Saturday, February 23, 2008

In Honor of the Academy Awards - Oscar Night for SiCKO

SiCKO has been nominated for Best Documentary Feature in the 80th Annual Academy Awards, show airing February 24, 2008. Rather than discuss the American healthcare system and all of it's deficiencies, I'd like to share a story with you.

In November 2006, I met a kind, respectful, and very intelligent person named Meghan O'Hara. Meghan happens to be producer of SiCKO and had come to my music studio for an on-camera interview.


This is Meghan, her film crew, and me.

Francisco Latorre, production sound

Peter Nelson, camera

Meghan O'Hara, producer

Lisa Emrich, at the piano

Christine Fall, field producer
(not present)

How in the world did I meet Meghan and her film crew you ask?

Well, after being diagnosed with multiple sclerosis, I encountered some difficulty in receiving and paying for the medical treatment I required - and this while being 'fully' insured. I had been put through the ringer by several programs which propose to help uninsured and under-insured patients pay for and obtain their medications or which focus on multiple sclerosis.

By the summer 2006, I had approached and/or applied to programs offered by (or previously offered by) the following organizations:

  • Shared Solutions (refers patients to NORD)
  • National Organization for Rare Disorders
  • National Multiple Sclerosis Society (no money for meds)
  • Multiple Sclerosis Society of America (no money for meds)
  • Multiple Sclerosis Foundation (no money for meds)
  • Patient Advocate Foundation
  • Patient Access Network Foundation
  • PAF Co-Pay Relief Program (no longer has MS fund)
  • Patient Services Incorporated (no longer has MS fund)
And since that time, I have also had interactions with the following:

  • Cephalon - Provigil Assistance Program
  • National Organization for Rare Disorders
  • Partnership for Prescription Assistance
  • HealthWell Foundation
  • Chronic Disease Fund
  • Pfizer Connection to Care
  • Rx Outreach
So it was due to struggling with 'the system' and being 'rejected and denied appeals' to obtain the necessary assistance that a friend of mine passed on an email she had received from an organization she is a member of in the mental health field. The email was an appeal for real life stories for a documentary which Michael Moore was filming on the American healthcare system.

His production company was looking for 3 real people who fit certain criteria to feature in his movie SiCKO. My real-life situation fit the requirements - and I thought to myself "why not" - so I spent an hour or so that afternoon and composed a lengthy email detailing my situation, my struggles, and the numerous insufficient outcomes. I pressed the send button although I had never seen a Michael Moore film before.

Less than 2 weeks later, I received a phone call from Christine Fall, a field producer of Michael Moore's production company. Apparently, my email had grabbed someone's attention and found it's way to Christine's desk for further investigation. We spoke on the phone many times over a couple of months with her asking questions related to what I had shared in my email, follow-up questions from our talks which her colleagues wanted asked, and questions related to other experiences and thoughts I had about certain things (including the Big Orange 'Help is Here' Bus.)

Eventually we worked up to the big question -

"Would you be willing to be interviewed on camera?" I said yes.

So in November 2006, on a rainy Thursday evening, a film crew came to my music studio to interview me regarding my experiences with the 'heathcare system' and to see me in action with a student or two. Of course, I had to okay it with the student and his/her family beforehand.

I had never spoken with Meghan before and we did not discuss any of the questions she would ask beforehand. That way what was caught on camera was non-rehearsed and organic. My mother watched the monitor for those several hours and later said that I was very impressive on camera - calm, articulate, compelling. The interview lasted much longer than Meghan or I had anticipated, likely due to my charismatic nature (hehe).

During the interview itself, I didn't crack a tear or resort to showing the piles of bills, explanation of benefit statements, or rejections from various programs. I spoke the truth, clearly and honestly, without great drama or pretense. I even shared my discoveries regarding Cephalon's deal with TEVA regarding Provigil.

A month or so before the Washington, D.C., premiere of SiCKO, I received a call from Rehya Young (associate producer) informing me that my scenes had been cut from the film, although there were those who fought to keep them in. But who knows why editors make the decisions they do, otherwise one of the major difficulties which MS patients face, being expensive pharmaceuticals and financial security, would have been placed on screen for the world to see. Oh well - a missed opportunity.

I was invited to attend the DC premiere which I did in June 2007 as Mr. Moore's guest. Outside the theater, several reporters from local papers were looking for folks involved with the film to interview. My mom got someone's attention to see if he would like to interview me. The question first asked was, "Were you one of those who went to Cuba?" Well, no. "Not interested, sorry."

Media only wants the "stars." Another missed opportunity.

I did enjoy the movie and afterwards met Meghan in the lobby of the theater. She recognized me immediately and apologized for cutting my scenes. We talked for a while and she asked if I had met Michael. I had not.

I stayed around until the crowd dispersed, leaving only a smaller entourage. Meghan introduced me to Michael and his first words were, "you're the horn teacher!"

"I'm sorry we had to cut your scenes."

He told me that he had asked the British pharmacist about the cost for filling my prescriptions in England. (If you saw the film, you know what this refers to.)

And that maybe....include on the DVD....

But they're not - a final missed opportunity.

However, my name is included in the credits, right below Danny Elfmann.

I'll be watching and will cheer if SiCKO wins the award.

8 comments:

  1. Damn! So close and yet so far! MS rarely gets widespread attention. I haven't seen Sicko yet, but plan to. Seems that those who are secure in great health care plans with no major illness just don't get it. They will only wake up when it hits home. Thanks for all you do.

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  2. wooooowwww! you are nearly famous lady! i am so sad that you didn't get into the film. i think if karma works the way i think it should work...you will have more opportunities somehow. keep doing all that you do!

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  3. I am humbled...NOT by the fact you were "almost" in the film, but by the fact YOU have taken (and take) so many risks/experiences/difficult opportunities by the challenging horns and "tame" them. You are bold, which I admire greatly.

    Linda D. in Seattle

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  4. Hi! I saw your comments in my blog. I graduated from South Lakes in 1985. Small world! When I lived in Reston I lived off of Glade Drive over by Lake Audubon. The last time I was in Reston was a few years ago and I hardly recognized parts of it!

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  5. To be cut! You gave it your all, that matters. I was pulling for Sicko, the winner is story to be seen too. Did you see M Moore on red carpet? He got his 2 cents in about our health care fiasco. Your story moved him and added more flame to his fire, on screen or not. Thank you.

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  6. Hi Lisa,

    I'm a newcomer to the blogging world. I've just started my own MS blog, www.msfriend.com, after having another relapse and being frustrated with having to stop working again.

    I can relate to all the nonsense with the US healthcare industry, since I of course am not insured on my own, and my husband's insurance is from his small (less than 35 people) company. We pay over $600/month for just the 2 of us, and our copays are still $30 each. I can't tell you how much I've spent in copays alone in the past two months of this relapse. I just thank goodness that we have coverage at all, and that it does cover the expense of my Betaseron.

    I also wrote an article about "Sicko" on my Women's Health site after it came out, because I got so angry about health coverage here:

    http://neurologicalillness.suite101.com/article.cfm/quotsickoquot_delivers

    Take care----I look forward to reading more from you and other MS bloggers.


    Sincerely,

    Jen, MS Friend

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  7. Hmmmm....The "Sicko" article link got cut off. Let me try again:


    http://neurologicalillness.suite101.com/article.cfm/quotsickoquot_delivers


    If not, you can check out www.Suite101.com, and type "Sicko Delivers" in the search box.

    Jen

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