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    5 38.46%
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Thread: Hiring Lobbyist

  1. #1
    Senior Member mk99's Avatar
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    Jul 2001
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    Hiring Lobbyist

    How much $ per year would you be willing to donate to hire a full-time agressive Lobbyist to express our viewpoint, push hard for Human Trials NOW, fight for funding and most importantly to change the mentality that "this is not that bad" and that "30 years is reasonable to wait for cure", etc?

    Wise: how much does an excellent and informed Lobbyist get paid to do this kind of work? How would you even begin to find someone like this?

  2. #2
    mkowalski99,

    What lobbyists do for organizations is to provide information about legislation and what opportunities there are for pushing the public relations button. The cost of lobbying varies but a good lobbyist can be well worth millions because the lobbying sometimes can achieve billions. In other words, the cost depends on what one is asking for. The more you aim for, the more it will cost.

    Lobbyists are merely hired guns. They cannot speak for the community. They are not effective without a patient and committed organization that has a strong and motivated grass-roots consensus that is clearly focussed on specific achievable goals. Money alone will not do it. The most difficult part of lobbying is deciding what to ask for and patiently pursuing those goals through multiple routes and contacts in the government, industry, and private sectors until solutions that are acceptable to all sides are achieved.

    One of the problems in our field is that there is not a clear consensus within the spinal cord injury community concerning what is important to us. Just the discussion on these forums indicate this clearly. There is, in my opinion, not even a strong consensus on the need for research. Of course people want to walk, pee, poop, and have sex but the path to achieving these goals is unclear to most members of the community.

    I am not even sure that most people in the community believe in spinal cord injury research. Many people simply want access to experimental therapies. Some feel that the FDA, industry, and even scientists are conspiring to withhold therapies from them. A few think that they can do it alone or that the answer lies overseas.

    In my opinion, too many people are expecting miracles. There is an expectation of good research to be done without funding, clinical trials to be done without research or industry support, and cures to be laid upon the field like loaves from heaven. As long as this is the case, we are unlikely to be able to mount an effective lobbying effort at the Federal level.

    Wise.

    [This message was edited by Wise Young on November 20, 2001 at 09:26 AM.]

  3. #3

    clinical trials

    I am 100% in favor of extensive clinical trials. Especially on anything surgical. I wouldn't have any problem trying out a new drug that has a potential to give a cure during a clinical trial, but at my level, if an experimental surgery goes bad, I won't be able to breathe a my own. I would never want to go into anything permanent that wouldn't give me 99 % guarantee that I would be cured.I agree with you in the fact that a lot of people are looking for just a miracle cure or thinking clinical trials are just a waste. Personally, if I took a drug that only 1 of 1000 people are allergic to and it happened to be me and they could of prevented that if they had done a thorough clinical trial, I'd be pretty pissed. I saw exactly how badly spinal cord was injured on an MRI and I tell you what, my hat goes off to you guys. You have a lot of work cut out for you even if you been doing it for years. I wish there was away I could sit in a research lab and see what was going on so I could understand better, but oh well.

  4. #4

    Hiring a Lobbyist

    Wise, although I am not sure a Lobbyist is the answer, what would be your put as far as developing a priority list of what should be addressed?

  5. #5
    Dr. Young, what motivates you in your research? In your opinion, what is most important and least important to most researchers? Money, awards, publicity, peer recognition, genuine caring, etc.?

    In your opinion, are most of the researchers coming to work every day genuinely trying to find a cure or are they just simply going through the motions? (I know you genuinely care, or you would not be here every day. But so far (I will be three years post next week), I have yet to find anyone else in the medical profession who acts like they care 2% as much as you do. Maybe that's why most of us get so frustrated.

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