A Consumer Council for Inhibitors

I was in Chicago on Thursday and Friday to facilitate the Novo Nordisk Consumer Council meeting; this is the third such meeting which brings together parents and patients who are also opinion leaders for a day of analysis and brainstorming to determine better ways to educate and empower inhibitor families. Novo Nordisk flew our council members in from Ohio, California, South Carolina, Rhode Island and Pennsylvania, and despite stormy weather, which delayed many flights, most members were able to gather for an elegant dinner at Nick’s Fish Market to get reacquainted.

The next day was productive and stimulating. After breakfast we dove into our agenda, discussing inhibitor patients’ needs and ways to address them. Council members brought in sample educational materials for other chronic disorders, which we analyzed for their usefulness by rating content, layout and user-friendliness. We had a discussion after lunch about the business structure of the hemophilia market and how products are valued. Insurance played a large role in all we discussed.

The Consumer Council was designed to be a forum for inhibitor patients to vocalize they concerns directly to a manufacturer, and provide feedback to a manufacturer on its own marketing materials and efforts to educate. It also allows a manufacturer to directly educate consumers, who will in turn educate consumers back from where they come. It is a great two-way interaction that benefits everyone. I was very sorry to leave my good friends Friday afternoon, many of whom remained for the Novo Nordisk Inhibitor Summit meeting on Saturday. Me? I chose to be in Boston for my daughter’s 16th birthday. In all the years I have worked with the hemophilia community (17 now) and in all my travels, I have not yet missed any of my three children’s birthdays.

On the plane ride home, no celebrity sighting but something just as amazing. Sitting next to me was a 30-year-old man, who looked remarkably like a 20-year-old college student. Brett was charming, talkative, and full of ideas and life. He owns an entertainment consulting company, and teaches teambuilding, goal setting and leadership, topics near to my heart. He simply exuded energy, enthusiasm and zest for life. When he asked what I do, he listened with much interest. When I finished he told me he knew a guy with hemophilia. I felt it coming–most likely I know him, too! Sure enough, it was Ali B., my son’s counselor from Paul Newman’s Camp Hole in the Wall Gang in Connecticut! Is that strange, or what? Yes and no; things like this happen a lot, the more I travel and chat with fellow passengers. Brett and I met as strangers and parted as friends, vowing to share our entrepreneurial experiences in the future and stay in touch. I didn’t get home till 2:30 am, but appreciated a happily surprising end to a great trip!

1 thought on “A Consumer Council for Inhibitors”

  1. Hello Everyone,
    I was able to attend the meeting in Chicago and I think it was our best one yet. It was wonderful to see everyone again. At Nick’s Fish Market restaurant, I met Agnes and Fran, from Frank’s family for the 1st. time and their family has really made an impression on me. Especially Agnes. Despite all the delays, it was just as good to see Gene and Karen and Dave and his wife, and Rich was there with his Dad and Phil. Laurie was there of course and Gar, and Elvira and the other Karen, who else…? I am forgetting someone….my son, Lex. I enjoyed getting reacquainted with everyone and trying Sashimi…or was that Tuna Tartar? Wild experience. I would not have tried that with a beef dish. I look forward to dining with all of you again next year hopefully. I still think I am forgetting someone.
    The next day, Friday, we all met for the Consumer Council and discussed marketing material like brochures and advertisements and one children’s book. We also discussed the website. That was a blast, he had a lot of laughs and the time just flew by.
    Sonji was delayed and we all missed her presence at the meeting, but she came the next day and was to attend the Summit meetings. The meetings were so good. I know all would agree that you come away from those meetings feeling more encouraged, empowered and educated than you were before the meeting. When Syd (Isdro) 1st spoke into the microphone and introduced himself…my eyes were already welling up with tears. I was like.. oh my God, this is not even my kid. Almost the entire time he was speaking I kept wiping tears from my face and trying not to look at him and his mom and wouldn’t you know it… every direction I turned people were crying. We were all so proud and touched. Thank you( Frank and Family) from all of us if you are reading this. Laurie, you missed it. I hoped it was videotaped by that group behind us. Check it out if you get a chance to.
    There were more highlights, but I am so long-winded, I have to kind of cut myself off so to speak. I enjoyed all of you and looking forward to the next time. Hey Rich, remember how many time that pac-man analogy was used? Can you say patent? You have an awesome voice with that distinct east-coast flair. Have you ever thought of a career in radio broadcasting? Imagine, having your show…? Think about it before someone else impersonates your voice tones and capitalizes on it. Another highlight from the consumer council was
    Breaking off into groups and I got to brainstorm with Karen, Rich, and Frank. And that cake at lunch. What was that? Coconut? Love ya

    The Great Inhibinator that was an interesting pass around.
    Theresa F. Minnesota
    Publish Reject


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