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I was bitten, and I could not protect my children

28 Jan 2019
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Transmitted by the bite of a sandfly, cutaneous leishmaniasis is characterised by disfiguring and painful skin lesions. Here is how MSF is fighting against the neglected tropical disease that is now endemic in Pakistan.

In the waiting room of the treatment center of Peshawar sits Taj Bibi, whose entire family contracted cutaneous leishmaniasis after being bitten by sandflies, leaving them with painful skin lesions.

“My husband, my four sons and my older daughter were stung while working at a brick factory,”​
says Taj Bibi.

“I was bitten by the sandfly at home, just like my youngest daughter, Zena. The environment we live in is dirty and there is no sanitation. Many of our neighbours and their children have been infected too.”


In May, MSF opened its fourth treatment center for cutaneous leishmaniais in Pakistan.


Already, the center has admitted more than 800 patients and is operating at full capacity, as are MSF’s three other treatment centres: two in Quetta and one in Kuchlak.


MSF is currently the biggest provider of treatment for the disease in Balochistan province, in the south of Pakistan, while in Khyber Pakhtunkhwa province, in the north, MSF’s Peshawar clinic is the only major centre providing free diagnosis and treatment for cutaneous leishmaniasis in the whole region.

The disease mainly affects people from rural areas, in places where living conditions are poor and clean water and sanitation almost non-existent. As a result, it is not generally seen as a public health priority.

Major challenges to controlling the disease in Pakistan are that there is a general lack of awareness about the disease, too few healthcare workers trained to deal with it, and no data collected at national level on its prevalence.

Added to this, the drugs to treat it are not widely available. The risk of shortage of the drug, that has to be imported, is a constant threat not only to the proper functioning of the treatment centers, such as MSF’s, but also to the health of people living with the disease.

FORCED TO TURN TO BLACK MARKET

When Taj Bibi was first diagnosed by a local doctor, she was told that no treatment existed in Pakistan. Taj Bibi and her family – like so many of the patients who eventually arrive at MSF’s treatment centres – initially turned to the black market as no drugs were available in the public health facilities in the areas where MSF intervenes. The drugs found on the black market are generally of poor quality or out of date, making them ineffective. This only adds to the suffering of people like Taj Bibi and her family, and increases their feelings of neglect.

A serious consequence of this little-known disease is the psychological suffering that it creates. Its victims often feel excluded from their community because of the unsightly lesions it causes, and are left feeling rejected and ashamed.

The only drug currently available to treat cutaneous leishmaniasis is meglumine antimoniate, which must be injected either into the muscles or directly into the lesions for twenty to thirty-five days, depending on the severity of the infection.

The influx of patients to the MSF treatment centers demonstrates that cutaneous leishmaniasis services are needed across the affected areas. The need for care is massive, as this diseases affects hundreds of thousands of people and most of them cannot afford a treatment.

5 THINGS TO KNOW

MSF expert on tropical diseases Suzette Kämink explains why this neglected disease is so difficult to diagnose and treat.

  • Invisible to the naked eye: Sandflies – which spread cutaneous leishmaniasis - are invisible to the naked eye and small enough to crawl through the holes of a mosquito net.
  • Starts with a pimple: Cutaneous leishmaniasis generally starts with a pimple or nodule that grows slowly into an ulcer.
  • Immune system fightback? The human immune system may eventually destroy the parasite itself, but often it leaves a big lesion.
  • First-line treatment: Across Pakistan, there is insufficient availability of meglumine antimoniate - the first-line treatment for cutaneous leishmaniasis.
  • Cancer and contagion stigmas: People often assume cutaneous leishmaniasis is a sort of cancer, a deadly disease or a contagious infection passed on through touch.

TESTIMONIES

ABDUL WAHAB, KUCHLAK

“I thought I had developed cancer and that this was going to be the end of my life. People told me not to wash my face or touch anything. I was so disturbed I did not know who to believe or listen to. They told me the treatment would cost me Rs.30,000 and I thought to myself, ‘I can’t even pay Rs.30 at this point. I am a poor man.’ Someone recommended I go to Kuchlak to the MSF facility for CL and receive free treatment. By the third visit, I could see the improvement on my nose. It was such a huge relief.”

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NEMATULLAH AND HAMDULLAH, QUETTA

“Many people told my parents that our bites would heal on their own. No one knew what this really was though. When it started to get worse, they realized these were not ordinary bites. People think I was injured or burnt in the past and that’s what the scar is from. I don’t discuss the details with anyone. When people stare, I tell them that my scar is something God bestowed on me and I have no other explanation for it.”

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ALI SINA, QUETTA
“I discovered this bite six months ago. Maybe one or two children in my class tease me about my scar but the majority of people in my community know that this is a bite that will go away within a year.”

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NABEELA, PESHAWAR


“The other schoolchildren were making fun of her because of her lesions and she became isolated, so we decided to take her out. She will go back to school for an exam she has and then when her treatment is completed,” Nabeela’s father explained.

“We went to see different doctors; we tried so many things over many months without results: creams, unguents, injections… And one day a doctor from Peshawar came to our village and recommended that we bring her to MSF treatment centre.”

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MSF's response:

  • MSF's medical response in Pakistan is providing patients with specialist treatment and ensuring a steady supply of safe and effective medication.
  • MSF also offers mental health support and carries out health promotion activities around how to prevent and treat the disease.
  • MSF has cutaneous leishmaniasis programmes in Quetta and Kuchlak in Balochistan province, and Peshawar in Khyber Pakhtunkhwa province.
  • In 2017, MSF treated close to 4,000 patients for the disease; in 2018, this figure is expected to exceed 5,000.

(Photo credits: Laurie Bonnaud/MSF, Nasir Ghafoor/MSF, Khaula Jamil/MSF)