How Patient Advocacy Changed the World
Posted on Fri, Sep 18, 2009 @ 05:58 PM
As a healthcare communications pro with experience in many therapeutic areas, I 
am always interested in how we can use our skills to improve patient's lives. In this information age, communication is power. I am excited about how, as strategic counselors, our ability to improve dissemination of information can influence companies and institutions to bring about improvements in patient care.
HIV/AIDS is a perfect example of how communications can change behavior and facilitate change. In just 25 years, what was once a diagnosis that meant almost certain death has now become for many a chronic condition that can be managed through a combination of medicines. In the history of medicine, this level of progress is unprecedented.
I don’t want to minimize the continued global threat of HIV/AIDS in many parts of the world, including inner cities and the developing world. This is an ongoing issue that demands sustained effort if progress is to be made in these areas.
But amazing progress has been made in understanding the disease and treating it, to the point where today many HIV positive people will never develop AIDS and will not end up dying of the disease.
How did this amazing progress happen in HIV/AIDS in less than 25 years, while in other areas like cancer, for example, certain diagnoses continue to mean that the patient will almost certainly die of the disease?
I’ve often thought about this, and there a number of possible answers depending upon who you ask. But I strongly believe that three key factors certainly helped speed progress in treating HIV/AIDS far faster than anything seen before.
1) A new age of patient advocacy
AIDS activists rewrote the rules on how to get everybody’s attention and how to motivate governments, regulatory bodies, NGOs and the pharmaceutical industry. Early AIDS activists were often militant, sometimes did outrageous things, and caused great upheaval in government and corporate circles. But by forging grass-roots advocacy organizations, and using information technology, especially the Internet, they got results.
2) Changes in the regulatory environment
Perhaps one of the most historic achievements of the AIDS activists was the major change in the worldwide regulatory environment. In 1992, the FDA introduced an accelerated approval process for HIV medicines in response to pressure from AIDS activists. HIV/AIDS activists also ushered in expanded access and compassionate use programs in the late 1980s. These programs offer patients with life threatening diseases access to experimental drugs before they receive regulatory approval.
3) The global communications revolution
We owe a great debt of gratitude to the early HIV/AIDS advocacy pioneers. They created a template for disease activism that represents best practice today in diseases such as cancer, diabetes and Alzheimer’s. The Internet has given birth to countless new media channels and a media environment that is nearly infinite in depth.
As healthcare communicators, we have the privilege of helping companies and organizations determine the best combination of media tools. The application of these new media tools, if orchestrated appropriately, can help improve the lives of millions of patients, families and caregivers.