Cancer patients struggle to survive the disease and costs, however 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. 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.
His breath was slow and desperate, taking every successful breath as if it were his last.
Early this month, Ronald Ahwera joined the agony queue at the Mulago Cancer Institute, the only cancer facility in a country of 34 million people.
Funding to the health sector, most of it from foreign donors, largely goes to three diseases namely HIV/Aids, Tuberculosis and Malaria. So cancer patients like Ahwera are paying a heavy price.
He had arrived here a few days earlier than 4th October 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.
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 Ahwera, 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, Martha Natukunda.
A dose of treatment for Ahwera’s cancer costs 200, 000 Uganda shillings at government rates, but goes for as high as 700, 000 Uganda shilling at the private clinics.
“We can’t raise this kind of money,” said Natukunda. She is still hoping that the hospital can get the drugs so that patients like Ahwera can access them for free.
Hospital officials say although some cancer patients are accessing treatment, many more others like Ahwera 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.
Moses Kamabare, the General Manager at National Medical Stores (NMS) confirmed that they 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.
However time is already running out and the tumour is growing by the day, spelling more gloom for Ahabwe.
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,” he adds.
We can’t treat them without all the drugs because that would be under treatment and we shall only be feeding the cancer,” he notes.
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 Ahabwe 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 Nathan 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 specialized so as government we provide what we afford. This explains some drug stock-outs,” he said.
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 two million Uganda shillings 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 34 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.