An excellent article on fastercures.org about the HIV advocacy movement. A link to the entire document is below:
Here is one quote:
"Over the past few decades, organizations have focused energy on raising money, funding research, building internal scientific expertise — all things that have helped to accelerate the pace of research in many areas. But where the backsliding has occurred is having the actual patient seated at the table with scientists, policy makers, private industry, and regulators pushing for specific changes and demanding accountability.We have reverted back to the old paradigm, but instead of patients deferring to doctors and scientists, they now defer to the organizations and scientists representing their interests. The gold standard should be to have both internal scientific expertise and a group of patients who can speak both to the science AND the urgency needed to make change. It will be a commitment for organizations to devote the human and financial resources needed to train their advocates. That undertaking, however,is essential to make real change occur."