Tagged: patient advocacy

ACT UP: Advocacy is Critical To Undoing Parkinson’s

 

In March of 2017, activists all over the world celebrated the 30th anniversary of ACT UP.

ACT UP was an international direct action advocacy group that was set up to help people with Human immunodeficiency virus (HIV) infections and acquired immune deficiency syndrome (AIDS), and more importantly to encourage legislation/policy, medical research and treatment for this devastating.

Some people might say that there have been few advocacy efforts for a medical condition that have had as much impact, or had such a lasting legacy. Others, on the other hand, would suggest that a collective AIDS advocacy effort and a paralysing fear of the deadly condition at the time stimulated most of the action action that followed. Regardless of which opinion is correct, an analysis of the AIDS advocacy makes interesting food for thought.

In today’s post, we will have look at what ACT UP did, what was the result of the overall AIDS advocacy movement, and we will discuss what the Parkinson’s (and neurodegenerative) community could learn from it.

 


Every week, the U.S. Centers for Disease Control and Prevention (CDC) publishes the Morbidity and Mortality Weekly Report (or MMWR).

It provides public health information and recommendations based on information collected by the CDC from all of the various state health departments. The material published in each report is provided as a public service and may be reprinted and used without permission.

On the 5th June 1981, the CDC published a MMWR, describing five cases of a rare lung infection (called Pneumocystis carinii pneumonia). This was an extremely rare, but opportunistic infection – it generally occurred in people with very compromised immune systems.

All of the five cases were young (29-36 years of age), and had previously been healthy, homosexual men living in the Los Angeles area. All of the men had additional unusual infections, which suggested to doctors that their immune systems were not working properly.

Two of the men had already died by the time the report is published.

One month later, on the 3rd July (1981), a second MMWR was published. This one mentioned further cases of Pneumocystis carinii pneumonia and cited 26 cases of a rare form of cancer known as Kaposi’s sarcoma, which is caused by a viral infection:

These two MMWRs were the first official reports mentioning what would go on to become known as the AIDS epidemic – a devastating, ongoing global health issue that has thus far claimed 35+ million lives.

It was also the very beginning of what would be an amazing story of patient advocacy. The one that would become the template for many future efforts. Part of that advocacy effort was called “ACT UP”, and in today’s post we will discuss what the movement was and how they achieved some amazing accomplishments.

But before we get to that, let’s start at the beginning:

What exactly is AIDS?

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2017 – Year in Review: A good vintage

At the end of each year, it is a useful practise to review the triumphs (and failures) of the past 12 months. It is an exercise of putting everything into perspective. 

2017 has been an incredible year for Parkinson’s research.

And while I appreciate that statements like that will not bring much comfort to those living with the condition, it is still important to consider and appreciate what has been achieved over the last 12 months.

In this post, we will try to provide a summary of the Parkinson’s-related research that has taken place in 2017 (Be warned: this is a VERY long post!)


The number of research reports and clinical trial studies per year since 1817

As everyone in the Parkinson’s community is aware, in 2017 we were observing the 200th anniversary of the first description of the condition by James Parkinson (1817). But what a lot of people fail to appreciate is how little research was actually done on the condition during the first 180 years of that period.

The graphs above highlight the number of Parkinson’s-related research reports published (top graph) and the number of clinical study reports published (bottom graph) during each of the last 200 years (according to the online research search engine Pubmed – as determined by searching for the term “Parkinson’s“).

PLEASE NOTE, however, that of the approximately 97,000 “Parkinson’s“-related research reports published during the last 200 years, just under 74,000 of them have been published in the last 20 years.

That means that 3/4 of all the published research on Parkinson’s has been conducted in just the last 2 decades.

And a huge chunk of that (almost 10% – 7321 publications) has been done in 2017 only.

So what happened in 2017? Continue reading