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Decreased Funding from NIH in SCI

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  • #31
    I new a guy that had the nose stuff from his nose put on his injury site in another country than the usa. He never got anything back and got so fat he died a few years ago.
    Art

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    • #32
      Look at how much money they have spent on M.D. over the years.....if hope comes it will come from them way before SCI.
      Art

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      • #33
        The Senate bill called "Innovations for Healthier Americans Act" is being developed in the Senate HELP committee. Write or call members on that committee. http://www.help.senate.gov/about/members

        When you write or call them, ask for contact with the senator's health & science aide. (At the federal level, the aides handle most of the detailed stuff, legislators have to be generalists). These bills are designed be broad category, not disease specific.

        Also, even if you are in a different state or country, you still can have influence on this legislation. When we passed the MN SCI/ TBI research bill, we had a lot of acknowledgment from supporters from all over the world. When you write or call into one of these offices, they add a checkmark next to the different issues you bring up. These offices get thousands of pieces of correspondence a day, so the more people focused on SCI research, the better!

        If you look at the house's version of the bill (https://www.congress.gov/bill/114th-...s/house-bill/6), they have a list of subsections and related bills. This is a lot of reading, but this is the details of the bill.

        Some things I would address would be to include "Conditions" in phrasing where there is a "Disease". The literature is grey around this. Technically, SCI's are Conditions, not diseases, this is why our population does not qualify for a lot of research benefits that rare diseases have (This isn't something to address in this legislation and if it is, it will have to be addressed at another time, with separate legislation)

        There is a bill that is likely to be included called "Advancing Research for Neurological Diseases Act of 2015" (HR 292, S 849). Sound's great, but it is just a bill to gather prevalence data. This is still important though. However, there is no literature specifically for conditions & many are not aware that this might exclude SCI people.

        I would specifically ask for increased funding for the NIH, more efficient regulatory processes from the FDA for approving clinical trials, and cross disease trial comparisons (where results from an SCI trial would translate to ALS, MS, and so on & vice versa
        ). This would help us get access easier for something that is approved for these other diseases and would benefit us. (Amprya!)

        Something to note about NIH appropriations, Congress is only allowed to allocate funds for the entire NIH. They can't directly influence specific disease spending. It is definitely worth mentioning SCI & your story, but be aware you are advocating for overall NIH spending. This still helps us, since it just makes our slice of the whole pie a little thicker.

        The Army under the Department of Defense has a smaller ($30 million compared to the NIH's $80 million for SCI) research program where congress can allocate directly to disease specific categories. It is called the "Congressionally Directied Medical Research Program" (CDMRP). Recently, SCI saw a large increase in funding from this program! Ask for increased and continued funding for SCI. However, right now attention is being focused on the NIH which is what we need to address.

        I am continuing to look into things that would help us with this legislation, but let us know if you find or are aware of anything or have a good idea that would fit in this legislation. Here is a report overview of the 21st Century Cures Act.

        http://energycommerce.house.gov/site...te%20Paper.pdf

        Here is another good summary.

        https://www.cov.com/~/media/files/co..._cures_act.pdf

        Last edited by Skipow; 09-20-2015, 09:49 AM.

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        • #34
          There is also another bill called "Enhancing the Stature & Visibility of Medical Rehabilitation Research at the NIH" (S 800) that would help advance rehabilitation research.
          Last edited by Skipow; 09-20-2015, 09:24 AM.

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          • #35
            Originally posted by Art454 View Post
            They look at incurable disease and injury and why spend money on it. When I first got hurt over 40 years ago doc said I be walking in 5 years.....here we are 40 years latter no closer than 40 years ago.
            Your comments stating that SCI is incurable in today's research environment do not help and are part of the reason why SCI research has not been funded. Public perception that there is nothing to do is very damaging to research that is showing results in people.

            Start another thread if you want to discuss this, please don't muddy this one up.
            Last edited by Skipow; 09-20-2015, 09:27 AM.

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            • #36
              Originally posted by JamesMcM View Post
              Wait Until trump is President, probably 100% budget cuts on SCI research so it can go towards making bombs or better hotels
              I can't wrap my head around that possibility.
              http://spinalcordresearchandadvocacy.wordpress.com/

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              • #37
                Originally posted by Wise Young View Post
                Skipow,

                NIH submits a budget request to the White House every year, based on internal review and discussion of the needs and programs. The White House trims or adds to that request based on priorities set by the President. The White House budget goes to Congress in February. The House Appropriations Committee considers the budget, followed by the Senate. They each pass their respective versions of the budget and a bipartisan joint committee of the Senate and House hammers out the budget before it is passed. That is the way it is supposed to work.

                Unfortunately, for almost every year since 2008, Congress has not been able to pass a budget. So, they instead passed continuing resolutions, which approved the same budget from the previous year, adjusted by amendments through the year. The National Institutes of Health has had no increase in funding since 2003. In 2013, Congress passed a rule that says that if they do not pass a budget, the fallback budget will involve sequestration of funds to reduce the nation's debt. These sequestration rules resulted in 5% cuts of the NIH budget last year. For the first time in memory (since World War II), our Congress has actually reduced NIH funding.

                Rather than take my word for it, people should read a letter that Congressman Sandy Levin of the 9th Congressional District of Michigan wrote to John Boehner and Nancy Pelosi in November of 2014. It requests that the NIH budget be restored to pre-sequestration levels, with inflation taken into account. The letter emphasized the importance of biomedical research for health and prosperity of the nation.

                http://levin.house.gov/levin-urges-i...ackage-fy-2015


                In December 2014, Congress agreed on an omnibus bill that prevented closure of the government in January 2015 but House Republicans still wanted to play political football with the budget. They withheld approval of the Homeland Security budget in hopes of pressuring the White House in February to withdraw its controversial immigration policy. It did not work. The 2016 budget is wending its way through the committees in Congress. Nobody wants sequestration to happen again with another 5% cut of the budget. However, nothing is likely to change until the impasse between the White House and Congress is resolved. This is not likely to occur until after Obama leaves office.

                Wise.
                We'll see if another shut down is chosen in the coming weeks over Planned Parenthood this time instead of Homeland Security.
                http://spinalcordresearchandadvocacy.wordpress.com/

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                • #38
                  Since 2008 no yearly budget. I won't say "it doesn't get any more dysfunctional than that" because next thing we know shut downs will become the norm. Sigh.

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                  • #39
                    "The leaders in bioscience will be the leaders of the world"

                    http://www.bloomberg.com/news/videos...-many-diseases
                    In God we trust; all others bring data. - Edwards Deming

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