Free Childhood Cancer treatment: Patients still paying despite government’s promise

In this investigative report, The Fourth Estate details how desperate parents are forced to choose between their children’s lives and the ruin of their finances as childhood cancer treatment remains unaffordable despite the government’s promise to provide coverage under the national health insurance scheme.

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Ghana’s First Lady, Rebecca Akufo-Addo, announced a possible enrolment for the treatment of the four types of childhood cancer during the launch of the Second National Health Insurance Scheme (NHIS) week celebration in November 2021. Mrs Akufo-Addo, a board member of Lifeline Childhood Cancer, a non-governmental organisation, was at the forefront of the campaign for the government’s enrolment of childhood cancer patients onto the NHIS.

Eleven months after that announcement, Vice President Dr Mahamudu Bawumia, confirmed free treatment for children with cancer, stating that it took effect from July 1, 2022. According to Dr Bawumia, that intervention was supposed to relieve parents of the financial burden and secure the future of young people.

“Our children’s present and future can only be secured if all the factors that threaten their existence and quality of life are eliminated. We are determined to make it happen and we should not relent,” he said.

When The Fourth Estate wrote to the National Health Insurance Authority (NHIA) requesting information on health facilities undertaking free childhood cancer treatment in Ghana, the NHIA presented a list of seven public health facilities.

When The Fourth Estate visited the facilities to ascertain the reality on the ground since the announcement by Vice President Dr Bawumia, and Mrs Rebecca Akufo-Addo, results were a far cry from the public declarations.

Cape Coast Teaching Hospital

Susanna started cancer treatment for her child at the Cape Coast Teaching Hospital (CCTH) in March but halted because, according to her, most of the drugs were usually not available at the CCTH. She had to abandon the treatment in Cape Coast and travel over 140 kilometres to the Korle-Bu Teaching Hospital (KBTH) to seek treatment for her only child who has Wilms tumour– a rare kidney cancer that mainly affects children.

Susanna said most of the infusions given were covered by insurance but because she could not readily get the needed drugs, she had to go to the KBTH.

Susanna’s story was corroborated by a paediatrician at the CCTH who does not want to be named. The paediatrician said the hospital is doing its best but run out of drugs, hence, the referral of patients to private health facilities and pharmacies to get the chemotherapy drugs.

“There is also one problem that has not been clarified. Childhood cancer involves a lot of tests. It has not been specified whether NHIS is covering the examinations before the diagnosis or just the treatment,” the doctor said.

Korle-Bu Teaching Hospital

Susanna’s woes deepened when she decided to continue her child’s treatment at the Korle-Bu Teaching Hospital in May this year.

She said: “I have paid for every test. From CT scans to surgery and all other tests for theatre. I have paid for all the chemotherapy drugs and medications given here [Korle-Bu Teaching Hospital].”

Susana and her child’s experience with the proclaimed free cancer treatment for children is not an isolated case.

Jayden, the only child of Abena, was also diagnosed with cancer of the eye. Abena showed The Fourth Estate receipts covering various medications and services she had paid for during the 12 months of treatment. She paid GH₵66.40 for dextrose in sodium chloride intravenous infusion, an infusion that according to the NHIA, is generally supposed to be covered under the health insurance. She also paid GH₵349.00 and was issued with a receipt covering ward fund, eye centre miscellaneous, feeding, accommodation, and examination under anaesthesia.

“If there had been any support from the government, I would have been very grateful. No chemotherapy drug is free under the NHIS,” she said, worried about the lack of some essential resources needed for cancer treatment.

“At times you have to buy the IV [intravenous] set. Sometimes you don’t buy it, the nurses give it to you,” Abena added.

Tests are conducted before cancer diagnosis and subsequent ones are conducted to monitor a child’s treatment process and all these come at a cost. To verify some of these complaints from parents, The Fourth Estate reporter enquired from the central lab of the KBTH which of the 37 tests on the Korle-Bu lab form were covered by the NHIS. The official at the central lab marked only five of the tests on the form as covered by the NHIS.

Some of the tests, according to the NHIA 2023 revised tariffs for public health facilities, showed that some of the listed services under the NHIS were not covered by insurance at the KBTH.

Parents paying for hospital maintenance disguised as drug costs

Another major concern of some parents at KBTH is a GH₵30.00 payment at the OPD before a child can be attended to. Parents, who bring their children for treatment at this facility, say the charge at the first port of call has become a burden. The Fourth Estate gathered receipts and noticed that this charge was payment for OPD maintenance and not OPD service as expected.

A parent said: “The GH₵30.00 could have been used to buy water or even food, but they are taking that too from us before they attend to our children. It is unbearable that we have to pay for everything though they claim insurance is paying. The only thing I didn’t pay for was my daughter’s surgery. The nurses informed me that a good Samaritan paid for all surgeries conducted on that day.”

Besides the GH₵ 30.00, the Central Laboratory at Korle-Bu also charges every patient GH₵ 10.00 for every laboratory visit as a cost for laboratory maintenance.

Greater Accra Regional Hospital (Ridge)

At the Greater Accra Regional Hospital, which is a four-minute drive from the NHIA Head Office, a Paediatric Oncology nurse, Patricia Boamah, told The Fourth Estate that despite the announcement that childhood cancer is covered by the NHIS, measures are yet to be put in place to ensure implementation.

“It is only on paper that policies have been put in place but no implementation. For now, medications given are not covered by the NHIS,” Ms Boamah explained.

She said the hospital does not have the required machines and experts to run diagnostic tests for cancer.

“We run what we call shared services with a facility such as Korle-Bu. We do not have any MRI machine, so we are compelled to refer patients to Korle-Bu and other private facilities,” Ms Boamah said.

Ms Boamah told The Fourth Estate that tests, such as Full Blood Count (FBC), used to be free but not anymore.

The FBC, according to Seth Agyemang, a Deputy Biomedical Scientist at the Korle-Bu Teaching Hospital, is a blood test that is used to detect abnormalities in the blood cells and could help to identify a wide range of diseases.

“In terms of cancer treatment, it is useful in detecting blood cancers such as leukaemia,” Mr Agyemang added.

The Greater Accra Regional Hospital, also known as Ridge, does not have a radiotherapy machine for radiotherapy treatment, so it refers patients to the Korle-Bu Teaching Hospital for radiotherapy services.

The situation is no different at other health facilities across the country. The Fourth Estate’s checks revealed that there are no MRI machines in some of the health facilities stated as providing free cancer treatment for children with the few ones available constantly breaking down.

The MRI, according to health experts, is a non-invasive imaging scan that uses strong magnetic fields and radio waves to produce detailed images of the inner parts of the body. Doctors say the absence of an MRI scan makes it difficult to identify cancerous tumours early enough to be able to start treatment. It is, however, not the only vital equipment lacking in the implementation of the free treatment for children with cancer.

The Fourth Estate also learnt during its investigations that, apart from the Korle-Bu and the Komfo Anokye Teaching Hospitals, no other public health facility listed by the National Health Insurance Authority had a radiotherapy machine.

According to doctors, the radiotherapy machine uses external beam radiation therapy to destroy cancer cells and shrink tumours. It is an important tool that helps in the recovery of a patient. A specialist paediatrician at the Greater Accra Regional Hospital, who prefers to remain anonymous, said the absence of a radiotherapy machine could cost the life of a patient.

“Not too long ago, when the planning machine at Korle-Bu broke down, I had a patient who had to wait six weeks to get unto the machine so you can imagine what it is. Radiotherapy access is very limited in Ghana, and even in Africa,” the paediatrician said.

The specialist said the government’s announcement of free treatment for childhood cancer had resulted in the loss of other sources of funding.

“It is really taking a toll on those of us practising. We were hoping that this was going to bring some relief. When I write medication, I have to think about where the money is coming from for the patient to access medication. As a healthcare worker, I need to think about where to find the money to treat the patient and I think it is not fair on us,” the specialist paediatrician said.

Holy Family Hospital, Techiman

The Holy Family Hospital at Techiman serves the Bono, Bono East and Ahafo regions of the country. Here, there is no special unit for children with cancer. Parents are, therefore, compelled to use the OPD of the hospital with other patients, who are in the hospital to seek treatment for various conditions. The Fourth Estate met Emelia who was diagnosed with Burkitt Lymphoma about a year ago at the hospital. Burkitt Lymphoma is a cancer of the bone marrow, often found in the jaw.  Health specialists say it is the most common type of blood cancer in children that manifests in the form of lumps and takes so much space making it difficult for healthy blood cells to grow.

Emelia’s father, Karim, said she started treatment at the KATH in Kumasi, where he bought drugs for as much as GH₵ 1,500.00 every two weeks. Mr Karim said that he spent GH₵ 36,000.00 for the one-year treatment of his daughter at KATH.

“I did not pay for infusions at the Holy Family Teaching Hospital. My insurance covered it and for that, I am grateful to the Holy Family Hospital for assisting me,” he said.

He, however, added that the “Holy Family Hospital has not acquired more drugs, and I am unable to buy it, so my child is still at home.”

Scarce Resources at Holy Family Hospital

A senior specialist Paediatrician at the Holy Family Teaching Hospital, Dr Jacqueline Asibe, told The Fourth Estate that an individual with National Health Insurance does not have to pay for OPD services. She, however, said the hospital does not have the needed machines such as the MRI scan and the radiotherapy machines required to conduct diagnostic examination and treatment. Dr Asibe said parents are, therefore, referred to the Korle-Bu Teaching Hospital for any other service that required radiotherapy which also added up to the financial burden on parents with children suffering from cancer.

“Due to the absence of the MRI, if a child has leukaemia, he or she needs to travel to Komfo Anokye, and it has to be through an ambulance. Currently, though we say ambulance is free, you have to buy fuel.  And the fuel alone costs GH₵ 1,000.00 for one trip,” Dr Asibe said.

The specialist paediatrician added that the shortage of essential resources needed for diagnostics and treatment compounded the problem. “The insurance package is there but, on the ground now the hospitals are ill-equipped because the reimbursement is not as regular as it should be. The drug that should be available for patients, sometimes they (patients) come and it’s not there. Even the lab tests, sometimes there is no reagent,” Dr Asibe added.

Tamale Teaching Hospital

Fridays are supposed to be busy days at the Paediatric Unit of the Tamale Teaching Hospital (TTH) because it is the reporting day for children with cancer to receive treatment, but on June 2, 2023, the place was quiet. The Fourth Estate reporter reached out to Suama Abdul-Latif, a parent at the facility. Madam Suama brought her five-year-old daughter suffering from retinoblastoma (cancer of the eye) for treatment. She said on her first visit to TTH after diagnosis, “I was told that this sickness is not covered by health insurance so I will have to spend a lot of money on it.”

Madam Suama said she paid GH₵ 1,000.00 on her first visit.

“Before the surgery, the doctor insisted on GH₵200.00 payment and we were told to pay GHS 560.00 after the surgery. I told them I didn’t have money so I would have to contact my husband. I am a trader who sells biscuits and toffees on a tabletop, so I don’t make much to be able to support my daughter’s treatment,” she said.

Madam Suama’s daughter, who is already five months into her treatment, is recovering. Her situation is not different from that of Wuzeifa Abdul-Latif, another parent whose child is undergoing treatment at the TTH.

Wuzeifa’s daughter is suffering from Wilms Tumour, also known as Nephroblastoma.  She was diagnosed in September 2022 and has already started chemotherapy.

“When we came, we were only told that his sickness was covered by health insurance but they don’t have any drugs there. We even paid for the labs,” Wuzeifa said.

Wuzeifa said before the treatment, the labs that were conducted cost her almost GH₵ 5,000.00 but for the treatment, she pays money each week depending on what drugs are needed.

“I usually pay between GH₵200 and 500,” Wuzeifa added.

Wuzeifa’s child’s chemotherapy treatment will last 27 weeks but she is already giving up, because she does not know where the next money will come from. Wuzeifa also paid GH₵ 35.00 for the FBC test at the Tamale Teaching Hospital when the actual price, according to the list on the NHIS, is between GH₵ 19.83 and GH₵ 22.41.

Komfo Anokye Teaching Hospital (KATH)

At the Komfo Anokye Teaching Hospital (KATH), parents said they had to pay for some of the services that were rendered to them, including radiotherapy. Angela Kwofie’s three-year-old daughter was diagnosed with Wilms Tumour in November 2022.

“Since we started treatment, I have spent about GH₵ 8,000.00. At the time [we started treatment], we were getting free infusions and paracetamol but after some time, we started paying for these medications,” Ms Kwofie said.

Another parent, Madam Asieduwaa, says her six-month-old child was diagnosed with leukaemia, cancer of the blood in May 2022. Leukaemia, according to medical experts, is the production of abnormal white blood cells that do not function properly. This means that an infected person will not be able to produce healthy white blood cells, which serve as potent infection fighters. An infected person may experience fatigue, weight loss, and frequent infections and they may bleed easily. One year after diagnosis, Madam Asieduwaa says she cannot afford her child’s treatment she started in May 2023.

“I have not been asked to pay for infusions, but I buy the medicines outside the hospital. It’s been almost a week, but I have spent almost GH₵ 1,500.00. I pay for the scans as well,” she said.

Ho Teaching Hospital

At the Ho Teaching Hospital, there were no patients at the time of The Fourth Estate reporter’s visit. However, hospital records showed that only one patient visited the hospital for treatment since the free childhood cancer treatment was announced. Information available from the hospital also suggested that the patient spent GH₵1,268.05 for the treatment of hodgkin lymphoma(Burkitt Lymphoma).

Background of childhood cancer treatment in Ghana

According to the World Health Organisation (WHO), more than 1,000 children are diagnosed with cancer globally, every day. It says more than 80% of children in high-income countries survive while about 80% of children living in low or middle-income countries are likely to die due to financial challenges and lapses in healthcare delivery. Of the estimated 400,000 children diagnosed with cancer each year, the WHO says most live in low and middle-income countries.

“The impact translates to lost potential, greater inequalities and economic hardship,“ according to the WHO.

In Ghana, as of 2018, about 42% of children with cancer were receiving treatment; since that year, 85% have completed a full round of treatment, an increase from 50% in 2010.

According to the World Child Cancer, a leading international children’s charity dedicated to addressing the global inequality in childhood cancer care, only about 7% of children in Ghana in need of paediatric surgery for conditions such as childhood cancers undergo the surgery they need due to the high cost of treatment.

The WHO, therefore, developed a global initiative for Childhood Cancer to improve outcomes for children with cancer around the world. “The goal is to give all children with cancer the best chance to survive, to live full and abundant lives and to live and die without suffering,” the WHO says on its website.

The Childhood Cancer Society of Ghana says Ghana has done tremendously well in the treatment of childhood cancer and in the implementation of the WHO goal. The four types of childhood cancer enrolled on Ghana’s health insurance are part of the six types of childhood cancer the WHO has enlisted as the common tracers of the global initiative.

“We are currently on 65% so we are on course with the WHO plan,” says the president of the Childhood Cancer Society of Ghana, Prof Renner Awo Lorna.

“[Regarding] the stage one and two [cancer] we have over 75% survival, but when in stage four, the survival is lower. In the Western world, you hardly get to stage four that’s why we need to focus more on awareness creation for early referral and low cost,” Prof Lorna added.

Prof Lorna said the childhood cancer units in the various hospitals, especially the Korle-Bu Teaching Hospital, relied on the support of philanthropists and international organisations to support parents with the treatment. She said the unavailability of chemotherapy drugs makes it impossible for the NHIS coverage of childhood cancer to be effective.

“Most of the cancer drugs are not imported by the government. They are imported by private pharmaceutical companies so there is an issue with capping the profit margin and there are taxes on the drugs as well,” she said.

Prof Lorna recommended the enrolment of other types of childhood cancer onto the NHIS to ensure access to all and to bridge the inequality gap.

NHIA insists that childhood cancer is free in Ghana

The Fourth Estate contacted the NHIA with its findings. In a letter, signed by the Chief Executive, Dr Bernard Oko-Boye, he said that childhood cancer treatment was fully covered by Ghana’s national health insurance, reiterating an announcement made in 2022 by the First Lady, Rebecca Akufo-Addo and Vice President Dr Mahamudu Bawumia.

“The NHIS benefit package covers and pays for the entire cost of treatment of the four CCs,” the letter stated.

In a meeting with three staff members of the NHIA prior to this response, they said that the NHIA had received complaints from the public about payments for childhood cancer treatment by parents while the NHIS already covered that.

They, however, said plans were underway to ensure an appropriate sanction for those found guilty.

The Ministry of Health did not respond to a request from The Fourth Estate for an interview despite agreeing earlier.

The second part of this story will present details on how donor funding to NGOs and some hospitals has been affected because of the announcement of free treatment for the four types of childhood cancer and its implications.

This story was done with support from Francis Appiah from the Ashanti Region; Hamidu Karim from the Bono East Region and Diana Ngon from the Northern Region.

 

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