Living With HIV, Dying of Tuberculosis
HIV does not kill people. People living with HIV/AIDS die of opportunistic infections. This is a basic medical principle that anyone on anti-retroviral (ARV) therapy can tell you -- but 25 years into the HIV/AIDS pandemic global leaders seem to not to have gotten the message.
In the global south -- Africa, Asia, and Latin America -- tuberculosis (or TB) is the leading killer of people living with HIV and AIDS. Yet to look at the global response to HIV/AIDS, one could be excused for thinking scientists had just discovered that keeping people alive requires more than ARVs.
According to the best available data from the World Health Organization (WHO), as few as 1% of people living with HIV/AIDS around the world are even screened for tuberculosis.1 Of those who were screened for TB, more than one in four had active tuberculosis (Figure 2).
TB is killing hundreds of thousands of people living with HIV/AIDS every year worldwide, yet the response has been a near-complete failure. Where's the outrage? Where's the action?
Tuberculosis in the Early Days of the AIDS Pandemic
Tuberculosis has been around for thousands of years. Yet in an era in which we can clone sheep and send information across the earth in the blink of an eye, TB continues to kill two million people each year. Over nine million people develop active TB each year and an overwhelming 95% of these cases occur in the global South -- yet we continue to use drugs and diagnostic tools developed over half a century ago and a vaccine we know is ineffective.2
The TB and HIV link is far from a new story. Indeed, in the US doctors and activists were panicked in the late 1980s and early 1990s as TB rates skyrocketed with the HIV pandemic and they struggled to get the twin diseases under control. New York City, for example, saw a four-fold increase in TB rates between 1985 and 1988.3 AIDS groups filed lawsuits and ActUp New York staged a major demonstration at city hall -- demanding that people living with HIV/AIDS (PLWHA) be given safe housing away from the TB wards and over-crowded shelters where they were placed at such risk.
A New York Times piece from the time captured well the fear in its title, "AIDS Patients, Facing TB, Now Fear Even the Hospital." And the advice was clear: "Doctors advise that anyone infected with H.I.V. be tested for tuberculosis and, if positive, start taking the drugs that would help them avoid developing active disease."4 That advice has changed little in the last 15 years.
New York has improved dramatically since then. The number of TB cases reported among PLWHA has dropped 90% since the early 1990s. Few of these people dying compared to the hundreds of deaths each year at the height of the city's TB-HIV co-epidemic.5 But those living in more impoverished cities across the world continue to face a high risk of getting TB.
A Global Crisis
In sub-Saharan Africa, which has the highest rates of both diseases, TB is the leading killer of people living with HIV/AIDS. HIV/AIDS has caused TB incidence to triple since 1990.6 Autopsy studies from across Africa have shown undiagnosed TB in 14-54% of people with HIV infection.7
In Southern Africa the estimates are even more overwhelming. In Swaziland, for example, almost 80% of those with TB tested for HIV are found to be positive. The Ministry of Health estimates that TB kills 50% of HIV infected patients and accounts for more than 25% of all hospital admissions.8
The emergence of drug-resistant TB is a growing threat to people living with HIV/AIDS. In one now infamous case in Tugela Ferry, South Africa, extensively drug-resistant TB spread through an HIV support group -- killing 52 of the 53 people, most within weeks.
Living With HIV, but Dying of TB: Where Is the Global Action?
Ten years after the ActUp demonstrations, officials from WHO's Stop TB Department moved to clarify the need for TB testing for PLWHA, stating that "... those found to be both HIV-positive and with active TB need referral for TB treatment; those without active TB should be offered TB preventive treatment with isoniazid."9 The WHO and UNAIDS unveiled plans in early 2004 to expand collaboration between national TB and HIV/AIDS programs, promising that "TB casefinding will be intensified in high HIV prevalence settings by introducing screening and testing for tuberculosis into HIV/AIDS service delivery points."10
Nearly five years later, the evidence shows the response to be anemic at best.
A Failing Global Response
One of the most logical indicators of whether AIDS programs are, in fact, taking seriously the threat of TB to people living with HIV/AIDS is the extent to which PLWHA are being screened for TB. It is but one of the key interventions needed -- in addition to providing preventive therapy and scaling up infection control. But it is perhaps the most measurable starting point.
The most recent WHO data show that a total of 314,394 HIV-positive people attending HIV care services were screened for TB. This is a total of 0.96% (less than 1%) of the total 33 million estimated PLWHA. In South Africa in 2006 only 1.83% of PLWHA were screened for TB; in Nigeria in 2007 2.25% of the estimated number of people living with HIV had been screened for TB.
One in four of the PLWHA who were screened had active TB (Figure 2). Without proper treatment, approximately 90% of PLWHA die within months of developing TB.11 The standard of care is clearly to screen every person receiving HIV services for TB -- so why are we so behind?
A second disturbing reality is that most countries and programs do not even know how many PLWHAs are being screened for TB. Researchers with the RESULTS Educational Fund and the ACTION Project spoke or corresponded with dozens of officials at WHO, UNAIDS, PEPFAR, the Global Fund, and the World Bank, as well as ministry or program officials in South Africa, Kenya, Botswana, Swaziland, and Lesotho. The answer across the board was the same: TB testing of PLWHAs is not currently being tracked and is universally understood to be quite low.
In Swaziland -- whose TB-HIV rates are so striking -- the health system was set to roll out a "pilot program" in August 2008.
Over 25 years into the pandemic -- decades after knowledge of the TB-HIV link -- how can we still be at the stage of pilot programs? How can we still be failing to even screen 99% of PLWHAs for the disease most likely to kill them?
Where Do We Go From Here?
We must demand universal TB screening and care. Every HIV program in a high co-infection region should be regularly screening every PLWHA it serves for TB. It is important to recognize that TB screening is especially difficult for PLWHA -- who often come up "negative" using the century-old TB diagnostic that involves technicians looking at sputum through a microscope. Nonetheless, a combination of laboratory and clinical screenings can be used to identify TB -- and must be used to ensure PLWHA are not living with HIV and dying of TB.
Those with TB must have immediate access to treatment, and those who have not developed TB must be put on preventive therapy to protect against it. All too often the TB programs and the HIV programs are simply not coordinated -- so people accessing free anti-retrovirals (ARVs) that may cost thousands of dollars are still dying because they cannot access the $20 course of TB treatment.
PLWHA in the global south deserve infection control measures that work. Increasingly, as ARV treatment has been scaled up across the world, reports are coming that these treatment centers are becoming breeding grounds for TB as people wait for hours in small, unventilated spaces. Simple measures like fans and windows can help stop TB from spreading.
Those of us in wealthy countries must hold the big AIDS donors accountable for providing good public health to people around the world. None of the three biggest -- the Global Fund to Fight AIDS, TB, and Malaria, the Presidents Emergency Plan for AIDS Relief (PEPFAR), or the World Bank -- has a concrete plan to ensure that all the people being reached by advanced AIDS treatment are being screened for the disease that's most likely to kill them.
And we must also value impoverished people at least as much as we value male baldness, erectile dysfunction, and other conditions that can be solved by a little blue pill. Research and development are badly needed for a truly effective TB vaccine as well as new treatment and diagnostics. It is outrageous in our scientific era that the chief way people are diagnosed with TB is through a single person's looking through a microscope hoping to spy bacilli. In southern Africa we hear of labs with backlogs so long that the weight of racks of petri dishes awaiting attention is actually cracking the floor. It's time for a 21st century response to this centuries-old disease.
And finally, what is most needed is a global activist response. Amazing groups like ActUp in the US and the Treatment Action Campaign in South Africa having taken on TB-HIV in a serious way, but they cannot do it alone. Activism was key to pressuring companies and regulatory agencies to research and develop the drugs that are keeping so many alive and the push to ensure universal access to them. Likewise, it is through activism that we will see the end of the TB crisis.
Matthew M. Kavanagh is the global campaigns director at the RESULTS Educational Fund and coordinates the seven-country ACTION project, where you can take action on TB at www.ACTION.org. RESULTS research coordinator Paul Jensen contributed to this article.
The ACTION Project. 2008. The 1% Scandal: Living with HIV, Dying of TB. www.action.org/site/publications/65/.
Laroche E, Araneta MR, Stoneburner RL, Adler JJ. 1989. "Four-fold increase in tuberculosis/AIDS patients in New York City, 1985-1988." International Conference on AIDS. 1989 Jun 4-9; 5: 122 (abstract no. W.A.P.16).
World Health Organization. 2004. Interim Policy on Collaborative TB/HIV Activities. Ref. in www.who.int/mediacentre/news/releases/2004/pr5/en/.
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