Cairo, November 2014 (Masrawi) –Leaning against the wall Sharief walks with difficulty to reach his bed at the acquired immune deficiency syndrome (AIDS) ward at Al Abassiya Shelter Hospital in Cairo.
He tries to console her wife Thana, lying nearby and trying to swallow her dinner while patting him on the shoulder.
Sharief, in his 40s, is so pale and emaciated that one would think he is past 70. The couple have been suffering from the deadly AIDS virus for the past three years.
Sharief suspects his wife became infected from a contaminated blood transfusion after undergoing treatment at the Suez General Hospital and passed it on to him.
He submitted a complaint to police in the 40th precinct in Suez in January 2011 but the file has been shelved as the latter is unable to prove that the blood transfusion is the cause.
They have been struggling to attain proper care and medication to sustain a normal life span for as long as possible. Thana died in December 2013, unable to fulfil her wish to live until she could witness the marriage of her to-year-old daughter.
For over two years starting November 2011, they have been unable to obtain their required monthly medication from Al Abassiya Shelter Hospital.
“Every week I would travel from Suez to the hospital to try and get the monthly dose we need for our condition,” he recalls. “But dispensing the medication often took weeks and our health deteriorated”.
Sharief could no longer work as janitor in a government-run school. He asked his son, 15, to work in a fish restaurant to support the six-member family..
The family currently lives on a 300 Egyptian pound ($42) subsidy provided by the government, well below the minimum national wage of 1200 Egyptian pounds ($168) per worker.
This reporter met Thana for the first time at Al Abassiya Hospital in November 2013, 90 days before her death. Back then, she was complaining about mouth ulcers.
The reporter witnessed the couple’s ordeal for five months. In December 2013, their health situation deteriorated fast and they were admitted to hospital. Sharief entered the ward leaning on his wife’s shoulder while his son supported him. Six days later, he had to leave the shelter briefly to bury his wife.
Now he is awaiting his own fate.
Sharief and Thana are pseudonyms used in this investigation to protect the couple’s privacy. They are among 1,216 patients living with HIV and dependent on free state-dispensed medication. They form a third of the total number of virus holders registered at the Ministry of Health. Each patients gets two boxes of medication per month.
Out of the 1216 patients, 936 receive medication from three specialized hospitals: Imbaba Shelter (350 patients), Al Abassiya (450 patients) and Tanta (136 patients). The rest are divided among other governorate hospitals, according to Dr. Waleed Kamal, the Director of the National AIDS Campaign Program (government sector).
**(Info-graph for those living with the AIDS virus for 2013)**
According to statistics published by the Ministry of Health in September 2013, the total number of those afflicted with the disease reached 4,999. Of these, 1,358 have died and 3,641 are alive: of which 3,120 are in very good health and 521 in advanced HIV stage.
However, the numbers could be much higher. The UNAIDS organization says there are 11,000 AIDS patients in Egypt.
Throughout this one-year investigation, the reporter has documented that suffering of AIDS victims in getting their medication on time. Many received the drugs two to three weeks late, impacting chances of their survival with HIV.
According to the World Health Organization, under normal circumstances, a person carrying the virus who takes his medication regularly can maintain a good immune system and live for a long period of time. The disease does not manifest itself suddenly and regular medicine intake inhibits its growth.
The reporter also concluded that the suffering of patients living with AIDS was due to bureaucratic measures riddling the system of dispensing free HIV medication: starting with arrival of the medicine at the customs department, going through Ministry of Health warehouses and ending up at select hospital pharmacies where drugs are dispensed for free.
**(Stages of the Disease – Info-graph)**
The welfare societies looking after those living with HIV, independent doctors like Abdul Hadi Misbah, Amr Gohar, Mohammad Hamad and the UNAIDS official in Egypt Dr. Ahmad Khamees believe that the slow process of dispensing HIV medicine is caused by bureaucracy of the Ministry of Health.
The ministry waits until the shipment of medication runs out before placing a new order without taking into account the time needed for processing a new shipment, including custom clearance procedures. In addition to the late dispensation of medication, some hospitals facing shortages in drugs end up giving out alternative treatments which do not suit AIDS patients, thus diminishing their ability to cope with the disease due to lack of immunity and proper treatment, say doctors.
The Global Fund Organization provides medicine – not available in Egyptian pharmacies – to those afflicted with the AIDS virus through the Ministry of Health under a seven-year grant launched on May, 31, 2008. A new grant to support HIV patients in Egypt is under negotiation.
However HIV patients registered at the three main shelters – the focus of this investigation – are not receiving the medications dispensed under this fund, at a cost of $10 million. This is increasing chances of their death.
The last shipment was distributed on November 11, 2013 at a cost of $566.567.
(Chart) **(Info-graph of the medical grants received by Egypt)**
Subscribing alternative medicine or delays in the dispensing of medicine can destroy a patient’s immunity.
A patient will also have to undergo a blood analysis that is not available in Egypt due to the lack of certain chemicals and expertise, according to UNAIDS expert Dr. Khamees.
According to immunity and clinical consultant Dr. Abdul Hadi Misbah, the lucky HIV patients are those who can afford to taking these tests in Europe (France, Britain, Germany) in exchange for 800 Euros each. The poor HIV patients have to await their fate if they do not get their medication on time after undergoing the analysis.
The treatment for those living with the AIDS virus takes three routes. Under the first option, medication is given out by the Ministry of Health. The anti-viral medication has to be taken on time in order for the immunity to remain at a certain level. This medication is dispensed through the pharmacies at ten hospitals affiliated with shelters specializing in the treatment of the disease, three of which – the biggest – were the focus of this investigative report.
This view is corroborated by Dr. Waleed Kamal, Director of the AIDS campaign program at the Ministry of Health.
The medication is tracked as soon as it arrives in Egypt from its point of origin; America, India or Brazil. The shipments are held in quarantine and then a sample is taken for analysis, says the Head of Customs Procedures Fuad Basheer.
Results should come out within 21 days. After that, another sample is taken.
The speed of the release of the shipment depends on the issuing of the sample analysis report indicating the good quality of the medication and its compatibility with the customs report. This is issued by the General Pharmaceuticals Union at the Ministry of Health. The process, at times, can be delayed and may take up to a month before it is issued. This is way above the average week this process should take says an official source at the Customs Department.
Dr. Faten Abdul Aziz, Deputy Health Minister for Pharmaceutical Affairs, refuses to comment on delays and discrepancies regarding the analysis results. This reporter tried for a month to get a reply from Dr. Abdul Aziz.
For her part, Dr. Nahla Hafez, Director-General of Registration at the Pharmaceutical Administration, explains that the National Authority for Medicinal Supervision and Research is responsible for analysing and releasing the imported medicine.
Dr. Osama Badri, head of this Authority, says that the analysis period at the ministry’s labs is determined in accordance with the law and medicinal content. This view is seconded by the pharmaceutical affairs and the National Authority for Supervision and Research of Antibodies and Serums.
However, that authority’s president Dr. Mohammad Mabrouk explained that the AIDS anti-viral medication is not listed at his authority. This falls under the jurisdiction of the National Authority for Medicinal Supervision and Research.
After passing through analysis and customs, the medication is taken to the medical supplies department at Al Abassiya Hospital in Cairo and from there, to other hospitals dispensing free HIV drugs to listed patients.
An official from the Central Administration for Customs explains that these procedures depend on decisions from the General Administration for Import and Export Inspection and the Pharmaceutical Inspection. Both are part of the Ministry of Health.
This process could take between a day and up to several weeks if the validity of the shipment is in doubt, says an official on condition of anonymity. A number of samples are taken to compare with the final result.
These “unified” procedures are imposed on all goods arriving at the country. This starts with “quarantine” then moves to “presentation areas,” where health regulations for shipments arriving from customs are approved.
According to Law No. 106/2000, after the approval from Import and Export Inspection is given, the Ministry of Health sets up a committee of ten doctors to issue two reports on the shipment. These are often late and one report sometimes contradicts the other. “For example medication names can be mislabelled and it therefore becomes difficult to release shipments due to the discrepancies,” says a ministry source. “This means more samples are taken and once a final result is given shipments are sent to Ministry of Health warehouses.”
The official confirms that customs procedures have not been affected after the start of the January 25, 2011 revolution. A committee in charge of immediate release of shipments was created, and medical shipments were given priority.
It takes between six and 12 months from the date the shipment order for HIV medicine is made until the day it is cleared and received by HIV patients, says UNAIDS official, Dr. Ahmad Khamees. His claim, however, is refuted by the Health Ministry which also refused to give this reporter details on shipment tracking numbers and customs release procedures.
“We give ourselves enough time for the orders to go through”, says Dr. Waleed Kamal, director of the National Campaign for AIDS Awareness at the Ministry of Health. He says: “The problems we have with the medication scheduling are minor mistakes, not an issue of negligence, and we are working on correcting these errors”.
**(Info-graph showing a map of the hospitals)**
However the AIDS campaign office in Egypt has monitored the cause for the delay – the Ministry puts out orders for new amounts of medication when the supplies in stock end. Adding to the suffering of HIV patients is the fact the ministry officials often change the treatment, by prescribing new drugs to replace those out of stock, without testing the patient’s resistance to the new medication.
According to Dr. Khamees, many lives have been put in danger due to these measures and delays.
This reporter has documented how a number of “low-income” patients living with AIDS have had to resort to buying the medication from India and Brazil at a price of $30 compared to $400 for medicine made in the USA, the country that owns the trade mark.
According to the United Nations AIDS report of 2011, there is no accurate number for those HIV patients who have become resistant to medications that are given as alternatives when supplies of the original medication are depleted. Their immunity gradually becomes weaker and they become susceptible to “opportunistic illnesses” such as common colds that may lead to death or different types of cancer.
**(Info-graph for Opportunistic illnesses)** (Chart)
Immunity is measured by the number of T-lymphocytic cells that the AIDS patient has. This involves carrying out an analysis every three months, using a machine that is only available at the Ministry of Health in Cairo and in Alexandria. Patients interviewed by this reporter, repeatedly complained that both machines break down regularly. Hence, those who can afford the tests, go to private centres where the test costs ($22).
Dr. Nagwa Fathi, director of the Analysis Labs at the Ministry of Health rejects claims that these two machines break down regularly. Instead, she says, what happens are minor problems that are fixed.
Chart: Info-graph on immunity rates
According to the World Health Organization, the number of T-cells required by an AIDS patient in order to lead a normal life should range between 500 and 1800 cells. In a healthy human being they should exceed 800 cells. The WHO recommends that medication is given should the number of T-cells count drop below 350. However, and since 2000, the Ministry of Health has only dispensed medication to patients if their T-cells count went below 200. This effectively means that the patient has reached a “no remedy” situation.
The ministry’s decision was reversed in 2008 in line with revised regulations by the World Health Organization demanding medication is started at 500 instead of 350.
Chart – Al Abassiya Shelter
Abdul Khaleq has been coping with irregular medicine dispensation for ten years. As a result, his immunity has suffered and his T-cell count dropped to 65 in May 2012. According to medical reports obtained by this reporter, he developed malfunctioning of the lymphatic glands.
During therapy sessions organized by the “Caritas” society, Abdul Khaleq met others who are in the same boat. He found out that he should undergo a test to see if he had reached a “no remedy stage”. But this is something he cannot afford.
He had been working as a microbus driver since 1995. In 2000 he went to Italy where he got married to get a residency visa. He returned and infected his Egyptian wife with the AIDS virus. Since then, he has been unable to work. He earns a monthly income of 170 pounds ($23), barely enough to cover a day’s expenses.
At the end of 2012, he asked Dr. Ehab Abdul Rahman, the former director of the AIDS campaign at the Ministry of Health, if he could undergo the medical resistance analysis test. His request was turned down. And after a month of evasion, he came to understand that the local machine had broken down and the ministry is unable to send his test sample abroad.
In October 2013, this reporter accompanied Abdul Khaleq as he tried to undergo the medical resistance and PCR tests at two labs; the central ministry’s lab and another private one. The results, according to Dr. Amr Gohar, showed his immunity levels had fallen to a “level of no return” making him prone to opportunistic illnesses.
Dr. Gohar, a venereal disease expert and fellow of the British Medical Board, says this has been caused by irregular supplies of medication. Abdul Khaleq can only be saved through testing in Europe after which a correct medication needs to be dispensed.
Dr. Aida Fayez at Al Abassiya Shelter’s pharmacy and in charge of dispensing medication to AIDS patients told this reporter that medicine for treatment of HIV is available and is given out regularly. But she said the ministry is responsible for delays and shortages. The hospital is simply a place to dispense the medication.
The ministry, she says, always blames the customs department for delays. She said the last time the medicine arrived in January 2014, two weeks later than expected. Imbaba Shelter
Ziad, 40, heads a family of four. With the exception of his son, the three are infected with AIDS. Unable to get hold of medication, he left for Spain. He talked to this reporter for hours about delays in receiving medication at Imbaba Shelter.
“My immunity levels receded…I nearly lost my life because I had to wait for three months to get the medicine. I was given alternative treatments that did not match my immune system. The only option I had was to undergo medicinal resistance analysis in Germany for 800Euros”.
His medical report signed by Dr. Abdul Hadi Misbah, says: “The fact that he was given incorrect medication has negatively affected his immune system and as such has reduced his chances of living with HIV”.
Ziad insists it took Ministry of Health six months before doctors could change his free medication. Hence, he was forced to buy it from India at his own expense.
This free medication crisis has affected his daughter Ayah, 8. She had to wait for two months until she got the medication in September 2012. As a result, she suffered from advanced oedema and was unable to move.
Dr. Abdul Hadi Misbah explains: “In some cases, patients go through what is known as treatment failure, either as a result of not taking medications regularly or because the virus had managed to resist the treatment course and render it useless due to the mixing of medication.”
Baha’s test results, taken during a trip to England and France in July 2009, showed his body was only responding to two out of 22 universally used retroviral antibodies because of late dispensation of medication at Imbaba shelter. This meant doctors had to use alternative medications, reducing his chances of living with the virus.
After returning from his trip, he asked the Ministry of Health to change his treatment course. He had to wait for a year to get their response, forcing him to buy the needed medication from abroad, first from the USA then from India.
AIDS patient Saleem waited from March to August 2007 to secure the right medication for his son Wael, 6, from the Imbaba Shelter. Feeling guilty for what he has inflicted on his son and his inability to secure regular medication lead him to attempt to take his own life three times.
Through one of the societies that assist AIDS patients, Baha met other survivors who helped him buy the medication from abroad after he was told by the ministry that supplies have run out and “it would take time to find sufficient dosage amounts for children.”
Muneer M., 30, has been living with AIDS for seven years. His condition worsened due to lack of regular supplies of medication. He developed ulcers all over his body. He died a month and half after this reporter visited him at the Imbaba shelter. His immune system had collapsed, his sister said.
*(Info-graph – Types of Medicine dispensed by the Ministry of Health)**
On his part, Dr. Salah Abdul Munim Al Sayed, director of the Imbaba Shelter Hospital denied there were delays in dispensing medication and said the supply was sufficient especially that new shipments are always ordered ahead of time.
Our third stop was the Tanta Shelter in the Al Gharbiya governorate north of Cairo. The medicine is given out by the Examination and Consultation Unit. A nurse there denied the existence of problems in dispensing of medication to AIDS patients.
Chart **Patient Stories**
Zeinab, 20, became infected with AIDS after her husband returned home from Italy. “We received our medicine from the Ministry of Health but it wasn’t regular so we went to the Al Abassiya Shelter and the same thing happened more than once,” she recalled.
Her husband decided to lower his dosage to ensure his wife has regular supplies.
After Nadia’s health worsened and she could no longer care for her four daughters, she decided to confess to her eldest child that she has AIDS. She found out she was infected with HIV shortly after the death of her husband. She also complains that supplies of medication are not regular.
Dr. Maha Al Rabat, the Minister of Health who was in office during the time of this investigation, said medication supplies for all HIV patients were sufficient and drugs were dispensed regularly. However, in her view, a problem exists: the attitude and behaviour of patients who insist on asking for medication and out of schedule because of fears that supplies would run out.
After discussing with her the findings of her investigation, she promised to send a fact finding committee to investigate the conditions at Al Abassiya and Imbaba Hospitals. She also agreed that there were “problems and negligence in drug dispensing” at Tanta Hospital. But she blamed the patients saying they were “overly sensitive and impatient”.
For five months, this reporter attempted to get in touch with the “Global Fund for Tuberculosis, AIDS and Malaria”. The preliminary response came in November 2013 from Jomana Al Atwani, the fund’s official in charge of the Middle East and North Africa who said they were working with Egyptian officials and other companies to deal with the issue. She promised to send a detailed response. Despite several follow-up emails and phone calls nothing came through.
For now, many patients living with the AIDS virus live in fear that their immune systems will become compromised due to lack of regular supplies of medications and subscription of new drugs that are not suitable for their conditions. They do not want to end up like Thana who lost her life and left behind a husband who knows he could die any minute.
This investigation was completed with support from Arab Reporters for Investigative Journalism (ARIJ)and coached by Hisham Allam