Ending AIDS means prolonging life with HIV
By Stephanie Nixon, co-founder and director of the International Centre for Disability and Rehabilitation.
This weekend the Government of Canada will host the Fifth Replenishment Conference of the Global Fund to fight AIDS, Tuberculosis, and Malaria in Montréal. As the rallying cry from The Government and The Global Fund is: Together, we can "End It. For Good", there is an important nuance in this storyline that risks getting lost. Ending AIDS doesn’t mean the end of HIV – it means the opposite. Ending AIDS means prolonging life with HIV.
Put yet another way, ending AIDS means HIV-positive people are not dying from AIDS. In other words, reducing the prevalence of AIDS means that people living with HIV no longer have dangerously low CD4 counts and aren’t contracting AIDS-defining illnesses.
To be clear, a crucial goal is the primary prevention of HIV among people who are HIV-negative. But for the 36 million people who are currently HIV-positive, in the absence of a cure, the goal is to reduce the prevalence of AIDS in order to allow for a long and relatively healthy life with HIV as a chronic illness. To understand this point, one must understand the difference between HIV and AIDS.
A brief lesson on the difference between HIV and AIDS
The terms HIV and AIDS are frequently used as if they are synonyms, but they aren’t. And the difference matters for effective advocacy, policy and health systems.
HIV (human immunodeficiency virus) is the virus (the actual tiny speck that can be seen under a strong microscope) that causes illness. You can test for the presence of this virus with a blood test. It is this virus that attacks the immune system, which makes people who are HIV-positive more vulnerable to infections in all other body systems.
AIDS (acquired immune deficiency syndrome) is a category that was developed for public health purposes. You cannot see it under a microscope or do a blood test for it. Rather, to be diagnosed with “AIDS”, one has to meet the following criteria:
Be HIV-positive, and
Have a CD4 count less than 200 cells/ml3 (noting that CD4 cells, also called T-cells, are healthy white blood cells in the body that HIV targets and depletes), or
Be diagnosed with one of more than two dozen diseases that have been designated as “AIDS-defining clinical conditions” (these include a range of opportunistic infections, cancers and other syndromes)
In the absence of a cure, ending AIDS means turning HIV into a chronic illness
The search for an HIV cure is underway, and efforts must continue and intensify. However, a cure to eradicate HIV in people who are HIV-positive remains decades if not generations away.
In the meantime, effective HIV treatments can improve CD4 cell counts and reduce AIDS-defining infections and cancers. This can be called “ending AIDS”. For many people living with HIV, it can also be called “getting on with life”. When people have reliable access to quality HIV treatments, HIV can begin to approximate a chronic illness with unpredictable ups and downs. Some have referred to this as “episodic disability”. Innovative responses can come from the field of rehabilitation science, which addresses the day-to-day impacts of living with disease and disablement. The HIV field can also take lessons from chronic disease frameworks, many of which address non-communicable conditions, such as diabetes and arthritis, which are becoming increasing prevalent among people living with HIV.
The Global Fund provides widespread support through programs designed for people living with HIV. Furthermore, Canada punches above its weight in this area. As usual, it is people living with HIV and their advocacy communities who are great leaders and innovators in this field. In particular, the Canadian Working Group on HIV and Rehabilitation is a national, multi-sectoral organization that has been driving research, policy and clinical practice to better meet the needs of people living with HIV-related disablement for nearly two decades.
Keeping pace with evolving epidemics
These efforts dovetail with the aim of the Fourth Global Symposium on Health Systems Research in November to tackle the health system changes needed to keep pace with the evolving epidemics. For example, our team of Canadian and Africa collaborators will present an open-access teaching tool on rehabilitation for children and youth living with HIV in Sub-Saharan Africa.
This is all part of the collective effort to shift the focus from surviving AIDS to thriving with HIV. This shift requires a different approach to health systems and services – one that can and should learn from rehabilitation and chronic disease frameworks.
So yes, let’s rally around ending the epidemics of TB, malaria and AIDS for good. And let’s redouble efforts toward primary prevention of HIV among people who are HIV-negative.
This is not a small issue: the goal is to end AIDS for all of the 36 million people living with HIV worldwide, and this number is rising. But let’s also recognize another metric of success: the increased prevalence of people living with HIV (and not AIDS) if we can successfully reduce AIDS-related deaths.