AIDS Healthcare Foundation (AHF) sent an open letter today to the heads of the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the World Health Organization (WHO), urging the two institutions to conduct an audit of their HIV data over concerns that the global number of people on HIV treatment is overstated significantly.
AHF’s appeal was prompted by the recent publication of an article in the British Medical Journal (BMJ Open) which shows that the numbers reported by UNAIDS do not account fully for patients who started treatment and then dropped out. Inflated numbers would mean that the progress against the epidemic has been slower than anticipated, and a greater investment of resources will be needed to put the global HIV response back on track.
“AIDS control means that new infections are less than deaths. That is not close to the current reality, and we won’t get there by 2030 unless we change direction and focus on retention,” said AHF President Michael Weinstein. “We have offered to assist UNAIDS with the auditing process in anyway practical.”
The following is a full text of the open letter:
An Open Letter to UNAIDS and WHO Concerning Incorrect HIV Treatment Data
We write this letter to express our alarm over the inaccuracy of global HIV treatment statistics being reported by UNAIDS. We have reached this conclusion based on our experience providing care to over 1.9 million patients in 46 countries, as well as the recently published research article in the British Medical Journal (BMJ Open). The article clearly demonstrates the reasons why UNAIDS’ claimed figures of 76% of all diagnosed patients being on treatment and 71% of those patients being virally suppressed overstate the actual figures.
If these estimates were indeed correct, purporting that more than 29.6 million people were on treatment and 21 million were virally suppressed, we would be seeing a much sharper decline in the number of HIV-related deaths and new infections – these, however, have remained stubbornly high.
Our on-the-ground experience is consistent with the BMJ Open article. When we enter new government facilities and conduct a complete patient chart audit, we frequently find that approximately 25% to 30% of enrolled patients have dropped out of care. Some go to other facilities, while others are lost to follow-up. Irrespective of the cause, in a typical scenario, one-quarter to one-third of patients were unaccounted for, thus not receiving care and medication. In other words, the number of patients reported in these facilities is often cumulative and outdated. We are willing to share our files to validate these assertions.
This is significant for several reasons:
First, globally, we have farther to go to achieve AIDS control than is being portrayed by the current data. Reaching this will require additional funds and innovative methods.
Second, the focus must shift toward targeting retention in care as a major gap. Given that HIV care is still a lifelong commitment, it is inevitable that patients will move and continue facing poverty, insecurity, stigma, treatment fatigue, and numerous other life challenges.
Third, while enormous historic progress has been made in the treatment of HIV worldwide, underestimating the amount of work ahead could discourage essential donors from continuing to contribute generous sums of money.
Fourth, in the public consciousness, repeated and erroneous statements that we are on the cusp of ending AIDS as an epidemic lead people to think that AIDS is indeed over.
UNAIDS relies on governments for their numbers. It is in the interest of governments to present as rosy a picture as possible. For something as important as the current state of the global HIV/AIDS response, real and accurate measurements are vital.
We urge UNAIDS and the WHO to audit at least 10% of patient charts across the globe. That may sound like a daunting task—however, AHF conducts such counts among our nearly 2 million patients regularly. We offer our assistance at the site and country levels, should you require it.
Epidemiology is the starting point for disease control. You cannot control a disease if you don’t know down to the site level who has it or who is being treated for it. We believe that our proposal will be an exciting new chapter for global AIDS that will yield gratifying results. We look forward to taking this journey with you.
Sincerely,
AHF President Michael Weinstein
