Marking International Chagas Day and creating some noise about a silent disease

It’s a strange old world. In some quarters, there are concerns that many people are getting too much medicine – for example, see this report at The Atlantic, titled The Preposterous Epidemic of Pre-Diseases.

It is about the push for treating “preconditions”, the subject of a talk given recently by Dr Ivan Oransky, the executive editor of Reuters Health, at a recent TEDMED conference in Washington DC on technology and medicine.

Meanwhile, in other parts of the world, many people miss out on potentially life-saving treatments. One such example is Chagas disease, which affects millions of people in the Latin American region. The CDC has declared it one of a group of neglected parasitic infections.

According to Médecins Sans Frontières (MSF), it is transmitted by blood sucking insects that live in cracks in the walls and roofs of mud and straw housing, common in rural areas and poor urban slums in Latin America.

People can be infected but show no chronic symptoms for years. Debilitating and sometimes life threatening chronic symptoms develop in approximately 30 per cent of people infected. Chagas can cause irreversible damage to the heart, oesophagus and colon, shortening life expectancy by an average of ten years.

In an article commemorating International Chagas Day (which was Saturday, April 14,) Dr Unni Karunakara, international president of MSF, outlines some of the achievements – and remaining challenges – in tackling this “silent disease”.

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Much more needs to be done to put this silent, neglected disease on the agenda

Dr Unni Karunakara writes:

The fight against Chagas – a tropical parasitic disease that affects between eight and ten million people in Latin America – has seen major advances in recent years.

This is good news for sufferers of the neglected disease, and also for Médecins Sans Frontières, as we have been working on improving access to existing medicines for Chagas, and have been advocating for more research and development into its treatment.

The latest advance was announced last month, when Argentina became the second producer of benznidazole, the main drug used to treat Chagas, thanks to a joint effort between the Argentinian Ministry of Health and the NGO Fundación Mundo Sano. This was the latest in a series of breakthroughs in the battle against the disease.

Demand for treatment has increased significantly in recent years, as more adults are now being treated, in addition to children. New medical evidence has also shown the benefits of benznidazole for patients at the chronic stage of the disease. Meanwhile, the Pan American Health Organization (PAHO) has issued two resolutions on Chagas disease, with a focus on screening and treatment.

Last year we received encouraging news when a new paediatric dosage of benznidazole was registered in Brazil, a development supported by the Drugs for Neglected Diseases Initiative. Before this, there was no specific formulation adapted for children, even though the recovery rate from Chagas treatment is higher in minors.

Other developments are underway: Médecins Sans Frontières and the World Health Organization are involved in a joint study to simplify diagnosis with rapid tests. If the results are positive, it will be possible to scale up screening among pregnant women and in remote communities affected by Chagas.

These are all significant steps. However, as we mark International Chagas Day on 14 April, we need to remember that there is still a long road ahead in the struggle to put this silent and neglected disease on the agenda.

More policies, more funding and more investigation are all needed if we are to prioritise the health of Chagas sufferers.

Chagas programmes across Latin America currently depend on a single laboratory to produce benznidazole – the Brazilian public laboratory LAFEPE (Laboratorio Farmaceutico do Estado de Pernambuco) – as Argentina has not yet started producing the drug for export.

Having only one producer causes supply risks, as we saw last October, when a shortage of the drug and the threat of stock ruptures forced Médecins Sans Frontières to suspend the opening of new Chagas projects in Bolivia and to reduce its diagnosis of new patients in Paraguay over a period of time. To this day, supply is still not guaranteed in several countries.

Although we welcome the announcement that benznidazole will also be produced in Argentina, as a step toward overcoming the vulnerability caused by having a single manufacturer, this news should not overshadow the fact that there is a huge need for research to find new drugs.

Benznidazole and nifurtimox, the other drug used to treat Chagas, were developed more than 40 years ago and, while manageable under medical supervision, they can also have side effects.

There is also a major need for a ‘test of cure’, to confirm the parasite has left the patient’s body after treatment. Without such a test, it can be difficult to convince people to be treated, while for patients it can be hard to live without knowing if the treatment was successful. A test of cure would also allow the effectiveness of new medications to be evaluated.

At present, there are few ongoing initiatives designed to find a test that could confirm a cure sooner, while the long-term investment and commitment needed to achieve this are absent.

The lack of effort to fight Chagas threatens the lives of millions of people around the world who are living with this disease without even knowing it. The symptoms can take years to develop, but once the disease has become chronic, it can cause serious heart and digestive problems that may be fatal. Chagas causes about 12,500 deaths every year.

Pamela, a patient at a Médecins Sans Frontières clinic in Cochabamba, Bolivia, was unaware that she had the disease, and transmitted the parasite to her two children. “When the health centre confirmed that the three of us were positive [for Chagas], I broke down and cried because my children – the only family I have – were sick, and it was my fault,” she says. Pamela’s story is repeated in rural areas all over the continent.

Luckily, she and her family were able to get free treatment at a Médecins Sans Frontières clinic. But thousands have no opportunity to be diagnosed and treated for the disease.

In 2009, on the centenary of Chagas’ discovery, Médecins Sans Frontières launched its ‘Breaking the silence’ campaign to raise awareness about the disease and to call on governments to prioritise access to diagnosis and treatment for those affected.

While advances have been made since then, today we are faced with the need to repeat this appeal. Until Chagas has stopped being the ‘silent disease’, we must continue to make a noise.

• Dr Unni Karunakara is international president of the medical humanitarian organisation Médecins Sans Frontières.