Before she began using a wheelchair, Lucia Ndolo would stagger. People assumed she was perpetually drunk. But she was not. Ms Ndolo, now in her 50s, is among hundreds of Kenyans living with the little-known multiple sclerosis (MS), a disease that has left her paralysed and taken a financial toll on many Kenyan households.
“I was first diagnosed with multiple sclerosis 40 years ago when in high school. I was in class then all of a sudden I was unable to write, then my legs became wobbly,” says Ms Ndolo.
The disease that targets the central nervous system — the brain and spinal cord — affects speech and mobility.
To most people, waking up is seemingly effortless. The alarm goes off and you jump out of bed. But for MS patients, it’s a different world, there is a mismatch in communication between the brain nerves and the rest of the body. Each waking day is unique.
Dr Laura Musambayi is a medical doctor who was diagnosed with MS at the age of 15. She defied the odds and pursued a degree in medicine at the University of Nairobi.
But it is the frequent fatigue bouts and absenteeism when she misses work for even three weeks due to partial paralysis of the lower body that remind her of the challenges of living with MS.
Despite being a doctor, she can’t afford the disease modifying drugs (DMDs) that slow down the progression of the disease.
‘‘I just have to rely on alternative therapies to keep me going. But I wish I could afford the drugs,’’ she says. But she still counts herself lucky. Although she cannot afford the drugs, her training as a medical doctor allows her to sometimes treat herself or get assistance from colleagues, enabling her to cut down on medical expenses.
‘‘But my heart goes out to other patients who lack these privileges,’’ she says.
Worldwide, it is estimated that more than two million people suffer from MS. As multiple sclerosis has no cure, the disease progression cannot be stopped nor can it be predicted. Patients have difficulty with simple things like blinking, walking, controlling bladder or swallowing food.
But patients in developed countries can breathe easy — they have access to affordable drugs and support systems.
Over the recent years, medicines that slow down progression of the disease have be launched globally. Even though they do not cure it, the disease modifying drugs (DMDs) delay the onset of disability in patients. They also reduce the frequency and severity of multiple sclerosis attacks.
A monthly dose of the DMDs costs Sh100,000 to Sh250,000, making them way out of reach for almost all multiple sclerosis patients in Kenya who are in dire need them.
Worse still, these drugs are not even available in Kenya and are only imported upon request.
“What’s even more painful is that the price of these drugs here is roughly the same as their amount in the developed world,” says Dr Musambayi.
“The cost of healthcare was a huge burden to my parents. There were times when I would be admitted in hospital after an attack and the bill would be about Sh500,000,” notes Dr Musambayi, who later founded the Multiple Sclerosis Association of Kenya to offer support to other patients with the condition.
Patients in Europe and in the US are cushioned from these exorbitant amounts as medical insurance schemes meet the treatment costs.
In Kenya, MS patients are not as lucky. Being a chronic illness, insurance companies shy away from covering the condition. A few that might consider doing so offer very high premiums covers that most people cannot afford.
The disability tax relief is also hard to come by and the process of getting reprieve is shrouded with long bureaucratic processes.
‘‘I applied for it but never heard from those in-charge. The tax relief can make life easier for people living with MS, allowing them to afford disability aids among other necessities,’’ says Dr Musambayi.
Due to the high cost of recommended drugs, most MS patients in Kenya rely on multivitamin tablets and steroids to manage the condition. Though helpful, the drugs are not as effective as DMDs, they just boost immunity.
“They are also not cheap. They cost more than Sh60,000 annually,” says Dennis Gitonga who has lived with MS for about a decade, adding that meeting these costs together with other family expenses is a burden to most people.
Prof Paul Kioy, a consultant neurologist at Kenyatta National Hospital says that almost everyone who is diagnosed with MS suffers from a form of disability at some point in their life as the disease progresses. If the disease affects speech, a patient faces another financial burden of having to buy speech therapy drugs.
The body function affected usually depends on the location or types of nerves hit by MS.
If the disease strikes optical nerves, it will cause visual problems. If nerves in the spine are affected, paralysis will occur. People may also suffer from mental conditions like stress, depression or anxiety when nerves in the brain are affected.
In Kenya, there are about 400 multiple sclerosis cases known to doctors. Medics say there may be hundreds other undiagnosed cases.
“The 400 patients are the ones we know and are treating. But there may be many more people who may not be aware as they may confuse early symptoms with normal muscle and joint problems. Some may also never come to the hospital,” says Dr Juzar Hooker, a consultant neurologist at Aga Khan University Hospital, adding that the disability caused by multiple sclerosis may be reversible or permanent in some instances.
Due to a lack of specialised centres dealing exclusively with multiple sclerosis patients in Kenya, it is difficult to collect accurate data on the disease’s prevalence.
Diagnosis of MS is also a major hurdle. For instance, Kenya has just about 12 neurologists specialised in handling the condition and most of them are based in urban centres .Dr Musambayi says that delay in diagnosis is a major challenge impeding proper management of MS in Kenya since most health workers —especially in rural facilities — lack adequate awareness on the disease.
Patients will come to a health facility complaining of fatigue —a common symptom of MS— but it will be treated for malaria or anaemia.
When they don’t get well and no infection can be seen in their blood, she explains, they are likely to be labelled as pretenders. So the patient goes back home dejected. Then other MS symptoms including numbness, loss of vision and paralysis creep in.
In addition, the MRI scans required to confirm suspected multiple sclerosis cases are also inadequate and only found in major hospitals in urban centres. A scan costs about Sh30,000.
Multiple sclerosis remains a neglected chronic disease, still taking a back seat in health sector priorities despite being a major cause of non-traumatic disability in the country.
People can be diagnosed with the disease at any age although research shows that the average age for multiple sclerosis onset is 30 years.
The disease, therefore, hits people at their most productive ages when their contribution to economic growth is immensely required. This is also the time when most people are starting families. But with drugs, these patients can lead normal lives for some time before the disease finally takes its toll.
“Getting MS isn’t the end of life. With appropriate care and management of the condition, people can still lead productive lives that contribute to the nation’s development,” says Dr Musambayi.
Patients are hoping the Health ministry will strike deals with drug manufacturers to lower prices. Public-private partnerships have yielded desirable results as has happened in the past for expensive drugs for treating non-communicable diseases like diabetes, cancer and heart ailments.
Such deals have benefited chronic myeloid leukaemia patients. Poor patients with the rare kind of cancer known as chronic myeloid leukaemia, previously just waited to die from the disease as they could not afford the recommended medicine — Glivec that costs more than Sh500,000 a dose.
But concerted worldwide deliberations between drugs manufacturer Novartis, governments and other stakeholders led to the establishment of the Glivec International Patient Assistance Programme.
Through this initiative, Novartis provides the drug at no cost to eligible patients in developing countries like Kenya who are not insured, reimbursed and cannot pay for treatment privately.