TB world looking to successes of HIV advocacy to guide renewed efforts

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In order to garner more media attention, funds and political commitment for tuberculosis, scientists, policy-makers and advocates are looking to the successes of the HIV movement to help guide a powerful patient-driven approach to lung health.

Throughout the weekend-long the 40th Union World Conference on Lung Health that took place in Cancun, Mexico, speakers and delegates pointed to the advocacy and activism of the AIDS movement and its effects on domestic and international investment in combating the virus.

While tuberculosis has plagued humanity for much longer than its viral counterpart, and claimed a near-equal number of lives over the last 30 years, media attention, policy concentrations, and funding efforts have been lacklustre in comparison to the robust reaction to HIV.

Glossary

extensively drug-resistant TB (XDR-TB)

A form of drug-resistant tuberculosis in which bacteria are resistant to isoniazid and rifampicin, the two most powerful anti-TB drugs, plus any fluoroquinolone and at least one injectable second-line drug. 

malaria

A serious disease caused by a parasite that commonly infects a certain type of mosquito which feeds on humans. People who get malaria are typically very sick with high fevers, shaking chills, and flu-like illness. 

strain

A variant characterised by a specific genotype.

 

“HIV has been very effective at mainstreaming [the virus] across the development community, and TB…has many of the same characteristics…in terms of how it affects society,” says Diana Weil of the WHO. “So the question is how can we get similar responses…and draw on the lessons of the HIV community.”

According to David Gold of Global Health Strategies, the relatively small TB response is demonstrated primarily through scant funding and minimal media attention. In 2008, for example, the Global Fund granted $327 million for TB, or 11% of its total funding, with the rest going to malaria and HIV. During the same time, HIV and TB claimed nearly 2 million lives each.

Media coverage is equally disproportionate with regards to the effects of TB. Gapminder assessed the frequency of news reports regarding swine flu and tuberculosis respectively from 24 April to 6 May 2009. During this time 31 people died of swine flu, with 253,442 reports being written about the virus, while 63,066 people died of tuberculosis, with only 6,501 news reports mentioning the disease. The news-to-death ratio based on these findings is 8176:1 for H1N1, and 0.1:1 for tuberculosis.

A Global Health Solutions analysis of TB in the media, assessing news reports from August 2006-April 2009, found that the majority of tuberculosis-focused articles were written during World TB Day or international lung conferences, often focusing on drug access and research, and diagnostics.

The 2007 Andrew Speaker XDR-TB incident, during which an American drug-resistant TB patient flew transatlantic against medical advice, potentially infecting his fellow passengers and thereby their communities, also made headlines throughout North America, Europe and South Africa.

Generally, reporters focused more on MDR- or XDR-TB than non-drug resistant strains. As is the case with funding, malaria and HIV outshone tuberculosis coverage.

Gold suggests that media is an important component to advocacy and activism, and was essential to the strong HIV response. Media coverage increases awareness and can help to disseminate important public health messages regarding prevention, testing, treatment and care.

Gold notes that the 2000 Durban International AIDS Conference helped to bring the world’s attention to the virus, particularly by highlighting a patient perspective and bringing together often disparate groups, such as affected communities, advocates, funders, and policymakers.

Patient advocacy and involvement is most important to the strength of the HIV response, Gold continues. While “TB is considered a public health control issue led by health care professionals rather than activists,” there are more opportunities, including paid work, for patients and patient advocates within the HIV/AIDS sector.

In comparison with TB organisations, there is “greater incorporation of patients into all aspects of AIDS organizations, including governance,” he says.

Dr. Bertel Squire, president of the International Union Against Tuberculosis and Lung Disease, agrees, claiming that the “inclusion and participation by persons affected by lung disease across all levels of all endeavours,” coupled with “permanent…funding” is necessary to “sustain and increase our efforts.”

Gold sees the 2007 Speaker incident as a “lost opportunity” in which the global TB community could have used the case to highlight the threat of drug-resistant tuberculosis, the need for better diagnostics and treatment, and the incidence of TB even in wealthy, industrialized nations like the United States.

Instead, Gold contends, the case was “shunned and rejected by the TB community,” with Speaker not being encouraged to tell his story, thereby foregoing the chance to engage a patient advocate.

In order to make TB better represented, Gold suggests forging a stronger connection between activists in the global North and South, and “[focusing] on moral issues and patient rights in terms of the fight for better drugs, diagnostics…and stock outs.”

High burden countries such as India and South Africa should also act as leaders in the fight against the bacterium, in the same way that Brazil, Thailand, Botswana and Uganda responded urgently and innovatively to the HIV epidemic.

References

Gold, D. TB Advocacy and mass media: what can we learn from the HIV community? Presented at the 40th Union World Conference on Lung Health, 2009.