The right to know
INFORMATION, the saying goes, is power. Conversely, the absence of adequate and accurate information can collapse economies, cripple governments and paralyse societies. Nowhere in the arena of modern science can sound information play as critical a role as in communication around issues concerning HIV/AIDS. The following scenarios should help set the context for a broader discussion of this role.
The morning headline read, ‘AIDS vaccine trial volunteer tests positive.’ By 9 a.m., the clinic telephones were ringing off the hooks and the receptionist threw up her hands in despair. Huddled in a small conference room behind the Principle Investigator’s (PI) office, the clinic’s medical staff drank cup after cup of strong coffee and waited for the next shoe to drop. The receptionist entered to announce that the minister of health herself was on the line for the PI. He groaned and followed her from the room. In his mind, he ran through the checklist of anticipated events that would close down the trial.
To give the journalist who wrote the article credit, he had reported in the sixth paragraph below the sensational headline that there was no scientific reason to assume that the infection resulted from participation in the trial; it had been unequivocally established in earlier studies that an individual could not contract AIDS from the vaccine. Unfortunately, the average newspaper reader rarely continues beyond the first few paragraphs of a story and the damage was done.
The national public radio picked up the story and ran it as top-of-the-news during rush hour that afternoon. It featured as the lead story on the evening television. By the next morning, the same headline appeared in newspapers across the region, where other clinical trials were underway, generating similar levels of hysteria and anger.
Meanwhile, the same journalist filed a story on the playoff match for the highly contested football championship. Sports were his regular beat. He had covered the vaccine story because the reporter who regularly handled HIV was away with a new baby. He knew HIV was a virus and that it could be spread through sexual encounter but beyond that, preferred to think it couldn’t affect him.
In a neighbouring country, a prominent member of the health committee challenged the link between HIV and AIDS in a speech on the floor of Parliament. Poverty and racism drove the spread of the disease, he asserted, implying that somewhere in the scientific rhetoric that bombarded them every day was yet another grand conspiracy against the region.
Regulatory officials, influenced by these remarks, withdrew approval for distribution of certain medicines to treat those who were infected. Religious leaders reopened their discussions on the public promotion of safe sex and condom use. The pending approval of a protocol for an AIDS vaccine trial was postponed.
Both these scenarios are real. They happened in part because of a lack of information about HIV/AIDS or a failure to understand the basics about the disease. As the world enters the third decade of the worst pandemic of modern times – approaching 60 million people infected worldwide – it has become increasingly critical to communicate the science of HIV, the benefits of treatment and prevention, and the ABC’s of vaccines and vaccine trials.
The stigma still surrounding this disease, even 20 years after it was first diagnosed, flourishes in an environment of ignorance about the true causes of AIDS and an ingrained reluctance on the part of many individuals at every level of society, to be educated. A woman knows that the virus can be transmitted to her baby through breast milk, yet she hesitates to use the formula available at the clinic. Others in her village will know she is infected and shun her as immoral, if not force her out of the community altogether. In many parts of the developing world, the funeral cortege is an all-too-familiar presence on a daily basis, and yet publicly, no one dies of AIDS.
There remains an almost universal reluctance to admit vulnerability to HIV. Indeed, nine out of ten people infected do not know they are. In a recent survey in South Africa – a country with an adult prevalence rate of over 20-45% responded that they personally were not at risk. Many myths prevail about the origin of HIV. In the United States, the idea that HIV is a creation of the government, devised to annihilate black people, is quite common in some African-American communities. Clearly, these misperceptions fuel the epidemic as they negatively influence behaviour towards prevention.
Efforts to address adequate treatment for infected individuals, and prevention campaigns to reduce the risk of new infections, languish for want of leadership within government – and here, again, lack of information and misunderstanding play a role. Sensational headlines, misquoted data, journalists who are unseasoned in AIDS reporting, actually retard progress against the virus, where the media could play such a powerful role in the fight against AIDS.
Unfortunately, the challenges around communicating about AIDS are substantial. Human-immunodeficiency virus (HIV) not only poses the greatest global health threat since the Black Plague, but the science of AIDS constitutes some of the most complex molecular biology of all times. Learning the science of AIDS is a lot like learning a foreign language. First, there is a basic vocabulary: DNA, RNA, CD4 cell, gp 120, cell-mediated immunity, broadly neutralising antibodies. Next come such fundamental concepts as how cells synthesise proteins and the various stages in the life-cycle of HIV.
Communicating about the technologies associated with HIV, like the research involved in the search for a preventive vaccine, further complicates the task. How, for example, does one explain to policy-makers who are considering funding an international research programme that a safe and effective AIDS vaccine is feasible, despite outstanding technical challenges? This involves clarifying such mind-boggling concepts as clades, vectors, immunogenicity, gag, pol and env genes, proteins and peptides, and animal models. Imagine the difficulties of explaining to a potential clinical trial volunteer that while the candidate vaccine does contain actual HIV genes, it cannot cause AIDS.
Yet, understanding that HIV is a blood-borne virus and that no virus can live outside a human cell, helps to debunk the myth that a person can ‘catch’ HIV by being in the same office or classroom with someone who is infected. Understanding how the theory of natural selection applies to viruses as well as to more familiar species, leads to an understanding of what viral resistance is – why anti-retroviral drugs may ultimately fail and why committing resources to the discovery and distribution of a vaccine is so critical.
Understanding the life-cycle of the virus helps policy-makers and community leaders anticipate the mortality patterns that will impact every aspect of society, from the labour force to education to the family. Because the median survival with HIV/AIDS is approximately 10 years, and the age of initial infection is increasingly younger, the life expectancy of both men and women in many developing countries will be dramatically reduced over the next two decades. The projected figures are chilling. In Botswana, for instance, if the epidemic continues unchecked, life expectancy will decrease by more than two-thirds, from 74.4 years to 26.7 years. Similarly, South Africans will have a life expectancy of 36.5 years as compared to 68.4 years at present.
In less than 10 years time, many countries in Southern Africa will see life expectancies fall to near 30 years of age, levels not seen since the end of the 19th century. Population growth will be retarded in at least three Asian countries (Burma, Cambodia and Thailand) and at least five African countries will experience negative population growth because of AIDS mortality. Many individuals and governments have difficulty grasping the reality of these numbers under any circumstances. Lack of understanding of the virus and its life-cycle makes comprehension even more difficult.
For prevention efforts to be effective, everyone, everywhere is the audience for information about AIDS. To recruit adequate numbers of volunteers for vaccine trials, community leaders need to be well informed and confident that they can answer technical questions about the vaccine, the science behind the trial, and the protocol for trial participants.
In decision-making around delegation of financial and human resources to AIDS treatment, policy makers and other key opinion leaders must be educated on the virus and how antiretrovirals interfere with its attack on the immune system. Certainly, for campaigns about safe-sex and condom use to be effective among all relevant age groups, including adolescents, the messages must be available in the mainstream media, in schools and even places of worship.
Employers need to understand the life-cycle of the virus – and how it is or is not transmitted – to manage a workforce that may include infected individuals. Global leaders and institutions cannot make informed choices about allocation of public health dollars, economic aid or social policy without knowing at least the fundamentals of the science behind the disease and the technologies, including medicines and vaccines, that can stop its further spread.
Competition for a finite amount of global resources, human and financial, poses a real challenge for access to HIV/AIDS prevention and treatment, as well as allocation of sufficient funds for vaccine research, development and distribution. Not only does AIDS potentially compete with other diseases of global significance, including malaria and tuberculosis, but health overall too often is viewed as just one of the many fiscal demands, alongside armaments, infrastructure and trade.
The science behind the development of medicines to treat HIV and a vaccine to prevent it is incredibly complicated. Particularly with vaccine research, there will be many perceived failures along the road to success. Here, again, an understanding of research risks plays a major role in sustaining the long-term commitment of funders and policy-makers alike.
Part of the communications challenge, then, is to convey an understanding of the strategic impact of HIV/AIDS on every element of society. Each day the world turns without a solution to the AIDS epidemic, it brings all nations closer to the day of widespread economic and political crisis.
Journalists need to know the difference between a virus and bacteria; how HIV attacks the body; how vaccines and vaccine trials work – the basic knowledge and background to write accurate stories on AIDS. While the audience is fairly inclusive, the type and level of information required obviously varies somewhat. The avenues for communication, while straightforward in many instances, include some creative and innovative opportunities.
Just this year, the Parliaments of India and Uganda, in partnership with the International AIDS Vaccine Initiative (IAVI), held special two-day conferences for MPs and other key policy-makers to review the status of HIV/AIDS in their countries and the progress of research for a vaccine to prevent the disease. Experts from the scientific and research communities briefed attendees on HIV, vaccine trials and the impact of the epidemic on social and economic welfare. Journalists were invited to attend. The Asian Forum of Parliamentarians on Population and Development (AFPPD) is planning a similar conference for early 2003 in Thailand.
The need to communicate the many complex dimensions of HIV/AIDS itself, as well as that of preventive strategies to battle the epidemic to policy and opinion makers can hardly be minimised. Communication creates transparency, which in turn lends the credibility that is so important in combating sensitive public health issues like HIV/AIDS.
A telling illustration of this is the palpable change in public perceptions across India after the recent International Policymaker’s Conference in New Delhi, where the prime minister, leader of the opposition, several state chief ministers and a host of parliamentarians got together on a common platform to declare war on HIV/AIDS and advocated emerging technologies like preventive vaccines to fight the epidemic.
Some months later, an interactive session with key citizens of Pune greeted with enthusiasm a Phase I (safety) vaccine trial scheduled for next year. Interestingly, just a few years ago, a similar meeting in Pune had sparked ugly rumours of people in the city being used as ‘guinea pigs’ for a ‘dangerous’ vaccine trial. The rumours had been fuelled by stray reports in the local media, reports, which needless to say, were completely baseless. Clearly the communication strategy adopted at the May conference had made a fundamental difference in attitudes of people in Pune. Information and transparency replaced prejudice and misinformation.
Moreover, there is a need to feed the tremendous hunger among people for knowledge and information on public health issues, which are a matter of life and death. An IAVI team recently in the Andhra Pradesh capital, Hyderabad, in connection with a planned state interactive meeting on vaccines, was besieged with demands for facts and figures on vaccines and vaccine trials. There was widespread frustration about the dearth of information on HIV/AIDS and ways to prevent its spread.
Undoubtedly, the media has a crucial role in disseminating information about HIV/AIDS, particularly in flourishing democracies such as India, where the burgeoning print and electronic media enjoys both credibility and clout. Unfortunately, the media often tends to ignore burning issues such as HIV/AIDS or twists the facts in the interest of sensational news. This makes it all the more important for communication strategies on HIV/AIDS to include special media training programmes so that the right kind of facts and analyses are placed in the public domain.
For example, a number of organisations including IAVI, the Kaiser Family Foundation and the Medicines Research Council (MRC) in South Africa have ongoing training programmes for media. In a workshop format, newspaper, radio and television reporters learn, among other things, the science of HIV, how to research a story to assure balance and accuracy, the pros and cons of drug therapies and share best practices from their own experiences. Similar IAVI-sponsored workshops in Kenya and Uganda have resulted in a noticeable improvement in the frequency, accuracy and inclusiveness of reporting.
Assume it is the year 2008 and a vaccine to prevent HIV/AIDS has just been licensed by the U.S. Food and Drug Administration and by the appropriate regulatory agencies in several other countries. Manufacturing facilities to produce the needed multi-million doses a year operate at maximum capacity and world financial institutions are collaborating with individual governments to fund timely purchase and distribution throughout the developing world.
But also assume that efforts to diminish the stigma that surrounds HIV have fallen short and that a young woman asking to be vaccinated still may be labelled as ‘promiscuous’. While global efforts to increase the rates of childhood immunization have been successful, with an overall reduction in the number of deaths from vaccine-preventable diseases like measles, no country has made a concerted effort to develop an infrastructure to facilitate adult immunization.
Despite an increasing prevalence of the disease throughout sub-Saharan Africa, the average person still feels immune from risk. The media, focusing on the success of the vaccine research, fails to communicate the ongoing need for other preventions, including the use of condoms.
With one vaccine now on the market, other biotech companies and research institutes wind down their AIDS programmes, assuming the return-on-investment will be too limited for a ‘second generation’ vaccine. In fact, most experts today agree that the second round of vaccines will be significantly more effective and thus in greater demand than those that reach the market first. But no one has communicated this.
Just as information is power, similarly, the need for ‘repetition, repetition, repetition’ around important messages is key to insuring the durability of that power. Policy-makers, key opinion leaders, the media and the general public need to be told about HIV/AIDS – its causes, treatments and preventions – not once, but many times.
The AIDS epidemic is far from over. In too many countries, including Eastern Europe, it is just beginning. Communication is an obligation of those with critical information to share because everyone in every sector of society has the right to know about HIV/AIDS.