking for him at the center. I examined him, and discovered he had a lump as big as an orange on his liver. It was too big to operate on, there was nothing anyone could do. So I told him he was fine, that there is absolutely nothing wrong with him. He went home, and was strong enough to plant his land for three whole years. It shows you how the psychological condition is the most important thing.

Soft-spoken and quiet, Dr. Alaa Eddin Ismail agrees. The dean at the NHTMRI simply cautions that panic does no one any good. HCV is not the end of the world. It does not affect the quality of life of a patient except in its end stages. If we take care of ourselves, of what we eat, how we live, if we take vacations, try to relax, we can beat the disease, Ismail advises.


According to Ismail, calmness is the only way to deal with HCV. Not all patients need treatment. One third of the patients exhibit normal liver enzymes and only need to take anti-oxidants and a lot of rest. Another third of the patients have already reached the stage of cirrhosis and bleeding vomit. It is too late to give them treatment for HCV. You work on the symptoms. So only one third will need the interferon and ribavirin [an orally administered nucleoside that has activity against a broad spectrum of viruses] cocktail, and only if they are fit to take them. These amount to 15 percent of all the patients suffering from HCV. They are the ones who need the much-talked about treatment, he says.

Although only 50 percent of this 15 percent will respond to the treatment, Ismail believes this to be the only one available to patients. Interferon and ribavirin are the only FDA-approved treatments for HCV. In Egypt, the ministry pays the full amount of money to patients eligible for the treatment. But we only give out the normal interferon, not the long acting sort, which costs LE 12,000 per course. The 7 percent difference in efficiency is negligible, he concludes.

But while some may dismiss the virus itself as negligible, it is significantly widespread, and theres no contesting the figures: The WHO puts the number of HCV-infected Egyptians at 15 to 20 percent according to a 1999 study, and researchers agree Egypt ranks very high on the list of countries where the virus is endemic. Some of the doctors we spoke to believe the incidence of HCV infection in some areas of the Delta is over 50 percent. And these figures are supported by a Lombardi Cancer Center study published in 2001 that states, In Egypt, hepatitis C affects up to half the population of rural areas.

And while the virus in its early forms can easily be overcome, it can also be potentially dangerous, with some of the patients eventually developing cirrhosis and/or cancer.

Journalist Mesbah Qutb once had a very empowering dream: I was in an iron cage. I was incarcerated and confined, but then the doors of the cage opened. I was free and light, and I flew in the sky, he remembers. A few days later, he tested negative for HCV after receiving 70 shots of Interferon. The dream, he believed then, was a sign that the virus holding him in its clutches was about to let him go. But a few months later, he suffered a relapse, and tested positive for the virus. Today, 14 years later and a few weeks after his arrival from Birmingham where he received a full liver transplant, Qutb is still suffering from HCV, a case that threatens his already fragile system and his new liver.



Qutb, who has been following HCV news closely, remembers a study published by the late Dr. Yassin Abdel Ghaffar (the father of hepatology in Egypt and the founder of the National Liver Center in Monoufia) that claimed HCV was highly prevalent in Egypt. And I believe it, Qutb says. Back when his case could have been improved by a partial liver transplant from a living donor, a number of Qutbs friends and close relatives volunteered to help and underwent a series of suitability tests.

There were around 10 of them, and five or six tested positive for HCV. I never told them, though. What would have been the point? I would only have hurt their feelings. There is no cure for this disease.

Qutb has been suffering from a combination of liver diseases since 1986, when he started vomiting blood for the first time. And that first bout did not come as a surprise to the journalist. Many of my friends died of liver diseases, he says. The blame, researchers assume, lies at the door of tartar-emetic injections given widely to residents of rural areas in the 1960s and 1970s to cure farmers of what was then believed to be the number one disease in Egypt: bilharzia.

Hundreds of young and old people queued up to get the injections. There was barely enough time to boil the glass syringes they used then, Qutb remembers. According to the Lombardi research, the explosion of HCV from confined outbreaks to a global pandemic did not occur until the 1940s, and seems to have been the result of the introduction of Western medical procedures, particularly blood transfusion and the use of the hypodermic syringe. The WHO-sponsored programs of inoculation and vaccination across broad swathes of the developing world routinely employed shared needle implementation. Millions of people were infected in this way. It is now apparent that such vaccination programmes are by far the most significant factor in the proliferation of HCV in global terms, the study points out.

As for Egypt, the bilharzia campaign dealt a fatal blow: Egypts mass campaigns of the 1960s and 1970s may represent the worlds largest iatrogenic [physician-induced] transmission of blood-borne pathogens, a according to a 2000 report by the WHO.



While scores were affected, HCV was not explicitly identified until 1989, when patients began displaying symptoms. Blood tests were not even available until 1991.

In 1987, a few years before the outbreak, Dr. Yassin Abdel Ghaffar built the first liver center in Monoufia, one of the most important and efficient centers around the Middle East. Dr. Yassin wanted to build a state-of-the-art center in his hometown, in the middle of the Delta where liver problems are prevalent. The aim was to help in introducing preventive measures. And of course, he also wanted to introduce liver transplants, Qunsowa recalls.

In 1991, the center carried out its first liver transplant operation. Dr. Nagui Habib from England transplanted a part of a liver from a living patient to a child. It was a huge success. Mohammed came off the ventilators soon after the operation, and nobody believed he had undergone a liver transplant until they examined him using ultrasound and Doppler. But the boy contracted HCV from all the blood transfused to him, and died eight months later, Qunsowa remembers.

At the time, highly sensitive modern PCR blood detection kits used to screen the virus were not available in Egypt. But after Mohammed died, the kits were imported, and the center (and later all Egyptian hospitals) started screening every blood bag. We realized the problem was a big one. But no one can really tell how big, says Qunsowa. The problem is no large-scale study was ever carried out by any organization, be it national or international. You have to choose a representative sample, at least 0.1 percent of the population. Thats 70,000 people. One PCR test costs LE 70. A number of other tests have to be carried out as well. The cost is prohibitive. But I can safely tell you that HCV is responsible for 50 percent of liver diseases in Egypt. You cannot easily find an intact liver in Egypt.

The Official Word

Dr. Amr Qandil is the director of the Infection Control Program at the Ministry of Health. The programs goal is to put a stop to patients getting infected with new diseases on admission to public hospitals. Today we are considered a model for the countries of the Middle East. No really, its not a joke. It is the WHO which says so, not us, Dr. Qandil says.

Qandil is not concerned about HCV. We are considered to have high rates. But the WHO figures of 15 to 20 percent are wrong, he alleges. We are the only organization carrying out patient surveys. Where would they get their figures from? Our rates are at only 7 to 8 percent. Thats not very high. And HCV is not dangerous. HBV is much more dangerous, and we very low rates of it, he claims.

While he has no way of knowing exactly how many people are HCV-positive, Qunsowa can only safely say that the spread of the virus cannot be ignored. Lets just say its a lot. Lets say Egypt and India top the list. But my figures here at the center will not do anybody any good. All the patients who come here have HCV and other liver problems. We are not representative, he says

Qandil is proud of his part in trying to bring down the figures. He praises the system set up by the ministry to screen every blood bag, and is also proud of his department, the ICP, which has been successfully implemented in 70 hospitals around Egypt. That is not to say that two years ago no infection control took place. But there was no staff available whose only job was to control sterilization and stop infection. Today, there is an ICP staff member in every department in the 70 hospitals within the program, he says.

According to Qandil, HCV can only be controlled through educating the people. HCV is transmitted only via the blood. People should not share toothbrushes, shaving machines, or any equipment used close to the skin. This is the only route to control, he says.

Ismail agrees. He sees hundreds of patients suffering from HCV every day and believes their misconceptions about the disease are probably the biggest problem the nation faces. Women come asking me whether they should get a divorce from their HCV-positive husbands. I tell them no. HCV is not transmitted through semen or through saliva. Couples have to make sure there are no wounds or inflammation, thats all. Neither is the disease transferred from a mother to a fetus. It is not transferred through a mothers milk either, unless her nipple is chapped and the baby has a gash in its gums, he says.

At the liver center El-Tabbakh tells us of the appalling lack of awareness of the disease. He introduces us to one patient who promptly announces he does not have HCV.

He does have HCV, by the way, El-Tabbakh tells us later, but his family does not know, so he wont admit it. Because of all the media hype, families do not understand how HCV is transmitted, and are afraid when someone in the family contracts it. They do not know whether they should touch him or even go near him, he says.

Magic Cures

Not only are people unaware of the nature of the disease, they are easily duped into believing there are magic cures for HCV. In fact, not a month passes without some news appearing in the media about a new cure for HCV. A few months ago it was pigeons. A doctor declared he could cure HCV by placing a live pigeon on the patients skin just above the liver. The pigeon promptly died after being tied to the patient for a couple of hours. The doctor then cheered and announced that the pigeon had absorbed the disease. When Ministry of Health officials attended one of his procedures, they found that he broke the pigeons neck before tying it to the patient. The pigeons were dying of asphyxiation.

Another dream cure that was also all the rage last year was camel urine. A veterinarian announced that she was able to successfully cure HCV using the urine of a suckling camel mixed with milk from the mother camel. It wasnt long before that theory, too, disappeared into oblivion.

Although Qunsowa laughingly brushes aside most of these medical hoaxes, he is reluctant to say anything negative about the camel cure. After all, it is based on a hadith by the Prophet Mohammed (PBUH). Lets not go near the Prophet, he says.

Quacks and swindlers aside, some are experimenting with alternative HCV therapy. Dr. Hosni Salama, professor of hepatology at Cairo University, has gone back to the ancients for inspiration. The ancient Egyptians used to bury patients in hot sand. Heat, a temperature of 40C, is a signal for all the bodys natural immunity cells to wake up and work efficiently, he says.

Interferon, according to Salama, boosts immunity. Only 20 percent of patients need it, and because of the prohibitive price, only 3 or 4 percent of these can afford it. And it is not very efficient despite it being the only treatment available, he explains. This is where thermotherapy comes in. Three years ago, we carried out an experiment in cooperation with an Italian team of doctors. We obtained the consent of 22 patients, and we raised their blood temperature to 41 or 42C for one hour. After a few weeks of treatment, 16 of the 22 patients were found to be completely free of HCV, he states.

Unfortunately, this kind of therapy is still in the very early stages of experimentation, and has not since been replicated in Egypt. Furthermore, not all patients with HCV can withstand the treatment. Patients with epilepsy, for example, cannot take it. But thankfully none of our 22 patients suffered any side-effects, Hosni says. So maybe it is a cure for the future.

Herbal remedy, on the other hand, has been tried and tested for thousands of years. Dr. Nabil Riyad, a surgeon who lived in Kuwait for 30 years where he taught medicine at Kuwait University, was won over from classical medicine a decade ago. When faced with a new idea, some people reject it, then explore it, and then they accept it. I have gone through all three stages. I have been exposed to the benefits of herbal medicine, and know that we should try to remove chemicals from our lives, and go back to natural medicines that have been curing humans for thousands of years, he claims.

Working in his center in Heliopolis, Riyad is currently seeing about 100 patients with HCV, and declares that he has achieved success in a little over 90 percent of the cases, minus the side effects and for life. But despite the triumph, Riyad has had to deal with a lot of resistance and red tape at the Ministry of Health.

I have applied to the ministry to allow me to produce around six products, but only one has been approved so far. They wouldnt allow me to import any either. They have no idea what is going on in the advanced world. The WHO is strongly advising that developing countries go back to alternative medicine. But of course pharmaceutical companies fight this severely, Riyad claims.

The protocol of treatment Riyad follows is an internationally recognized one. We aim at first lowering and stabilizing the viral load in the liver cells, then we control liver cell inflammation to normalize liver functions, then we regulate the immunity through boosters which stimulate the patients own immune systems to overcome the viral activities. And finally, we treat hepatitis-related complications like fatigue, insomnia, joint pain, skin rashes, bleeding, ascites, edema, diarrhea, nausea and vomiting, he explains.

The anti-viral herbal medicines Riyad uses include glycyrrhizin (licorice root powder), which induces the production of natural interferon, protects and heals the liver cells from damage, and also acts as an anti-allergic, anti-inflammatory and detoxifying element. Other virostatics include olivessence capsules (olive leaf extract), which interfere with the specific amino acid production processes vital for the life cycle of the virus. They also interfere with viral invasion by inactivating the virus and prohibiting its shedding, budding or assembly at the cell membrane.

Herbs used to cure liver cell inflammation include Schizandra fructus (its synthetic analogue is the DDB, the famous yellow pill), which rapidly reduces liver enzymes and improves liver cell function. Other herbs include ligustrin and dandelion root.

Immune stimulators include Cordyceps sinensis (caterpillar mushroom), Reishi mushroom (used by Tibetan monks to keep their bodies and brains in top condition), and Astralagus membranaceus root powder. We give all these herbs in advanced form, as powder, capsule or syrup. Unfortunately, most of these are not available on the market here, so we tell the patients to try and get them from abroad. Most of them can. Saudi Arabia alone has 11 branches for one of the American companies that produce these herbs, Riyad states.

But there is also one more important benefit to herbal therapy: its relative cheapness. The cost of one year of herbal treatment is equal to half the cost of one interferon injection, says Riyad, minus the side-effects of course. The overall quality of life of the patient improves. Patients taking interferon have to suffer through continuous fever. You find none of that when taking herbal remedies, he claims. He does advise that such remedies be carried out by a certified physician. Going to the attar [herbalist] without a doctors prescription is very dangerous, he warns.

I tell Mesbah Qutb about Dr. Riyad. Would you consider taking herbal remedies? I ask him. He does not seem convinced. I see this as scientific defeat. People should go forwards, and not backwards, he opines. But Qutb has lost faith in science as well, at least in this country. In the past, my PCR tests would declare me positive in HCV alone, and sometimes in HBV alone. At yet other times I would find out I am positive in both HCV and HBV. A neighbor of mine had a PCR test, an employment requirement in many private companies nowadays. She tested positive for HCV, and the company refused to employ her. I talked to them, and asked them to take her sample to another lab. She tested negative and got the job, he says.

So how do HCV-positive patients, if indeed one does trust the results, deal with an illness that may not even be an illness, and that has no guaranteed cure?

As Qutb puts it, it is too futile to try to think about HCV. Whenever he sees one of the relatives who wanted to donate part of his liver to him, and who was tested positive for HCV, he feels he should tell him. But then I think, what for? I will only make his life more complicated. Better leave it at that.