Conquering liver diseases in Egypt: 'We need to keep working very hard'

Dina Ezzat , Friday 10 Aug 2018

Dina Ezzat speaks to Tawhida Abdel-Ghaffar and Osama Al-Sayed of the Yassin Abdel-Ghaffar Centre for Liver Disease and Research about Egypt’s fight against the Hepatitis C virus and other liver ailments

 Abdel-Ghaffar Centre
Abdel-Ghaffar Centre for Liver Research

It is late on a Tuesday morning and another very busy day for the team at the Yassin Abdel-Ghaffar Centre for Liver Research in Cairo.

Men, women and children of poorer economic backgrounds have already arrived, sitting side by side with others from more privileged economic situations at this low-profile centre that carries the name of one of Egypt’s most prominent doctors at the forefront of the war against liver diseases, including the Hepatitis C virus.

All those present are being promptly processed for check-ups, tests and consultations.

According to 2017 World Health Organisation (WHO) figures, liver diseases are still responsible for around one fifth of annual deaths in Egypt, making the country one of the top countries in the world for liver ailments.

However, over the past few years a national campaign has championed the cause of curing Egyptians at least of one of them — the formerly lethal, now very treatable, liver disease Hepatitis C.

“The centre is there to address all types of liver problems, but of course the Hepatitis C virus is a prime issue,” says Tawhida Yassin Abdel-Ghaffar, deputy chair of the centre.

A paediatrician who specialised in children’s hepatology, she is the daughter of Yassin Abdel-Ghaffar, a man who spent his career treating liver diseases in Egypt.

His name is still well remembered by families whose members he treated, including the family of Egypt’s adored singer Abdel-Halim Hafez who lost his battle with liver failure in 1977.

The centre today provides the most economical prices possible for those who can afford to pay. Those who cannot receive a free or almost free service of the same quality. This covers examination and laboratory tests, medical visits, medication and surgery, and, if necessary, hospitalisation.

In an average week, the centre, located off Makram Ebeid Street in Nasr City, receives hundreds of patients of all ages. “I guess we can credit ourselves for having dedicated special attention to children with liver problems,” Abdel-Ghaffar says.

The majority of cases reaching out to the centre are seeking diagnosis or have already been diagnosed for what they think is liver disease. They come for treatment that might include anything from accessing medication to getting a liver transplant.

“We see a wide range of patients every day who are often referred for diagnosis or treatment. We provide them with a wide range of medical services, and in addition to our outpatient clinics we have a two-floor hospital with an intensive-care unit.

Although we do not do liver transplants, as we do not have the facility yet, we do care for patients before and after liver transplantation,” Abdel-Ghaffar says.

She takes care of paediatric patients and has been seeing one patient after another since the early hours of the morning. By noon, she still has a long queue to attend to. “I guess it is because we are one of the only places that has a particular unit for paediatric hepatology in Egypt,” she commented.

“It might not be something that many people would immediately think, but children are subject to a wide range of liver problems, including of course Hepatitis C,” she said.

However, “they are mostly infected rather than actually diseased, but then there are other ailments including common hereditary diseases that at times could be complicated enough to require a transplant,” she added.

For paediatricians treating children with liver problems, it is very important for doctors to be easy-going and thorough, both with the kids themselves as well as with the parents, especially as some types of illness can be transmitted through infection.

“With children, the doctor needs to be encouraging on matters like medication and dieting because children do not like restrictions very much. But the doctor has to also be very elaborate in talking to the parents to make sure that they do not end up getting infected as well or any of the patient’s siblings,” she explained.

This is precisely why the centre provides group counselling sessions on a regular basis for children with liver issues along with their parents where they can find solace from one another and where the parents can share experiences.

The group counselling is one of many free services the Centre is keen to provide. “When we talk about the combat against liver disease, we have to start with prevention. This is essential with all diseases, but specifically with most liver problems,” Abdel-Ghaffar said.

Abdel-Ghaffar Centre

Raising Awarness

In order to raise awareness of liver diseases among the wider population, the centre is involved in issuing and distributing leaflets about the many types of liver diseases and how they are transmitted.

It also carries out visits to alert men and women about the need to be cautious about possible reasons for infection or simply illness. Abdel-Ghaffar is particularly concerned over the increasing cases of fatty liver she has been seeing.

“Obviously, this is one of the health hazards of the fast-food culture that has taken over segments of our society,” she said.

Moreover, she added, “not many people may be aware of the need to do blood screening for Hepatitis B and C prior to surgical interventions or getting a blood transfusion.

Hepatitis B is a chronic condition, and it can be sexually transmitted,” she added.

“We also warn people against the abuse of antibiotics or any unprescribed medication, and we warn doctors against over-prescribing medication because even prescribed medication can trigger liver problems,” she said. She added that awareness about the many types of liver problems and their causes is as important as awareness about Hepatitis C. “In fact, it is not irrelevant to the campaign to eliminate Hepatitis C because more often than not liver issues are interconnected.”

Osama Abul-Fotouh Al-Sayed, a leading member of the medical team at the Yassin Abdel-Ghaffar Centre, said that hardly a year passes by without his seeing one case or more where individuals who have not been diagnosed with liver issues suffer sudden and unexpected side effects of medication prescribed for a common cold or other simple problem.

“Awareness is central to the combat against liver diseases, including Hepatitis C that can be quite detrimental if not properly and promptly diagnosed,” Al-Sayed said.

One of the most common assumptions is that it is an illness suffered from by the poor, whereas “it really isn’t. It hits the poor more, but it does not stop there,” he said. Not many people are aware of the “damaging effects even of not heavy use of some types of liquor on the liver, especially in the case of undiagnosed and untreated types of liver problems,” he added.

More often than not, people overlook the impact that the overconsumption of off-the-shelf painkillers can have on their livers, “especially in cases of dormant or undiagnosed diseases.”

“This is why the centre gives equal attention to awareness as well as to screening and treatment,” he insisted.

“At the end of the day, you cannot expect the state to provide for every single citizen. The national campaign for the elimination of Hepatitis C has provided free screening for many, but it cannot cover everyone,” he added.

As a result, raising awareness is key to keep the national campaign going, and it could cover all the population if the media devoted more attention to liver diseases, including by raising awareness in schools, universities and work places.

Abdel-Ghaffar added that awareness “should also cover those doctors who might not suspect or diagnose liver issues like gastroenterologists would.”

There was a need to properly target screening programmes to make sure that anyone whose work includes physical contact with other people is free of transmitted types of liver diseases and that nobody should be allowed to take a job in a hospital or clinic who is not screened and proven negative.

Proper infection control in all medical settings is also something that she is very keen on stressing as a basic and non-costly procedure that “if efficiently observed could spare a lot of suffering.

This is not just about laboratories and operating theatres, but also about emergency rooms and most certainly about incubators.”

virus C
Al-Sayed at a medical conference at the centre

Hepatitis C

Recent years have seen special attention given to the Hepatitis C virus, and it is a harsh reality that around 15 to 20 per cent of the Egyptian population has had to live with.

In some cases, the virus has amounted to a death sentence, but the national campaign has clearly reduced the figures. “We have to credit the national campaign for having reached out to people who would not have been able otherwise to access the necessary medical treatment,” Abdel-Ghaffar said.

“But we have to make sure that the positive momentum keeps going because if people start to have doubts due to misunderstandings or unintentional errors than we could suffer an unfortunate reversal,” she added.

In 2012 the first signs came of a possible end to the ordeal of millions of patients in Egypt and the world as a whole with the introduction of the drug Sovaldi as a possible definitive cure for Hepatitis C. A couple of years down the road, the new medicine was on the market.

However, the cost was too high for the vast majority of Egyptian patients, and it was far too costly even for the resources of the Ministry of Health. “Sovaldi was perhaps the greatest hope for patients with Hepatitis C,” Abdel-Ghaffar said. “It was not necessarily designed to fit the treatment of all patients with the Hepatitis C type we have in Egypt, but it worked well, sometimes very well, in many cases,” she added.

The centre had access to Sovaldi for patients considered fit for this treatment through cooperation with NGOs such as the Cure Bank. “We are very careful with prescriptions because unlike what has been suggested in some uninformed quarters it is not just any Hepatitis C patient who can be treated with this medicine. This is perhaps why there has been a bit of confusion in the minds of some about what the medicine is capable of,” she suggested.

“Sovaldi is a very good treatment, and the government made an excellent deal to make it available to those who need it and cannot afford it. But it is the role of the medical community to make sure that it does not become over-prescribed or inadequately prescribed,” she said.

Meanwhile, the vigilant campaign against Hepatitis C should not allow a reduction of attention to other liver diseases that might not sound as alarming but could be equally disturbing for human health.

Training and Research

Both Abdel-Ghaffar and Al-Sayed are keen to stress the need for proper training for radiologists and pathologists who attend to liver patients because accurate diagnosis can make all the difference.

“For example, if someone is diagnosed with Hepatitis C it is essential to diagnose the level of infection because an inaccurate diagnosis could cause a wrong prescription which might in fact cause harm rather than help,” Al-Sayed said. “Inaccurate diagnosis and consequent improper prescription is one reason behind many of the complications that we see at the centre, including cases where patients end up with liver cancer.”

This is “an issue of continued education and of access to training and conferences on the part of doctors. We do not have resources for this at the centre unfortunately, and it is not something that most medical centres or individual physicians could easily afford.”

It is now getting later in the afternoon and time for Al-Sayed to inspect his patients. “Some of the patients could be spared from suffering if they could get a transplant, but this is not an easy operation, either in terms of finding a donor or of finding the necessary finance,” he said.

The issue of liver transplants for children and adults is a sensitive matter. Legal regulations require that donors should be related to the patient. “This might be easy in the case of children, because parents would never hesitate to donate and because in the case of transplants for children we do not need to extract a significant part of the donor’s liver,” Abdel-Ghaffar explained.

However, even in the case of children there can be complications, such as when a child is suffering from a hereditary problem that does not allow for a parent’s donation.

In the cases of adults, Al-Sayed said things are more complicated not only because the donor needs to allow a larger extraction from the liver, but also because often enough the patient will not allow his children to donate and will have to look for someone else.

“At this point there is always the issue of the fear of trafficking, and this is why we never act to do transplants away from the direct and strict supervision of the relevant government bodies,” Abdel-Ghaffar insisted.

Keeping the necessary medical research going is another item on her list of priorities. “This is absolutely essential, no doubt about it, and it is essential for this particular centre,” she said.

In the late 1980s when her father started a public-awareness effort to bring attention to the virus, she remembers that he said that Egypt had a serious reason to worry over a lethal liver disease that was neither the then-recognised A or B types of the Hepatitis virus.

“His statement caused quite a stir at the time, especially since he also warned of the potentially widespread nature of the disease and the very high cost of treatment,” she remembered. Some, including members of the medical community, said such fears were “excessively alarmist”. But the man who had already dedicated over 40 years of his life to treating liver diseases would not backtrack, and he went on to research what he feared was a life-threatening virus.

Unfortunately, Yassin Abdel-Ghaffar was proven right, and Egypt found itself standing face to face with a virus that could at least undermine the quality of the lives of millions of the poor at a time when the state budget for medical services was unable to step in with reliable insurance.

Throughout his life Yassin Abdel-Ghaffar worked a lot on research, and when he set up the centre he made it a point that it would host top specialists at an annual conference on liver diseases hosted in Egypt. Today, the centre that carries his name is still associated in the minds of many with the medical research of its doctors.

“Our research is published in reputable medical publications, and our doctors attend international conferences despite our financial limitations,” Al-Sayed said. “We are still successfully issuing the Egyptian Liver Journal, and the last volume came out in January 2018,” Abdel-Ghaffar added.

The Journal is a joint project of the centre and the state National Liver Institute founded by the same doctor.

It is a peer-reviewed journal that publishes articles describing clinical and basic research in both humans and experimental models in all medical fields related to liver issues, while observing the protection of the patient’s rights to privacy and the full consent of any patient who agrees for his or her case to be published.

Today, the Journal is one of the activities the centre is particularly keen to keep going. “In dealing with liver problems, we know that there are different types of different origins — in other words the type of Hepatitis C in Egypt is different from the type in other regions, for example.

This observation is essential because it helps guide us on advanced medication methods, with some being compatible with our patients and others not,” Abdel-Ghaffar explained.

Keep Going

Providing the maximum service to the maximum number of patients is something Abdel-Ghaffar has to worry about.

“It is not an easy task in view of the increased costs of medical services,” she said. “Donations are not on the increase, and we do not wish to spend the money we manage to raise on publicity because we have to prioritise the waiting lists we have for children and others who need our help. It is a tough situation,” she said.

The centre depends on donations from those who have come to know about it or have used its services. It also secures extra donations from the attention it has been trying to get from its Facebook page.

Cooperation with bigger charities has also been helpful. However, there is a growing awareness among the doctors working for the centre that the time may now have come to opt for a more advanced approach to securing more donations.

“I have been receiving all types of ideas from the young and enthusiastic members of our team, but we really need to be careful about how we are going to do this because from day one the centre has been totally committed to observing ethics,” Abdel-Ghaffar said.

She can sound exhausted, but she insists she is “not tired” because she knows that the combat against liver diseases in Egypt is far from being mission accomplished. “There has been success on some fronts, but we need to keep on working very hard,” she said.

*A version of this article appears in print in the 9 August 2018 edition of Al-Ahram Weekly under the headline: Conquering liver diseases in Egypt  

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