José Luis Castro, Executive Director of The Union welcomed delegates to the opening plenary of TB2016 - the pre-conference to the International AIDS Conference, AIDS2016 - calling for the TB and HIV communities to come together to beat both TB and HIV. The trascript of his speech is below.
It was right here, in this province of KwaZulu-Natal, where extensively drug resistant TB was first described. 53 people were diagnosed with XDR-TB in that first outbreak in Tugela Ferry a decade ago. Only one person survived. Among those who died, 44 people had received an HIV test. All 44 had tested positive.
Almost 12 years ago to the day, Nelson Mandela took the stage at AIDS2004 and proclaimed:
“We cannot win the battle against AIDS if we do not also fight TB. TB is too often a death sentence for people with AIDS.”
Here we are, 12 years later. TB is still the main cause of hospitalisation for people living with HIV. TB is still the main cause of death among people living with HIV. Nearly half the time someone living with HIV dies from TB, TB is undetected at the time of death. I want to say that again. Nearly half the time that TB takes the life of someone living with HIV, that person dies without anyone knowing that they had TB.
I don’t want to stand here and issue another call to action. We have made many calls to action. Pam Das and Richard Horton wrote about TB in The Lancet recently:
“One will be struck by how little the situation has changed over the years, and how the same calls to action get repeated from one year to the next. For decades, a piecemeal approach with a narrow treatment focus and a cost imperative has prevailed. The result? A global epidemic of disease.”
I don’t want to make another call to action. I want to make a call for change.
If you came to the Union World Conference on Lung Health last December in Cape Town, you saw the theme of the conference: A New Agenda. It was on big, colourful signs in the city and all throughout the conference venue.
A New Agenda.
It was our way of saying that we need change. We were creating space to welcome that change. The Union was not the first to see that we need change.
In Vienna, at AIDS2010, the ACTION project led an advocacy stunt called MOSOTOS. MOSOTOS stood for More Of the Same Old Talk, Opinions, and Speeches. Thousands of people participated, demanding fresh thinking and new solutions.
In 2012, over 500 TB activists, experts and policymakers signed the Zero TB Declaration. The declaration called for a “new global attitude” in the fight against TB.
In 2014, WHO released the End TB Strategy, calling for a 500 percent increase in the rate of decline in TB incidence. This would be a radical change from the status quo.
And last year, the Stop TB Partnership released the Global Plan to End TB. The title of the Global Plan is Paradigm Shift. They defined Paradigm Shift as “a time when the usual and accepted way of doing or thinking about something changes completely.”
A New Agenda. A New Global Attitude. A Paradigm Shift.
Yet, here is where we are today:
We have bold goals that we are not on track to meet.
And even though we all seem to agree that we need to do things radically different, little has changed.
This is a paradox.
Now, we all have the power to make a choice. We can choose the status quo. But, if that is what we choose, then we should give up the goals and strategies and plans that we have made — because we will have to admit we have no hope of achieving them.
Or, we can do what we all recognise we must do, and we can change. If we choose to change, we have a shot at beating two of the worst epidemics that humanity has ever known. I know you are with me in agreeing that we must change, and we can change.
Let us start the process of change right now.
Take a look around the room. You might see some people here as being part of the TB community, and you might see other people as part of the AIDS community. Or, maybe all of us here are the TB people, and two days from now the AIDS people will arrive.
We tend to identify ourselves — and others — with specific diseases. This is okay in some contexts. Sometimes people are experts in one disease. But the response to TB-HIV has been slow, and many people have died as a result, partly because of weak coordination between TB people and HIV people. Many times, identifying ourselves with specific diseases creates harmful competition. This makes it harder for our communities to join together in one, unified fight.
So, instead of identifying ourselves with specific diseases, let us act together in solidarity with the people and the communities affected by those diseases. We can erase these artificial divisions in reality by first erasing them in our own minds.
That leads me to another way that we can change.
It is no secret that there are some cultural differences between the professional groups of people working mostly on TB and those working mostly on HIV and AIDS. The TB community has a reputation for being seen as very technical, traditional. People believe that we don’t like to rock the boat. We sometimes reinforce this reputation ourselves in ways that make it harder to work together with others.
Here is an example: If you have ever heard someone say the words, “TB is not sexy,” raise your hand. Please, can we all agree to stop saying this? When we say this, we give people a reason not to work with us or to support us. This mind-set gives people permission to not care.
Here is the truth: TB is a scourge. Drug-resistance is a crisis. TB-HIV is killing people every day.
When people who do not know anything about TB learn that TB is airborne, that TB kills millions of people, that drug-resistance is spreading, watch their reaction. They don’t think TB is boring. They say: “How did I not know about this before?”
We must be bold and we must be visible and we must tell the world that TB is here, it affects all of us, and we can and must end it.
Let us all commit to each other, right now, that we will stop seeing TB as a boring issue that people don’t care about. It simply is not true.
See, those are two small things that we can do, right now, to begin the process of change that we need in order to work together to solve this challenge of TB-HIV.
As we move forward, I see other ways we can change — other areas where we can work together as one community.
We need active TB case finding to be the norm, everywhere.
We need to aggressively address comorbidities. TB-HIV, but also TB-HIV-diabetes. This is an area where South Africa is showing leadership.
We must see urbanisation and aging populations as global trends that will increase TB rates, and design responsive strategies.
We need to address root causes of the TB-HIV epidemic: poverty, malnutrition, poor housing conditions, injustices from stigma to gender discrimination and the denial of human rights.
Part of ending TB stigma includes becoming more conscious of the way that we have traditionally talked about TB patients. We must use patient-centred language and end the use of terms like TB “suspects” and “defaulters” that make patients sound criminal.
Ultimately, we need a fundamental change in the way that we approach TB. We can adopt the same approach that the AIDS community has followed for years. We must end our approach to TB that is based on our current resource supply, and begin a new approach based on demand.
When we do that, we will feel the landscape shift beneath our feet. We will confront the fact that one out of every three people in the world is living with TB infection.
An approach to TB that is based on demand would acknowledge that people living with TB infection have a right to know their status and to make informed decisions to safeguard their health.
We will immediately see the hundreds of thousands of people who have been treated for multidrug-resistant TB (MDR-TB), only to lose their hearing because of the medicines. We will see how becoming deaf has forever changed their lives. We will see that they need intensive support: hearing aids, surgery, or sign language skills to integrate back into their communities.
We need to confront the crisis of drug-resistance. Drug-resistance is an indictment against us — a crisis that has arisen from our failure to ensure quality TB care everywhere.
Last May, WHO endorsed a new treatment for MDR-TB, that reduces a 24 month treatment to nine months. The Union, MSF, the Damien Foundation have spent years testing this regimen. Now, it is ready for widespread use. We must work together to support governments to introduce the new nine-month regimen.
This involves including the new regimen within clinical guidelines, training health-workers to deliver the new regimen, supporting patients, and making sure that we have steady supplies of quality-assured medicines.
When changes in TB treatment have happened in the past, high burden countries have taken a year, on average, to plan for the change, and then another two years to implement it. Three years. In three years a million and a half people get MDR-TB.
To roll out the nine-month treatment, we need to engage stakeholders now who are responsible for budgeting, procurement, regulation and manufacturing. And we need to work with affected communities to advocate for the new regimen and monitor its roll-out.
This crisis of drug-resistance is so crucial that we have made Confronting Resistance the theme of the next Union World Conference this October.
Lastly, as they say in politics, we need to build a bigger tent.
We need better collaboration between people in TB and HIV, and also between people working on NCDs, tobacco use, and air pollution.
But because TB is an airborne disease, and a signature disease of urban poverty, we also need to engage urban planners, architects, and city governments.
We need to engage faith communities to preach against stigma and to mobilise people of faith to support individuals and families and communities affected by TB.
We need the wider public to know that TB is here, that it was never eradicated, and that we have solutions.
We are living in a time of amazing progress on the one hand, and grave uncertainty on the other. We see political movements emerging in some parts of the world that, if allowed to succeed, would take us backward, to a time where people had fewer rights, where we saw less compassion for each other. Theirs is not a world where we can solve global challenges like TB and AIDS and antimicrobial resistance.
We cannot be passive. We cannot allow the status quo to continue. We must change. Together we can change. If we can change, then we can change the future of TB and of HIV, and together we can end these epidemics as we have resolved to do.
Thank you very much.