At 23 years, Eunice Mwaura started losing weight. Sometimes she would stagger because she would find it hard to walk properly.
Mwaura, who is now 32 years, suspected she had a problem when she went for a tooth extraction but experienced bleeding which lasted for a week.
Despite making several hospital visits the doctors could not pick what was her problem.
It was in 2014 when tests finally revealed that she was having Chronic Myeloid Leukemia (CML).
CML is a slowly progressing and uncommon type of blood-cell cancer that begins in the bone marrow.
“I was not able to walk, I was bedridden and I used a wheelchair for a whole year, it was very difficult for me to learn how to walk again and when I started walking I was staggering a lot,” she says.
“I remember there were times I would go to the market and step on stuff, people wouldn’t understand and would mistake me for being drunk,” she adds.
By the time of her diagnosis, her disease had advanced to almost stage three and needed urgent medical intervention.
She was admitted at Kenyatta National Hospital where drugs for her condition would cost Sh25,000 per month, something she says she could not afford.
The Max Foundation Region Head for Africa and the Middle East Cathy Scheepers during the marking of World Chronic Myeloid Leukemia at The Nairobi Hospital on September 23, 2023
The Max Foundation Region Head for Africa and the Middle East Cathy Scheepers during the marking of World Chronic Myeloid Leukemia at The Nairobi Hospital on September 23, 2023
Image: Magdaline Saya
The doctors said she had just three months to live. Her story would however change when one of the doctors at the facility informed her about Glivec International Patient Assistance Programme (GIPAP).
The project supports CML patients and others with conditions such as Gastrointestinal Stromal Tumours (GST) free of charge once they successfully enrol into the programme.
“I was given three months to live. In the process I lost hearing in one of ear and sight in one eye so I have hearing and eye impairment but I thank God I survived and here I am today to tell my story,” she says.
Mwaura has been on treatment for 10 years and has been using Glovec Imatinib.
“Early last year, I happened to relapse where the medication resisted working because I have using medication for a very long time. I had to restart all over again so now I am doing double of treatment that other patients are doing,” she adds.
GIPAP is a project of various stakeholders including the Max Foundation and Norvatis who have availed the medication, Axios International that aid in the distribution of the drugs and Henzo Kenya a patient support group.
The Nairobi Hospital plays a key role in coordination, storage and other logistics together with the Ministry of Health.
The programme was introduced in Kenya in 2004 at the Nairobi Hospital which was appointed as Glivec receiving and distribution centre, with the support of GIPAP physicians under Prof Nicholas Abinya.
The Nairobi Hospital CEO James Nyamongo during the marking of World Chronic Myeloid Leukemia at the facility on September 23, 2023
The Nairobi Hospital CEO James Nyamongo during the marking of World Chronic Myeloid Leukemia at the facility on September 23, 2023
Image: Magdaline Saya
The programme has expanded to administer a number of second line for free to patients who have disease progression while on first line treatment.
Data shows that the number of patents registered under the programme since inception in Kenya now stands at 2,301 of whom 1,482 are active while 176 are currently on second line medication.
The programme has so far been decentralised to four public cancer centres in the country.
They include Moi Teaching and Referral Hospital with 152 patients, Nakuru regional cancer centre with 75 patients, Jaramogi Oginga Odinda Teaching and Referral Hospital with 52 patients and the Coast General Teaching and Referral Hospital which has 25 patients.
“As one of the uncommon types of blood cancer, the management of CML is faced with many challenges ranging from limited capacity of health systems to provide necessary services to late stage presentation and inaccessibility of diagnosis and treatment,” Stephen Opondo from Norvatis says.
According to Abinya, the move to devolve the programme was made after it was observed that patients were struggling to come from various parts of the country to benefit from the drugs.
“We always wanted to devolve it but we did not have the structures until the ministry signed a contract and was partners with the Maks Foundation. It was now easier to use the ministry structures to devolve it,” he says.
The Memorandum of Understanding spearheaded by the Division National Cancer Control Programme at the ministry was signed in June 2021.
The MoU according to the Head of the division Mary Nyangasi, has enabled provision of tax exemptions facilitation of administrative and supply chain management of the products.
“So far it has been decentralised to four regional cancer centres in the spirit of UHC so that patients do not have to travel all the way, they can actually get care closer their homes,” Nyangasi says.
Stephen Opondo from Norvatis during the marking of World Chronic Myeloid Leukemia at The Nairobi Hospital on September 23, 2023
The plan he, says, is to devolve the programme further beyond the four cancer centres to ensure all Kenyans who can’t afford the drugs benefit.
The Nairobi Hospital CEO James Nyamongo reiterated the need to invest in creating awareness in communities for Kenyans to know that blood disorders and blood cancers can be treated.
“The narrative out there is that this institution is for the elites which is not the case. You can see from the programme when it started we have already treated about 2,000 patients and that is a great number,” Nyamongo says.
He said creation of awareness should be done by both the counties and the National government which should also go hand in hand with allocation of adequate resources that should go towards fighting the disease.
Chronic myeloid leukaemia typically affects older adults with experts warning that the risk is higher among men or people who have been exposed to radiation.
It’s caused by a chromosome mutation that occurs spontaneously but doctors are yet to fully understand what causes the mutation.
Many people don’t develop symptoms until later stages and the diagnosis is only made through routine blood work.
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