Cancer patients, who cannot return to hospitals for treatment every fortnight, are opting for guardian shelters which are not even conducive for their conditions. ISAAC SALIMA writes.
Milikina Sozinyo, 36, is a popular figure at Queen Elizabeth Central Hospital (QECH)’s guardian shelter. The place houses friends and relatives of those admitted to the referral facility.
From a distance—physically and emotionally—Sozinyo looks like someone at perfect peace with her soul.
However, there is excruciating pain in her life which set in last year after she was diagnosed with breast cancer, one of the commonest cancers among women in Malawi.
Sozinyo, from Kamphepo Village, Traditional Authority Ganya in Ntcheu District, recounts the journey to her present state.
“It all started when a small lump developed in my right breast. Doctors at Ntcheu District Hospital recommended that I go to Kamuzu Central Hospital or QECH after suspecting I had cancer,” Sozinyo says as she forces a smile onto her distressed face.
In April last year, she was diagnosed with breast cancer at QECH where she was advised to go to a private hospital so they could check if the malignancy had spread to other parts of the body.
She was initially charged K45,000 but negotiated the amount down to K22,000 for scanning services.
Sozinyo was then enrolled on chemotherapy, a type of treatment that uses one or more anti-cancer drugs as part of a standardised regimen.
She has to travel to QECH every fortnight to get the treatment. Her husband abandoned her apparently because of her, condition, leaving her with the responsibility of taking care of their three children.
“I spend about K6,500 every fortnight on my hospital trips. There, it is also not automatic that I will receive the treatment right away as I need to get tested for my immunity first.
“I also have to get tested at a private laboratory where I pay K2,000 every time because if I were to wait to be tested at QECH, it could take even a month because there is always a long list of people waiting for the service,” Sozinyo says.
If the immunity is low, cancer patients do not get chemotherapy and will be made to wait until it improves. It is for such reasons that Sozinyo has turned herself into a landlord at the guardian’s shelter, where she had spent over two months the time we found her.
“I can’t afford to be coming here every two weeks. If I go back home, I will die because I will not have money for travelling here again,” she says.
While the guardian shelter offers refuge to the patient, she has to struggle every day to get meals.
She has to hunt for piece work daily, a task that she sometimes fails to undertake due to the pain in her breast.
Her chronic disease demands that she eats nutritious food and have enough resting time. She rarely gets these and dreadfully compromises her immunity in the process.
Sozinyo’s condition typifies what many cancer patients in Malawi go through as they fight to access chemotherapy services administered either with a curative intent or simply to reduce symptoms and prolong life.
Mercy Mponda from Chiradzulu District visits QECH every fortnight to get treatment for cervical cancer.
We met her after she had spent her fifth day at the guardian’s shelter because she had no transport money to travel back to her base.
On this day alone, the place had about 14 cancer patients who were either waiting for treatment or had been assisted but had no money for travelling back home.
Amid the struggle to deal with challenges in accessing treatment and making ends meet while waiting for chemotherapy, the patients also suffer discrimination from friends and relations back in their homes.
“Some of my own blood relatives do not want to be anywhere close to me. They say I may infect them with the disease,” Mponda laments.
Director of Health and Social Services at Ntcheu District Hospital, Stephen Macheso, says cancer patients are mostly referred to central hospitals so that they can be handled by experts who are not available in district hospitals.
“We offer healthcare at different levels. We handle some cases while we refer others to higher levels. District hospitals do not have the capacity to manage cancers,” Macheso says.
A histopathologist at College of Medicine, Steve Kamiza, the only expert who diagnoses cases such as cancer at QECH, said their workload is always heavy, such that it is not strange that some people opt for private labs.
This area is usually ignored. I am saying that because I am the only pathologist here, which means patients have to wait for a long time before getting their rest results,” Kamiza says.
In fighting for better services for cancer patients, a group of doctors working in the maternity section at QECH, calling itself Chatinkha Maternity Care, has been raising funds to help in cervical cancer screening in rural areas.
The group’s chairperson Frank Taulo expressed concern that gains being registered on cancer screening are being overshadowed by hassles patients continue to experience in accessing diagnosis and treatment services.
“It is not easy for a specimen to come from Chitipa to Lilongwe and get results back. Mostly, these services are not for free. These are some of the challenges we are facing.
“Another challenge is that we do not have many surgeons to work on these cases. We have cases all over the country but patients have nowhere to go because of lack of surgeons,” Taulo said.
Studies conducted by the Ministry of Health in the country showed that there were 10,300 cancer cases presented to public hospitals between 2009 and 2013. By 2018, the cases had risen to around 13,000.
In 2017, government embarked on a K10 billion project of building a national cancer treatment centre in Lilongwe to ease the suffering that patients of the condition endure.
The centre was to offer radiotherapy services which are currently not available in the country. But, almost four years down the line, the facility is yet to open for Malawians.
Our efforts to get government’s take on the issue has been in vain for weeks now, as officials at the Ministry of Health kept asking for more time before commenting.
In the meantime, cancer patients continue to struggle with pain while guardian shelters are also overwhelmed with people who have turned them into their homes.
George Musowa, whose Chira Fund Project takes care of guardians at QECH’s guardian shelter, said the project could not meet all the needs of people asking for transport to return home.
He has since asked the government and other well-wishers to consider allocating an ambulance or creating a special fund with which to assist stranded patients and those on cancer treatment such as Sozinyo.