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Thread: Rationale for unlinking CRPA and SCREA at last year's rally

  1. #1
    Quote Originally Posted by antiquity
    Leif, the CRPA is a FUNDING bill. It asks that the NIH (federal government) appropriate several million dollars a year for spinal cord injury research. This will help the cure, not hurt it.
    Leif, seeing that you edited your earlier post out... I am using antiquity's post to add an answer to your question. I believe that you wanted to know why there is no embryonic stem cell advocacy to the Christopher Reeve Paralysis Bill, especially given Christopher's strong advocacy position on stem cell research.

    A lot of people are talking about the Christopher Reeve Paralysis Act without actually reading it or knowing about its legislative history. Despite my many attempts to encourage people to look at the bill and its sponsors, few people have taken the time to learn about the bill, why it sat dormant in Congress for four years, and what it took to get the bill out of mothballs.

    • First and foremost, the legislation does not specify the therapies that will be studied, other than to indicate that the purpose of the bill is to encourage research of therapies for paralysis, rehabilitation, and to improve quality of life. It specifies approximately $100 million per year for three years, spread out over several governmental agencies but coordinated by the National Institutes of Health (NIH). The legislation was arrived at after extensive negotiations with NIH and sponsors of the legislation.
    • Second, when the bill was initially proposed in 2002, there was no money attached to the bill. I was on an NIH advisory committee at the time and knew about the negotiations. NIH did not want another unfunded mandate, i.e. to be told to do something but without any appropriations to do the job. Likewise, none of the agencies (such as the Veterans Administration) wanted to have an unfunded mandate given the budgetary pressures that all were under.
    • Third, the primary sponsor of the bill in the House of Representatives is Michael Bilirakis from Florida and he opposes embryonic stem cell research and voted against SCREA HR.810. Likewise, several of the sponsors and strongest supporters of CRPA in the Senate, such as Senator Lindsey Graham, strongly oppose embryonic stem cell research. The bill would not have seen the light of day if it contained any mention of embryonic stem cell research. Representative Bilirakis and Senator Graham, for example, spoke to the Rally last year. They were able to do so in support of the bill because it does not indicate embryonic stem cell research. The sponsors of the bill are its most important advocates. They are working very hard to gain bipartisan support of the bill.


    Therefore, the Rally last year focussed on the CRPA and there was a separate push for SCREA. Please note that the push for SCREA was very successful. The Republican dominated House of Representatives voted 238-194 in favor of HR.810 (SCREA). In the Senate, 42 senators have already signed up as sponsors or co-sponsors of the bill. It is estimated that another 20 senators will vote for the bill. The strategy of separating CRPA and SCREA brought the CRPA closer to passage. We actually have a good chance of getting both bills passed in May. Please understand that the primary supporters of CRPA are people, families, and friends of people with spinal cord injury and paralysis, while many other advocacy groups with millions of people support SCREA.

    CRPA is the goal of the Rally and not SCREA for several additional reasons.

    • Stem Cell Research Enhancement Act (SCREA) is an unfunded mandate. It simply allows the NIH to fund research on embryonic stem cell derived from in vitro fertilized blastocysts that are being discarded by the parents. It does not allow NIH to fund somatic cell nuclear transfer, parthenogenesis, or any other method of producing cloned stem cells that would involve the creation or destruction of a blastocyst. As I have already summarized in another post on the subject, the NIH budget is currently embattled with significant cuts of research in many fields. The Senate just passed the Spector-Harkin amendment to restore NIH funding to 2005 levels, not even increasing the budget, and the House of Representatives has not yet proposed or passed a similar amendment. So, the likelihood of significant NIH funding of human embryonic stem cell research is low.

    • President Bush has vowed to veto SCREA and has not backed away from this position despite several visits by delegations from his own party. While Senator Specter (a Republican senaor who is leading the fight for SCREA) believes that he will be able to rally 66 senators to vote for SCREA to overcome a Bush veto, most political analysts believe that it is very unlikely that 290 representatives of the House of Representatives (only 238 voted for it in May 2005) will vote for SCREA to overcome a presidential veto. In such a case, his veto will stand and we would have to wait for the November 2006 elections for the public to send a resounding message by electing a Democratic majority to the House. We are still too far enough away from the election to predict the outcome of the election. If a Republican majority stays in power, we may have to wait for a change in the presidency before SCREA can pass.

    • The House of Representatives has already voted on SCREA and no vote is scheduled for SCREA in the near future. Thus, there is really no point in lobbying representatives from the House on SCREA. A re-vote in the House will only occur if the President vetoes the bill and Senate passes SCREA by a 2/3 vote. Passage of SCREA is a long shot at best. However, many stem cell advocacy groups want Congress to pass SCREA anyway so Bush can be on record on vetoing the bill and this can be used against Republicans in the November 2006 elections. While I understand the frustrations of some people with Bush's obstinate obstruction of embryonic stem cell research, we have to focus our energy on efforts that would make a difference this year.

    In summary, some have claimed on these forums that separation of CRPA and SCREA is anti-ESC. I don't think that this is true. To be sure, there are some who do not support SCREA but it is their right and many others support embryonic stem cell research. The CRPA was stuck in Congressional committees for nearly four years. This may have been because there was no money for the bill and Congress was unable to get the enthusiasm up for another unfunded mandate to NIH. On the other hand, it is possible that the bill was held back because some people thought that the bill promoted embryonic stem cells. Last year, when the bill was revived, the primary sponsor of the bill in the House and several sponsors of the bill in the Senate are against embryonic stem cell research. The CRPA enjoys bipartisan support and should not be part of the embryonic stem cell battle. To now make the CRPA part of the stem cell battle, in my opinion, would jeopardize bipartisan support for the bill.
    Last edited by Wise Young; 04-15-2006 at 08:16 AM.

  2. #2
    Wise;

    Thank you for the clear summation of the CRPA and its relation to the SCREA. I did not realize Bilirakis was an opponent of HR 810.

    John
    "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

  3. #3
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    Quote Originally Posted by Wise Young
    Leif, seeing that you edited your earlier post out... I am using antiquity's post to add an answer to your question. I believe that you wanted to know why there is no embryonic stem cell advocacy to the Christopher Reeve Paralysis Bill, especially given Christopher's strong advocacy position on stem cell research.

    A lot of people are talking about the Christopher Reeve Paralysis Act without actually reading it or knowing about its legislative history. Despite my many attempts to encourage people to look at the bill and its sponsors, few people have taken the time to learn about the bill, why it sat dormant in Congress for four years, and what it took to get the bill out of mothballs.
    • First and foremost, the legislation does not specify the therapies that will be studied, other than to indicate that the purpose of the bill is to encourage research of therapies for paralysis, rehabilitation, and to improve quality of life. It specifies approximately $100 million per year for three years, spread out over several governmental agencies but coordinated by the National Institutes of Health (NIH). The legislation was arrived at after extensive negotiations with NIH and sponsors of the legislation.
    • Second, when the bill was initially proposed in 2002, there was no money attached to the bill. I was on an NIH advisory committee at the time and knew about the negotiations. NIH did not want another unfunded mandate, i.e. to be told to do something but without any appropriations to do the job. Likewise, none of the agencies (such as the Veterans Administration) wanted to have an unfunded mandate given the budgetary pressures that all were under.
    • Third, the primary sponsor of the bill in the House of Representatives is Michael Bilirakis from Florida and he opposes embryonic stem cell research and voted against SCREA HR.810. Likewise, several of the sponsors and strongest supporters of CRPA in the Senate, such as Senator Lindsey Graham, strongly oppose embryonic stem cell research. The bill would not have seen the light of day if it contained any mention of embryonic stem cell research. Representative Bilirakis and Senator Graham, for example, spoke to the Rally last year. They were able to do so in support of the bill because it does not indicate embryonic stem cell research. The sponsors of the bill are its most important advocates. They are working very hard to gain bipartisan support of the bill.
    Therefore, the Rally last year focussed on the CRPA and there was a separate push for SCREA. Please note that the push for SCREA was very successful. The Republican dominated House of Representatives voted 238-194 in favor of HR.810 (SCREA). In the Senate, 42 senators have already signed up as sponsors or co-sponsors of the bill. It is estimated that another 20 senators will vote for the bill. The strategy of separating CRPA and SCREA brought the CRPA closer to passage. We actually have a good chance of getting both bills passed in May. Please understand that the primary supporters of CRPA are people, families, and friends of people with spinal cord injury while many other advocacy groups with millions of people support SCREA.

    CRPA is the goal of the Rally and not SCREA for several additional reasons.

    • Stem Cell Research Enhancement Act (SCREA) is an unfunded mandate. It simply allows the NIH to fund research on embryonic stem cell derived from in vitro fertilized blastocysts that are being discarded by the parents. It does not allow NIH to fund somatic cell nuclear transfer, parthenogenesis, or any other method of producing cloned stem cells that would involve the creation or destruction of a blastocyst. As I have already summarized in another post on the subject, the NIH budget is currently embattled with significant cuts of research in many fields. The Senate just passed the Spector-Harkin amendment to restore NIH funding to 2005 levels, not even increasing the budget, and the House of Representatives has not yet proposed or passed a similar amendment. So, the likelihood of significant NIH funding of human embryonic stem cell research is low.

    • President Bush has vowed to veto SCREA and has not backed away from this position despite several visits by delegations from his own party. While Senator Specter (a Republican senaor who is leading the fight for SCREA) believes that he will be able to rally 66 senators to vote for SCREA to overcome a Bush veto, most political analysts believe that it is very unlikely that 290 representatives of the House of Representatives (only 238 voted for it in May 2005) will vote for SCREA to overcome a presidential veto. In such a case, his veto will stand and we would have to wait for the November 2006 elections for the public to send a resounding message by electing a Democratic majority to the House. We are still too far enough away from the election to predict the outcome of the election. If a Republican majority stays in power, we may have to wait for a change in the presidency before SCREA can pass.

    • The House of Representatives has already voted on SCREA and no vote is scheduled for SCREA in the near future. Thus, there is really no point in lobbying representatives from the House on SCREA. A re-vote in the House will only occur if the President vetoes the bill and Senate passes SCREA by a 2/3 vote. Passage of SCREA is a long shot at best. However, many stem cell advocacy groups want Congress to pass SCREA anyway so Bush can be on record on vetoing the bill and this can be used against Republicans in the November 2006 elections. While I understand the frustrations of some people with Bush's obstinate obstruction of embryonic stem cell research, we have to focus our energy on efforts that would make a difference this year.

    In summary, some have claimed on these forums that separation of CRPA and SCREA is anti-ESC. I don't think that this is true. To be sure, there are some who do not support SCREA but it is their right and many others support embryonic stem cell research. The CRPA was stuck in Congressional committees for nearly four years. This may have been because there was no money for the bill and Congress was unable to get the enthusiasm up for another unfunded mandate to NIH. On the other hand, it is possible that the bill was held back because some people thought that the bill promoted embryonic stem cells. Last year, when the bill was revived, the primary sponsor of the bill in the House and several sponsors of the bill in the Senate are against embryonic stem cell research. The CRPA enjoys bipartisan support and should not be part of the embryonic stem cell battle. To now make the CRPA part of the stem cell battle, in my opinion, would jeopardize bipartisan support for the bill.
    I edited/deleted my posts since I didn’t post them in this thread, they were copied over here out of order and meaning so I thought I better remove them completely.

    Anyway. Thanks for the explanations. I know that the CRPA does not include ESCR and that it is just a general bill as you write here “the legislation does not specify the therapies that will be studied, other than to indicate that the purpose of the bill is to encourage research of therapies for paralysis, rehabilitation, and to improve quality of life”. I believe it is a good thing to rally for the bill and push for it to become a law with the funding included and so on. But I have problems to see this bill as a huge step towards a cure for spinal cord injuries (although small steps are also steps in the right direction). But then again I understand this is not the main objective of the bill either.

    For the HR.810 (SCREA) bill I believe it is good to have this bill to become laws as well, regardless if it is an unfunded bill. Hopefully it could be a step in the right direction and also ease the daily life for some companies – see below quote from and article from today;

    The bill's failure would be a setback for the growing number of Massachusetts firms that are experimenting with embryonic stem cells. Those firms would be in line for millions of dollars in new funding, and many have expressed frustration with federal rules that force them to strictly segregate the equipment and resources they use for experimentation on new lines of stem cells, which can't be supported with federal funds.
    More on Link
    It seems like the push for stem cell funding is stalling on Capitol Hill. Your link to the NIH budgets is also interesting but bad reading for this research. I guess there are several reasons for cut back on budgets these days and to me it doesn’t look good.

    I don’t know the formula for lifting the 2001 ban and to have more funding for this research but I feel the SCI organisations and the stem cell research advocacy organisation, all of them could have done more to help out. If we talk about a cure here I suggest that all the SCI and stem cell advocacy organisations take a weekend off and sit down in roundtable discussions and make a uniform strategy. I also suggest closing down most of the organisations and creating one big organisation for pushing for a cure. To me like it looks like today there is just scattered efforts from time to time advocating for a cure. Those peoples should work together and make their voices heard. And they should focus on a cure if that is what is wanted. And there could be two long term focuses, because like it looks like to me it will take several more years before something will happen, - those objectives could be to lift the 2001 ban and fund all research including embryonic stem cell research. So far the organisations has not done any good job, the proof is in the current situation and the situation is the same as it was several years back in time. – As they say; the potential for improvement is huge.

    I also believe this task (finding a cure) is too huge for private companies and private institutions. Good thing tough that some states are looking into funding this research (both ESCR and ASCR) like your state (NJ). But the problems will still lay there as the ban is there and I also believe that the only thing that could speed up this research is if the Fed’s (Government) gets involved. This is also valid for all countries I believe.

    See below quote from an article regarding NY.

    Spitzer favors research on embryonic stem cells, an avenue of scientific research that has suffered since President Bush prohibited the spending of federal dollars for those purposes.

    A coalition of health and higher education officials, including Albany Medical Center President James Barba and Rensselaer Polytechnic Institute President Shirley Ann Jackson, have been urging New York state leaders to make a serious commitment to fund stem cell research this year.

    They say colleges and private institutions cannot pay for the expensive research by themselves, and they warn that the state's preeminent place in medical research is threatened by the lack of a commitment of state funds. Other states, including Maryland and New Jersey, have set up funding help for stem cell research.
    More on Link
    Seems like the obstacles are enormous, but I hope I am wrong here. Leif
    Last edited by Leif; 04-15-2006 at 08:33 AM.

  4. #4
    Leif,

    Because I have worked in this field since the late 1970's, let me offer several observations.

    1. Consensus. Agreement is not easy to achieve in the spinal cord injury community. Spinal cord injury is a club that nobody chose to join. The desire for cure is maximal during the early years after injury and often declines. Hope waxes and wanes with each news articles. We have people from across the entire political spectrum. About the only time that I have seen consensus on these forums is when there is a new injury and a family is in pain. Perhaps we should lower our expectations for an international organization and hope for something different, that the community would be well informed about care and cure, that people will learn to tolerate each other, that groups of like-minded people would coalesce, and these groups would agree to work together on a common cause for a while.

    2. The Delta Doctrine. During the gulf war, a military approach called the "Powell Doctrine" (i.e. attack with overwhelming force) became popular. I have learned that the Powell Doctrine does not work in politics. I believe in the three P's of politics: people, patience, and persistence. People are all-important in politics. We need to cultivate people who believe in our goals, not only in government but in foundations, companies, and universities. Patience is important because nothing happens the first time in politics. Finally, we must persist. I often tell people that we should not relax even after legislation has passed. We must continue to flow so that the legislation succeeds. A good friend once described successful political process being like a river entering an ocean. When the river encounters an obstacle, it flows around it. I call this the Delta Doctrine, because rivers form deltas when they enter the ocean. Eventually, all obstacles are washed away.

    3. Diversify. I have participated in many attempts to create plans for coordinated research in spinal cord injury. In the early 1980's, an admiral by the name of Dick Van Orden ran the American Paralysis Association, the precursor to the Christopher Reeve Foundation. He brought military planning to spinal cord injury research. I remember spending many days with other scientists in Washington DC in planning sessions, with moderators guiding the discussion, to identify the goals and critically evaluating approaches, preparing primary and contingency plans, and setting up missions. The core lesson that I took away from this experience is that diversity is critical, that no one group has the answer, and that we must allow many groups to approach the problem in their ways. Scientific predictions are, by definition, bound to fail. This is because science advances. Thus, for example, in 1996, I could not have foreseen the advent of stem cell research, the discovery of dedifferentiation, the fact that most people with incomplete spinal cord injury can recover walking, or the necessity for combination therapies. We must encourage diverse approaches.

    I get the feeling that you are a little discouraged but let me try to reassure you that things are much better than they seem. Through the grassroot efforts of many people in the spinal cord injury community, some 22 states have now passed legislation to fund spinal cord injury research. This is probably now providing over $33 million of spinal cord injury research grants per year. This state funding is what is continuing the momentum of spinal cord injury research in the United States despite the cutbacks at the federal level in the United States. Other countries are continuing to invest in spinal cord injury research. But, most important of all, we are continuing to attract some of the best scientists to spinal cord injury research. Most of the scientists in the field today did not start in spinal cord injury but moved into the field, probably initially attracted by the funding but ultimately stayed because of the challenge and the people.

    Regarding stem cells, when it became apparent in 2001 that Bush would be an obstacle, many groups started to work to flow around him. So, first California and then New Jersey passed laws to permit embryonic stem cell research and even therapeutic cloning. California passed Proposition 71 and New Jersey is on the verge of passing its stem cell research bonds. Many other states have followed suit. So, today, the states are funding as much embryonic stem cell research as NIH and will soon surpass NIH. There will be clinical trial funds in the state efforts because the pressure to achieve concrete therapeutic results is much greater at the state level than in the federal government.

    On the other hand, there are certain activities that only the federal government can fund. Clinical trial networks are one such activity. That is one of the reasons why the Christopher Reeve Paralysis Act is so important. While the act does not specify the therapeutic approach, what it will do is invest in the infrastructure for clinical trial networks. The NIH has more experience with networks than any other country in the world. I have now served on NIH advisory boards for over two decades and have seen these networks in operation. Networks are incredibly efficient. They will do for spinal cord injury clinical research what internet did for communications. With $30-$50 million investment per year for three years, it establishes the backbone on top of which many clinical trials can be carried out in the coming years.

    Of course, the above assumes that CRPA is executed properly and is not subject to politics. Thus, passage of CRPA is not enough. We have to ask for transparency, continue to participate, and insist that CRPA delivers the results. The hard work is yet to come. A year or two from now, our arguments will be about what therapies will be tested in the network. It won't look like much progress, but it is progress. We have never been where we are now. Now, you have to make all this happen in Europe.

    Wise.
    Last edited by Wise Young; 04-15-2006 at 03:57 PM.

  5. #5
    Science and politics. This all reminds me of two powerful, huge killer whales tossing around a seal. Question is how does the seal survive?
    Last edited by Lindox; 04-15-2006 at 03:45 PM.
    Life isn't about getting thru the storm but learning to dance in the rain.

  6. #6
    Quote Originally Posted by Leif
    I edited/deleted my posts since I didn’t post them in this thread, they were copied over here out of order and meaning so I thought I better remove them completely.
    Wow...I think if your words were worth typing once, they were probably worth keeping. They were moved to this thread to keep the other thread on topic. I don't understand your reasoning and I am a bit disappointed in your behavior.


    I would like to speak on the topic of advocating for ESC and the CRPA at the same time now. Even though I think rallies should be bill exclusive, I don't think it's a bad thing to do while you are raising awareness and just informing people. In fact, that is what I did last September at my area's local festival. We handed out over 200 SCI information packets and sets of letters to Indiana senators and represenatives concerning the CRPA and the SCREA. The packets contained information about general SCI concerns and every day obsticles, anatomy, levels and degrees of completeness, terminology and definitions, frequently asked questions concerning a cure for SCIs answered by Dr. Young, description and definition of ESC, therapies curently in use, facts and figures concerning numbers and $, and more. So I think you can do both at the same time. I just think rallies should be exclusive to one topic. (kinda like threads)

    Leif, Faye, and Bob, I also don't understand your opposition to my and our efforts at this time. You have all three supported me in the past.


    http://carecure.org/forum/showthread...pcorn+festival


    http://carecure.org/forum/showthread...pcorn+festival

    http://carecure.org/forum/showthread...121#post444121

  7. #7
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    jOE

    Dr. Wise. Thank you for elaborating here. It is really appreciated from my side. And I will reply in a positive manner later on of course because what you write here is super important.

    Joe, I am just me and I appreciate what you are doing, don’t get me wrong and you have my full support for what it’s worth. I just like to discuss all the options we have to help us a little bit if at all possible. But I don’t like my posts moved. But that is just me. No problem and no hearth feelings. - Your thread was and is a good one and it was not my intention to hijack it with respect to my comments. - What you are doing with your thread can result in better life for many peoples, even mine although I don’t live in the US. I sincerely thank you for doing it, and I mean it. Wish you all also all the good luck possible in DC as I have said many times before – I think it is super important to show peoples in wheelchairs regardless of the objectives is for a cure or for a better living or for that matter both of those. I appreciate your efforts. Leif

    Wow...I think if your words were worth typing once, they were probably worth keeping.
    and I still have my words :-)
    Last edited by Leif; 04-15-2006 at 05:22 PM.

  8. #8
    Quote Originally Posted by Leif
    Dr. Wise. Thank you for elaborating here. It is really appreciated from my side. And I will reply in a positive manner later on of course because what you write here is super important.

    Joe, I am just me and I appreciate what you are doing, don’t get me wrong and you have my full support for what it’s worth. I just like to discuss all the options we have to help us a little bit if at all possible. But I don’t like my posts moved. But that is just me. No problem and no hearth feelings. - Your thread was and is a good one and it was not my intention to hijack it with respect to my comments. - What you are doing with your thread can result in better life for many peoples, even mine although I don’t live in the US. I sincerely thank you for doing it, and I mean it. Wish you all also all the good luck possible in DC as I have said many times before – I think it is super important to show peoples in wheelchairs regardless of the objectives is for a cure or for a better living or for that matter both of those. I appreciate your efforts. Leif

    and I still have my words :-)
    Leif, you are welcome. After reading that you deleted your comments because your posts had been moved and were out of order, I decided to move our discussion to a new topic. In a way, I was hijacking the previous topic about different styles of advocacy. So, I moved the posts to this one more suitably named "Rationale for unlinking CRPA and SCREA at last year's rally".

    This topic is not about styles of advocacy. It is about knowing about the issues before people lobby their senators and representatives. The fact that CRPA was sponsored by a Representative who strongly oppose embryonic stem cell research seemed to have escaped many people's attention. I had mistakenly assumed that most people knew this, especially after last year. After all, Michael Bilirakis is Republican and is from Florida (Faye's state). He is a strong advocate for cure of spinal cord injury and a strong opponent of embryonic stem cell research.

    It is about common sense. People need to understand that we should not fight battles that do not need fighting. For example, there is no point arguing SCREA to a member of the House of Representatives who has already voted on that bill and there is no vote scheduled on that bill unless 2/3 of the Senate votes in favor of othe bill, the President vetoes, and the bill returns to the House of Representatives for a re-vote.

    It is about smart lobbying and focussing on what can be done. The only SCREA lobbying that might make some difference is persuade the six or so senators who are sitting on the fence and who might change their votes to overcome a Presidential veto. We should be forming teams and discussing each of the senators in detail, understand who should be the lead person to pitch the ideas to the senators, rather than accusing others of being anti-ESC and the like. It is so frustrating.

    Wise.
    Last edited by Wise Young; 04-16-2006 at 04:10 AM.

  9. #9
    Quote Originally Posted by Wise Young

    We should be forming teams and discussing each of the senators in detail, understand who should be the lead person to pitch the ideas to the senators, rather than accusing others of being anti-ESC and the like. It is so frustrating.

    Wise.
    AMEN

  10. #10
    It is frustrating to think what advocating has come too. The anti-esc lobby has split the community at least this one anyway. I am not a politician who has to please this group and that group and changes his tongue with which group he visits. That would be giving up the fight that CR has so well explained. I also think we should not combine a researcher's needs with those of a patients. They are different. As a patient or caregiver we shouldn't hold back at all and enter in this political maze. We should be upfront. We should support all research and never submit to lowering our standards unless you are willing to accept the consequences which I am not. Are you willing to put another nail in the coffin for esc research.

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