Thursday, October 8, 2009

Personal Cost of Health Care

Last Friday afternoon I went to see my family doctor. I had been having some intestinal issues that were of concern and was sent immediately to the hospital for a CT Scan. After the scan I was given instructions by my doctor and sent home. Sunday evening my condition was worsening and at 1 am on Monday morning my husband took me to the ER where I was admitted. We pay a $30 co-pay for regular office visits, a $50 co-pay for urgent care and/or specialist visits, and $150 co-pay for ER visits and it is always expected that those are paid at the time of each visit. Our prescription benefits are on a tier system which means that we either pay $20, $30, $50 or 20% depending on which tier the drug prescribed falls in. We also have a $1500 deductible per person per year. Our out of pocket medical expenses are usually around $7,000 a year. That is with good insurance.

While I was still in my hospital bed a lady from accounting came in to see me. At that point I had been in the hospital a total of 34 hours. She informed me that our bill was in excess of $5,000 and wanted to know if we would be able to take care of our portion of the bill that day. My husband was not there and they had instructed him to take my purse home with him so I told her no. She then handed me an envelope and told me that they like to see no less than $250 before leaving the hospital but that I could mail it when I got home. I was a bit dumbfounded. We paid our $150 co-pay in the ER and we always pay our medical bills. I also know from past experience that that $5,000 does not cover the ER doctor, the radiologist, the floor doctor, or the gastrointerologist. We will be receiving bills from them shortly.

Why so expensive? Well... different people pay differing amounts. Our insurance will no doubt cut the cost of the bill because they have a set standard they pay for different procedures. If the hospital charges more than that they will write off the difference because they have a contract with the insurance company to do so. In many ways our insurance company keeps the cost down for us by having restrictions like that in place. But the cost is still too high. There is a lot that most do not understand about how health care works. On the surface someone may look at this post and take it as an example of the need for universal health care. It just is not that simple.

I wonder if I would have been able to get an appointment on Friday if we were under a government controlled health care system. Would I have gotten a CT scan the same day? My condition could have potentially become life threatening if not treated. What if I had to wait?

I know a lot of families that are not as well off as we are. There are health care programs for them. They do not go without care. What I hear about and what I know do not add up. I definitely agree that something must be done about health care costs but what is being proposed is not the answer. Why would it not be implemented if passed until 2013? The deductions from all of our incomes will take effect immediately. Does that not raise a red flag?

Friday, October 2, 2009

National Institutes of Health Research Grant

As someone who suffers from Spasmodic Dysphonia, I received the following e-mail today:

And now, for some really exciting news that could have a real effect on many of us with focal forms of dystonia such as Spasmodic Dysphonia. The NIH has awarded a 5 year, $5.6 million grant to help advance research and studies through a multicenter Dystonia Coalition!!! The Dystonia Medical Research Foundation will play a key role!! Read the complete information below:

NIH Awards New Grant to Develop Better Treatments for Focal Dystonias

September 30, 2009 – Officials at the National Institutes of Health (NIH) have announced the funding of a five year award aimed at forming a multicenter Dystonia Coalition to advance clinical research on primary focal dystonias, including Cervical Dystonia, Spasmodic Dysphonia, Blepharospasm, and others. Leading the Coalition will be H. A. Jinnah, MD, PhD, Professor of Neurology and Human Genetics at Emory University in Atlanta, GA.

Dystonia is a neurological movement disorder that causes muscles to contract and spasm involuntarily. It affects men, women and children. Dystonia can be generalized, affecting many major muscle groups and resulting in twisting, repetitive movements and abnormal postures. Or dystonia can be more focal, affecting a specific part of the body such as legs, arms, hands, neck, face, mouth, or vocal cords. Currently, it is estimated that at least 300,000 individuals in North America suffer from dystonia, making it more common than Huntington’s disease, muscular dystrophy, and ALS. There is no known cure.

The $5.6 million award will allow the Dystonia Coalition to cultivate a better understanding of the primary focal dystonias and find better therapies. This includes projects to develop a better understanding of their natural history, establish instruments appropriate for monitoring disease severity in clinical trials, and develop proper diagnostic criteria. The creation of a biorepository to store biological samples to support future research is also planned, making these resources available to investigators worldwide. The Coalition will bring together the most committed dystonia researchers in North America and Europe, along with dystonia patient advocacy groups.

The Dystonia Medical Research Foundation (DMRF) will play an integral role by providing logistical and planning support for the Coalition. The Foundation is well-poised to serve in this capacity as it is the largest and most established patient support organization devoted to dystonia.

“Dystonias are rare and devastating diseases, with limited and sometimes inadequate treatment options,” explains Dr. Jinnah. “Funding of the Dystonia Coalition will allow us to address unmet needs in focal dystonia research, as well as make resources available to other investigators that will help to advance the field.”

“We are delighted about the funding of the Dystonia Coalition and pleased that Dr. Jinnah will be leading this effort,” says Mahlon R. DeLong, MD, Scientific Director of the DMRF. “This is a unique opportunity to provide much-needed attention to these rare diseases. The DMRF is proud to play a role in this important effort.”

The Dystonia Medical Research Foundation is dedicated to advancing research for more treatments and ultimately a cure, promoting awareness and education and supporting the needs and well being of affected individuals and families. To learn more about dystonia, contact the Dystonia Medical Research Foundation at 1-800-377-3978 or
I would love for new treatments and/or a cure to be found for my condition. Being told by my doctor last year that there was nothing more they could do for me was a real blow. You would think that the above would come as good news to me. Sadly, it is not.
The National Institutes of Health is the Nation's Medical Research Agency run through the U.S. Department of Health & Human Services. This money will be used for research using embryonic stem cells to which I am morally opposed. I was quite disgusted when I went to the NIH Guidelines on Human Stem Cell Research.
The guideline begins with this statement: On March 9, 2009, President Barack H. Obama issued Executive Order 13505: Removing Barriers to Responsible Scientific Research Involving Human Stem Cells.
This statement is misleading. I have previously written about the stem cell debate on this page. President Bush allowed government funded embryonic stem cell research through existing lines that had been slated for destruction. There has never been any sort of ban on any type of stem cell research, just government funding for embryonic stem cell research. The research already done, which is extensive, has revealed that embryonic stem cells are unstable and lead to cancer. Why they want to continue on in that vein... taking money from adult stem cell research that has held much more promise, is beyond me. Yes, I know that embryonic stem cells can be manipulated into any sort of tissue where adult stem cells are more limited. I just have a problem with the creation of life being cannibalized in the name of medicine and cures for diseases. It is wrong.
So what happens if they come up with a "cure" for Spasmodic Dysphonia through embryonic stem cells? I will choose to live with it.