Investigative reporting: Kidney failure patients in Syria suffer from minimum health care
In an investigate report, journalists Rama Najmeh examines the state of kidney diseases in Syria and highlight the insufficiency of treatments. APN showcases journalism from the Arab world in the Arab Journalism Highlights category through republishing articles of excellence as well as interviews with the journalists behind those articles.
APN showcases journalism from the Arab world in the Arab Journalism Highlights category through republishing articles of excellence as well as interviews with the journalists behind those articles. This category is produced in cooperation with ARIJ, Arab Reporters for Investigative Reporters.
by Rama Najmeh, January 2009
Before reaching the hospital's emergency gate, Mariam had fallen on the floor, unconscious. Her muscles were twitching and her mouth was foaming; the high levels of potassium in her blood had been life threatening. This was just one of many seizures she had been experiencing since she had started haemodialysis treatment, just after being diagnosed with renal failure six years earlier.
Because of her illness, Mariam had lost her job in a kindergarten. She had to go to the National Hospital in Lattakia -the major northern coastal city of Syria- twice a week, for dialysis. There, she would spend four hours connected to a huge dialysis machine, an artificial kidney that removes waste products from the blood. She also lost 26 kgs of weight.
Mariam's physician had informed her that she was also suffering from pulmonary edema, anemia, and various infections as a result of a weakened immune system.
According to the Syrian Kidney Diseases and Transplant Association, there are 2,800 people in Syria who suffer, like Mariam, from renal failure. However, their actual number may exceed five thousand, as a third of patients do not go to the doctor and therefore are never diagnosed, the association states.
The human kidney filters 200 liters of blood every day. It helps to regulate arterial blood pressure and blood pH. The kidney secretes a variety of hormones, including Erythropoietin that stimulates erythrocyte production which causes the production of hemoglobin (an essential component of red blood cells) in the bone marrow.
Renal failure is diagnosed when the kidney is incapable of purifying the blood of wastes and toxins. A kidney transplant is the ideal treatment in this case, according to Dr. Ahmad Ejjah, President of the Kidney Association. Otherwise, patients have to undergo regular dialysis, follow a special diet and take prescribed drugs.
Sixty five to seventy people in every one million are diagnosed with renal failure in Syria each year. Only 14 of those are lucky enough to get a kidney transplant, according to a study published in 2006 by Dr. Mostafa Habash, a kidney transplant surgeon. This means that eight out of 10 patients depend on haemodialysis to stay alive.
When one of the eight dialysis machines in Damascus Hospital broke down, Dr. Sahar Damerli spent 45 minutes rescheduling the dialysis sessions of 165 patients. Some of them had to come at 2:00 am to benefit from the free medical care that the hospital offers. Damascus Hospital is the largest public hospital in Syria.
"Ninety percent of dialysis patients use the services of 67 public hospitals because private clinics impose high charges that they cannot afford," said Dr. Damerli. "But public hospitals have only 220 dialysis machines", she added.
Based on this estimate, Dr. Mostafa Habash, says that one machine is being used by 13.6 patients on average in Syria, compared to one dialysis machine for every 2.38 patients in Japan, and one for every 3 patients in Saudi Arabia.
"We need to double the number of dialysis machines in public hospitals to be able to meet our patients' needs," Dr. Habash says.
In 2005, a study was conducted in the coastal region hospitals in Syria by Dr. Ibrahim Souleiman and Dr. Hussein Said, professors of pathology at the faculty of medicine in Tishrine University. This study showed that, on average, the ratio of patients to dialysis machine far exceeded the worldwide average of four.
"I feel ill before the session, and feel ill afterwards," Mariam used to complain. Mariam should have undergone dialysis three times per week, but she used to undergo only two sessions each week because of high patient load. This means that the level of toxins and waste products in her blood remained high for a longer time than ideal. Because of the long time lapse between sessions, Mariam used to gain up to five kilograms in excess fluid. She frequently suffered from nausea, vomiting and diarrhea between dialysis sessions.
"I feel that I am suspended between life and death. I am treated to prevent death, but my treatment is not enough to help me lead a normal life," Mariam used to say.
The study of Dr. Ibrahim Souleiman and Dr. Hussein Said showed that 84 percent of the patients in the coastal areas underwent dialysis twice weekly, while in France for example, 62 percent of the kidney failure patients undergo dialysis three times per week and 14 percent four times per week.
The situation is particularly difficult for patients living in the eastern and central regions of Syria, according to the statistics of the health departments of Syria's 13 governorates.
In the central town of Homs four hundred patients received 22 thousand dialysis sessions in 2008, this means an average of less than two sessions per week per patient. In Hamah (centre) patients received an average of only one session per week, while in Hasaka (North East) eight dialysis machines serve more than 160 patients.
Mahmoud Dashash, Director of the Department of Planning at the Ministry of Health (MoH) says that the ministry has purchased 70 new dialysis machines in 2008 for public hospitals and is planning to import 150 new ones. However, due to procedural rules, these machines won't be available for up to two years from the date of the tender.
The last purchase of artificial kidneys dates back to 2002, when the ministry bought 60 machines. The remaining dialysis machines used by public hospitals are more than ten years old and some of them suffer from repeated failures.
A survey, conducted by this reporter for "Tijara wa A'mal" (Business and Commerce) magazine showed that. on average, three out of ten dialysis machines were out of order in 12 dialysis centers surveyed around Syria from 7 to 14 July 2008. Every break-down puts more pressure on patients, as well as nurses and physicians, who have to reschedule dialysis sessions.
Post-dialysis lab tests showed that Mariam had suffered from high levels of creatinine, a chemical waste material that is generated from muscle metabolism and considered a reliable indicator of kidney function.
"The tests showed very high levels of creatinine and potassium in Mariam's blood", said hematologist Maram Sanousian. "This indicated that her dialysis results were poor; this would have happened either because the machines were too old, or were not used properly or because the sessions were too short", she explained.
Dialysis machines should be replaced every five years, said Dr. Dashash, but "this is a budgeting issue reflecting the MoH priorities", he explained.
Minister of Health, Dr. Maher Hosami, a urologist, said in 2003, that "every year, we need to buy about 200 dialysis machines to cover patients' needs, if we opt for haemodialysis." He pointed out that efforts should be focusing on encouraging kidney transplants, but this approach has not yet been undertaken.
Mariam didn't know that the dialysis sessions she had to take until she found a kidney donor would undermine her chances of recovery. In 2005, Mariam was among 130 patients who contracted the blood borne virus, Hepatitis C (HCV), in the National Hospital in Lattakia. The viral transmission was not investigated and the patients remained quiet about the infection. Mariam became used to suffering in silence with a sickness that, in her own words, had become like a prison for her.
Hepatitis C is a silent epidemic that is highly infectious as the virus may be carried by any source of blood or blood. Hepatitis C is called 'clinically silent' because infected persons may be asymptomatic for 20 or 30 years. Paradoxically, "80% of the patients are expected to suffer from chronic infection of the liver and in general 20 to 30% of them will progress to cirrhosis, according to the World Health Organization (WHO)" Dr. Sanousian said. According to him, in this case, a kidney transplant is not possible and will not cure the patient.
Dr. Mahmoud Karim, the director of the Department of Environmental and Chronic Diseases (DECD) in the MoH stressed that the prevalence of HCV among kidney failure patients in Syria was not greater than worldwide levels. Dr Karim cited a study conducted by his department in 2006, which found the prevalence of HCV in kidney failure patients in Syria to be above 12 percent, (Dr Karim refused to give a more precise figure). Hepatitis B (HBV) prevalence, on the other hand, was 8 percent, according to the same source.
The study conducted by Drs. Souleiman and Said showed that 8.5% of kidney failure patients in the coastal region were HBV positive while 39.8% were HCV positive. While the study conducted by the "Business and Commerce" magazine showed that one in every four patients is an HCV carrier.
These rates are higher than global rates and, in particular, than those in the United States of America, according to a study conducted in 2008 by Dr. Ayman Ali, a gastrointestinal specialist. The study showed that the prevalence of HBV infection in patients with renal failure in the USA dropped to 0.9% in 2000. At the same time the study found that 8.4% of renal failure patients had been HCV positive in 1999. The study concluded that "Death rate is 35% higher among kidney failure patients who suffer from liver cirrhosis than those who don't".
Worldwide prevalence of HCV is estimated at 3 per cent. A vaccine is available for HBV but not for HCV.
Dr. Karim stressed that the MoH makes the vaccine available for all kidney failure patients, as they are considered to be at higher risk of contracting the virus and consequently of becoming potential carriers.
However, the Souleiman and Said study shows that only 50% of kidney failure patients were inoculated with the three basic doses of the Hepatitis B vaccine. Some patients received one or two doses while others had never heard about the vaccine or had neglected to avail themselves of it.
The high prevalence of the viruses among dialysis patients is due to the lack of advanced sterilization techniques, according to Dr. Karim who also stressed that the MoH has taken the strict measures of enhancing sterilization, and by separating infected from non-infected patients.
Dr. Damerli believes that the high transmission of Hepatitis B and C is a result of the fact that the artificial kidney units are understaffed. "One nurse may be in charge of sterilizing and operating several machines; as a result, the virus may be transmitted from one patient to another," she said.
Field visits by this reporter to hospitals in Homs, Hamah, Lattakia and Damascus revealed that patients who carry HCV or HBV use different dialysis machines. However, all the patients use the same halls and are serviced by the same staff. The Surgical Kidney Hospital is the only exception where carriers are physically separated from others.
Moreover, standard procedures require that after every session, dialysis filters should be replaced with a new set of filters, and that the machine undergo maintenance. This procedure takes half an hour to complete, while a dialysis session normally takes four hours. However, field visits revealed that kidney machines are actually sterilized only once, at the end of the day, and not after every session. Nurses said that the "high number of patients doesn't allow time for sterilization between sessions." They also revealed that, occasionally, non-carriers of hepatitis viruses were placed on a machine that is meant to be only used by infected patients, because sterilized machines were already in use. Dr. Rania Dirani, the director of the Surgical Kidney Hospital admitted that such incidents did occur "especially in emergency cases when a patient needed to be immediately placed on a dialysis machine, and only one of those used by hepatitis carriers was available."
Another factor that may contribute to the transmission of hepatitis viruses is the blood tests needed to detect such viruses. In public hospitals, these tests may be inaccurate and may give misleading results especially in kidney failure patients, Dr. Sanousian pointed out. The laboratories of the MoH provide more accurate tests that detect the viruses' DNA and RNA in human serum samples.
"The treatment of a kidney failure patient doesn't only require regular hemodialysis, but also taking prescribed drugs to maintain appropriate levels of hemoglobin and calcium in the blood," explained Dr. Dirani. However, "those medicines are very expensive, especially active vitamin D3 and erythropoietin hormone".
A renal failure patient needs to take these medicines at least twice weekly, but the majority of patients take them only once a week. The medicines are distributed free of charge, but the quantities available are not sufficient to cover the needs of the increasing number of patients.
The "Business and Commerce" magazine noted that vitamin D3 was unavailable during two field visits to public hospitals, in 2008. On one occasion the medicine had not been distributed for two months, while PEG-Interferon, a hepatitis treatment, was unavailable on three occasions. In such cases patients buy the medicines from private pharmacies.
One dose of vitamin D3 costs 1,400 SL (26 US$) while erythropoietin sells for 1,000 to 3,500 SL depending on the manufacturer (from 20 to 60 US$). PEG-Interferon treatment costs 180 US$ weekly.
These prices are unaffordable in Syria where the average monthly wage is less than 200 US$.
"My treatment is no more than a slow death," Mariam used to repeat until she passed away in the summer of 2008 at the age of 49. Her five children found consolation in that her death was a release for her, ending her prolonged suffering.
During the last months of her life, Mariam entered into a coma; she had undergone three operations in the last year of her life, and had been diagnosed with a chronic liver infection. Doctors also determined that she had a growing tumor. However, she eventually died from a brain stroke.
"It was certainly a premature death," commented Dr. Sanousian. "She would have lived longer if she had received a kidney transplant, she would have suffered less had she benefitted from adequate medical treatment", she added.
Dr. Habash says that a third of kidney failure patients don't get the chance to see a doctor. Therefore, there are not diagnosed with the disease and subsequently receive no treatment. "Two thousand people die every year from undiagnosed and untreated kidney failure," he said.
About 2,800 patients use artificial kidneys in Syria where 1,300 new patients are diagnosed with the disease every year. About 300 of those newly diagnosed, get a kidney transplant. However, more than one thousand patients who undergo dialysis die every year. The records of the Damascus Hospital show that, in 2008, out of 198 kidney failure patients who were receiving treatment, 42 died.
Urinary tract and sexually transmitted diseases have become the sixth leading cause of death in Syria, according to MoH figures. These diseases are not among the top ten leading causes of death worldwide as classified by the WHO.
More than 30 thousand patients visited the urology units in public hospitals during 2008, according to the MoH. In 2007, kidney diseases ranked seventh among the top ten diseases in Syria. Those diseases came fourth among the most prevalent diseases in the governorate of Damascus.
Kidney Surgical Hospital director Dr. Rania Dirani said that there are no national records of kidney failure patients; "Most figures are estimates", she said.
In the meantime, no formal study has been conducted to explain why kidney disease prevalence is high in Damascus, in particular. Some experts say that it is a result of the prevalence of diabetes which is considered the major cause of kidney failure, in addition to high blood pressure. Dr. Dashash believes that kidney failure is associated with drinking polluted water, while Dr. Damerli sees the high prevalence of the disease as a result of the lack of health awareness among citizens. This leads, in her opinion, to a late diagnosis of the disease. When the treatment begins, it is already too late; the disease will have become chronic.
An official study revealed that one hundred new kidney failure patients in every one million citizens are diagnosed each year in Syria. This is double the worldwide average of 54.6 new patients in million people.
Dr. Dirani states that the government allocates a generous budget to treat kidney patients for free. "Every dialysis session costs 3,000 SL, i.e. 55 US$," she said. About 199 thousand dialysis sessions were administered in 2007. This means that the state spends more than 500 million SL (11 million US$) per year on artificial kidney dialysis. This amount is sufficient to perform 2,000 kidney transplant operations every year as each transplant operation costs 5,000 US$; therefore the needs of all patients can be met.
"The accelerated increase in kidney failure incidence makes it difficult to provide adequate treatment for all those requiring treatment, as it necessitates buying new hemodialysis machines and more medications, therefore kidney transplants become a better option," Dr. Dirani said.
In the meantime, patients will continue to suffer daily, and in the absence of a kidney transplant, most of them will face a slow, painful and premature death.
Louay stood at the corner of a street drawing his friends while playing. He is the only kid not playing. On his waist are two big black dots; his ailing kidneys. "I am waiting," says Louay.
Mariam passed away while others await a chance to survive. Among them is Mahmoud, a boxer who thinks that getting a chance to do one more dialysis session per week will be enough for him to lead a normal life. While Husam, a law student who is struggling with hepatitis, hopes his turn will come soon for a kidney transplant.
And Louay is also waiting for a chance to live normally like any other child.
This investigative report was prepared under the support of the Arab Reporter for Investigative Journalism, ARIJ under the supervision of Ali Hassoun.