On the Expensive Queue: Struggles of Cancer Patients in Malawi
Aside from the excruciating pain they have to deal with, they live in a country where there is no specialized treatment for the condition.
Hundreds of cancer patients in Malawi are travelling abroad in search of treatment, in the process the cash-strapped government spend in excess of US2 million annually. On the other hand, individuals that cannot be included on the state list spend in excess of K30 million.
This is happening as the government plans to put up an operational cancer center in Lilongwe in the hope of reducing the burden on its international referral bill and individual patient expenses.
That project began almost seven years ago, but has missed a number of deadlines due to several hurdles. This means for the unforeseeable, Malawians with cancer will have to remain in a state of dire.
“Chemotherapy is one of the worst treatments that one can take. It is very strong and it brings a lot of changes to your body. I lost all my hair; my appetite, you know… the pain”.
That’s how emotional Sphiwe Thembulembu, a survivor of breast cancer, becomes when you ask her to narrate her story.
Chikhulupiliro Ng'ombe is a survivor of Leukemia. He feels the absence of radiotherapy for cancer patients in Malawi makes the fight against disease a farfetched dream. Radiotherapy is used to destroy cancerous body cells to prevent their multiplication.
“Some cancers that should have been treated cannot be treated because we do not have radiotherapy. So, radiotherapy is a very important method and the impact is greatly felt. We can see from the statistics that we have a very low survival rate when it comes to cancer patients in Malawi,” he says.
Priscilla Chamba has a son with brain cancer.
Today, the child can neither see nor hear because of his condition.
And further, he has problems walking: a result of increased implications.
“You need to scream for him to hear what you are telling him. He hardly hears when talking to him on the phone. He barely stands on his own; as such one needs to help him walk. Ever since this happened, he stopped going to school,” narrates Chamba.
Without effective treatment, it is a hard reality that her son is likely to stay in that condition for many years. These two cases are just a few of the many situations cancer patients in Malawi are in.
In both cases, the concern is limited access to treatment locally - both access to appropriate facilities and cancer specialists.
In Malawi, cervical and breast cancers are the most common types. It is estimated that 13 percent of the women in Malawi have breast cancer.
In a country like Malawi, cancer is a double tragedy, although there are interventions by the government to fight the disease.
Poor Data Management
Head of Oncology at Kamuzu Central Hospital in Lilongwe Dr. Richard Nyasosela says cancer mortality is close to 90 percent for those admitted to hospital.
Late diagnosis and late reporting are some of the major challenges, he observes.
He says, “Lack of funding is a big problem. You see, we have cancer registries in the country. The first one was in Blantyre but they have been facing a lot of challenges in getting data for our cancer patients as such we are in a difficult position to give you the exact figures of the incidence: morbidity and mortality of our cancer patients.”
“So, if the cancer registries are funded adequately, we should be in a better position to inform policy makers, even the public, that this is what is happening on the ground. But if you are in the hospital, you can see that a lot of patients are dying from cancer, especially women. More women are dying than men.”
Cancer is a leading cause of death globally. It accounted for nearly 10 million deaths in each of the last three years, according to a World Health Organization (WHO) 2022 report. That is one in every six deaths.
Most common being breast, lung, colon, rectum, prostate cancers.
WHO says there is evidence that people with cancer suffer distress, not only in early stages following diagnosis, but throughout the illness.
Need for Multifaceted Approach
Dr. Samson Mndolo is Principal Secretary for the Ministry of Health.
He observes that cancer in Malawi needs a multi-sectoral approach.
He says, “The psychosocial support in this case requires multisectoral and interdisciplinary collaboration such as in the Ministry of Health for treatment of specific mental health problems; counselling and nutrition, and the Ministry of Gender, Community Development and Social Welfare for support groups, transport in terms of coupons, and social cash transfers, among others.
“As government, we are in liaison with other players in the field as to what extent we should support transport costs for patients living with cancer [to hospitals] in a similar way it is done in other countries to uplift their welfare. As you well know, cancer requires a long time of treatment and it is very draining, financially”.
Because of the absence of radiotherapy and brachytherapy services in Malawi, most cancer patients are sent abroad for treatment. Either on government-sponsored tickets or in some cases self-sponsored.
Those who cannot, face a shortage of cancer drugs and limited professional personnel in hospitals locally.
A Lay Hope
Despite all these challenges, some cancers are curable.
Sphiwe Thembulembu survived breast cancer.
Her journey was tough and full of emotions. Cancer treatment, she says, is expensive, and in Malawi, the drugs are not always available.
In 2017, she had to spend K30 million for treatment in South Africa.
“I told my sister that I had been diagnosed with cancer and she was like oh! No! Please come for a second opinion. So, I went to South Africa and they confirmed that it was indeed cancer. So that is where I started my treatment. It was maybe close to K30 million,” recalls Thembulembu.
Long Wait for Cost-effective Local Treatment
The idea to put up a cancer centre at Kamuzu Central Hospital gave hope to Malawians. It would substantially cut costs for both the government and individuals. But where is that project today?
It is close to seven years now. Construction began in February 2017 but poor planning has stood in the way of meaningful progress.
Important structural requirements for radiotherapy and brachytherapy such as bunkers had been left out. They are being fixed just this time!
Health minister Khumbize Kandodo Chiponda gave an update on progress of the construction works on November 23 last year in parliament, indicating that only about 60 per cent of the work had been completed. But a good 400 cancer patients were on the waiting-list to be flown out for treatment.
Dr. Sanderson Kuyeli is the head of infrastructure development in the Ministry of Health. He says equipment for installation in the building should jet any time soon, completion of the centre should be in March.
He says, “The equipment has already been bought and it is just awaiting the readiness of the bunkers because as soon as the equipment arrives at the airport, it has to go straight to the bunkers; assembled and commissioned. We cannot do that if the bunkers are not yet ready.”
Malawi spends about US2 million to send cancer patients abroad for treatment. Apart from the cancer centre in Lilongwe, the Thomson and Barbra Mpinganjira Foundation has provided K2 billion for putting up a cancer unit at the Queen Elizabeth Central Hospital in Blantyre.
Health rights activist Maziko Matemba says in addition to problems being faced with the construction of the cancer centre in Lilongwe, there is a need for the government to review funding for non-communicable diseases in general.
He says, “Most of the treatment for non-communicable diseases, including cancer and diabetes, is Malawi government funded and you know Malawi government funding has been dwindling over time. That is why some of us were speaking to the minister of finance during the budget consultations to look into this.”
Cancer-survivor Chikhulupiliro Ng’ombe believes that it would make a big difference where the government provides psychosocial services for those living with cancer who are also faced with stress challenges.
Ng’ombe says this could best be achieved through partnerships.
“Government needs to partner with organizations that are patient-oriented or survivor-based to ensure that they give counselling that is designed to give hope to cancer patients. They should be able to provide psychosocial care.”
While the waiting is long, there is hope among most of the patients we have been in touch with that one day, Malawi will be able to effectively manage cancer conditions locally. Government will only achieve universal access to health for all when effective and affordable cancer treatment is available locally.
As Kobi Yamada once said, “Believe that there is light at the end of the tunnel. Believe that you might be the light for someone”.