Cancer patients struggle to survive the disease and costs

Ongaba sits outside the cancer ward at Mulago Hospital. Right: His grand mother takes him for a walk. PHOTOS BY STEPHEN OTAGE

Most cancers can be prevented and even cured if detected early and treatment made available. But frequent drug stock-outs and an ill-equipped health system mean many patients cannot afford the high cost of treatment, many end up dying. Saturday Monitor’s Evelyn Lirri examines how patients struggle to survive the disease and its costs. The scene was undoubtedly moving. His breath was slow and desperate, taking every successful breath as if it were his last.

Early this month, Alphonse Ongaba joined the agony queue at the Mulago Cancer Institute, the only cancer facility in a country of 30 million. Once a rare disease, cancers of various kinds are emerging to be a big killer in Uganda. Despite this threat, many of these cancers are either not getting treated or costing huge sums of money.
Funding to the health sector – most of it from foreign donors – largely goes to three diseases: HIV/Aids, Tuberculosis and Malaria. So cancer patients like Ongaba are paying a heavy price. He had arrived here a few days earlier than September 17 when I met him.

The 13-year-old was diagnosed with Burkitt’s Lymphoma, a type of cancer common in children. He has a swollen jawbone, his breath emits a foul odour, blood oozes from his mouth, most of his teeth have fallen out, and he cannot eat food and has to depend on fluids. He is in severe pain.

Treatable cancers
Doctors say although Burkitt’s Lymphoma is highly aggressive and life threatening, it is also one of the more curable forms of cancer. But for patients like Ongaba, the chances of being cured look too distant.
Since arriving at the cancer institute, he has not received treatment. “We have been told that the drugs are over so we have to buy them from the private clinic,” said his sister, Ms Martha Among. A dose of treatment for Ongaba’s cancer costs Shs200,000 at government rates, but goes for as high as Shs700,000 at the private clinics. “We can’t raise this kind of money,” said Ms Among. She is still hoping that the hospital can get the drugs so that patients like Ongaba can access them for free.

Hospital officials say although some cancer patients are accessing treatment, many more others like Ongaba are not. This is because the cancer institute doesn’t have drugs to treat Burkitt’s lymphoma. The drugs are supplied by the National Medical Stores. Mr Moses Kamabare, the General Manager at NMS confirmed to Saturday Monitor that they (NMS) have not supplied some of the drugs but said that the various drugs are purchased from different manufacturers. “Any one would understand that we don’t buy these drugs from the same manufacturers so they also supply them at different times. We would have loved to have them supplied at the same time but we can’t,” he said. But time is already running out and the tumour is growing by the day, spelling more gloom for Ongaba.

Combination treatment
Dr Jackson Orem, the director of the Mulago Cancer Institute, notes that cancer patients take several medicines, not just one and if the deliveries are made at different times, administering treatment becomes more challenging.
“Drugs are given in combination. So if you are supplying you need to supply a full range of drugs so that they can fit in the combinations that are prescribed,” he says.
“If you supply only one drug then we have to look for two or even more drugs to make a full complement of the combination. The effect is that patients are asked to buy those medicines that are not supplied. If the patients have the money then they buy the drugs. If they don’t have the money, then we are stuck. We can’t treat them without all the drugs because that would be under treatment and we shall only be feeding the cancer.”

Although a significant proportion of cancers in Uganda can be cured by drugs, surgery, radiotherapy or chemotherapy, especially if they are detected early enough, the grim reality of drug stock-outs and an ill-equipped health system means many patients do not have access to early diagnosis, screening or palliative care - all of which have contributed to the gradual increase of cancer patients and the resultant high cost of treatment.

The story of Ongaba is a case study of the agony faced by many cancer patients in Uganda -that of how many treatable cancers do not get treated because the drugs are not available in the government facilities forcing patients to shoulder hefty out-of-pocket costs, sometimes millions of shillings per month.

Many patients, especially the poor, have been hit hardest as they are forced to buy the prescribed drugs at a market price, considered too expensive for the average Ugandan. And for many, at the end of the day, the cost is a deciding factor of whether a patient lives or dies. Dr Kenya Mugisha, the acting director of Health services in the Ministry of Health, acknowledges that cancer treatment is prohibitive for many poor patients. “The problem has generally been that cancer is a very expensive disease to treat. The medicines for cancer are highly specialised so as government we provide what we afford. This explains some drug stock-outs,” he said.

Costly treatment
Dr Orem said most cancers can be prevented and treated if patients turn up earlier and the cost would be relatively low. Often times though, he said, patients come when the cancers have progressed, making treatment not only difficult but also grossly expensive. “The cost of treating a patient who has come early is as low as a quarter of treating one with the advanced disease and with a relative amount of money, the chances of cure is high but with a lot of money you have spent, the chances of cure are not there,” said Dr Orem. According to the medic, treating a cancer patient would cost in excess of Shs2 million for each cycle of treatment, with patients receiving at least six cycles.

Even this is not a guarantee especially for those patients with advanced stage cancer because as Dr Orem explains, by the time the patient has received the six cycles, the cancer will have reduced by just half, meaning a patient needs to be started on another cycle of medication.
But there is a dilemma to this too. Doctors say patients at this stage are less likely to withstand more treatment. “So you end up in a situation where you want to treat but the patient can’t tolerate your treatment any longer,” said Dr Orem.

Already overstretched, the Cancer Institute is virtually taking the entire burden of cancer patients as the other government-run hospitals across the country do not have the expertise and infrastructure to handle the patients.

Often times, this leaves the patients with no option but to look towards costly private hospitals or join the long wait at the Institute-sometimes at the cost of their lives. The cancer burden has further been triggered by a shortage of specialists.

There are only five cancer doctors for the 30 million Ugandans, with the institute seeing upwards of 10,000 patients every year. But having these five doctors, Dr Orem says is a “great” achievement because five years ago, he was the only Oncologist (cancer specialist) in the country. “With new cancer patients coming in and old ones coming back, you are looking at about 12,000 cases per year and this year we are projecting it could reach 14,000,” said Dr Orem.

Broken radiotherapy machine
Against the backdrop of rising cancer cases and costly treatment, the country’s only radiotherapy machine is too old and falling apart. Although crucial in cancer treatment as the radiation rays is what is used to destroy or reduce the growth of cancer cells in the body, the machine has been out of use for the past one month.

Dr Joseph Mugambe, the head of the Radiotherapy department at Mulago Hospital said they had already ordered for spare parts from China and are expecting them to arrive over the next two weeks. He said the machine which is 15 years old breaks down frequently and will now require replacement. But as the radiotherapy machine is awaited, and the number of cancer patients keeps growing, health authorities will in the long run be overwhelmed by the numbers and cost of treatment unless huge investments are made in cancer prevention.

A cry for help

Seven-year-old Ssekandi was diagnosed with Leukemia, a form of cancer that affects the blood or bone marrow in 2008. Ssekandi is one of the patients who have been at the Cancer Institute longest, according to a nurse in charge of the ward.

His mother, Ms Josephine Nakamatte, says Ssekandi was first brought to the institute in March 2008. Since then she has made several trips to the hospital to get treatment for her son. The 29-year-old widow from Wakiso District knows too well the struggles and costs of cancer treatment. “At times he gets the treatment but sometimes he doesn’t. It has been a big challenge for me. Because the drugs are expensive, I can’t afford to buy them from the private pharmacy when the hospital runs out. I have to wait for either a good samaritan to buy them or the government to supply them.”

In more than two years, Ms Nakamatte says her son’s treatment has cost millions of shillings-much of which has been paid by charities. Ssekandi’s condition has been fluctuating depending on whether he gets treatment or not. As a result, he hasn’t been to school since he was diagnosed. Leukemia is treated with a combination of drugs and chemotherapy regimen.

Currently Ssekandi is being treated with L-asparaginase-an anti-cancer chemotherapy drug. Joweria Kakembo, a nursing officer at the cancer children’s ward said Ssekandi will require five vials-a-day of the drug for three days. Each vial will ordinarily cost Shs350,000. But this time round Ssekandi is lucky that the institute has the drugs.

Diana Nafula is a 10-year-old pupil of Kibuye Primary School in Busia District. For the past three months, she has been admitted at the Mulago Cancer Institute. She is suffering from Osteosacoma-another common form of cancer in children. This type of cancer usually affects the bones and occurs in areas along the knee, thighs and shoulders. Although it can be treated with chemotherapy, most patients end up being amputated when the cancer spreads.
Nafula has had her left leg amputated as a result of this cancer.
Although she has not been to school since being amputated, Nafula said she wants to become a doctor so that she can treat children with cancer.
Edith Namalu, who is taking care of Nafula, said her sister has only received drugs once from the time they were admitted to the hospital. “We are told the medicines are not available so we have to wait because my father doesn’t have the money to buy them from the pharmacy,” said Ms Namalu.
Her father, who has been taking care of her returned to their home in Busia to look for money to buy the drugs. For now Nafula will have to go without medicines until free drugs are availed or until her father finds money to buy them.

At eight years, Ivan Nyangabyaki should be enjoying his childhood. Instead I met him seated on his hospital bed in severe pain. He has been admitted at the cancer ward for the past one month after he was diagnosed with Burkitt’s lymphoma. He has a swollen jawbone and he cannot eat so he has to depend on fluids.

Nyangabyaki and his peasant mother, Ms Rose Namutamba, hail from Kamuli District. She explains the ordeal she has gone through since coming to the hospital. “My son hasn’t been given any treatment. Doctors said the drugs he requires are not available at the moment and so we have to buy them from private clinics yet they are expensive,” she said.

Instead, Nyangabyaki has been given Oral Morphine solution- a form of liquid usually used to relieve pain. His mother said because the drugs are not there at the institute, she requires up to Shs500,000 to buy them from the private pharmacy. Already she has run out of money to buy food while she awaits treatment. “If I can’t get money for food, how can they expect me to afford all the drugs? I don’t even have money that will take me back home so I have to wait here until we get the treatment,” she said.

Joseph Mage is also battling Burkitt’s lymphoma. The cancer has affected his eye. It started as a small tumour but is now fast growing. Because of the pain, Mage can hardly open his left eye now. The 12-year-old has been admitted for the past two months now after his condition deteriorated.

As his mother explained, they have made several trips to the hospital since October 2009 when Mage was first diagnosed with cancer. “At times I don’t have money to make the trip from Mayuge and when I get the money, the drugs are not available and I am told to buy them. But they are very expensive,” she said. Because Mage has had to forego some crucial drugs either because his mother could not afford or because they were out of stock at the institute, he has developed disease lapse. Doctors are now preparing to start him on second-line drugs.