If the Democrats take over the US House next week, Colorado Congresswoman Diana DeGette looks forward to her fellow Democratic representatives Ed Perlmutter and Mark Udall joining her in the passage of the federally funded embryonic stem cell research bill. Both Perlmutter and Udall know first hand the potential of this research, with Perlmutter’s daughter suffering from epilepsy and Udall’s father dying from Parkinson’s Disease (PD).
We must elect Diana DeGette and the others supportive of the embryonic stem cell research bill because it provides the best hope for a cure for PD and other movement disorders. Why is this so important? Because even if you don’t currently have PD or know someone who has it, chances are great that in your lifetime you will be profoundly affected by this disease.
Currently, it is estimated that 1.5 million people in the US have PD, with 60,000 additional cases diagnosed each year. Because the average age of PD onset is 60, that number is destined to rise as the population continues to age. However, PD is not necessarily a disease of the elderly -- fully 10-15% of PD patients are diagnosed before age 40.
In my immediate family, seven people have been affected by PD – and it’s not a hereditary disease. I have PD and I was diagnosed in 1996 at the age of 46. My mother-in-law died from PD in June 2004. My mother has Lewy Body Dementia, a horrific combination of PD, Alzheimer’s and hallucinations. My husband’s aunt has PD, his brother has a tremor disorder and two of his neighbors from the idyllic neighborhood where he grew up died from PD.
Persons living with PD usually have tremors, shuffle, move stiffly, have difficulty with balance and frequently fall. After years of taking Sinemet, the gold standard in medication for PD, they develop dyskinesia or involuntary movements and flailing of the arms and legs. PD is chronic, progressive and its complications can be fatal.
Furthermore, the cost on society is enormous. According to the Agency for Healthcare Research and Quality, PD costs the US $26 billion a year in medical care, lost earnings of patients and caregivers, and compensation for lost earnings
Given this, you’d think there would be adequate funding for stem-cell and other research designed to prevent or treat PD. But that’s not the case. Research for PD is not funded at levels commensurate with other similar diseases.
Statistics from the National Institute of Health indicate that chronic liver disease and cirrhosis, the 12th leading cause of death, had an estimated funding of $408 million in 2006 for research while PD, the 14th leading cause of death, had an estimated funding of just $223 million during the same time period—which is 45% percent less than a disease that affects similar numbers of people. If DeGette is not elected, this situation will remain dire.
I believe the main reason PD research is not funded at higher levels is because PD is so widely misunderstood, even to those who suffer from it like me. I am held hostage by my medication, taking pills every three hours, four times a day. I never know if, when, and how much of my medication will kick in. As the insensitive comments made last week by Rush Limbaugh about Michael J. Fox illustrate, PD is also misunderstood by society at large.
But DeGette, Perlmutter and Udall understand how PD affects society, and what must be done to combat those effects. And what must be done is embryonic stem cell research.
Proponents of embryonic stem cells research believe that week-old embryos are not human beings and that destroying these embryos does not constitute killing. They also believe that lives of those from suffering from major diseases such as PD, are as valuable as lives of unborn embryos. They further propose that potential medical benefits of the research outweigh moral concerns of the embryo. Proponents conclude that through the process of in vitro fertilization, many fertilized human embryos are banked or destroyed. Instead, they should be available for research and put to good use to save and reduce suffering in existing human life. Proponents believe than 100 million Americans suffer from diseases that eventually may be treated or even cured through embryonic stem cell therapy.
Diana DeGette understands this. Ed Perlmutter understands this. And so does Mark Udall. That’s why they must be reelected next week. Your vote could be the one that makes a difference in finding a cure for PD.
Separate Sidebar: “Shaken” a new documentary about Parkinson’s Disease (PD), was produced, written and directed by Boulder-based Deborah Fryer of Lila Films (www.lilafilms.com). It is a film about Paul Schroder who was diagnosed with PD shortly after graduating from college. After living with the disease for ten years and becoming decreasingly mobile and increasingly debilitated, Paul decided that radical brain surgery was preferable to lying on the couch like a vegetable for the rest of his life. The results are mysterious, miraculous and bittersweet. The two screenings at the Starz Denver Film Festival will be held on Monday, November 13 at 6:30 PM and Sunday, November 19, at 4:00 PM. Tickets can be purchased online at www.denverfilm.org or in person at the Starz Film Center Box Office. Both screenings are expected to sell out, so please buy your tickets early.