Connecticut Screwed Patients With Chronic Diseases Yesterday

Yesterday, the state of Connecticut made news on the new healthcare law that requires states to create exchanges where insurance plans can be purchased when the requirement to buy healthcare insurance goes into effect in 2014. But the reason the state made news is not for a good reason: the State of Connecticut effectively screwed its residents by ignoring a requirement in the Federal laws that requires that there be a CONSUMER REPRESENTATIVE on the Connecticut insusrance exchange. Insurance exchanges must be in states which have not opted out of the law (and that includes Connecticut) established to offer state-regulated and standardized health care plans, from which individuals may purchase health insurance plans that are eligible for Federal subsidies when they required by Federal law to do so in 2014. The exchanges are the quasi-public authority that govern these insurance exchanges.

Let me go on record as saying that Connecticut is no red state. To cite a rather vivid example: same sex marriage has been legal in Connecticut since 2009, and there were never protests of angry citizens marching in the streets arguing to stop it. In fact, after the courts determined that prohibiting same sex couples in Connecticut from receiving a marriage license was a blatant violation of the state Constitution's guarantee of equal protection under the law (the judge wrote "The Connecticut Constitution requires that there be equal protection and due process of law, not that there be equivalent nomenclature for such protection and process"). After that, the only legislative debate that really occurred was over a rule which exempted churches and other religious institutions from being required to facilitate same-sex marriages (the State does not require religious institutions to perform same-sex marriages, but a Town Clerk may not legally deny a same sex couple a marriage license because of his or her personal religious beliefs since they are civil servants on local government payrolls, they are NOT workers for private religious institutions, hence they are not permitted to let their personal beliefs interfere with doing their jobs). Socially, the state (which is sandwiched between New York, Massachusetts and Rhode Island) is of the "live and let live" persuasion; which means keep your nose out of our personal business, and you can expect the same courtesy in exchange.

A majority of citizens in Connecticut voted for President Obama, and surveys also show overwhelming support in the state for the The Patient Protection and Affordable Care Act (PPACA) which became law last year. Yesterday, the list of members of the Board of the Exchange for the State of Connecticut were revealed (see HERE), and many people with chronic illnesses in Connecticut were justfiably p!$$ed off. The reason: there is NOT ONE single consumer representative is on the exchange right now -- not one, yet Federal law actually requires that a consumer representative be on the exchange board. As Connecticut lawmakers selected the exchange members, they staffed the board exclusively with people who either work for the health insurance industry (the state being home to giants like Aetna make them plentiful), state government or other industries like hospitals that profit from providing healthcare.

Yet the federal Exchange regulations say, in the preamble, as follows: "Exchanges are intended to support consumers, including small businesses, and as such, the majority of the voting members of governing boards should be individuals who represent their interests." 76 Fed. Reg. 41872 (7/15/2011).

As a prominent blogger who writes the blog "Advocacy for Patients with Chronic Diseases" (she happens to be a patient with Crohn's disease and gastroparesis, and is also a lawyer more than 25 years) and is based in Farmington, Connecticut (near the state capitol Hartford) eloquently WROTE:

"I don't know about you, but that surely reads to me as though there should be -- oh, I don't know, maybe ONE consumer representative on the Board? Maybe one public official could have appointed someone who would join Vicki Veltri in expressing the consumer point of view?"

In fact, all of the 14 individuals selected for the Board are either members of Governor's administration, former insurance company executives, or individuals with political connections, but none, aside from the non-voting state Healthcare Advocate, are consumer advocates.

What does this mean?

Well, think about it. The Board is made up of government workers and insurance people, so how likely is it that the state's insurance exchange is going to represent the interests of PATIENTS, rather than the insurance industry? Do you trust a former Aetna executive to make choices that represent the interests of patients, or of the industry they have so many personal connections with? The Board also determines how the providers in the exchange are selected, what criteria will be used for selection, etc.

All of this certainly seems like an invitation for a lawsuit, doesn't it? In the meantime, if you live in Connecticut and a actually have chronic illness like say, diabetes, you might consider calling your state lawmakers and giving them an earful about finding ONE patient representative on this board. To find your local state government representatives, visit http://www.cga.ct.gov/.

Pop Culture Anniversaries: Willy Wonka at 40

Monday (August 1, 2011) happened to be the thirtieth anniversary of MTV. While I cannot say that I actually watched the premier (my parents didn't even subscribe to cable until a few years later, and even that took some convincing!) of the cable network, I certainly do remember watching all of the original VJ's: Martha Quinn, Mark Goodman, Nina Blackwood, Alan Hunter and J.J. Jackson. It wasn't until 1992 when MTV introduced "The Real World" and a number of similar shows that have nothing to do with the "M" part of it's name ("M" originally stood for "music") when music on MTV started to fall by the wayside, and it wasn't until late 1990's when the network would stop showing music altogether (at that point, I pretty much stopped watching MTV and I have little use for MTV these days), but I still figured it was worth sharing the anniversary since it was every bit as important as diabetes was for me growing up.

Happy Pop-Culture Anniversaries

By now, I'm guessing most of my readers say my July POST that commented on my own 35-year anniversary of a type 1 diabetes diagnosis, and how I didn't much feel like celebrating in spite of having every reason to. I would also presume that nearly everyone has already seen the YouTube clip commemorating the 30-Year Anniversary of MTV's launch (see http://youtu.be/Cw6xesXLIAA if you haven't, but would like to do so) so I won't be sharing that stale clip here. However, I will share the ABC News clip on MTV's original VJ's (video jockey's, similar to DJ's for disc jockeys): "Where Are They Now?" which I doubt many of my readers caught on the news. The clip can be viewed on the blog http://www.80svjs.com/?p=269 (see also http://t.co/GeSNVaq):



As it turns out, there was also another anniversary in June, that being the 25th anniversary for the John Hughes film "Ferris Bueller's Day Off" (hat tip to the GenXTinct blog on that news) which starred Matthew Broderick (who achieved teen fame starring in another movie known as "War Games" a few years earlier playing a computer nerd who accidentally nearly started World War III on his personal computer with a dial-up modem, a testament as to how long the online community has really been around in one form or another). Truth be told, I had already graduated from high school when that particular movie came out, but I could still appreciate its humor as a college freshman.

However, today's post really has nothing to do with MTV, Ferris Bueller or War Games. Instead, today's post is to commemorate another entertainment anniversary which took place back on June 30, 2011: The 40th anniversary of the original Willy Wonka & the Chocolate factory movie which premiered on the same date in 1971 (and to share a "Where Are They Now?" video segment on the child cast of that film, all of whom are now certifiable adults).

The movie, which was based on a popular children's book written by British author Roald Dahl named "Charlie & the Chocolate Factory" was first published in 1964. The book was about a boy named Charlie Bucket who lived in a poor, ramshackle house (his mother was widowed in the book) who wins one of just five "golden tickets" into the famous but highly-secretive Willy Wonka's Chocolate factory. (The author also wrote several other books which remain popular with the grade-school set even today, including Charlie & the Great Glass Elevator, one of my favorites James and the Giant Peach which was made into a movie back in 1996; that film was also directed by Tim Burton who produced the second film version of Charlie & the Chocolate Factory starring Johnny Depp in 2005, plus the book The Fantastic Mr. Fox which also made it to the big screen in 2009). The 1971 movie was a musical of sorts, and has soundtrack and everything.

Pure Imagination

When I was growing up, there was a Peter Paul chocolate factory in a nearby community, a company that was perhaps best known for selling chocolate covered coconut candy called Mounds (and another variety that contained almonds known as Almond Joy, and the company also successfully marketed another candy mainstay known as the York Peppermint Patty, although they technically acquired that brand, but they were the company to launch it nationally in the late 1970's). Occasionally, they would actually have factory tours at the facility. One summer, my local library announced a recreational program, one of which was a factory tour of the Peter Paul chocolate factory, and I eagerly awaited my sneak peek into those hallowed halls! However, the Connecticut-based chocolate maker Peter Paul had been acquired by British candymaker Cadbury in 1978 (Cadbury later sold it to Hershey a decade later), and as part of a multinational conglomerate, they basically ended tours for local schools. The tour being arranged by my local library was shelved, so I never got to tour the place!

I have little doubt why the story of Charlie & the Chocolate Factory is so positively alluring to children: to be selected as one of just 5 lucky winners to get into see a chocolate factory that is essentially closed off to the public. You can imagine the appeal to almost any child -- it's pure fantasy (or, in the words of one of the film's songs, "Pure Imagination"), and to a kid who was recently diagnosed with diabetes and told they were basically forbidden to eat candies (yes, they did try to claim that back when I was diagnosed), it has always held a special place in my childhood memories.

The following MP3 is the song "Pure Imagination" that was featured as one of the songs in one scene from that movie (which is only available if you're reading this from my actual blog):



I should note that my mother more than made up for it when I was growing up. For example, she had learned how to make chocolate from some of the women at our church (back in the days I actually went) and decided to take those candymaking skills home. She acquired a number of candy molds so my sister and I (both of us have type 1 diabetes) could also be able to enjoy an Easter basket that included candy just like my younger brother received. She found a local supplier of sugar-free chocolate (bulk which had to be melted down), and effectively enabled me, my sister and younger brother to have our own candy factory right at home. That was, at least in my experience, as good as visiting some commercial candymaker's factory!

Now, I was only 2 years old at the time the original film premiered, so I never actually saw the movie on the big screen, but I can remember that it was a really big deal when it made it to network television a few years later, and I was in the right age group (in the second or third-grade) when kids were first started reading books like "Charlie & the Chocolate Factory". The film's producer's took some creative liberties with the title (for example, naming it Willy Wonka) and also with some parts of the story, including adding a scene where Charlie and his grandfather drink fizzy lifting drinks and must burp to keep from floating away, which the author told the British press he absolutely detested, hence he avoided licensing any of his other books to be made into films while he was still alive.

As I noted, Hollywood remade the film in 2009 and the star was Johnny Depp (they also called the film Charlie & the Chocolate Factory which was the real title of the book, not Willy Wonka & the Chocolate Factory, in part because the author said he felt the other title diminished the story about the child's experience and focused inappropriately on the owner of the factory instead, which was probably a fair criticism). While there was lots to like about new version, I suspect the author might also have hated the remade version, too. The reason: the part about Charlie's father being a dentist was NEVER in his original book. In fact, in the original book, Charlie's mother is a widow raising her son, parents and in-laws in a tiny house with a low-paying job, so Tim Burton took some creative liberties with the story as well, which was why the British author reportedly hated the 1971 version. However, I think the script of the original film follows the book more closely than the new version.

Willy Wonka Cast: Where Are They Now & A TV Reunion

In any event, to commemorate the original film's anniversary, I happened to notice a while back in one of the New York daily tabloid newspapers, in this case The Daily News, has run a series of "Where are they now?" updates on various movies and TV shows over the years, and they did one about Willy Wonka & the Chocolate Factory back in May (probably in anticipation of the film's anniversary). You can view the NY Daily News feature (which includes a cool slideshow presentation on many cast members both then and now) for the original Willy Wonka movie at http://goo.gl/VKrL.

While reading up on this, and in exploring some blog links from the author of book that I noted in my PRECEDING POST "Whatever Happened to Pudding Pops" I discovered that back around the time of the original Willy Wonka movie's 40th anniversary, NBC's Today Show had a cast reunion (including the cast of children from the film; curiously, Gene Wilder who played Willy Wonka in the flick was not there) which can be seen at http://www.msnbc.msn.com/id/21134540/vp/43038138:

They've also established a website at http://www.willywonkamovie.com (which they aren't yet promoting) where you can view the trailer for the revised version, and will be adding some games and miscellaneous information in the not-too-distant future. According to one of the PRESS RELEASES, "To honor the 40th anniversary of the film, Warner Brothers has digitally remastered the original movie and will be re-releasing a high-definition, BlueRay version on October 4, 2011. Willy Wonka & the Chocolate Factory: 40th Anniversary Ultimate Collector's Edition will contain more than an hour of extras, including Mel Stuart's Wonkavision, a new interview with the director; a new featurette about Roald Dahl, author of the book upon which the movie is based; a 144-page production book reprint filled with photos and notes; and archival letters. The package also will contain a retro Wonka Bar-shaped tin box with scented pencils and eraser, and a limited-time Golden Ticket Instant Win Game piece for a chance to enter and win a trip for two to Los Angeles. As in the movie, there will be five grand-prize winners. There also will be 40 reproductions of the original theatrical poster given away as runner-up prizes." I've included the trailer below (again, you must watch it from my blog, not your RSS reader, otherwise visit the aforementioned link!):



That should satisfy any cravings for chocolate I may have for a while!