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Fierce fight against aplastic anaemia

KAINGA— I cannot afford the treatment

Every time he breathes in and out, runs around or walks at a fast pace, he steps past his normal self and normal health and invites more, not freedom, but pain into his life.

This is because six months ago, he, suddenly and unannounced, took a step into the great unknown called ill-health.

After plunging into the huge hole of blackness called ill health, any delays to seek medical attention could be analogous to diving into the depth of another unknown called death, something he does not want to hear.

“I want to live; I want good health— the type of health I enjoyed before I was diagnosed with a disease called severe aplastic Anaemia (AA) in March this year.

“I suspect that I started suffering from the disease in 2017, for that is when I started breeding profusely for no apparent reason, having incessant headaches, palpitations as well as general body pains. It did not occur to me, at the time, that I had this disease,” says a seemingly weak Jeremiah Kainga.

At 28 years, the medical assistant at Ulongwe Health Centre feels that he has had an unfair load of health challenges on his shoulders.

“Why me?” he says.

What else can he say when his life now revolves around trips to the hospital at least once a week.

Having AA means having low levels of food and oxygen in one’s blood because levels of red cells are low in blood. It also means enduring incessant headaches and bleeding when levels of platelets— which are supposed to be between 150 and 450 when in good measure— are low, at between 2 and 3 and not 150 and 450 as required.

That is what happens when bone marrows fail to make blood cells.

In fact, this is what has been happening since local hematologist Dr Mlombe diagnosed Kainga with AA in March this year.

That time, when medical personnel conducted an MRI scan, they discovered that Kainga was bleeding in his skull.

“Since then, levels of my platelets and red cells get lower than recommended every week, sometimes twice a week, and I have to rush to the hospital to get blood.

“I survive on blood, literally,” he says, referring to blood he gets at Queen Elizabeth Central Hospital (QECH) in Blantyre.

The blood he gets from QECH— which the referral facility gets from the Malawi Blood Transfusion Services (MBTS)— is B+ [in terms of type].

Kainga— who stays in Chigwenembe Village, Traditional Authority (T/A) Kalembo in Balaka District but is originally from Mwanavumbe Village, T/A Mulolo, in Nsanje District— gets 3 pints of blood every week and, when he has had a good week, health-wise, 3 pints of blood in 12 days.

Malawi needs at least 80, 000 units of blood every year but MBTS collects and supplies around 65 percent of the national blood need, the organisation’s publicist Allen Kaombe says.

Statistics also show that around 65 percent of those who consume blood and blood products are women and children, justifying the role blood plays in safe motherhood issues.

It turns out that patients with AA need their fair share of the red stuff from the blood banks too.

At first, the Balaka resident used to get blood in the district he works in but shortage of blood meant he could be kept waiting for days on end. He had to make hard decisions and decided to be trekking to QECH every now and then to get the life-saving liquid.

Of course, according to his wife Grace, this has come at a cost.

“He spends K80,000 a month on transport alone, not including food and other costs. And, here, we are talking of trips he makes once a week. And the means of transport we are referring to is minibus.

“However, when levels of platelets run low, we find ourselves in a situation where he has to travel to QECH in Blantyre twice a week. In that case, the costs escalate. Sometimes he hires a taxi when time is not on his side, which increases the cost incurred. For your information, he is always accompanied by someone,” she says.

Grace is also worried that bills incurred in transport costs are depleting household financial reserves as their two-year-old child who is in nursery school needs fees every month, not including appendages such as clothes, luggage, shoes and other things.

On his way to QECH or back home, Kainga explores the mystery of his present reality, ever enlarging and refining and redefining his understanding of AA.

Often, he wishes what is happening to him were not true.

“I want to live a normal life, like everyone else— not life defined by the supply of 3 pints of blood every week or every 12 days. I just want to be happy again, unsullied by the painful reality of severe aplastic anaemia,” he says.

The truth is that, at a high cost, he can get back to his feet, enjoy good health.

But the cost comes with a trip to South Africa or India— especially the latter, where Dr Mallikarjun Kalashetty, of arex Medical Services, is ready to treat him at ManipalHospitals site in Bangalore.

He is a consultant haematologist and hemato oncologist with over 15 years of post-graduation training, teaching and work experience.

He carries out autologous, allogenic stem cell transplantations, diagnosis and treatment of all types of haematological malignancies, diagnosis and treatment of all types of benign haematological disorders as well as diagnosis and treatment of congenital and acquired bleeding diathesis, among others.

However, high costs associated with the trip to India have turned Kainga into the garden of fear.

Flowering at the mention of K25 million, the fear seems to grow every passing day, so that, as at now, his hope that he will get past AA has been reduced to ashes.

“I need support,” says the medical worker who does not have the financial ladder to take him to India.

He has a point.

An evaluation of his condition prompted health personnel in India to come up with the following ‘financial’ prescription:

Diagnosis: aplastic anaemia

Possible investigation: Blood investigations including PNH work up and Fanconi’s anaemia work up if not already done

Line of treatment: Allogenic stem cell transplantation if an appropriate donor is found. If no appropriate donor is found, we will treat him with Immunosuppressive therapy if Fanconi’s work up is negative aEvaluation on outpatient basis: $1,500

Cross consultation: $1,000

Option 1: Allogenic (matched sibling). Bone marrow transplantation: $28,000

Option 2: Immunosuppressive therapy (if no donor is found): $22,000.

Faced with such bills, Kainga can only exclaim: “I cannot afford the treatment. I need help,” Kainga says.

World Health Organisation (WHO) indicates that, globally, anaemia affects 1.62 billion people (95 percent), which corresponds to 24.8 percent of the global population.

The highest prevalence is in preschool-age children (47.4 percent) and the lowest prevalence is in men (12.7 percent.

According to www.cancerindex.org, “Anaplastic anemia is not a cancer. AA is a rare disease in which the bone marrow is unable to produce adequate blood cells; leading to pancytopenia (deficiency of all types of blood cells). AA may occur at any age, but there is a peak in adolescence / early adulthood, and again in old age”.

According to the British Journal of Haematology (BJH), most cases of AA are idiopathic, which the Oxford Dictionary defines as “relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown”.

However, BJH defines aplastic anaemia as a rare and heterogeneous disorder. It is defined as pancytopenia with a hypocellular bone marrow in the absence of an abnormal infiltrate or marrow fibrosis.

“To diagnose AA there must be at least two of the following: haemoglobin concentration and platelet count and neutrophil count,” it indicates, adding that the majority (70 to 80 percent) of cases are idiopathic.

It, however, advises that a careful drug history must be taken and any putative causative drug should be discontinued.

The journal further advises that “blood transfusions should be given to improve quality of life.

“A threshold haemoglobin concent rat ion canno t be recommended for all patients; it should be individualised according to comorbidities; matched blood should be considered to reduce the risk of alloimmunisation; prophylactic platelet transfusions should be given to stable AA patients receiving active treatment”.

It adds that, “In patients judged to have additional risk factors for bleeding, such as fever or sepsis, a higher prophylactic transfusion is recommended. Patients with chronic bleeding require individual management according to the severity of their symptoms and signs. Again, it indicates, all patients undergoing treatment with immunosuppressive therapy— ATG or Alemtuzumab— should receive irradiated blood products.

Anyway, while Kainga’s present reality is dark with a sense of gloom, his lips-of-hope cannot be shut.

“Somehow, somewhere, there must be a way out of this,” he says, shutting his black leather bag and, with that gesture, shutting hopelessness out of his life.

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