The triple whammy of barriers breast cancer patients face

Any mention of cancer in Kenya today elicits fear and trepidation. It is discussed in hushed tones from church pulpits to Parliament and slums, and villages to presidential events. It has reached catastrophic levels akin to terror attacks at the turn of this decade or the AIDS epidemic of the 1990s.

In just one month, earlier this year, the deadly disease claimed the lives of the chief executive officer of one of Africa’s most profitable companies, a sitting governor and a member of Parliament.

“So what about us, the common wananchi?” is the question the average Kenyan keep asking, too afraid to imagine their chances of survival in case of a cancer diagnosis, yet too conscious that the possibility is just a hospital visit away.

Maureen Omamo falls somewhere between the haves and the have-nots; she has insurance, but would it be enough if she needed cancer treatment?

On an ordinary day in December 2017, Maureen walked into the hospital, confident that she would saunter out a few minutes later with a clean bill of health. After all, she was in good health, apart from a minor nuisance, a crack in one of her nipples.

“It would heal, then recur. Since I had been breastfeeding, I dismissed it, believing it would go away eventually.” But her husband insisted she get checked.

A touch. A biopsy. The verdict was shocking: “I had breast cancer,” she says with a chuckle, eyes still puzzled, but with a determined countenance.

Things she had never heard of became a reality. Like HER2-positive (the human epidermal growth factor receptor 2 positive), the type of breast cancer she was diagnosed with.

After undergoing a mastectomy, she was put on chemotherapy even as her doctors insisted she had to undergo further hormonal treatment targeted to rein in HER2-positive.

“It turned out that Herceptin (which helps to treat cancer) is very expensive, Sh250,000 per vial at a Nairobi private hospital where I first sought treatment.”

She needed 18 vials for a full cycle of treatment – a cool Sh4.5 million in under one year.

As an electrical engineer working for a respected company, Maureen had an insurance policy which could cater for part of the medication. She also did a fundraiser, which was not enough. So, she opted to look for a cheaper alternative.

The help would be found 400km away in Eldoret, at Moi Teaching and Referral Hospital. The treatment here would be cheaper, she was advised.

This journey, which she took with many others, she realised, has been taken by many before her, and many more will take it, yet few will make it.

“Indeed, one of the women who became a close companion on the many journeys to Eldoret later died from the cancer,” she says pensively.

Maureen’s experiences are aptly reflected in a recent study in breast cancer which reveals barriers to treatment in Kenya and two other African countries, showing that a patient’s chances of survival is determined by delays in diagnosis and treatment, access to appropriate and quality care, and, more importantly, cost.

The study, Access to financial burden for patients with cancer in Ghana, Kenya, and Nigeria, shows that despite significant strides in detecting, managing and treating breast cancer in this region, it remains the most prevalent cancer, and the leading cause of death in women.

Breast cancer ranks first in new cases, followed by cervical, oesophagus, colorectum and stomach, and is the number three cause of death, according to Globocan 2018, the Global Cancer Observatory under the World Health Organization. And the number of all new cancer cases in Kenya was a whopping 47,888 in 2018, with 32,987 deaths.

The study, commissioned by global biotech company Roche and led by Dr Majid Twahir of the Aga Khan University Hospital and Razaq Oyesegun of National Hospital in Abuja, set out to unearth the specifics of the pain breast cancer patients undergo, by reviewing records of patients treated at one private hospital and a government hospital in each of the three countries.

In Kenya, the centres were the Aga Khan University Hospital and Kenyatta National Hospital.

The records were from 862 breast cancer patients – 299 from Ghana, 314 from Kenya and 249 from Nigeria.

Breast cancer patients travelled an average of 56 kilometres to seek treatment in Nairobi, with some coming from as far away as 398 kilometres for such services, according to the study which involved 300 records. This indicates that the capital is still a natural destination for cancer patients in smaller towns and in villages despite the government’s promise to devolve such services. However, Nairobi lacks the capacity to handle the large and ever-rising number of cancer cases from around the country, with many patients who cannot afford the cost of treatment in private hospitals having to book and line up for days or even months to be attended to at Kenyatta National Hospital (KNH).

For instance, KNH, in partnership with Roche, has a programme where patients are supposed to receive free Herceptin treatment, which slows the growth of breast cancer cells, but only a few do.

“I didn’t get it, I was told I had to wait for six months to get into the programme,” says Maureen. “My oncologist insisted that my condition was dire and aggressive and thus I needed treatment immediately.”

Such experiences of delays are confirmed by the study, which reveals that patients face significant delays of up to three months in all the three countries before they undergo further tests to determine the appropriate regime of treatment then treated.

And when the diagnosis and treatment finally happen, the care is not always of standard.

“The use of common screening methods such as a mammogram or breast ultrasound was less than 45 percent in all the three countries, with the core needle biopsy at 76 percent in Kenya and Nigeria, but only 50 percent in Ghana,” observes the report.

A core needle biopsy is used when tests point to one having breast cancer, as it clearly shows the presence of the cells.

But the elephant in the room for cancer care is the cost. When Juja MP Francis Munyua returned from cancer treatment in India last year, he told news reporters that he had spent Sh2.3 million on accommodation alone.

In 30 percent of the 300 cases studied in Kenya, the patients paid for diagnosis out of their pockets, compared with 93 percent in Nigeria and Ghana. Similarly, eight to 20 percent of patients studied in Kenya paid for their treatments out of pocket as compared to 89 percent of patients in Nigeria and 79 in Ghana.

“What we realised,” says Dr Twahir, “public insurance arrangements cover more cancer cases in Kenya than in Ghana and Nigeria. This despite Ghana arguably leading in the continent in implementing Universal Health Coverage, though they do not cover cancer.”

Maurine says that the National Health Insurance Fund (NHIF) covered her treatment for four sessions before her private insurance took over, again reflecting the findings that most Kenyans studied had both private and NHIF medical covers. This is, however, not representative of the general population, as only one in five Kenyans enjoy some form of medical cover, according to the Kenya Integrated Household Budget Survey (KIHBS) 2015/2016.

The study confirms that indeed patients who have a health cover have better access to treatment and therefore higher chances of survival. Among those patients receiving HER2-targeted therapy, the average number of cycles was five for patients paying out of pocket, against 14 for those with some level of insurance coverage. Maurine says she saw many of those without a health cover succumb early in the journey.

“This study is a critical first step to understanding the magnitude of the barriers that Kenyan breast cancer patients face in their fight against this disease, both to improve access to quality cancer treatment and ensure that our patients do not face financial catastrophe while fighting this disease,” says Dr Twahir.

“This is a rare kind of cancer affecting about 25 to 30 percent of breast cancers and whose treatment is extremely expensive. Being diagnosed with it can send a patient’s family to poverty, or in a worst-case scenario death and disharmony,” says Dr Stephen Maina, the medical director for East Africa at Roche.

Maureen completed her treatment this April. By the time of this interview, she hadn’t mustered the courage to test whether the cancer is in remission.