Survivors and activists demand increased action against TB

Representatives of international health organisations, Indian politicians and celebrities endorsed commitments to ramp up the fight against tuberculosis (TB) — the ancient disease that currently kills more people than HIV and malaria combined — at the 50^th Union World Conference on Lung Health, that took place in India last week.

But activists and survivors criticised the global lack of investment and action to help people on the ground access better quality services and safer drugs.

“You say you know the science of our diseases. We say we know the pain and stigma of living with them. You say that diagnostics are expensive and hard to provide. We say that late diagnosis destroys our health and lives. You say that developing new drugs is expensive,” said Indian journalist and TB survivor Nandita Venkatesan.

“We say it is more expensive to lose our hearing, lose our sight, lose our livelihoods. You say it is difficult to increase funding for [research and development]. We say that without more government investment and support, our brothers and sisters will continue to die.”

The World Health Organisation’s (WHO) assistant director-general, Dr Ren Minghui, noted the impact of delaying the response against the disease.

“Each day, nearly 4,000 people lose their lives to TB. Over 15 people have left the world due to TB as soon as I complete my speech here,” he said.

According to the recently-released WHO Global TB Report, there has been some progress in the fight against TB. In 2018, seven million people were reached by quality TB care, up from 6.4 million in 2017. TB-related deaths dropped from 1.6 million in 2017 to 1.5 million in 2018.

“However, much remains to be done. Around three million people with TB were reported to be not accessing quality care in 2018. This is even more acute for people with drug-resistant TB (DR-TB), with only one in three accessing treatment. Funding gaps of close to $5-billion impeded progress in the overall TB response and for research,” said Minghui.

In addition to the funding gap, newer and safer drugs for DR-TB remain too expensive for the majority of the world’s patients to access.

Doctors Without Borders (MSF) activists disrupted the opening ceremony, protesting against the high cost of these newer drugs, that eliminate serious side-effects such as deafness.

“For the first time in over half a century, there are three new DR-TB drugs – bedaquiline, delamanid and, most recently pretomanid — that can offer people a better chance to be cured, but barriers to access including high prices are preventing their scale-up by countries. Only 20% of people with DR-TB who need these newer drugs have been able to access them,” MSF noted in a press release.

The majority of the world’s patients receiving the blockbuster anti-TB drug bedaquiline are in South Africa, which is the first and only country using a bedaquiline-based regimen for the first-line treatment of DR-TB.

This is significant because it removes the injectable agents traditionally used to treat DR-TB that cause severe and debilitating side-effects such as hearing loss.

TB survivor Venkatesan is one of the many DR-TB survivors who lost their hearing permanently after enduring more than five years of toxic treatment with these older drugs to ensure she was cured. In the past five months, she has received cochlear implants and is able to hear once again, but many other patients around the world will never get the chance to hear again.

South Africa’s Dr Francesca Conradie spoke about the revolutionary new regimen for drug-resistant TB that cuts the treatment time from over two years to just six months and from 23 pills a day to 23 a week. In the study, 90% of patients were cured using this regimen, compared to cure rates of less than 50% with older regimens. The regimen, called Nix-TB, uses bedaquiline, linezolid and pretomanid. Pretomanid was registered for use in DR-TB patients by the US Federal Drug Authority in August and Conradie said the drug has just been submitted to South Africa’s medical regulator.

“It’s important that these drugs get to patients as quickly as possible. We need to get this safe and effective treatment registered as broadly as possible so patients can benefit,” said Conradie.

However, there has been no announcement as to when these new drugs and regimens will reach people with TB, both in South Africa and elsewhere.

Newly-appointed Union celebrity ambassador actress Claire Forlani also highlighted the gap in responding to childhood TB during the conference’s opening ceremony.

“More than one million children under the age of 15 became sick with TB in 2018. Of those nearly one in four died. These precious lives were lost for no reason. TB is completely curable and children with TB rarely die when they receive standard treatment. So why, over the past four years, did we let one million children die completely needlessly?”

Venkatesan reiterated the need for people on the ground to be heard, respected, included and to actually benefit from the scientific discoveries announced at this conference.

She said: “We are not cases, we are not burdens, and we are more than just patients. We are people. We have a right to life. We have a right to dignity. We have a right to information, and education, and work. We have a right to health and to benefit from scientific progress. We have a right to know our rights and exercise them freely, especially in our healthcare.” DM