There doesn’t have to be a dichotomy between AIDS and other diseases on the world stage. While there is still a long way to go in terms of expanding HIV/AIDS prevention and treatment, ongoing media research at the Boston University School of Public Health suggests there might be a great deal that proponents of neglected illnesses — like childhood pneumonia — can learn from the “success” of AIDS.

What makes a disease a “success”?

Over the past quarter century, there have been close to a million news articles about AIDS. The closest competitors for other infectious diseases are malaria and tuberculosis, with nearly 200,000 articles each.

Lower respiratory infections are the leading cause of burden of disease globally (in 2004, 94.5 million DALYs [disability adjusted life years]); more specifically, childhood pneumonia  kills 1.8 million children a year and remains the dominant cause of child mortality (20%). Yet there have been just 12,000 news articles about childhood pneumonia in the last 25 years.

When you look at funding, the differences are just as striking. From 1996–2003, HIV/AIDS received nearly half of all funds for infectious diseases in the developing world. Acute respiratory infections (which include childhood pneumonia) received 2.4%. Why?

Maybe it’s the story.

AIDS has always been a dynamic story, with activists marching in the streets, newly funded programs being announced, and rock stars flying off to distant lands on press junkets. And there is the very nature of AIDS itself, a disease that cut into the underbelly of society and released the unmentionable: sexual and gender discrimination and disparities in health between rich and poor.

Childhood pneumonia is but a struggling child actor against such a celebrity disease. It may be an inherently different, less sexy story. But maybe there is much to learn from the AIDS narrative and how it’s been told.

When news articles on AIDS and childhood pneumonia are examined for basic themes, a human rights bent is much more prevalent in AIDS news stories than in childhood pneumonia articles. AIDS activists have been always been media savvy and have framed their story in such a light. Childhood pneumonia policymakers and activists usually frame their story as requests for funds because “it’s the right thing to do.” The media stories about pneumonia, likewise, reflect this theme.

Maybe it’s time to change the childhood pneumonia narrative. Once again, the success of AIDS is instructive. In 2001, the media savvy Treatment Action Campaign (TAC) in South Africa began a campaign to change government policy on providing nevirapine to reduce mother-to-child transmission of HIV. While TAC’s approach turned from a media approach to a primarily legal approach, their success is notable. The Constitutional Court of South Africa ruled in their favor, specifically citing the constitutional rights of the children of HIV-positive mothers to “basic health care services.” This approach might seem, on the surface, to be steeped in the nature of HIV/AIDS. But the ruling is not based in the specifics of HIV, but rather in the right to health, particularly for children. The benefit of a human rights concept for childhood pneumonia is that a legal framework exists for such an approach in many countries and on the world stage.

Activism for childhood pneumonia may be difficult to achieve. While the adult victims of HIV/AIDS have been able to march in the streets, children are a voiceless, un-empowered group. Even within HIV/AIDS, attention and funding for pediatric AIDS has always lagged behind funding for adults. Again, the media reflects this: only 10% of AIDS-related news articles mention pediatric populations. Even when one looks at a disease that has its greatest impact on children — malaria — this 10% rule still exists.

Last, the media follows the money. AIDS, tuberculosis, and malaria get the most funding and the most media attention in terms of the number of articles in the press. Major killers like childhood pneumonia and diarrhea are greatly underfunded and are also greatly underreported. This may create a vicious cycle, whereby diseases with more funding prompt more new initiatives, more media coverage, and more attention, and then, once again, more funding.

But if the media knew how much their news coverage mirrored funding and not disease burden, might there be a change in reporting? And if a new cadre of activists-policymakers, or maybe the millions of mothers and fathers who have lost children to pneumonia, learned from the “success” of AIDS, might they one day tell a different story?

Balancing intellectual property rights with global health considerations has long been a contentious issue in public health. The $800bn pharmaceutical industry has been criticized in recent years for putting profits ahead of the needs of people in the developing world. This announcement marks an important step toward increasing access to medicine in the developing world, and following through with several of the recommendations made by Paul Hunt, U.N. Special Rapporteur on the right to health from 2002-2008. Two years ago, he estimated that 2 billion people don’t have access to essential drugs, and urged that drugmakers support research for neglected diseases and cut prices in poor countries, among other recommendations in his guidelines for pharmaceuticals. Finally, a step in the right direction.

Yet GSK’s approach is still plagued with problems; it does not include HIV patents, and their drugs will still remain unaffordable to most poor people, including middle-income countries with large poor populations, like India. In order for sustainable progress to occur, the whole pharmaceutical industry must undergo a radical shift in mindset and practice. Drugmakers must begin to operate on the notion that need, not profit, should drive innovation, and as Amy Kapczynski argues in her article, “patents are not ‘rights,’ but rather privileges – and they do not come before the rights to health and life.”

See also:

Response from Merck & Co. to Human Rights Guidelines for Pharmaceutical Companies in Relation to Access to Medicines, Prepared by the U.N. Special Rapporteur, Paul Hunt – Merck & Co., Inc., Feb 2008

Global Pharmaceutical Patent Law in Developing Countries: Amending TRIPS to Promote Access for All – bepress Legal Series, Mar 2006