The leading cause of death for people living with HIV is inaccessible diagnostics

Loon Gangte reminds us that advanced HIV disease (AHD) is real and people dying from it have been failed by governments, donors, pharma and the HIV movement.

There is some good news – since antiretroviral therapy has scaled up and many of us have achieved undetectable viral load levels. We have become healthy, sexy, better – but if you look at my country India, about 30% of people living with HIV have CD4 counts below 200. These are the people who develop advanced HIV disease. Why is this still happening? Governments, funders and even networks of people living with HIV have forgotten that advanced HIV disease (AHD) is still killing people.

20 years ago, we all had advanced HIV disease. My CD4 cell count was 98 before I started taking ARVs.

A year ago, my organization – the Network of Positive People began an AHD outreach project because as an HIV advocacy network, we felt we had been neglecting this population. We reached out to more than 1100 people and more than 400 of those people had advanced HIV disease.

There is some good news – since antiretroviral therapy has scaled up and many of us have achieved undetectable viral load levels. We have become healthy, sexy, better – but if you look at my country India, about 30% of people living with HIV have CD4 counts below 200. These are the people who develop advanced HIV disease.

This is why it is so important to focus on advanced HIV disease.

As people living with HIV, we have all had to confront the reality that we are going to die eventually, but people with AHD often develop cryptococcal meningitis. It is the most horrific way to die. You can’t see, you can’t hear. It is a very painful disease.

So, who are these people with AHD? They are adolescents. They are children under 5 years old. They are adults presenting with CD4 counts below 200.

In our organization, roughly 30% of people are developing AHD. They haven’t been able to access treatment and don’t have the opportunity to achieve U=U. They have TB, sometimes MDR-TB and they develop cryptococcal meningitis.

Most of us have forgotten what AIDS looks like. Many countries hardly do CD4 tests anymore and manufacturers have stopped making the tests because they say they are profitable. Without CD4 tests how do we manage AHD?

Most experts will tell you the leading cause of death for people with AHD is TB. They are wrong—the leading cause of death for people living with HIV is inaccessible diagnostics. We have developed very cheap, effective TB diagnostics called TB LAM that only cost about $3, but in many countries including my own, we can’t access it.

We must ask ourselves who we are advocating for.

The leading cause of death for people living with HIV is inaccessible diagnostics

Do our organizations only represent healthy people living with HIV or are we working where we are needed most, for people with AHD? We must ensure that everyone benefits from the scientific advances we have access to, but the reality is that we’ve forgotten these people.

We will talk about AHD at this conference, but when we go home we need to remember that AHD is real, and it is killing our friends. We need to advocate for the diagnostics required for AHD, cryptococcal meningitis and MDR-TB.

We need to get back to our roots and save our friends because that is the reason my organization exists and if we don’t advocate for the rights of people with advanced HIV disease funders and governments certainly won’t.

It’s time to roll up our sleeves and hold our government accountable.