HYPE?
Media portrayal:
HOPE?
Scientific interpretation:

Leading clinicians outline 4 strategic steps to tackling Parkinson’s worldwide

Original article: Dorsey, ER, Bloem, BR. January 1, 2018. The Parkinson pandemic – a call to action: JAMA Neurology, 75(1), 9-10.

The takeaway

The number of people living with Parkinson’s will have doubled by 2040 to at least 13 million. This call to action identifies four key areas for the Parkinson’s community: 1) preventing Parkinson’s onset through modifiable lifestyle factors, 2) increasing access to care, 3) increasing research funding nationally, 4) making new treatments affordable to many.

Why is it important?

The piece identifies a need for activism by the Parkinson’s community, which has been relatively silent until now, and outlines four strategic areas where voices need to be heard and efforts focused.

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IMPACT

  • Novelty 60%
  • Proximity 90%
  • Deliverability 90%

Impact Opinion

The authors highlight an anticipated, dramatic growth in number of people with Parkinson’s. It is time for funding agencies and policymakers to recognize this and direct more resources to the discovery of new treatments and delivery of better care.

Background

Parkinson’s is now held to be the fastest growing neurological disorder. By conservative estimates, 12.9 million people will be affected by Parkinson’s by 2040, as the world’s population and life expectancy increase, while smoking declines. Although Parkinson’s is not an infectious disease, these growing numbers can be paralleled to those seen in the HIV/AIDS pandemic. What can be learned from the successful efforts of HIV/AIDS activism in transforming an unknown fatal illness to a treatable condition?

The details

The authors identify four areas in which the Parkinson’s community should become vocal and active.

1.Preventing onset: To combat HIV, the community changed behaviour. Similarly, although the exact cause of PD is unknown, behaviours such as exercise and possibly diet modification as well as reducing exposure to pesticides can be actively promoted.

2.Increasing access to specialist care: in the US and Europe, more than 40% of people with Parkinson’s do not see a neurologist for their condition. In less wealthy nations, many are never diagnosed, often due to lack of specialists. This was an even starker problem for those affected by HIV.

3.Increasing research funding: In the US, Parkinson’s research receives less national funding per patient than many other areas, and campaigning should address this. Research funding into HIV began by the community itself, until intense advocacy ramped up government and industry research which identified the cause and treatments for the condition.

4. Increasing affordable treatments for all: 40% of all countries, and 80% of developing countries do not have access to PD medications, including levodopa. Activism in the HIV community was important in increasing access to lifesaving medications.

Related work

Pringsheim, T., Jette, N., Frolkis, A., Steeves, T.D.L. (2014). The prevalence of Parkinson’s disease: a systematic review and meta-analysis. Mov Disord, 29(13): 1583-1590.

Link to NIH research funding by condition and disease categories https://report.nih.gov/categorical_spending.aspx

Original article: Dorsey, ER, Bloem, BR. January 1, 2018. The Parkinson pandemic – a call to action: JAMA Neurology, 75(1), 9-10.
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