ITPC Global Annual Report: Communities on the Frontline video transcript

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ITPC Global Annual Review 2020

ITPC Global is proud to share its 2020 Annual Report, A Year Like No Other: Communities on the Frontline as a video.

You can also read the online summary or download the PDF.

A Year Like No Other: Communities on the Frontline video transcript.

LOON

My name is Loon Gangte and I work for the International Treatment Preparedness Coalition as the Regional Coordinator for South Asia.

 

When I first heard about this new coronavirus in China, I knew it was only a matter of time until it eventually reached India. 

 

I thought, what will happen to our community of people living with HIV/AIDS, who have to take their antiretroviral medicine? How will they get their medicine? That is our concern.

 

I followed the news closely, and before the Indian government announced the lockdown, we at DNP+ closed our office so that our staff could stay home and get safe from COVID-19. 

 

We assembled a team that could deliver medicine to people who could not move out of their homes because of the lockdown. 

 

We put flyers up across the city and all of the ART Centres with five of our staff mobile numbers so that people who are running out of medicine, or people who could not reach the ART centre could call us, so we could immediately go and respond to them.

 

Then we delivered HIV and Hepatitis C medicine across the city and also to the neighbouring state like UP, Haryana, Punjab and even to Rajasthan.

 

We reached more than 300 people during this time. 

 

SOLANGE

Today more than ever, it is clear that quality health is luxury for the elite, and not a right for all. 

 

Although changing this seems impossible, when we join forces and fight together, small changes can have big impact. 

 

In March 2020, we realized we were headed towards another global pandemic but ITPC was uniquely prepared for this moment.

 

Our name is sort of a running joke inside the organization—International Treatment Preparedness Coalition—it’s a mouthful and hard to translate.

 

But during COVID, the word “preparedness” took on a whole new meaning.

 

ITPC was born out of the need to prepare and respond to pandemics. 

 

So right away, we got to work.

 

We mobilized our response based on the needs and the issues raised by real people on the ground within our Global Activist Network.

 

Groups like Loon’s immediately got organized and made sure that people were getting medicine and food, and they were responding to the needs that they were seeing on the ground. Petrol rice medicine … people were even complaining not only about HIV medicine but about medicines for chronic diseases like hypertension and diabetes all of a sudden missing in the midst of COVID.

 

Like we do for HIV and other diseases, we knew we could serve as a bridge between science and what communities can actually understand. The average person doesn’t understand the randomised controlled trial results and lots of the Geneva-speak and what comes out of the WHO. And ITPC served as a bridge between science into relatable messaging for communities, for communities to be able to protect themselves and their loved ones.

 

You will hear from our network of activists, like Alma, Martin, Loon and others across the globe who are working for the change we want to see.

 

MARTIN ELLIE

 

In September of 2020, ITPC reached out to us to carry out community-led monitoring to document treatment access gaps as a result of COVID. 

 

We got to work right away, surveying health facilities and interviewing people living with HIV in Freetown, the capital of Sierra Leone.

 

We realized something surprising… Freetown had no data on the number of people experiencing treatment failure

 

This is when people are no longer responding to certain ARV regimens, and it’s important because if we don’t know how many are failing treatment, how can we advocate for better quality regimens?

 

LOON

In order to pick up the medicines, we go to the hospital and present the patient IDs, and collect their medicine.

 

But after a month, the ART Centre called us up and gave us a long list along with a big box of medicine, so that we could start distributing the medicine.

 

When ITPC saw what we were doing, they supported us before we even asked. They gave us money, a small grant, for our PPE, our protective gear for ourselves and our clients, as well as some money for provision of food, ration, like rice, sugar, oil etc. which is very helpful. It is pointless to take antiretroviral medicines on an empty stomach.

 

It was scary going out every day. When I came home to my family, I go straight away to my balcony and took off all my clothes, sprayed on disinfectant, and hung them on the balcony for the next day, to dry in the sun. 

 

We were afraid ourselves but we need to make ourselves available, otherwise what are we for if we call ourselves a community organization?

 

ALMA

When people talk about access, we usually think about getting to services, long distances, stockouts. But we often forget about affordability. Cuando la gente habla de acceso, generalmente pensamos en llegar a servicios, largas distancias, desabastecimientos, pero a menudo nos olvidamos de la asequibilidad.
We understand that ARVs are free, but they are paid for by our governments. People living with HIV in countries like Guatemala, where I live, are not always able to access the best medicines like dolutegravir, for example, because our government is classified by the World Bank as an upper-middle income country and therefore we do not get discounts for this medicine. But this is not the case on the ground. Almost fifty percent of people live under the poverty line. 

But because our GDP is high, we get this classification. This classification has a devastating impact on the lives of real people in my country.

Entendemos que los ARV son gratuitos, pero nuestros gobiernos los pagan. Las personas que viven con el VIH en países como Guatemala, donde vivo, no siempre pueden acceder a los mejores medicamentos como el dolutegravir, porque nuestro gobierno está clasificado por el Banco Mundial como un país de mediano ingreso y por lo tanto no obtenemos descuentos por esto medicamento. Pero este no es el caso sobre el terreno. Casi el 50% de las personas viven por debajo del umbral de la pobreza. Tenemos la cuarta tasa más alta de desnutrición crónica del mundo y la más alta de la región de ALC.

 

Pero debido a que nuestro PIB es alto, obtenemos esta clasificación. Esta clasificación tiene un impacto devastador en la vida de personas reales en mi país.

As ITPC LATCA, we have worked with ITPC’s global, national and regional partners, to advocate for better pricing and we are proud to say that we have lowered the price of dolutegravir from about $240 to about $6. Como ITPC LATCA, hemos trabajado con socios globales, nacionales y regionales de ITPC, para abogar por mejores precios y estamos orgullosos de decir que hemos bajado el precio del dolutegravir de alrededor $240  a $ 6.00

 

 

LOON

No one expected COVID-19 to happen, but when it did, we were able to rapidly organize our communities to take care of everyone. 

 

ALMA 

 

We were reaching people that the government would never reach. 

 

MARTIN

Even the big NGOs, 

 

DENIS

they can’t move as quickly on the ground as we do.

 

ALIM

And I think that’s really the strength of ITPC.

 

PATRICIA

We don’t have to wait for anyone to tell us what to do. We already know what needs to be done…

 

EVERYONE

… and we do it