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Interview with General Coordinator Henry Rodriguez on stockouts of critical Chagas treatment

“We are wasting the opportunity to put people who need it on Chagas treatment.”

Chagas projects in Bolivia and Paraguay have seen their capacity to treat patients limited due to a shortage in the first-line drug benznidazol. Only one laboratory in Brazil makes the drug, and manufacturing has been delayed.

Henry Rodríguez, general coordinator for MSF in Bolivia and Paraguay, describes the situation in MSF projects in those countries.

What is the impact on projects of the delay in benznidazol?

No new treatment can be started until we have more drugs because we can’t risk having to interrupt patients’ treatment. If treatment is stopped for longer than a week you have to start all over again. We have also had to screen less because we don’t want to diagnose if we can’t treat – if we can’t ensure continuity of treatment we will also lose patients. Our stock ran out at the start of the year and since then we’ve been using drugs lent to us by the Ministry of Health. We are wasting the opportunity to put people who need it on Chagas treatment.

Are there no other treatment options?

Yes, nifurtimox is an option but only as a second-line drug as allowed for by national protocols, so only when benznidazol has been ruled out. Nifurtimox has more adverse effects on the nervous system and there are fewer studies that guarantee its use for Chagas.

What is the current situation with benznidazol in Bolivia and Paraguay?

Benznidazol is not registered in these two countries, which is slowing down distribution. Exporting it from Brazil and importing it into Bolivia and Paraguay are slow and complicated processes. In Bolivia, for instance, as of May we only had enough drugs to treat patients until mid-June, and as of the end of June the order has just left customs with a month delay. In Paraguay, we’ve had to wait almost nine months to receive the pills we need because the drug wasn’t registered.

How many people are waiting for treatment from MSF?

In Paraguay, for example, almost 200 people have been diagnosed as positive and only 36 have started treatment. The rest are on the waiting list because of the lack of drugs. Even when the drug is available, some won’t want to start because they’re afraid of the side effects. This despite our 12 years’ experience showing that these are mild and controllable with a weekly medical check-up. Around 30 per cent will develop chronic complications from the disease. There is no evidence or any indicators to determine if an infected person will develop a symptomatic illness. Chagas is a silent disease and it can take up to 20 years for an infected individual to show symptoms, by which time it is in the chronic stage. This means that people don’t want to deal with side effects because they feel well at the moment. Hence, it is very difficult to convince them – it isn’t a priority for them. In addition, they don’t really believe the treatment is effective because there is no proof that it cures.

So once a person has been treated, it is impossible to know if the treatment has been effective?

That’s right. There is no test of cure, so when the treatment has finished they don’t know whether it has worked or not. It can’t be proven so they still live with the uncertainty. This is one of the difficulties when trying to persuade people of the advantages of treatment. For people younger than 15, the probability of recovery is more than 90 per cent, and for children under five it is almost 100 per cent, so it’s easier to convince these patients and their parents. What we really need to fight for is a test of cure. Studies are currently being carried out to prove the long-term benefits.

Why is it so difficult to produce this drug?

Benznidazol used to be made by Roche but they decided to transfer their technology to the Brazilian laboratory LAFEPE because they didn’t want to make it any more. LAFEPE had to find another laboratory that made the active principle because nobody else in the world makes it. So we are completely dependent on one sole laboratory that makes the active principle and one sole laboratory that makes the drug. What’s more, to get a drug onto the market you have to comply with a raft of legal measures that ensure its quality, security and effectiveness, all of which takes a long time.

Other factors that also worry us include the price of the end product, because we know the cost of the active principle has gone up. The raw material currently available is not enough to make the millions of pills that are needed for the rest of the year. Orders aren’t handled well enough, which means that some countries have more than they need and others don’t have any.

How are a country’s needs calculated?

Drugs are made according to demand, but it is difficult to calculate demand for various reasons. There are no reliable studies on the prevalence of Chagas, and national programmes need to know how many people who are diagnosed as positive want to be treated, and whether health centres and hospitals will have the capacity to treat them. There is a calculation tool for countries to make accurate orders but these factors make it more difficult, and if they aren’t right, we don’t get the drugs we need.

In addition to diagnosis and treatment, does MSF carry out prevention?

MSF also carries out prevention work. Vector control is vital so patients aren’t reinfected once they’ve started treatment. For the last year we’ve been showing patients how to carry out their own vector control at home. This empowers them and increases awareness in the community.

There are few available human resources through the national programme. This year, for instance, all vector control technicians had to be devoted to the Dengue emergency in Bolivia and Paraguay, which left nothing for Chagas.

MSF in Bolivia

Bolivia, where MSF has been working since 2002, is the country most affected by Chagas. The disease is endemic in 60 per cent of the country. Most people here live in poverty, far away from cities in rural areas, which makes access to treatment in health centres difficult both geographically and economically.

Furthermore, local willingness to be diagnosed and treated is very limited and fairly uncommon in patients over the age of 15. MSF is currently treating children and adults while actively promoting treatment and seeking better access throughout the country.

MSF runs free urban and rural Chagas programmes in conjunction with the Bolivian Ministry of Health in primary health centres in Cochabamba.

In urban Cochabamba, MSF worked in 24 health centres. The project was handed over and closed in April 2011.

MSF in Paraguay

MSF started work in Paraguay in 2010, with a free Chagas programme in conjunction with the Ministry of Health in the department of Boquerón, Chaco. Some three per cent of the population, largely indigenous peoples, live in the Paraguayan part of this semi-desert, sprawling region. Access to healthcare is low and insufficient, in addition to being geographically difficult.

Before MSF began treating Chagas in November 2010 in Paraguay, the Ministry of Health was only treating children under the age of five in the wealthiereast of the country.