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Impact of the USAID Stop-Work order on a TB Community Organization
The USAID Stop-Work Order has wreaked havoc on TB programs around the world. People affected by TB are most heavily impacted. Blessina Kumar, CEO of the Global Coalition of Tuberculosis Advocates (GCTA) and contributor to SSHIFTB, shares her perspective on the United States government’s decisions on global aid with Amrita Daftary.
Amrita: How do you feel about the U.S. government’s Stop-Work order?
Blessina: I want to start off by quoting a colleague who said to me, “This is worse than COVID because COVID, you either got better or you died. Here, we are living but struggling.” I thought that was really powerful. It came from so much pain and feeling helpless. This is something that you would think would never happen, because you do believe that the world has some good in it. It was a reminder that all the good that we do for people on the ground is linked, and dependent on countries and entities who have the power to support. This came as a huge shock. USAID was the big donor for TB. If there is no funding, very few [community advocates] are going to be left. That’ll be the end of TB advocacy.
Amrita: What impact has the Stop-Work order had on GCTA, and how are you managing?
Blessina: For us it was really shocking, because almost 80% of our funding came from STBP (the Stop TB Partnership) who receive their funds from USAID. It wasn’t huge but we all worked with it, for 50% of pay, sometimes even 30% of pay, but giving a 100% of our time because that’s just the way it is. On the 31 st of January, we got a letter saying, “Stop work”. We all had worked the whole of January and would have gotten our salaries on the 1st or 2nd of February, but it couldn’t be done now. We tried to negotiate, but this is the reality. I now have a team that is extremely distressed. But it’s not just us. There are many like us. I think if we had two, three projects, then you somehow can pull things together. But how long can you expect people to continue when the rents need to be paid, or you’re going to be thrown out of your house, or your children’s school fees have to be paid. I mean, how much do we expect people to beg and borrow. That, for me, is an unacceptable position to be in. So I’ve said to my team, if you get something else, please go ahead, do it.
There is a huge group of people that work to ensure access to drugs and diagnostics from point A to point B. Point A being where it’s all available, and point B being the people affected. The minute a country has put in an order or the minute the drugs arrive, the story doesn’t end. It can take years for that order or those drugs to reach the persons who need it, and people are struggling to get access. People are remembering the donors, because they’ve been shut down, and they’re rightly remembering the people affected. But there is an intermediate body that people are forgetting about–people like us who are in between, whose sole focus is on ensuring the connection of these two points.
Many deliverables are hanging so I don’t know how we’re going to manage them. All our colleagues are in the same position. If you’ve got Global Fund grants, I think it’s okay for now. I’m hoping that the Global Fund will also make some small grants available for people who are in similar situations and can do some amount of work. But we’re all trying to do different things now to get some funds so people can be paid. Things that we would have previously done free of cost, I’ve started charging for because I need funds to pay my team. Some TB research and policy groups, they want a community perspective.
Amrita: What responses have you seen in the advocacy community, and what is your take?
Blessina: A lot of Africa is dependent on PEPFAR for their HIV medications, and there has been a huge outcry. People in the HIV world have really come together, much of it led by activists advocating in Washington, DC, for drugs. Some waivers have come through, I think, for some HIV life-saving medications, which means they can still function. Unfortunately, I don’t see that happening in TB. There have been a few attempts, of course. We all wrote open letters. But it’s been really very small. There’s no one to take that lead for TB, which is a bit of a shame. This is another time when the lack of activism in TB really comes to light. And the activism has to be led by people affected, not by organizations based in Geneva, not the UN. It has to be people, mostly from the global south. We had a group that came together for the United Nations High Level Meeting. The community group that coordinated the UNHLM advocacy has come together and started the TB Community Hub with regular calls. We’ve done a survey and hopefully will be able to use the results for an impactful push and advocacy. We are dependent on colleagues in the U.S. to advocate at that level, and I’m not sure whether anyone is going to be able to take that on.
I really feel like it’s a wake up call for the TB community. I’ve been saying for 20 years, “We all have our own agendas, and that’s fine, because we all work in different spaces. But there are a few, at least 3 or 4 non-negotiables that we need to 100% agree on”. I think we need to come together and it has to be just advocates, the community otherwise the flavor of the conversation changes. There is a power dynamic when it is beyond the affected communities and civil society groups. Community advocates have committed to working with people with TB on the ground, so if TB survivors and people affected by TB agree that we are going to do something about it, it’s going to help.
We also need to relook and rethink the TB scenario. I’m on the HIV group too and some of the TB groups are also on it. The kind of activism that you see there is really amazing. I know people don’t like to hear that, because I tried to say that on one of the calls, and I know people got offended. But it isn’t a time to take offense. It’s time to see how we can protect TB. We have such amazing people, but we are fragmented. We need a united voice, and somewhere there’s a bit of complacency.
Amrita: How has the Government of India responded?
Blessina: I don’t think anyone has approached them, but I don’t know if they’re going to allow USAID funding anymore. (Either way) it can’t be one voice. It has to be a group of people, maybe even the grantees. Even as I’m talking to you, I’m thinking maybe the grantees of the (Stop TB Partnership’s) Challenge Facility for Civil Society should come together in India and see what we can do. It would need some resources to meet, strategize and come up with way forward. It’s like what we do as part of the India working group on health advocacy, that includes TB, HIV, and malaria. We came together for the (Global Fund) replenishment, and we’re still continuing. TB many times is the lowest priority, but I think India can do it if we look at the investment of India and really challenge our leaders. It has to start from the ground, with the elected representatives MLA’s MP’s, maybe even get them to ask questions in the Parliament. Because we do have the resources, and there’s so much of CSR (corporate social responsibility) funding as well.
We can work together and learn from each other. The more people come together and stop working in silos, we will have better success. We have the Cross Disease Network which we set up for one and a half years, as part of the IMPAACT4TB grant, a very small grant, but what we managed to do is to bring HIV, Hepatitis C, transgender networks, people who use drugs networks, the sex worker networks, and TB survivors all together and we advocated for TB preventive therapy (TPT) in India. Within 6 months of our targeted advocacy, starting from your elected representatives at the community level, to the Prime Minister we had 3HP rolled out in the country! And it is now fully rolled out, and people with HIV are getting it. I think there are opportunities like this to build on. This was because all of us, not just TB community but everyone, was working together and raising the need for prevention.
Amrita: Do you have any words of hope or inspiration to share?
Blessina: If we do it the right way, two things can come out of it. We will have a very strong TB community that has grappled with some of the issues that are stopping us from raising a voice for the right things. I think that it will be the beginning of a great TB activism. Secondly, I think this is an opportunity for us to look for funding within our countries. We can strategize and have a fundraising strategy that we can then adapt for each of our countries, which means our activists need to understand their own country, their own GDP and health expenditures, who are the major contributors, how can we get funding when something like this happens. One man has changed everything! What is the guarantee that there aren’t going to be any more like this? Yes, we can talk about responsibility, but I think we also need to learn to be self-sustaining and learn to work together.
Blessina Kumar is a public health activist and CEO of the Global Coalition of TB Advocates, a 10 year old community-based organization with over 540 members from 76 countries. GCTA advocates for access to care and support for people affected by TB during their TB journey, and translates technical information such as guidelines issued by the WHO into community-friendly formats. The three-member GCTA Secretariat is based in New Delhi, India. They work with partners around the globe to support the needs of TB-affected communities. Amrita Daftary is an associate professor at the School of Global Health, York University, and founder director of SSHIFTB. The interview was transcribed and edited from a Zoom call.
