Health
The 99DOTS project was withdrawn from hospitals after only two years, in a move that forced patients to revert to the previous method, which was largely considered inconvenient and unreliable.
Huizhong Wu

When patients skip medication, the results can be dire. For many years, this was the quandary faced by India’s programme to combat tuberculosis (TB) – one of the top 10 causes of death worldwide, according to the World Health Organisation (WHO). In India, 4,23,000 TB patients died in 2016 – one-third of the world’s 1.4 million death toll.

In 2016, Indian public health experts thought they had hit on an innovative solution. Called 99DOTS, it was a programme that worked with the already existing Direct Observational Therapy, or DOTS method.

DOTS was launched in 1993 in order to tackle the serious issue of each patient’s adherence to TB medication. With the DOTS project, patients had to visit health centres every day for medicine so the doctor could be sure that the patients weren’t skipping their medication. It was an exhausting process for everyone, with the patients complaining about the frequent travelling and the doctors finding it difficult to track patients who had missed their dosage.

The 99DOTS project was a Bengaluru-based research initiative by Microsoft Research. The social enterprise called Everwell Health Solutions aimed to offer a low-cost innovation to support adherence as part of the official renewed DOTS strategy for tuberculosis patients in India. It incorporated the use of mobile phones, a practice that is not a new one. Places such as Kenya, Cambodia and California have recorded different ways to incorporate mobile phones in the DOTS strategy with considerable success.

“Most technology-based DOTS strategies like this (incorporating mobile phones) are expensive, with costs going up to 100 dollars per patient, in some cases,” said Andrew Cross, co-founder of the 99DOTS project. “This becomes very challenging in a place like India where you have 2.4 million patients per year,” he added.

“The concept is that we use inexpensive envelopes that are wrapped around the medication pack. When patients take their pills for the day, there is a toll-free number on the back to which the patients are instructed to give a free call. The healthcare provider is alerted if a patient doesn’t give the free call and can call the patient to remind them or counsel them. It’s entirely free of cost for the patient,” explained Cross.

Keeping its success in mind, the 99DOTS project seemed promising for India. It tackled many issues all at once by bringing in technology applications, while also making it almost free of cost for the Indian patient. After a successful pilot in Bengaluru’s St John’s Medical College, it launched in several other hospitals in the city, and in some other Indian states as well.

However, according to patients and hospital staff, the 99DOTS project was withdrawn from hospitals after only two years, a move that forced patients to revert to the previous DOT method, which was largely considered inconvenient and unreliable.

To understand what happened to a seemingly successful project like 99DOTS – and to try and hammer out a workable solution for the future – it is necessary to make sense of the past, and the kind of challenges this project faced.

Initial stages of 99DOTS

The 99DOTS project was launched as a pilot in 2013 at St John’s Medical College, with roughly 20 patients who were both HIV positive and had TB.

“The patients responded quite well,” said Dr Rashmi Rodriguez, the doctor at St John’s who oversaw the pilot. “We were looking at being supportive without them having to come to the hospital every day – or every alternate day – and we gave them the option of doing this at home.”

After the success of the pilot, 99DOTS was taken to other hospitals in Bengaluru. It was implemented in ART (Antiretroviral) centres in the hospitals for HIV-TB patients.

“It was easier for the patients,” noted Manjunath, a senior health supervisor at the Bowring & Lady Curzon Hospitals, one of the first hospitals in Bengaluru where 99DOTS was launched after the pilot. “The staff nurses told the patients what to do and how to call, and the people at the health centre checked on them when there was no missed call. It was successful. We had around 400 patients per year,” he said.

TB care in India has gone through several drastic changes, and there are a few people who have witnessed them all. When treatment organiser Prakash Sonawane spoke about the TB programme in India, he traced how the changes in the system affected patients through the years.

At a December 2018 lecture about TB nursing care around the world, he said: “When the National Tuberculosis Programme was there, I remember Rahul to whom I gave daily medicines for each month. There would "be no contact until the next refill, and I would not know if he was being regular or not until the next time I met him.”

“After that, the government introduced DOTS in 1993, the patients had to come in every alternate day and I administered medicine at the clinic. Suresh, one of the patients, used to complain about his loss of wages and the travel costs to visit the health centre.”

“There was then the introduction of 99DOTS in 2016, which let patients give missed calls that update the hospital whether they have taken the medicine or not. One day, a patient, Seetha, forgot to call, and I was sent an SMS and I could immediately call her to find out if she had taken the medication or not.”

Challenges amidst success

As the 99DOTS project expanded to states across India, there were several success stories. However, at the same time people began noticing problems with the project as well.

A June 2018 study in Karnataka’s Davanagere district showed that the reason for non-adherence by several patients was the lack of awareness in making a phone call after taking the medication, or not knowing how to use a mobile phone. There were also reasons like forgetting to make the call, and network problems and mobile issues.

Another study published in February 2018 conducted research across several ART centres in Karnataka. The patients reported not having constant access to mobile phones. The hospital staff also mentioned a lack of training.

Two years before 99DOTS, the Karnataka Health Promotion Trust (KHPT) in 2014 had started a programme, a part of a larger TB project called Mitra: A TB Careline (now referred to as just the TB Careline), a phone-based care and support system that has people talking to patients and counselling them free of charge.

“We focus on the human component more than the technology. We have trained counsellors who talk to the patients one on one,” said Karthikeyan, a member of KHPT.

Despite these issues, however, 99DOTS was largely considered to be a successful project. A study conducted in a government medical college in Rajkot, Gujarat, concluded that the treatment adherence rate was at 96% in completed treatment patients. It went on to point out that according to the WHO, even in developed countries less than half of the chronic disease patients take medication as needed. The study also noted that “99DOTS enables differentiated care: instead of mandating that all patients receive frequent counselling…while limited programme resources are focused on cases that need the most attention.”

Another study in Andhra Pradesh spoke to beneficiaries, with one of them saying, “I have to give missed call daily after taking tablet, I do sometimes forget to take daily medicine, (but) as I have to give a call, it reminds me that I have to take tablet.”

Paused after 2 years

Considering this, it came as a shock to patients and hospital staff when the 99DOTS method was abruptly stopped.

“The public most likely think that we halted the project, but that isn’t the case,” said Cross. “The funding to make envelopes (that are wrapped around the medication packs) was a time-limited deployment, so after a while we exhausted the funds. We’ve open-sourced the technology and envelope design right now to allow state governments to procure the envelopes. Some states have already taken steps to procure the 99DOTS envelopes through the tendering process, but for others it's still an ongoing process. It's most likely a matter of prioritising resources for citizens, and working within budgets and timelines, so we expect that the project will be funded eventually depending on available resources,” he added.

However, withdrawal of the project had hit patients quite hard. At the Bowring & Lady Curzon Hospitals, doctors have stopped checking up on patients entirely, and interaction between doctor and patient has come to a standstill. The patients line up and have their forms checked, are given the medication, and after hastily transferring them into other containers, quickly leave the premises. They hardly speak to the nurses or the doctors.

“We come every month and get the medicine and go. Why will the doctors care if we take the medicine or not? It is up to us to take care of our body,” said a 30-year-old female patient who wished to remain anonymous. She had not heard of 99DOTS or DOTS, and said that doctors motivating patients to take their medicine was unheard of.

“There have been times when I have skipped taking my medication for two weeks, even one whole month. But what is to be done? The doctor just scolds me and then tells me to take the medication regularly,” added another middle-aged patient who also has not heard of 99DOTS.

“Having a disease like this is shameful. I come to the ART centre, making sure that no one sees me, get my medication and leave quickly. I do not want to talk to the doctors. What is there to say?” asked Jacquelyn, another patient.

The project has been stopped in other hospitals across Bengaluru as well. Dr Uma, the Medical Officer at Victoria Hospital, said, “99DOTS was closed six months ago here. I don’t know why it was stopped. Personally, I thought it was better (with 99DOTS) because it had a good follow-up system. Now there’s nothing, we just dispense tablets every 28 days to the patients.”

The director of the National Tuberculosis Institute, Bengaluru, did not respond to multiple inquiries about the state of the project.

It is clear that while the 99DOTS project has potential in India, there are problems like funding and implementation which in turn impact the patients severely. Long term planning for both sustainability and finances are necessary to help out both the doctors and patients involved on ground.

“It’s a good project,” observed Dr Uma. “I have seen several patients benefiting from it; life becomes so much easier for them. It will be useful if it comes back soon,” she said.

Update: Currently, 99DOTS is being tested by the Central TB Division as part of a pilot project that began in May 2019, involving four technologies to help TB patients adhere to treatment.