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Patients of rare disease lack key drugs as shortage bites


Double tragedy for patients of rare diseases

Poor diagnosis and costly medicine haunt those with myasthenia gravis

In July 2012, Beneddettah Wangui was diagnosed with a disease she had never heard about.

After years of pain and a search for treatment that had started during her teenage years, doctors told her she had fibromyalgia.

The condition, which was characterised by widespread musculoskeletal pain, fatigue, memory and sleep issues, was diagnosed when Wangui was 35 years. “Treatment, medical examination, and the search for diagnosis had consumed over Sh1 million by the time I got a diagnosis at Aga Khan Hospital,” says Wangui.

Seven years later, she has received a second diagnosis after her condition’s management deteriorated. “I have now been diagnosed with myasthenia gravis, a condition that causes weakness in the skeletal muscles responsible for breathing and moving body parts such as legs and arms,” she says.

This disease also causes drooping eyelids, difficulty in walking, chewing, swallowing, and double vision.

CRITICAL TO SURVIVAL

Wangui is one of the Kenyans who have come down with the rare disease.

According to a medical report on the disease by the Institute of Neurological Disorders and Stroke based in the UK, myasthenia gravis is estimated to affect more women than men. “The most affected, though, are women aged 40 and below and older men aged 60 and above,” says the medical report.

While the medicines Wangui and others take are critical to their survival and normal functioning, most of the patients are now facing a crisis as hospitals run out of the drugs. Symptoms will vary from one patient to the other.

Mary Maina, a member of the MGSK, is one of the patients whose symptoms were different. “My case was different than that of other patients in the group. The disease brought about hypothyroidism — a condition whereby the thyroid gland fails to produce enough thyroid hormone which affects nearly every part of the body including the heart, muscle, brain, and skin. It also started to weaken my heart valves,” she says.

Although myasthenia gravis, which is not hereditary, has no cure, it can be managed. “I got the initial diagnosis at Lions Hospital. I then got a proper and conclusive diagnosis at Aga Khan Hospital. The doctor said I would be required to take medication for the rest of my life. The medicine is supposed to ensure my body does not shut down,” says Maina.

TURN CANCEROUS

For example, before the diagnosis, her muscles would get so weak that she would not be able to hold her head up. She was always tired and would sleep for as long as 48 hours with minimal breaks. “There is no medicine in hospitals where we attend clinics. On the other hand, Kenyatta National Hospital does not stock these drugs. Most of us are now sharing prescriptions such as Mestinon and Azoran with our fellow members to stay stable,” she says.

The cost of one tablet of Mestinon is between Sh45 and Sh90, with the generic variety being the most affordable. “There are some of us who take up to 12 pills per day,” she says.

There are also varieties of pills that go for as much as Sh9,000 for a pack of 12 tablets. The lack of medicine is compounded by the fact that doctors in most rural hospitals have hardly handled these patients. “In a month, we spend between Sh25,000 and Sh100,000 on tests and treatment. In my case, the cost is higher because I have to be treated for hypothyroidism,” she says.

Maina says there are patients who also opt to undergo a surgery to remove the thymus gland. “It is advisable to take the surgery option to prevent the gland from turning cancerous, but most of us are not able to take it due to the high costs,” she says. This surgery costs up to Sh600,000 depending on the hospital where it is performed.