The following are Ms. Wittekind’s remarks on living with Parkinson’s disease and advocating for better treatments and a cure, expressed at the briefing.

I’m Paula Wittekind, a Parkinson’s patient, diagnosed in 1992 at age 42, with symptoms first appearing when I was in my 30s. I’ve been diagnosed for 15 years, was a teacher, married, with two young daughters aged 7 and 9 at the time. Robbed of the teaching career after hiding the illness for 8 years, I had to quit in 2000. One of the lucky ones; I had medical insurance, teacher retirement, long term disability, and eventually social security and Medicare. 

One of the most striking differences between when I was first diagnosed and the present, as with everything else in the world, is the invention and use of the Internet.  I went online shortly before retiring in 2000, found a PD support chat, and have been interacting with friends and volunteers with PD ever since.  They are mostly all my age or younger, meaning when we met online, we were primarily in our 40s and some in their 30s.

 Now in our 50s, we are closer to the average age of onset and expect many more people in my age group to develop Parkinson’s. Most feel that the numbers quoted – a million to a million and a half - are low; that in reality there are many more cases.

Parkinson’s disease has, in many ways, become more of an unknown as research progresses.  Current thought isn’t even sure it begins as a neurological illness.  It is now being theorized that by the time we see the neurologist with movement disorders,  [that include tremors, stiffness and muscle rigidity, gait problems, lack of arm swing, slow movement, poor handwriting, mask face]  we have long had the illness – which could be a disease of the entire Central Nervous System.  Cases vary – it strikes people in different ways.  It can be very difficult to diagnose - years in some cases. It is a disease of the body and mind, remaining a mystery whose cause may need to be unraveled for decades.

This all adds up to a lot of money being spent for all aspects of this illness.  PD is:

· Expensive to diagnose because it is difficult to diagnose.  Although scientists are working hard at it and getting closer, we have no biomarker for diagnosis, such as a blood test. It is starting to look more genetically involved than was formerly thought. There are SPECT scans, PET scans, but these are too costly and not available everywhere.  PD remains mostly a clinically diagnosed illness, based on symptoms, which can vary, and based on whether or not the patient responds to the standard medication for PD, L-Dopa, or a Dopamine agonist..

· Expensive to treat because PD patients require many different medications for various symptoms and secondary conditions like depression and sleep disorders, and then eventually surgery.  My personal monthly tab for medication is approx. 800 dollars a month.

· Expensive to society (especially with young onset) because people are forced to give up their jobs.  This leaves many without medical insurance or retirement income.

· Expensive for which to develop treatments and to run clinical trials.

· Expensive because patients eventually cannot care for themselves.  Although with medication, people with Parkinson’s can usually function for a number of years, that number varies and can depend on cognitive deficits that are a part if the illness, causing memory and concentration difficulties.  Many of us quit our jobs when we realize we can no longer multi-task or focus well to complete tasks.  I stopped teaching, when I realized how much time I was spending just shifting papers around and then losing one.

Typically, right after diagnosis sinks in, we tend to think we have a shot at a cure before it’s too late.  But, if look at the average quote nowadays, it’s really more like 15 years or more for a treatment to go through all phases of clinical trials and the FDA.  If it makes it through to the market, it takes more time to get it covered by insurance and Medicare.    This is another battle to fight and costs lives.

The promise of innovative therapies provides hope for everyone and will change the face of medicine; can you imagine referring to a treatment as genetic delivery of information instead of taking a pill?   However, similar in nature to the ever changing computer and cell phone technologies, information becomes outdated quickly.  This can work against immediate treatment development as potential treatments are abandoned for more high tech delivery systems, such as viruses and stem cells.

When events happen like the massive drug Vioxx recall, or the recent tragic death of a young woman in a gene therapy trial for arthritis, the entire industry gets the jitters.  Many in the PD community, including quite a few medical researchers, believe that in at least one incidence the Vioxx event may have contributed to a premature decision to stop human research completely on the most promising Parkinson treatment to date – a treatment known as pump infused GDNF. This decision caused great dismay for many of the trial participants, and, right or wrong, left a few generations of advancing Parkinson’s patients with little on the horizon in terms of neuroregenerative treatments, or treatments that cause re-growth of the cells that no longer function in Parkinson’s disease.  And so, we are still dealing with treatment of symptoms, not correcting the disease.

Time is not neutral to a person with chronic illness. The medical powers that be, although dedicated to solving disease, are lacking the necessary sense of urgency for solutions. Patients, on the other hand, because of the Internet, are very much aware of the potential solutions, and have developed a lack of trust in the pharma industry and its interactions with medical research communities.  The time span that it takes a medical researcher to complete a study can be the difference between life and death to a PD patient.  If our lives are to be in the hands of a biotech company, then it behooves us to demand that more time be spent on the patient, not just the patents.   Patient groups like the Parkinson Pipeline Project are monitoring treatments in development themselves and working to change clinical trial protocol to become more patient centered.  Currently a collaborative group representing all stakeholders in the clinical trial process is writing a Bill of Rights for Research Participants that can hopefully be used with multiple illnesses and conditions.  The FDA now has Parkinson’s disease consultants, again due to patients trying to emphasize the urgency needed to move innovative treatments through the pipeline.

In terms of numbers and stats, PD may remain elusive.  There are a few registries, but many young onset don’t know they have it, are going from doctor to doctor to get a diagnosis, do not tell anyone when they first get it, and think there may be a cure in time for them.  This is all in addition to the regular population of Parkinson’s patients –among those over age 60 in which there is a much higher incidence than young onset.

They say a person is diagnosed with Parkinson’s every nine minutes.  It is going to be a major factor in health care spending until it is better treated or cured.