Interview of Rhea Lobo, an international award-winning filmmaker with a background in health journalism, a Tuberculosis (TB) survivor and also a Board Member of the Stop TB Partnership. Rhea is a strong TB advocate and co-founder of Bolo Didi (Translation: Say Sister), an informal network of women TB survivors in India that help people affected by TB navigate health systems, promote treatment adherence and offer counseling. Rhea has made several films on health and women empowerment, with a special interest in TB. Her film on Human Rights and TB, Rights and Wrongs… A Tribute to Dean Lewis, received critical acclaim from Dr Tedros Adhanom, Director General of the World Health Organization. Rhea has been part of the UN taskforce that has developed the Global Plan to End TB by 2030. She spends much of her time trying to raise awareness for a new TB vaccine.
1. You have personal experience with TB, and fighting TB, and you’ve dedicated your career to advocating for the eradication of this deadly disease: Why is this fight still relevant today?
TB is a pandemic that the world has completely ignored for decades. The WHO declared TB a global health emergency in 1993, which was 30 years ago. TB continues to be a global health emergency 30 years after, while it took only 3 years for Covid-19 to be no longer considered as such. TB has always been the forgotten pandemic, it’s not something that we speak enough about, this is why more needs to be done to focus our attention on TB as well as eradicating the disease.
TB is a preventable and curable disease and it’s a shame that in 2023 we are still talking about managing the disease when it should have been eradicated by now. There is no justification for 4400 deaths around the world, every single day, from this disease.
2. Since the start of your personal engagement in the fight against TB, what have been the main changes and successes to advance the eradication of TB?
That’s an interesting question. When I was going through TB treatment, there was so much discrimination and stigma attached to it. I did ultimately find the courage to speak about it after fighting societal pressures. I think we have really progressed a lot and we must show appreciation where it is due. One of the things I think we have progressed considerably in is diagnostics, though we still have a long way to go. When I was trying to get diagnosed with TB, I was subject to smear microscopy tests which are unreliable in detecting TB correctly – this test really was one of those ‘hit or miss’ tests. Two tests were done, and it just shows how unreliable the test results were at the time. In fact, one test result was negative for TB and the other test result came back positive for TB. Now we have GeneXpert tests, molecular diagnostics, and amazing technologies.
I am happy that we are at least talking about vaccines now, more than we ever have. I’ve been a huge vaccine advocate for so many years. I really can’t believe we are still using a vaccine which is more than a hundred years old, it’s just unbelievable… there’s no excuse for that, right? For Covid-19, we’re talking about getting new vaccines within a hundred days, and here we have an ancient TB vaccine which we have been using for over a hundred years, which is ineffective in preventing TB. It was great to see that at the Multi-Stakeholder Meeting on TB which happened at the UN last month (May 2023), there was a lot of talk on vaccines, and this was nice to hear. Now we need stakeholders to fully fund the vaccine pipeline. The Global Plan to End TB 2023-30 now estimates that an annual investment of $1.25 billion in TB vaccine R&D is needed to achieve the End TB by 2030 goals. I want to see many vaccines in the pipeline for different kinds of TB, for different groups of people including vulnerable populations such as children and pregnant women.
I also feel the community voice has become much stronger. TB has been a silent killer, and it’s a pity that for so many years the community was silent, because of discrimination and stigma. Now we have a strong community behind us, people are demanding change from their governments, and this is another thing we need to appreciate.
3. How can the development of new tools help us better prevent, identify and treat TB cases? What upcoming or recently developed tools do you consider to be game changers in the fight against TB?
I think we have some interesting tools, I think more are being developed. Something like URINE-LAM sounds promising, where you can use urine samples to detect TB.
One of the big challenges with TB is diagnosis, and it is crucial we are able to diagnose people quickly in order to treat people quickly. So many people are misdiagnosed for weeks, months and years. Some just take cough medicines for years, thinking they have a simple cough. A lot of people are mistakenly diagnosed with pneumonia or even malaria before the doctors actually get to TB. Molecular diagnostics help us move forward in the right direction. What I really want to see is effective point of care diagnostics for TB – something I can buy in a pharmacy and that can identify infection. We got that so quickly with Covid-19 – again, why are we moving so slowly with TB?
We also now have a one-month WHO-approved treatment regimen which is available, we can treat drug sensitive TB in 4 months and treat drug resistant TB in 6 months. This is a positive step. We now need these shorter regimens to be adopted and scaled up right away by national governments. What’s the point of having new tools and regimens if people can’t access them?
Also, the mRNA vaccine and the use of this technology look promising to develop TB vaccines. While we have a long way to go, I hope to see many more vaccine candidates in the pipeline.
4. Drug-resistant TB accounts for one third of all deaths from antimicrobial resistance. What new tools would you like to see being developed to help prevent this?
So, firstly I think TB needs to be part of antimicrobial resistance (AMR) conversations. TB is currently not featured in those AMR conversations both at the European and global levels, while we dedicated resources and progress made fall very far behind.
In addition, most countries are still doing the one and a half year to two-year treatment regimen. We need to scale up existing tools and existing shorter treatment regimens which are approved, and we need to do it quickly so that people don’t take two years to get cured from drug resistant TB, they can get cured within 6 months and hopefully with continuous R&D support, this timeframe to get cured gets even shorter.
5. According to you, what would be a successful outcome of the 2023 UNHLM on TB regarding specific TB R&D matters?
There are many important points missing in the zero draft declaration for TB. We are not talking enough about access and affordability of new tools – these are crucial to reap the benefits of R&D as early as possible. There is not enough human rights language in the declaration at all, especially the right to science, and the right to health, which are fundamental human rights.
Another successful outcome would be that the new treatment regimens get adopted across the world – there should be specific language about this in the declaration so that member states actually adopt these shorter treatment regimens.
The WHO has also said that the lack of R&D is a primary driver of the TB pandemic – they’ve mentioned this in a document called Global investments in TB research: past present and future. A big priority is then to finance TB R&D across the board – whether it is vaccines, diagnostics or drugs. At the United National High Level Meeting (UNHLM) on TB in 2018, governments committed to invest $2 billion annually in TB R&D over five-years, including $550 million for TB vaccines. By 2021, only 30% of the pledged amount had been invested, with TB vaccine R&D receiving only 15% of its target. We are falling very short of our demands. Currently, The Global Plan to End TB 2023- 2030 lists out specific financing demands – we need to ensure all countries pledge and play their part in financing TB R&D and the response as a whole.
We also desperately need more multisectoral engagement and action, and we urgently must prioritise removing barriers to ensure affordable and equitable access to life-saving technologies.
If we have strong political will at the upcoming UNHLM on TB in September 2023, I genuinely believe we will be closer to our goal of ending TB by 2030. It is time governments around the world walk the talk.