World AIDS Day—New Strategy Aims to Take on Cryptococcal Meningitis, Which Threatens Those With HIV

December 1 is World AIDS Day, and in honor of that commemoration we are bringing attention to an important new global strategy aimed at taking on cryptococcal meningitis (CM)—which many people may be surprised to learn is the second leading cause of death among people with HIV. Earlier this year, the CDC Foundation joined with seven public health organizations working in Africa to develop a bold framework for ending deaths from cryptococcal meningitis by as soon as 2030.

Though many in the general public have never even heard of CM, there are an estimated 220,000 new cases and 181,000 deaths from the disease every year, and most of these deaths occur among people living with HIV.

The cryptococcus fungus that causes this infection surrounds us. For instance, it’s commonly found in soil all over the world. For most healthy people, exposure has no effect, but in those with a compromised immune system, it can cause severe and progressive suffering. The symptoms are minimal at first, and often misdiagnosed. As the disease advances from the lungs into the brain and spinal cord, it can cause paralyzing headaches, blindness, deafness and, too often, a very painful death. CM has an especially devastating impact in countries in Sub-Saharan Africa.

Despite this grim picture, there is cause for hope moving forward. One of the most exciting developments right now in the fight against CM is that we now have many basic tools needed to stop people from needlessly dying.

Today, we have better, evidence-based interventions to screen for infection and then treat it. An inexpensive, rapid diagnostic test, the CrAg-LFA, allows for early detection with a simple prick of the finger, making it ideal for use in countries with limited resources. We also have anti-fungal medications like Amphotericin B, flucytosine and fluconazole that improve survival in patients with cryptococcal infections. We’re also hearing about new, even more effective regimens.

But these essential, lifesaving tools can’t stop CM if they are not available in the low- and middle-income countries that so desperately need them.

The partners who drafted the framework for ending CM deaths by 2030 believe this deadly disease has been ignored for too long, and that eliminating CM deaths is a critical part of the larger strategy to end the HIV epidemic. This coalition includes the National Institute for Communicable Diseases, Doctors without Borders, Global Action Fund for Fungal Infections, International Treatment Preparedness Coalition, St. George’s University of London, Drugs for Neglected Diseases Initiative, University of Minnesota and the CDC Foundation. The strategy the group has developed provides a clear and achievable roadmap for countries to follow in order to end CM deaths in less than 10 years from today.

First, high-level targets must be set for CM screening, treatment and outcomes. Currently many of those who die from CM are not diagnosed and have no opportunity to receive treatment. And, those who are diagnosed often receive suboptimal treatment. In order to improve outcomes, donor support must be increased and include targeted funding to ensure that all people with CM are identified quickly and treated with the World Health Organization (WHO)-preferred regimen of flucytosine and amphotericin B.

Barriers to accessing these medicines must also be removed. Flucytosine is an over 60-year-old medication that is only now becoming available in some countries in Africa for the first time. It must continue to be made available and affordable, and the pharmaceutical industry should fund additional research and development into new, more effective treatments for CM. Finally, an essential part of this new initiative focuses on implementation, and the framework outlines specific ways that public health organizations can work with countries to put screening and treatment protocols into action.

Progress is within reach. Over the past year increased funding from organizations like The U.S. President's Emergency Plan for AIDS Relief (PEPFAR), Unitaid, and the Global Fund to Fight AIDS, Tuberculosis, and Malaria has brought greater support and awareness to the fight against CM, but there is still more work ahead. By continuing to galvanize resources and attention around this deadly but treatable disease now, we will be able to change the future for thousands of people living with HIV.

We can, and we must, make the idea of someone dying from CM unacceptable.

Photo of Rebecca Cook
Rebecca Cook, MPH, is a senior program officer for the CDC Foundation.
Ruth O'Neill headshot
Ruth O’Neill is a senior communications officer for the CDC Foundation’s department of infectious disease programs.