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The distance travelled

Thirty Years of HIV – Lessons for the pharmaceutical industry in testing times

Footsteps moving away in a sandy landscapeMany of the most measurable changes in HIV have been down to medicine. Who would've predicted that within a year of the virus being isolated the US Food and Drug Administration (FDA) would receive its first submission for a new AIDS drug; that within a decade three drugs would be available and inside a generation 20 effective treatments developed? I don't think anyone who was scared of being infected in the 1980s would have believed that, within a generation, people would have access to simple, effective and well-tolerated medicines; that – with treatment – people living with HIV would enjoy near-normal life expectancies, or that effective treatment could prevent the virus from being passed on. 

The advent of HIV did not only affect lives, it fundamentally changed our industry and forced profound changes in the way we operate. Many of the standard operating principles that we now take for granted might not have existed without the onset of HIV.

The advent of HIV did not only affect lives, it fundamentally changed our industry and forced profound changes in the way we operate

The beginning
In the summer of 1981 the US Center for Disease Control (CDC) reported that five young, gay men in Los Angeles had a form of pneumonia that would only usually appear in someone whose immune system had collapsed. A month later, the same medical bulletin reported that 26 young gay men had been diagnosed with an aggressive form of a skin malignancy called Kaposi's sarcoma. By the end of 1981 another 70 cases of Kaposi's sarcoma and Pneumocystis pneumonia (PCP) had been diagnosed, 150 adults and nine children had died. Back then, there were no drugs to treat the disease. 

Although no-one realised it at the time, these were the first stirrings of the HIV epidemic, which would sweep the world and change everything. It was a terminal illness with no hope of a cure. Death came quickly to those infected, but the dying was horrific. The public was scared, but so too were healthcare professionals and politicians. People who had been infected were almost inevitably isolated, and fears of the disease spreading continued to fester.  

Changing perceptions
Seemingly overnight HIV and AIDS had become a global phenomenon. It affected almost everyone in one way or another, from giving blood or going to the dentist, to sexual behaviour and condom use. In the minds of the general populace, AIDS was associated with words such as "incurable" and "terminal". The media played a key part in promulgating the fear. It became apparent that drastic action was needed, and someone needed to take the lead. A few rose to the challenge and it was thanks to the efforts of brave individuals such as Lord Fowler, then Minister of Health & Social Services in the UK, that significant strides were made.

Most UK residents will recall the "Don't Die of Ignorance" pamphlet that came through the letterbox in every home. While not everybody supported the campaign, rising condom use and changes in sexual behaviour in the UK were proof of its impact on the general public.

Red RibbonThe beginning of wider stakeholder engagement
Almost as soon as people began to die, their friends took action and began setting up groups to campaign for change. One such group, formed in the UK by friends of Terrence Higgins, was among the first to routinely work alongside physicians. Doctors and campaigners together founded one of the first expert communities, which – strong through connection – was able to work successfully across sectors. They embraced big-name celebrities and novel activist techniques to get the attention of governments the world over. It was thanks to such efforts that the iconic Red Ribbon, which had been developed by the New York HIV community, transferred to Hollywood and became a global symbol of support.

Synonymous with the fight against AIDS, the Red Ribbon also came to represent World AIDS Day, one of the first international observance days dedicated to a single disease. The idea of an icon to show solidarity and support was soon to be adopted by other disease areas too. 

Change in the industry
There is no doubt that the activities of the AIDS community focussed our minds on HIV and changed our behaviour. It challenged our prejudices and law, and brought public attention to the changes that needed to take place, many of which were in the pharmaceutical industry. 

Although in the beginning the sector had been quick to focus on the disease from a scientific perspective, it had been poor in communicating its intent. Campaigners grew weary of waiting for a solution and pressured both pharmaceutical companies and the FDA to bring experimental HIV treatments into use faster. When medicines were approved, the community thought that prices were too high and wanted a greater say in the development and delivery of medicines.

The 1983 Denver Principles from the Advisory Committee of the People with AIDS set out its terms, in particular that people living with HIV should be involved at every level of decision making and that no decision about them should be made without them. In response, one company, Burroughs Wellcome, set up a group to enable greater dialogue with patients on clinical development and global access. It's a sign of the considerable strides made that, thirty years on, the community works closely with industry to find new and better ways to tackle the disease. Community advisory committees like European Community Advisory Board (ECAB) and the UK Community Advisory Board (UK-CAB) now provide expert input to many pharmaceutical companies and the same model has been adopted in many therapeutic areas. Meetings are challenging and companies take them very seriously. 

Back in the 1980s, however, the idea of community interaction was new and the industry was uncertain about how to deal with, not only its demands, but also its way of working. Campaigners questioned industry's positions on HIV in developing countries and pricing around the world. At first much of the industry response was sluggish. We didn't quite understand the influence of the HIV community or the global support it had galvanised. It called repeatedly for expanded access to treatments in developing countries, but we were slow to respond.

The South Africa case also led to a sea change in the way the sector saw itself

Under intense pressure from activists, politicians tried to take action by authorising generic companies to manufacture HIV medicine. Entrenched in our old ways, more than 40 pharmaceutical companies responded by suing the Republic of South Africa. After a period of protracted criticism the legal action was withdrawn, but the damage to reputation was done and the perception of industry in the eyes of the public fell to an all-time and seemingly irreversible low.

The South Africa case also led to a sea change in the way the sector saw itself. Since then most innovative pharmaceutical companies have provided sustainable global access programmes to help people get treated in the poorest countries. Unimaginable thirty years ago, most companies now collaborate with not-for-profit organisations like 'The Access to Medicines Foundation' to measure and compare their efforts against other pharmaceutical companies. 

Transparency in action is another promising sign of the sector's distance travelled.

The importance of advocacy
The HIV community stands out as a leader in global health advocacy. Over the last thirty years it has managed to systematically raise public expectations of healthcare and our industry. When companies eventually started listening to HIV campaigners and responding, it led to campaigns, collaborations, awareness initiatives and joint working agreements that instilled a new way of working towards improving the quality of healthcare and driving efficiencies in healthcare spending.

Expert communities have led to the development of exemplary ethical codes to guide relations between industry and patient groups, pushing industry's conduct to the highest levels of integrity. Communities have joined industry-supported partnerships designed to improve quality and outcomes in many areas and on many levels, from endorsing educational materials to collaborating on service provision. This engagement with expert communities has given the industry a deeper understanding of the world it inhabits, lifting it from one predominantly focussed on specialists and academics to one that is engaged with a diverse and expert community.  

Timeline of HIV drug discovery pipeline over past 30 years - alternative link

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What does the future hold?
Back in the 1980s, there was widespread worry that AIDS would spread and that, without treatment, we would be powerless to respond. But we did respond, and helped the community to change the course of HIV; somehow changing our own course along the way. The future now looks promising for HIV treatment. New medicines are in the pipeline and there is sustained research focus on the development of a vaccine.

Whatever happens we must not forget the valuable lessons we have learned as we steel ourselves for the road ahead. 

However, within the wider context, western austerity measures are being imposed upon us. Government spending on healthcare will come under serious pressure; more than enough to test the tolerance of even the most robust business plans. When things get tough it could be tempting for industry decision makers to re-evaluate their priorities and forget what we learned from HIV and AIDS.

If 30 years of the virus tells us anything, it is that we must engage with expert communities, not in some ad-hoc, half-hearted fashion, but as a matter of routine. It tells us to recognise community engagement as a critical component of the business model, continuously driving insight, building expertise and securing crucial partnerships. It tells us that to be successful in the future the term "access" will be more than a performance measure in big 5 country business plans, but an important global expectation. 

If industry continues to engage its respective expert communities, companies will be better placed to maintain and – if need be – defend their positions in difficult economic conditions. 

In the face of public sector cuts and new economic realities, I remind you of the immortal words of legendary actress, businesswoman, and fearless AIDS activist Elizabeth Taylor: "Now is the time for guts and guile". This is not a time to retrench and go back to the old isolated practices that characterised the sector for decades. Whatever happens we must not forget the valuable lessons we have learned as we steel ourselves for the road ahead. 

The Author
Rob Walton is Managing Partner at Wisper Public Affairs, a member of the iS Health Group of companies. 


Footnote: It is estimated that 30 million people have died around the world and another 33.5 million people are living with the virus. 

18th July 2011


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