Parkinson's Movement
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Advocacy History & Lessons from the HIV/AIDS community

An excellent article on 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."

3 Replies

"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."

This sentence speaks to me, and seems to be exactly what Parkinsons Movement is about. But we need to start identifying the best ways to achieve this, and how to harness the potential of people in medicine, science and industry who think on the same lines, but are in a similar place to us, not 100% sure of how to get things moving. Perhaps a good way to do this would be to identify both obstacles and paths to making it happen. It is possible to see that there is a will for a more participatory process, so like speeding up the pipeline for treatments, a parallel process is needed to bring the patient into the picture. There a lots of indications that our orgs are much more open to this, but have to say that the patient-led orgs are leading the way ;)


The HIV advocacy movement has been successful because they will not take no for an answer. There does seem to be a shift in whom people look to for help (national organizations which have quality programs) but let go of the bigger picture of keeping the pressure on the research community to investigate what people are interested in. There are many among us in the PD community that can speak to the science and many more that can use advocacy to positively-pressure groups, organizations, pharma, government, etc. to work together to find those much-needed answers we seek. A multi-pronged approach is needed with a patient-led organization having a place at the table, not only being heard but listened to. "If you want to be incrementally better: be competitive. If you want to be exponentially better: be cooperative."


Wouldn't it be wonderful to emulate what the HIV advocacy movement have done and make it a reality in PD, through shared voice, increased pressure.....and encouragement.


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