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The Voice from Washington

Interview with Rep. Lane Evans

At the end of 2006, Congressman Lane Evans (D-IL) will retire from public office after 23 years of service.Congressman Evans, who has Parkinson's disease, has played a key role in leading legislative initiatives on Parkinson's research.In October, he graciously agreed to be interviewed by the staff at the Parkinson's Action Network (PAN). 

Q: How has federal PD funding changed during your time on the Hill?

In the mid-1990s when I became involved in Parkinson's-related issues, funding appropriated to the National Institutes of Health (NIH) for research on HIV/ AIDS and cancer was much higher per capita than that of Parkinson's (an average of $1,000 and $260, respectively, was spent each year on each HIV/AIDS and cancer patient, compared to just $26 on each Parkinson's patient).At this time, Parkinson's was not even on the radar screen for Members of Congress or the President.So, it is undeniable that there has been tremendous progress during my tenure in Congress - both in the dollars allocated and in awareness among policymakers about neurodegenerative diseases.

In 1997, Congress passed the Morris K. Udall Parkinson's Research and Education Act, which authorized $100 million to the NIH for Parkinson's research and also established, in the Department of Defense, the Neurotoxin Exposure Treatment Research Program (NETRP) to identify the causes, diagnosis and treatments of neurological diseases.

We were successful in securing $26.5 million for NETRP in fiscal year 2007, which is a $3 million increase above last year's funding level.

Q: Besides introducing legislation, what are the meaningful contributions you have made in Congress?

Five years ago, I sat down with Tony Principi, then Secretary of the Department of Veterans Affairs, and discussed ways we could use the agency to provide comprehensive and state-of-the-art clinical care for veterans.The result was the designation and special funding of six major VA research facilities as Parkinson's Disease Research Education and Clinical Centers (PADRECCs).In addition to providing clinical care to veterans with Parkinson's disease, these centers would study the mechanisms of neurodegeneration, the epidemiology of Parkinson's, novel treatments and non-motor features of the disease.

I have also worked closely with the Congressional Working Group on Parkinson's Disease, of which I am a founding member, to increase funding for NETRP.

Q: What progress have you seen in finding better treatments and a cure for PD?

The greatest progress has come from targeted research like that conducted at the PADRECCs. Deep brain stimulation is an example of one of the technologically advanced and effective treatments in which PADRECCs have played an important role.
Unfortunately, most of the treatments for Parkinson's work only by "masking" symptoms for a period of time.They do not slow the progress of cell death and eventually lose their effectiveness.

Because of such factors as Congress's inability to fully fund Parkinson's research centers, poor accounting of appropriated monies and the success of efforts to halt federal funding of stem-cell research, I do not believe great progress has been made toward finding a cure - despite the fact that Parkinson's is considered by scientists to be the most curable of the neurodegenerative diseases, and some have claimed that a cure could be found in 10 years.In addition, what we learn from curing PD will lead to cures for other neurodegenerative diseases.

Q: Have you seen any change in awareness on the Hill about Parkinson's and the number of people who are affected?

We saw the dramatic face of Parkinson's and its debilitating affects when Muhammad Ali was diagnosed in the early 1980s.As other public figures such as Michael J. Fox and Janet Reno have come forward with the disease, awareness has grown further.In terms of the culture on the Hill, I think it is becoming clearer among Members of Congress that one million Americans live with PD.We have seen our colleagues Mo Udall, Joe McDade and Joe Skeen struggle with the disease.And the Congressional Working Group on Parkinson's Disease has grown from 10 founding members in 1997 to 80 members today. 

Q: What are some of the crucial steps we should be taking to find treatments and a cure for Parkinson's?

First, Congress and the medical research community need to commit to finding a cure for Parkinson's in 10 years.To achieve this goal, we need targeted and aggressive research, as well as better accounting to ensure that PD funding is being spent in the focused manner that the law requires.

Finally, it is important that Congress continue to work with PAN, PDF and other advocacy groups to bring greater attention to Parkinson's and educate the public about the disease so patients can receive accurate diagnoses and find the support, help and medical care they need.

Q: How has having Parkinson's changed your perspective about the role of a Member of Congress?

Having Parkinson's has made me a more effective Congressman because it has given me a better understanding of the difficulties and challenges that people who have health problems and their families face every day.Additionally, this disease has helped me to fully appreciate the contributions of Americans who have physical or mental limitations.

Congressman Evans has been a true champion of Parkinson's issues on Capitol Hill and a great friend to the Parkinson's community.On behalf of the entire Parkinson's community, we thank him for his dedicated service and wish him well.