Opening Day Versus Muscular Dystrophy: White House Petitions and the Flaws in Society

The recent push by Budweiser and Major League Baseball to have Opening Day of the baseball season declared a national holiday or national day of observance hit a new milestone, as was widely reported in the media yesterday, the petition to The White House hit 100,000 signatures.

 

This number was reached well ahead of the 30 days required to attain the threshold for White House consideration. The background description for the petition references the notion that Opening Day is also the start of Spring and a time of renewal for the American people, and that creates further merit to that day being a day of observance for the nation.

 

Now, I enjoy watching Major League Baseball just as much, if not more, than the average American. I attend games, listen on the radio, and watch a great deal of out-of-market games as well. I find the pace of the game relaxing, and the battles between the pitcher and batter fascinating.

 

However, I do not feel that the Opening Day of the professional baseball season should be a national holiday, and I have made this opinion well known on social media, where MLB and Budweiser have promoted this effort heavily, especially on Facebook.

 

This is a blatant attempt by Budweiser to sell even more beer by having a captive audience of Americans for Opening Day games, many of which are played in the afternoon during regular working hours. The interest by MLB is clear, while the attendance level and ticket sales demand has always been robust across all the markets in the league on Opening Day; they will have a new audience of TV viewers if everyone is home from work that day. The ratings will drive up as well the advertising revenues for these first games.

 

An additional benefit for Budweiser will be heavier bar and restaurant traffic on Opening Day if it is a national holiday. That will mean increased profits for the beer making giant.

 

A Stalled Cure

 

In the meantime, this month also featured another petition to The White House that my sister alerted me to recently regarding the potential cure for Duchenne Muscular Dystrophy.

 

This petition seeks help from The White House in gaining Accelerated Approval for a drug that has shown incredible progress in the reversal of symptoms for patients with Duchenne Muscular Dystrophy who are suffering tremendously.

 

Duchenne Muscular Dystrophy effects 1 in every 3,500 boys in the United States. The condition results in muscle degeneration and over the course of time, death. The average life expectancy is 25, and the disease rapidly deteriorates the muscle mass in the legs and pelvis and progresses up the spine and neck.

 

The Food & Drug Administration (FDA) has been reluctant to mark this important drug with even limited approval despite promising data from successful clinical trials with the drug. The parents and relatives of those suffering with the disease are pushing this effort for Accelerated Approval forward.

 

However, through no fault of their effort, the promotion for this petition has been largely through grassroots e-mail distribution and has far less social media exposure than the promotion that Budweiser is committing toward the Opening Day holiday petition.

 

This petition is trying to solve a critical issue, what can mean literally life or death for people, and the cure is being delayed and stalled in the FDA. Their petition is struggling in the month of March to gain even a few thousand signatures while the Opening Day petition has 100,000 names on it.

 

A Flawed Society

 

This whole situation is a microcosm of our flawed society in America. The effort is there behind something rather trivial in having Opening Day as a national day of observance, while the effort to gain approval of a drug to deal with a horrible disease is not on anybody’s radar screen.

 

The effort behind getting the petition for the Duchenne Muscular Dystrophy drug approval accelerated is called “The Race to Yes” and further information can be found on their site: http://www.theracetoyes.org where you can also access the link to the petition for this critically important effort.

 

I also wonder how the victims and families of those lost on 9/11 feel about the Opening Day situation. I expressed on social media their prior attempts for federal government support for 9/11 to be a national day of observance, a day where people would be off from work and would be requested to perform an act of service to the community on that day.

 

I think we all can take a very educated guess on how the victims and families of those lost on 9/11 feel about this situation. Could you imagine working on getting this type of recognition for 9/11 and the Opening Day petition gets to 100K signatures, being pretty upset would be an understatement, that is what is wrong with American society: the emphasis on things that are not important.

 

Counterpoint

 

In fair balance, MLB does an incredible amount of charitable work and community service, particularly in the markets where the league has franchises, which is essentially all of the major cities of the United States. I am sure that Budweiser, and their parent company, AB InBev, conduct a large amount of community service and charitable giving as well.

 

In addition, Major League Baseball was and still is a very generous supporter to 9/11 related charities for the families of the victims and for the police, firemen, and other first responders and their families. Those games of baseball played just after that tragedy helped myself and many others return to normalcy after such a horrible and traumatic event.

 

Budweiser is looking to enhance baseball which is an incredible profit generator for their company, and they are well within their rights to do so. It just does not mean that I have to agree with their pursuit of this Opening Day petition.

 

In fairness, the rationale behind the FDA not providing at least a limited approval of the Duchenne Muscular Dystrophy drug could be indicative of a potential issue with the drug. Although I could not find any reports of adverse events, side effects, or discontinuations regarding the drug in my review of the clinical study data.

 

Regardless of the rationale, the fact remains that the FDA has not moved on a drug that could represent the best opportunity for these children to have a better quality of life with a horrible disease. An explanation from the FDA to the families of those afflicted regarding the reason for the delay would probably be a good idea for someone at the FDA to pursue at this point.

 

 

Outlook

 

In the end analysis, the petition process via The White House web site has plenty of worthwhile causes vying to receive some sort of assistance from the federal government to progress their respective cause.

 

I feel that these issues I mentioned and others deserve some merit and attention and that the Opening Day holiday petition is completely unnecessary. The American society has holidays in place where we can all sit around drink Budweiser and watch baseball already which are called Memorial Day and Labor Day. We have days off of work where we can watch baseball and have a beer too: it is called the weekend. Another holiday for baseball is not needed.

 

A cure for a disease effecting children is vitally needed, and others days of observance or service such as 9/11 would enhance our society. To borrow a phrase from baseball it is time for Americans to “keep their eye on the ball” and focus on the issues that really necessitate federal government support.

 

(Statistics and background info courtesy of NIH, www.muscular-dystrophy.org and www.theracetoyes.org  Opening Day info courtesy of UPI and Facebook)

 

 

 

One Comment

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