Government abandons cancer patients to die

Kampala- More cancer patients have dropped dead since the country’s only radiotherapy machine broke down fifteen months ago compared to same period in preceding years.
The condition of others unable to afford the alternative chemotherapy treatment, which on average costs Shs220,000 to Shs700,000 per week depending on drug prescription, have progressed to more advanced stages that predisposes the patients to dying.
A patient would on average need to receive three doses of chemotherapy a week, putting the treatment beyond the affordability of most Ugandan families in a country where per capital income is Shs2.5m.
This, according to health workers in both government employment and private practice, places the patients closer to their death.
“If cancer is discovered [or treated] late, we do both chemotherapy and radiotherapy; so, if the radiotherapy is not there, chemotherapy would not do well and you would expect such a patient to die earlier,” said Dr Amos Deogratius Mwaka, an Oncologist cancer awareness specialist at Kampala Cancer Registry.
That is the worrying state of affairs for Harriet Nakitto, 47. Too weak to stand up, feed or take a bathe unaided, rectal cancer has confined her to bed and diminished her life chances. Up to three care givers regularly support to lift her out of bed.
“For the last eight months, life has been a living hell,” said Ms Nakitto, writhing in bed at her sister’s home in Matugga, Wakiso District. She gave a blank stare at the ceiling blankly.
Unlike chemotherapy, radiotherapy localises treatment without affecting other parts of the body. But Uganda’s only radiotherapy machine broke down in March 2016, and a replacement has been far from coming in spite of repeated government promises.
“If there is no radiotherapy to shrink the tumour, the quality of life will be compromised as there would definitely be smell and the patient would hardly walk… and death may be near,” Dr Mwaka said, adding:
Amidst sobs, Ms Nakitto said doctors have told her that the rectal cancer would cure once she starts radiotherapy treatment. The machine broke down fifteen months and the government, after three flopped deadlines, now claims the Cobalt 60 radiotherapy machine being imported from the Czech Republic will arrive and be installed next month.
A swollen limp, incontinence (uncontrolled passing of stool or urine) and the accompanying foul oduor have added to the patient’s discomfort and misery.
“I am dying of pain,” said the mother of four. “When is the machine arriving? They said it was shipped last month. I cannot wait to get rid of this pain.”
Without money or alternative means, Ms Nakitto’s children have dropped out of school.
The twists and turns in the official promises on the machine procurement had a dramatic edge; a bitter fight among senior officials of Health ministry and Uganda Cancer Institute, the end user. And prospective countries where to buy it from changed from Canada, China, the United States and now the Czech Republic.
The government initially promised to deliver and install the Cobalt 60 machine within six months after the old out broke down beyond repair in April, last year. The deadline was moved to December 2016, shifted to February 2017, then back-to-back to April and May and now next month.
“The machine is already in transit as we speak and we expect to have the machine installed by July,” Dr Orem told Daily Monitor, referring to the Cobalt 60 piece the government says it has bought from Czech Republic.
Sometime in September, last year, President Museveni surprised the country by declaring that the government had shifted interest and would acquire the new cancer treatment machine from Varian Medical Systems, a leading manufacturing company based in the United States. A parallel attempt to procure the machine from China hit a dead end.
To cancer patients, this mirage narratives are not just about dates. It’s a verdict on how closer they are to death.
Ms Agnes Nankungu, 39, is a cervical cancer patient. She has spent six nights sleeping on the floor of the shade at Mulago in Kampala as she waits for any well-wisher to donate for her Shs10,000 needed for her transport fare back home in Nakaseke District, roughly 66 kilometres away from the city.
“I was operated and the doctors told me to buy drugs worth Shs220,000 because there is no radiotherapy machine. I do not have money now,” Ms Nankungu says, as she displays her tummy with surgery scars.
The patients cannot openly speak out or seek help from well-wishers as they fear reprimand by the administrators at UCI whom they accuse of intimidating them and taking offence on the basis that negative stories about the institute portray them to the public as incompetent.
According to ministry of Health, the government can only provide pain-relieving morphine drugs free of charge. This means a cancer patient has to part with at least Shs200, 000 on a weekly basis to buy other necessary drugs.
The patients say that the doctors tell them some drugs are either too expensive for government to buy or they are out of stock.
Figures from Hospice Africa Uganda, a non-government organisation which offers palliative care to terminally-ill people, show that some 1,183 cancer patients they have been supporting have died, which is higher by about 300 than lives lost in a year to the radiotherapy machine’s March 2016 break down.
There is no dependable government record to capture the number of patients that have died at the facility while Kampala Cancer Registry, which keeps records of cancer patients who die in hospitals in Kampala and Wakiso districts, does not have current statistics.
The latest available records are for 2014, which showed 98 patients died that year within the catchment area.
Officials at the Uganda Cancer Institute (UCI) blame the rampant drug stock out on the inadequate annual budget of Shs53b, more than double the Shs123b that the institute says it needs to provide optimal service to patients.
At Mulago, there is a waiting shade for patients awaiting screening or to see a doctor for drug prescription. It has become a home to many.
Those who travel from the countryside to Kampala for treatment sleep on the hard benches in hope that the drugs would be re-stocked soon for them to obtain at no cost since they cannot afford them from private pharmacies.
A patient referred from the eastern Soroti District died there in the tent yesterday without being admitted or touched by any health worker, sixty hours after he was delivered critically-ill in an ambulance.
Mr Ivan Musoba, a skin cancer patient, has a worsening financial head ache. He is seeking Shs2.5m to have his right leg amputated because he can neither access radiotherapy nor afford chemotherapy drugs.
“This morphine is all I have to relieve the pain since it is given free of charge,” he said while holding aloft a bottle containing the morphine.
Although UCI insists that they have since devised alternative treatments including surgery and chemotherapy, after the break down of the machine in March last year, other specialists say they are not as effective.
Installing a new radiotherapy machine, both care givers and patients say, is the surest option to rescue people from the jaws of death.
Ms Nakitto has languished in physical, social and psychological pain despite being on the alternative chemotherapy treatment.
She spends Shs650, 000 on drugs each week and to meet the costs, she has had to sell most of her personal property and wipe out her business capital. She said she now suffers the ignominy of begging for money from friends, family and well-wishers, which makes her a burden to others.
According to a palliative care nurse, the former business woman’s cancer which is more sensitive to radiotherapy has already progressed to advanced stages that she can only be put on palliative care to have a painless death. Put another way, she is waiting to die like many other cancer patients who say they feel abandoned by the government.
Following a public opprobrium when the radiotherapy machine broke down, the then State Health minister in-charge general duties, Dr Chris Baryomunsi, said they had reached an understanding with the Aga Khan Hospital in Nairobi, Kenya, which had agreed to treat at no cost some 400 cancer patients.
The government, he said, would arrange transport and accommodation for the patients while in Kenya.
When they filed in, the story changed that the Aga Khan Hospital had offered 400 doses, which could treat even less than 100 people, and not full treatment for 400 patients. The latter more attractive option would still have excluded almost all the 44,000 cancer patients.
“[The] government could not find money since the money had not been budgeted for yet the financial year is coming to an end,” said Dr Anthony Mbonye, the acting director-general of Health Services.
Officials had initially said they were awaiting renovation of the old bunker, which was completed last month, but still there is no machine and no explanation.
Dr Jackson Orem, the director of Uganda Cancer Institute, explains away the delay in procuring the Cobalt 60 machine as a result of “complex process”, a narrative that flies in the face of initial government claims that it had, with support from the Vienna-based International Atomic Energy Agency, already bought the Shs1.8 billion radiotherapy machine.
To the government’s credit, the construction works for six bunkers at UCI to accommodate four linear accelerator and two brachytherapy machines is nearing completion. However, there is no allocation in the 2017/2018 budget for buying the machines and neither has the older-version Cobalt 60 machine been delivered to the renovated old bunker.
Prof Henry Wabinga, the head of the Kampala Cancer Registry, says that “the inadequate funds and poor follow up on the patients hinders their capacity to have timely records of the cancer mortalities for the whole country”.
In spite of the high cancer deaths, the Health ministry’s commissioner in-charge of non-communicable diseases, Dr Gerald Mutungi, said there is no national policy on the diseases and that each is handled on a case-by-case basis. Cancer, he however said, has been given special management through UCI.
“We are also trying to lobby for the budget increase, but people should also know that they have to contribute to their health care,” he said.
As a long-lasting solution, the government has announced that it will establish regional cancer centers at Mbarara, Arua, Gulu and Mbale regional hospitals. This way, Dr Mutungi said, they will be able to conduct monthly cancer clinics for screening and community sensitisation in rural areas because early detection can help save lives.
With a record of non-delivery of just one new Cobalt 60 machine to replace the old one donated by China in 1995, the government has set itself a new test with the promise of regional cancer centres that cancer patients will hope does not remain a paper tiger.

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