Patient Advocates Respond to the viewpoint on “The Parkinson Pandemic”

This post was originally posted on the WPC blog: link

PD advocates attending the World Parkinson Congress 2016 in Portland, Oregon. Left to right: Sara Riggare, David Jones, Jon Stamford, Andy McDowell, Reidar Saunes. Photo by Anders Leines.

The scientific journal JAMA neurology recently published a viewpoint titled “The Parkinson Pandemic – A Call to Action” 1authored by well-known and highly respected professors and movement disorder specialists Ray Dorsey, M.D. and Bastiaan Bloem, M.D., Ph.D. The article was received with great interest from different medical news sites, which quoted large parts of the original article.

The following is from: NeuroscienceNews.com

In their commentary, the authors point out that between 1990 and 2015, the prevalence of Parkinson’s more than doubled and it is estimated that 6.9 million people across the globe have the disease. By 2040, researchers believe that number of people with Parkinson’s will grow to 14.2 million as the population ages and the rate of growth will outpace Alzheimer’s. These estimates are likely conservative due to underreporting, misdiagnosis, and increasing life expectancy.

To combat this growing pandemic, the authors argue that the medical community should pursue the same strategies that, in 15 years, transformed HIV from an unknown and fatal illness into a highly treatable chronic condition.

“People with HIV infection simply demanded better treatments and successfully rallied for both awareness and new treatments, literally chaining themselves to the doors of pharmaceutical companies,” said Bloem. “Today, HIV has become a treatable, chronic disease. This upcoming increase in the number of Parkinson patients is striking and frankly worrisome. We feel it is urgent that people with Parkinson’s go to the pharmaceutical industry and policymakers alike, demanding immediate action to fight this enormous threat.”

The authors contend that the Parkinson’s community must come together and focus its activism in support of: developing a better understanding of the environmental, genetic, and behavioral causes and risk factors for Parkinson’s to help prevent its onset; increasing access to care – an estimated 40 percent of people with the disease in both the U.S. and Europe do not see a neurologist and the number is far greater in developing nations; advocating for increases in research funding for the disease; and lowering the cost of treatments – many patients in low-income countries do not have access to drugs that are both lifesaving and improve quality of life.

[…]

“For too long the Parkinson’s community has been too quiet on these issues,” said Dorsey. “Building on the AIDS community’s motto of ‘silence = death’, the Parkinson’s community should make their voices heard. The current and future burden of this debilitating disease depends upon their action.”

Dr. Jon Stamford presenting his book at the WPC 2016 Book Nook with Sara Riggare in the audience.

As patient advocates and researchers living with Parkinson’s disease we read the viewpoint with great interest. Access to the full article requires a subscription to the journal, which means that most people with PD will not be able to read it. We wanted to respond to the call to action that the authors made to the PD community and therefore submitted a reply to the journal. JAMA Neurology were however not interested in publishing our response which is why we now choose to discuss the matter in a more open forum. Below is the response we submitted to JAMA Neurology.

The call to the PD community to speak up is appreciated and as patient advocates as well as researchers living with the condition, we think the article is both timely and well argued.

 

When it comes to the silence of the PD community, the irony is not lost on us that this article is published behind a paywall, thus not allowing it to reach the intended audience. We strongly recommend always publishing open access, including viewpoints and opinion pieces but especially research reports. Patients cannot engage in research we are not aware of and few patients have access to publications behind paywalls.

Furthermore, the lack of action perceived by the authors can in part be explained by aspects of PD itself. One of the main effects of the condition, apart from the motor symptoms, which of course makes action physically more challenging, is the debilitating anhedonia and apathy.

The comparison with the work of the HIV/AIDS community is an interesting one and well worth building on. But where HIV/AIDS was a new and deadly disease, PD has been known for centuries as a slowly progressing disease mainly associated with the elderly. Possibly as a result of a highly politicized demographic, the cause and disease mechanisms for HIV/AIDS were identified in a short time, whereas the cause and disease mechanisms of PD have, except in the broader sense, eluded detection, perhaps reflecting the lack of urgency alluded to by the authors.

Nevertheless, we would argue that PD advocacy has made significant progress, despite these challenges. Notable examples include the work of Elizabeth “Eli” Pollard of the US-based World Parkinson Coalition (WPC) in bringing all stakeholders of the PD community together, including physicians, neuroscientists, a broad range of other health professionals, care partners, and people with PD. Pollard identifies the real successes of that effort as being: “(1) the involvement of people with Parkinson’s in research and educational agendas, (2) the evolution of interdisciplinary care, and (3) embracing self-care”2. We would encourage everyone involved in PD research, from basic science to clinical practice, to attend the WPC. It is likely to have an impact on the quality of the research being conducted 3 as well as improving the knowledge of important research in a wider community 4. This is patient advocacy at its most incisive, decisive and constructive.

Of course, advocacy is only of value if translated into action. An example of the results of PD advocacy is the innovative Linked Clinical Trials program designed for the repurposing of drugs 5. This model, which incidentally can be applied to a wide range of conditions, was developed to identify drugs developed for different conditions, that had potential interest for modifying the progression of PD. The program was spearheaded by the late Tom Isaacs, patient advocate and founder of the Cure Parkinson’s Trust. This is not idle theorizing but a practical and potent example of how patient advocacy can lead an international drug development program.

Sara Riggare and Dr. Bas Bloem

Too often the scientific community, as perhaps shown in the viewpoint by Dorsey and Bloem, sees the role of the patient advocate in terms of lobbying for increased research funding. Certainly that is part of the role of the patient advocate but, of significantly greater importance, and not discussed by the authors, is the influence of patient advocates on the research agenda. And this is an area where a valuable lesson has been learnt from HIV/AIDS advocacy – the advocate community expects to do more than simply rattle collecting tins. Increasingly, fundraising for research by the Parkinson’s community is linked to a desire to influence research. Put simply, advocates who raise money expect to have a say in how that money is spent. The old paternalistic model whereby the scientific community made those decisions alone no longer holds. And for this, we do have the HIV/AIDS community to thank.

PD advocacy has changed. Advocates are vocal, positive and – yes, let it be said – downright demanding. We are lions. Hear us roar.

 

References

Dorsey ER, Bloem BR. The Parkinson Pandemic—A Call to Action. JAMA Neurol. 2017. doi:10.1001/jamaneurol.2017.3299.

Pollard E “Eli.” Where we’ve gone “right” in the Parkinson’s community. Mov Disord. 2017:2016-2018. doi:10.1002/mds.27076.

Gardner M. World Parkinson Congress: bringing together the Parkinson’s community. Expert Rev Neurother. 2011;11(2):203-205. doi:10.1586/ern.10.188.

Utengen A, Rouholiman D, Gamble JG, et al. Patient Participation at Health Care Conferences: Engaged Patients Increase Information Flow, Expand Propagation, and Deepen Engagement in the Conversation of Tweets Compared to Physicians or Researchers. J Med Internet Res. 2017;19(8):e280. doi:10.2196/jmir.8049.

Brundin P, Barker RA, Conn PJ, et al. Linked clinical trials–the development of new clinical learning studies in Parkinson’s disease using screening of multiple prospective new treatments. J Parkinsons Dis. 2013;3(3):231-239. doi:10.3233/JPD-139000.


Sara Riggare, MSc, PhD candidate, served as an Ambassador and as faculty for the third World Parkinson Congress in Montreal, Canada and the fourth World Parkinson Congress in Portland, Oregon. Sara is currently a doctoral student at Karolinska and the topic of her research is “Personal observations as a tool for improvement in chronic disease”. She is an actively engaged patient with a vast network across the community and blogs at www.riggare.se.

Jon Stamford, BSc, PhD, DSc, is a retired gentleman neuroscientist. He served as an Ambassador for the third World Parkinson Congress and as faculty at the fourth. For 23 years he was a career academic with research interests focused on the brain dopamine systems, particularly in the context of Parkinson’s. He was diagnosed with Parkinson’s in 2006.  He is currently a freelance scientific consultant and member of the patients advocates group with Cure Parkinson’s Trust. He was also director and co-founder of Parkinson’s Movement, editor-in-chief of On The Move and co-founder of Parkinson’s Inside Out. He blogs at jonstamford.com and has written four books on his experiences of life as a neuroscientist with Parkinson’s.

Sara Riggare

I live in Stockholm, Sweden with hubby, 15 year old daughter and our two cats. I experienced the first symptoms of Parkinson’s (PD) in 1984, when I was 13 years old and now I combine my engineering skills with my patient experiences to help myself and others with chronic diseases. Currently, I am working to complete my doctoral education at Karolinska Institutet in the area of self-tracking for PD. I was an ambassador for the World Parkinson Congress (WPC) in 2013 and 2016 and am co-chairing the Patients Advocates Committee for WPC 2019. I am also an advisor to the conference Stanford Medicine X and a member of the British Medical Journal’s Patient Panel. Read more on my blog: www.riggare.se.

Leave a Reply