Post written by Dr. Serena Hung
Have you heard about GINA recently?
GINA is not a person. It is the acronym for Genetic Information Nondiscrimation Act that was signed into law in May 2008. It has created a lot of excitement in the medical community. In my practice, the most affected group would be the patients with a family history of Huntington’s disease. As you may or may not know, the son or daughter of a patient with Huntington’s disease has a 50 percent chance of inheriting the disease. Because of the high chance of getting Huntington’s disease, there is a chance of discrimination based on family history. Some people choose to get tested for the gene for Huntington’s disease and for those who test positive for the gene, even though they may not have any symptoms of the disease at the time, may also face discrimination.
Are you familiar with the American with Disabilities Act? GINA has certain similarities to it, especially in the proposed penalties for violations. GINA stipulates that no one should be discriminated against based on genetic information or family history. No one should be denied health insurance because of genetic information or family history, and may go as far as saying people with abnormal genes or a positive family history for genetic diseases should not be charged a higher health insurance premium. Also, employers will not be allowed to obtain information about family history. (It is each individual’s prerogative to disclose information to his or her employer, but he or she should not be required to do so.)
Note that this act does not cover other kinds of insurance such as life insurance, disability insurance or long-term care insurance. Insurance companies still have the right to deny coverage in those instances. However, to a lot of people, not having to fear that they will lose their health coverage is a major breakthrough. In fact, in one of the studies done by the Huntington Study Group, it was found that in the United States, people at risk for Huntington’s disease frequently ask that their genetic testing be done separately from their usual health institution for fear that this information will be accidentally disclosed. This is not the case at all in Canada where all Canadian citizens and legal residents have universal coverage and no one is ever denied health care. GINA offers some protection against the loss of health coverage. The people who fought for GINA really wanted the coverage to go farther, but at least this is a first step.
Where does this go from here? The section of the law relating to health coverage generally will take effect between May 22, 2009, and May 21, 2010. The sections relating to employment will take effect on November 21, 2009. Note that in many states, there are already provisions against genetic discrimination, but the levels of protection vary widely. All companies that are subject to GINA must, at a minimum, comply with all applicable GINA requirements, but may also need to comply with more protective state laws. Also note that GINA doesn’t cover companies with fewer than 15 employees.
For those of you who don’t have a family history of Huntington’s disease, there are other diseases that are covered by GINA. For example, people with a family history of breast cancer, familial polyposis, which carries a high risk of colon cancer, and mitochondrial diseases such as MELAS are all covered under GINA.
For more information, you can go to: http://www.genome.gov/24519851
||The following is feedback received for this blog:|
Looks like the co-founder of Google, Mr. Sergey Brin, is interested in Parkinson's disease funding research too !
- Gaurav Parikh
Posted 3:34 PM
Driving and Parkinson's: When is it Time?
Post written by Bradley Hiner, MD
When thinking of driving restrictions for patients with Parkinson’s, I am reminded of the old bumper sticker put out by gun-rights advocates. You remember the one, "You can have my gun when you pry it from my cold dead fingers!” Just substitute “car keys” for gun, and you get the idea.
Let’s face it: We are a car-oriented society. We are not the Dutch, where there are more bicycles than cars; nor the French/Japanese/fill in the blank — where mass transit is so readily available and good. Americans love their cars. And one of the toughest tasks faced by the neurologist is the heart-to-heart talk on giving it up.
Studies have shown that even with normal aging, we all lose some of our motor capabilities. Reaction time, strength, coordination, maneuvering ability are all known to be affected by aging. Compound that with the decrements imposed by Parkinson’s, and as I tell patients, “at some point you have to think about giving it up.”
A study published last August in the Journal of Neurology, Neurosurgery and Psychiatry, found that the duration of having PD directly correlated with driving safety as shown by this graph:
Bear in mind that on this scale, a score of 9-10 is good-excellent, 6-8 average, 4-5 poor, and 1-3 is, well, “you better park it right now.” Most concerning was the discrepancy between the examiner’s assessment (not good) and how the driver thought he/she had done (“I’ve driven for 50 years, and I’m a very good driver!”)
We are very fortunate to have certified driver’s assessment available through our Parkinson’s and Movement Disorders Program. Bill Reinhardt, Occupational Therapist tells me:
“We look at the functional components of driving, including: alternating attention, problem solving, visual spatial skills, upper and lower extremity motor skills including ROM (range of motion), strength and proprioception (position sense), and reaction time. Most important, we observe and assess any red flags that may impair driving safety. Currently, I believe that all persons with any neurological condition, especially those of a progressive nature, should be assessed at least yearly to assess their safety.”
I encourage anyone with PD to consider having this evaluation, if nothing else than for peace of mind. We want to avoid at all costs having one of those terrible accidents occur that we read about from time to time wherein a senior citizen really shouldn’t have been behind the wheel.
Posted 9:18 AM
The Importance of Research
Post Written by Serena Hung, MD,
Before I launch into my post about research, I wanted to acknowledge that April is national Parkinson's Awareness Month. I think a good summation of all of our efforts was put forth by Nevada Sen. Harry Reid in a statement: "We must build on our commitment to accelerate and increase federal support for Parkinson's research so that we can find a cure for this disease and end the hardships for the more than one million Americans who suffer from this disease and for their families." To read the full statement and for a great resource of information, visit www.parkinson.org
Now, about research ...
Mr. B is a patient who I recently saw for the first time for Parkinson’s disease (PD). After confirming the diagnosis and discussing various aspects of the disease including treatment options, he said, “One of the reasons I decided to come here is due to my brother’s urging. He is a doctor out west and he recommends seeing someone at an academic medical center because doctors at academic medical centers tend to keep up with research. What can you tell me about research in PD and am I a candidate to participate?” I haven’t been asked this question in a while and I was pleased to answer. I’ll share my answer in two parts. I’ll speak about the various research projects we have here at the Parkinson’s and Movement Disorders Program
in a later blog. Today I thought I’d talk about what it means to be in a research study.
Let me back up a little bit. Why is research needed? It may seem apparent to a lot of people. We are a lot farther in understanding a lot of diseases, Parkinson’s included, but we are not quite where we want to be. People are still suffering. In order to advance understanding and treatment of the disease, research is needed. Research comes in many forms. Some occurs in laboratories with cell cultures, chemical compounds, etc. Some involves animals such as flies, mice, primates. We call those pre-clinical studies. Those are done to collect as much data as researchers possibly can, especially safety data, before testing anything on humans. There are government and local institute (e.g. university research institutes, medical schools) regulations in place so that the least amount of foreseeable harm will happen to the human research volunteers.
Then the human participation starts. There are two major kinds of research involving human volunteers. One is called observational trials — volunteers are treated how they normally would be by their own doctors, but they come in periodically for testing (could be a physical examination, blood and urine tests, or imaging studies). The purpose of observational studies is to gain more knowledge about the natural course of the disease. The other kind of studies are treatment trials — volunteers are given a treatment and tests are done to evaluate how well this treatment works.
Why do people participate in research? I have heard a lot of different answers, and as a prior research volunteer myself, I can think of a few as well. The reasons for my participation was part financial (think of the options available for a poor cash-starved medical student; the studies I participated in reimbursed me for the time I spent in the laboratory and travel expenses). More important, I wanted to help. Being a medical student at that time, I was starting to understand what it took for knowledge to come about. No matter how good the animal models are, they are not human and those results may be quite far from what really happens when the same treatment is given to humans. I wanted to do my part (at that time, I wasn’t yet skilled enough to conduct research myself). My patients now tell me the same — they want to help. Depending on the specific aim of the study, some patients may not derive benefit for themselves right away (some may) but advancing science and potentially helping other people who suffer the same disease is one of their goals and sometimes is the reason driving them to participate in clinical research.
When thinking about participating in clinical research, there are few factors I think patients and their families should keep in mind. One, are they comfortable with the idea of research in general? Keep in mind that research is used to gather information. In observational trials, there is no drug or treatment given, hence no “treatment benefit” is expected. In treatment trials, the treatment in question is not an established therapy. That means whether it is helpful or not remains to be seen. Also, are they comfortable with the possibility that they may be in the group called the “placebo” or “control” group? In some trials, the placebo group gets, essentially, a sugar pill and neither the patients nor the researchers would know what kind of pill the patients are getting until after the trial finishes (this is called “blinding” and is used to avoid bias). In some trials, the control group still gets the treatment, but may get it a few weeks or a few months later than the rest of the patients in the trial. Once again, the researchers do not know what the patients in the trial are receiving. Since a research study is done to find out information, sometimes there are side effects that were not known until the treatment is given to humans.
There have been studies consistently saying that patients who participate in clinical trials tend to do better and feel better overall, even if they happen to be in the placebo or control group. The explanation for this is not clear. It could be that having follow-up appointments with physicians more frequently is helping (during the research study, typically the duration between follow-up appointments is shorter). It could also be that participating in clinical trials is motivating in some ways. For me, I am just happy that some patients think about research and want to participate since new developments are always exciting, and without patient participation, we will never get the knowledge we want and need.
Back to Mr. B — we talked about all the trials that we have ongoing at Froedtert & The Medical College of Wisconsin. Since he is newly diagnosed and hasn’t been on any Parkinson medications yet, he is perfect for one of the studies about slowing down the progression of the disease. He is currently thinking about it, and will let me know soon.
Posted 9:25 AM
Team Building and Creative Program Development
Post Written by Karen Blindauer, MD
Twice every month our Parkinson’s team holds a meeting during lunch to discuss topics to improve our overall group performance. All three of us movement disorder neurologists attend, along with our nurses, physical, occupational and speech therapists, our registered dietician, social worker, program manager and program coordinator and one or two of the administrators heading up the neurology department. We report to each other on research updates and what we've read in the medical journals, learned at seminars, seen in clinic and done in our community outreach work. We discuss and review our program’s strengths and weaknesses and brainstorm to find ways to further improve an already outstanding interdisciplinary program that serves our Parkinson's disease patient population.
In addition to performance improvement, we have met to work on grant applications for research and program funding. We have met to collaborate on support group and symposium presentations. We even meet to discuss topics for this blog and who wants to write about what. All of this is an amazingly collegial process. I am truly lucky to be able to work with such a great team of people.
We are increasing our collaboration with the basic scientists in other departments at the Medical College of Wisconsin in the area of translational research. This type of work is focused on bringing new treatments from the early laboratory studies to research in people.
We have a weekly case conference where we discuss potential candidates for Deep Brain Stimulation (DBS). We view videos of on-off testing for each candidate. We review the neuropsychological test results and reports. With this data, our team decides as a group on whether or not DBS is the right choice for a given individual. We also review tough cases of the week and brainstorm together on diagnosis and treatment possibilities. If I were a patient in this program, I would be comforted by the fact that so many people are giving so much thought and consideration to my care.
I am always looking for innovative ways to improve function and quality of life in my patients. This topic often turns out to be surprisingly fun. This was never more evident than a recent Educational Enrichment luncheon during which we all got up on our feet and got moving. Dee Schwaiger, Tom Thoreson and Susanne Carter, community exercise and dance professionals, joined our team for the day and enlightened us about the role of dance for people with Parkinson’s (PWP). They have been collaborating in the development of a dance class for people with Parkinson's. Recent research indicates that dance may be a good modality for improving flexibility, balance and mood for PWP.
Dee, Tom and Susanne wanted us to see/hear/feel/experience what their class would be like for our patients. Amazingly we all got up and danced. For almost an hour we kept moving, and actually felt invigorated. I didn't realize I was pushing myself because I was having too much fun. I was able to see/hear/feel/experience the fact that this dance class can be excellent for PWP. I learned from Tom, Dee and Susanne that every move can be adapted to meet the individual’s needs and ability.
The Parkinson's Dance Project will kick off with two separate six-week classes with additional locations to be added in June.
- Thursday, April 16, 2:00 pm at the Wisconsin Athletic Club, Wauwatosa
- Friday, April 17, 2:00 pm at the Jewish Community Center, Whitefish Bay
The cost is $55 for six weeks. The class meets once per week, for 1 hour 15 minutes per session.Anyone who is interested should call Dee or Tom or Susanne at 262-241-3822 to register
. Check with your doctor if you have any exercise restrictions that would prevent you from participating.
Posted 10:12 AM