Activism: Lessons from the AIDS movement

[Wise Young]

Activism: Lessons from the AIDS movement

As we approach April 12, the first "grass-roots" rally in Washington DC by people and families with spinal cord injury, tension has developed in our community concerning the goals and direction of the rally. The tension is natural but also stressful. If unchecked, it may lead to a splintering of the movement. Many activist movements have bit the dust because people could not agree on goals and directions or due to personality clashes. So, from this perspective, I wanted to review probably the most successful activism movement of the past two decade.

The AIDS movement began in 1983 when a young gay man in New York City spoke to a breakfast meeting of New York Congressmen and women (Source (http://www.thebody.com/gmhc/issues/feb_mar01/callen.html)). Within 6 years, despite their small numbers at the time and scientific skepticism, NIH devoted nearly 10% of its entire budget to AIDS research, the industry invested billions on moving medicines from the laboratory into clinical trial, and even the FDA changed its rules to accelerate approval of AIDS treatments. When the first effective therapies for AIDS arrived, the government of the United States (and many other countries) paid billions in drug costs for Africa, Southeast Asia, and other countries. Last year, in the midst of probably the worst fiscal deficit in U.S. history, President Bush announced his commitment of $3 billion for AIDS treatments overseas.

How did AIDS activists do this?
• Community consensus. They formed a consensus that was so seamless that nobody inside and outside the movement had any doubts concerning the goals and directions. Of course, there were many differences of opinion within the movement but they always spoke with one voice to the outside. The movement had different organizations that allowed their members different styles of expression. For example, they had ACTUP (which incidentally stands for AIDS Coalition to Unleash Power) for angry and radical members. They had innumerable foundations that worked behind the scenes. They never criticize each other.
• Understanding the problem. Very early on, they understood what they had to achieve to get to a cure. They needed scientists to work on a disease that nobody had heard of before 1981. They needed government and industry to fund the research. They needed the cooperation of the FDA. Once the therapies became available, they needed to find people to pay for the therapies for the indigent. They worked very closely with government, industry, academia, and communities around the world to achieve these goals.
•Â* Effective education. They had to overcome the negative public view that AIDS is a homosexual disease and to educate the world what this disease is. They educated governments, foundations, universities, and ordinary people with a very consistent and effective program that reached around the world. They managed to keep AIDS on the front page of almost every newspaper every day for most the the 1980's and much of the 1990's. It was unrelenting and probably the most effective educational program ever.
• Supporting scientists . The AIDS movement understood from the very beginning that it was a partnership without which the movement would fail. They not only recruited but consistently supported their scientists. They fought for funding for the scientists. They praised them, encouraged them, embraced them, and thanked them. They learned from them and worked with them. You never hear AIDS activists criticize scientists or doctors.

Wise.

[Rick1]

The AIDS Movement.

Is that a "group name" or a "common cause"?

[LetsGo]

Everything Dr. Young has said is right on target. What saddens and bewilders me the most is how the SCI community criticizes itself and attacks the very people who are doing the most for the movement - especially in the scientific, philanthropic and advocacy areas.

People need your support. These scientists have chosen to go into paralysis research. They don't have to and there are so many other diseases who would love to have some of the best scientists in the world researching their illness.

The SCI community bites the hand that feeds them. This is sad and if not changed, your movement will not go anywhere because it you will have killed any hope of people stepping forward and being a leader with the continued attacks.

The choice is yours. It will be interesting to see how you respond. Good luck.

[Faye]

Originally posted by Rick:

_The AIDS Movement._

Is that a "group name" or a "common cause"?

The Community HIV/AIDS Mobilization Project (CHAMP) is a national initiative building a powerful community-based movement bridging HIV/AIDS, human rights, and struggles for social and economic justice. In an era in which HIV rates are rising and prevention efforts are under concerted attack, CHAMP mobilizes people living with HIV, community activists, researchers, academics and policy advocates in our country, and links them with allies around the world.

CHAMP arms a new generation of leaders with tools and resources to challenge and change HIV/AIDS prevention policies; to attack the root causes of the epidemic such as poverty, homophobia and racism; and to sustain and expand our movements for justice. We unite across communities facing high rates of HIV, through community organizing, strategy development, media efforts, and training in popular education, history, critical thinking, and data analysis.



How We Do It

CHAMP is building a vibrant and solid activist infrastructure. As an intergenerational, cross-community alliance, CHAMP is setting the stage for new victories in the fight against HIV/AIDS.
CHAMP's Strategy Lab brings together an animated and insightful group of thinkers and troublemakers to craft the strategic pathways linking HIV research, policies and programs to movements for social change. We are dedicated to articulating realistic plans for action - not just reports on the problems.

Then, the CHAMP Academy unlocks the power of AIDS service and community-based organizations, through innovative training sessions designed to break through the myths and barriers to organizing in our hard-won service and advocacy groups.
These training sessions allow us to meet fantastic community leaders long frustrated by a lack of support for outright mobilization and grassroots activism.

We invite them to join our Prevention Justice Course, an intergenerational, intensive organizer training program in which they share and learn skills in media, organizing and policy work.

~ People acting together as a group can accomplish things which no individual acting alone could ever hope to bring about. - Franklin D. Roosevelt ~ www.CureParalysisNow.org (http://www.CureParalysisNow.org)

[This message was edited by Faye on 04-03-05 at 04:57 PM.]

[Faye]

Originally posted by Rick:

_The AIDS Movement._

Is that a "group name" or a "common cause"?
Actually Rick, Cure Paralysis Now could be both....a common cause and a group name. We will see how things evolve. http://sci.rutgers.edu/forum/images/smilies/wink.gif

~ People acting together as a group can accomplish things which no individual acting alone could ever hope to bring about. - Franklin D. Roosevelt ~ www.CureParalysisNow.org (http://www.CureParalysisNow.org)

[Rick1]

If I'm a part of the Paralysis Movement, does that make me an oxymoron? http://sci.rutgers.edu/forum/images/smilies/smile.gif

[Faye]

Originally posted by Rick:

If I'm a part of the _Paralysis Movement_, does that make me an oxymoron? http://sci.rutgers.edu/forum/images/smilies/smile.gif
Sure sounds like it http://sci.rutgers.edu/forum/images/smilies/wink.gif

I guess that's why many in the "AIDS Movement" actually are part of the AIDS Treatment Access Movement.
We should have room for many activism movements. I know I like being part of the Cure Paralysis Now Movement.

But we could also start our own SCI Cure Treatment Access Movement and use Dr. Young's definition of SCI to make it a very large movement. http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

ACTUP ( mentioned by Dr. Young ) is one of the longest lasting AIDS movements around.

~ People acting together as a group can accomplish things which no individual acting alone could ever hope to bring about. - Franklin D. Roosevelt ~ www.CureParalysisNow.org (http://www.CureParalysisNow.org)

[Clipper]

Fact 1: The rally was born on CareCure with diverse insight, contribution and participation.

Fact 2: "Cure Paralysis Now" was never named the official organizer of this event. CPN granted use of its Web site - that's it.

Fact 3: There are numerous people who support cure efforts but do not fully support the efforts of CPN. For example, one thread many months ago was critical of the aggressive wording on the CPN Web site - long before the rally. Likewise, not everyone who supports cure efforts agrees with MP or CRPF. That's why a collaborative effort is needed.

Fact 4: It is absolutely plausible for an "activist movement" to exist and flourish WITHOUT uniting under a single banner organization. This rally is weakened by the efforts of certain individuals who wish to use the event to further the goals of a single organization - CPN.

CC members have been deceived.

[beachlover]

Dear Dr. Young -
I think your points are well taken.

I wonder if you would comment on how the AIDS community was able to overcome the 'in-fighting' between AIDS researchers (i.e. the NIH vs. the French reseachers who both laid claim to discovering the virus). It would be a shame to see SCI advances get hung up with organizations and researchers wanting to trademark the cure rather than applying and sharing their knowledge with each other.

Also how was the AIDS community able to circumvent the government bureaucracy (i.e. the CDC) and the private non-profits (the Red Cross and Blood Banks) which were more concerned with being right, following epidimelogical protocol and protecting their "assets" than affecting change when it applied to AIDS?

For those who aren't familiar with my references I would suggest reading "and the band played on" which is a fairly cynical book and later movie that was highly critical of the CDC, NIH, Red Cross, Blood Banks and the Reagan administration handling of the AIDS crisis. The author was a highly respected San Francisco journalist who later died from the disease.

It would be a shame if the SCI cause splinters and can not achieve a similar funding and movement that the AIDS community has brought to bear for individuals affected.

Thanks again, Dr. Young. You give so much information, and through information, hope to many.

[Christopher Paddon]

You only need to go to New Mobility to find out how divided sci people are about a cure.

A very small percentage of sci people think a cure is possible and that is a barrier to getting substantial numbers of people involved.

The idea of a cure is knocked out of people in rehab.

[betheny]

beachlover-
That is a great book.

Writing your legislators now means they know we are serious when we get to DC! Grease the wheels for us if you can't go! congress.org for addresses. Tell them SCI care is $14 billion a year, SCI clinical trial network can be started for $300 million. And don't forget...We are not asking for any controversial cellular type research.

[Faye]

Originally posted by Chris2:

You only need to go to New Mobility to find out how divided sci people are about a cure.

A very small percentage of sci people think a cure is possible and that is a barrier to getting substantial numbers of people involved.

The idea of a cure is knocked out of people in rehab.
This is what Debbie refers to as brainwashing. Chris2, I agree that this is one of the main barriers to getting substantial numbers of people involved. A strong campaign of PSA's, billboards and the like could solve this problem of lack of awareness fairly quickly, and can be followed by educational info via a website.

It's all about messaging the SCI population at large as well as the general public.

The Washington Rally will make a major impact but it's only a start to augmenting what many individuals on CC have been doing for years on an independent level.

Hopefully we will witness an explosion of awareness like the AIDS movement was able to realize. http://sci.rutgers.edu/forum/images/smilies/cool.gif

~ People acting together as a group can accomplish things which no individual acting alone could ever hope to bring about. - Franklin D. Roosevelt ~ www.CureParalysisNow.org (http://www.CureParalysisNow.org)

[duramater]

The idea of a cure is knocked out of people in rehab.

I realize it is not much, not nearly the impact you would like, as my influence is nearly nothing but for what it is worth, the rehab department where I work, is aware of the Spring Rally, and has the bracelets and has been supportive. My department unit manager donated from her own pocket, to the Rally for Cure and released me to go last year. I believe this is a baby step of course ..hardly anything, but I have done this simply by talking and kindness and the passage of appropriate information. If you want to infuse the message back into rehab..go back and volunteer there. Talk to people and show how an infusion of hope can in fact enhance rehab rather than retard it. Make it a clear message. Be the example of a person who has been improved by the infusion of hope. Some of the CC members are infectious that way, able to make people see that where they are is no fun and there is a true reason to believe and act now. Be positive influences in the front of the people who are new to the nightmare. In order to win, you have to be seen. Plain and simple. The only thing anyone has a right to expect from anyone else, is their best. Good Luck all...see you in DC!
Mary

Don't let the past keep a chokehold on your future.
Thanks Max.

[Wise Young]

Originally posted by beachlover:

Dear Dr. Young -
I think your points are well taken.

I wonder if you would comment on how the AIDS community was able to overcome the 'in-fighting' between AIDS researchers (i.e. the NIH vs. the French reseachers who both laid claim to discovering the virus). It would be a shame to see SCI advances get hung up with organizations and researchers wanting to trademark the cure rather than applying and sharing their knowledge with each other.

Also how was the AIDS community able to circumvent the government bureaucracy (i.e. the CDC) and the private non-profits (the Red Cross and Blood Banks) which were more concerned with being right, following epidimelogical protocol and protecting their "assets" than affecting change when it applied to AIDS?

For those who aren't familiar with my references I would suggest reading "and the band played on" which is a fairly cynical book and later movie that was highly critical of the CDC, NIH, Red Cross, Blood Banks and the Reagan administration handling of the AIDS crisis. The author was a highly respected San Francisco journalist who later died from the disease.

It would be a shame if the SCI cause splinters and can not achieve a similar funding and movement that the AIDS community has brought to bear for individuals affected.

Thanks again, Dr. Young. You give so much information, and through information, hope to many.

Beachlover,

Thank you for your post. There was indeed a lot of fighting between AIDS researchers. This is natural and will happen amongst spinal cord injury researchers as the "cure" gets closer. The community should not take sides on such struggles and try to help scientists work together.

When huge amounts of money began coming out for AIDS research and treatment, different organizations fought over the money. Again, what the AIDS community did was to be there to remind people what the goals are and to make sure that organizations worked together.

Yes, many AIDS activists have indeed criticized the government handling of the AIDS crisis. But, at the same time, many AIDS activists worked within the government to make sure that its agenda was given a high priority. It succeeded.

A "movement" need not be uniform. The AIDS movement certainly was not uniform. There were cure and care components of the AIDS movement like there are now for SCI. I am sure that there were some who believed that U.S. funds should be spent in the U.S. instead of overseas. There were radical groups who felt that sit-ins and protests were the approach while there were others who believed that the strategy should be to work quietly within the government. However, they co-existed and did not criticize each other. They worked together.

Wise.

[Faye]

WOW, the estimate on the cumulative diagnoses of AIDS is remarkably close to the figure we would roughly arrive at for SCI, using Dr. Young's definition of SCI!

AIDS Cases

In 2003, the estimated number of diagnoses of AIDS in the United States was 43,171. Adult and adolescent AIDS cases totaled 43,112 with 31,614 cases in males and 11,498 cases in females. Also in 2003, there were 59 AIDS cases estimated in children under age 13.


The cumulative estimated number of diagnoses of AIDS through 2003 in the United States is 929,985. Adult and adolescent AIDS cases total 920,566 with 749,887 cases in males and 170,679 cases in females. Through the same time period, 9,419 AIDS cases were estimated in children under age 13.


This is where our power lies. SCI is certainly as large a group of folks as the AIDS contingent!!!! http://sci.rutgers.edu/forum/images/smilies/cool.gif

~ People acting together as a group can accomplish things which no individual acting alone could ever hope to bring about. - Franklin D. Roosevelt ~ www.CureParalysisNow.org (http://www.CureParalysisNow.org)

[Wise Young]

Faye, in the 1980's, the number of people affected with AIDS was much smaller than the spinal cord injury community. In my opinion, numbers are only a small part of the argument that must be made. The most important argument for funding is that it will lead to restorative therapies for spinal cord injury and even cure. Few would challenge the statement that cure for spinal cord injury would be one of the greatest achievements in human history and that it would change the lives of millions of people. The reason that more money is not being invested is lack of hope. Lack of hope was most clearly expressed by Senator Bill Frist when he lashed out at John Kerry for expressing the commitment to get people like Christopher Reeve out of their wheelchairs. Frist said that it was not going to happen and that Kerry was giving people false hope. If Senator Frist really believed that, and there are other senators who believe that, we will not be getting any funding for cure research. It would be wasting money. That is the argument that must be made to Congress. The argument that millions of families will benefit is icing on the cake. The real issue is hope, not the number of people affected.

Wise.

[DA]

dr young, bill frist is not a doctor. bill frist gets his information from the experts. what good politican wouldn't? you can always blame the expert if your wrong. ANYWAY, it is the doctors who continue to spread no hope message. that message is then echoed by the media and bill frist of the world. we will never gain traction as long as doctors continue to preach no cure ever. we will never convince doctors of their error until we can show a cure. CATCH-22.

[Wise Young]

DA, look up the credential of Bill Frist, M.D.

Wise.

[Faye]

Originally posted by DA:

dr young, bill frist is not a doctor. bill frist gets his information from the experts. what good politican wouldn't? you can always blame the expert if your wrong. ANYWAY, it is the doctors who continue to spread no hope message. that message is then echoed by the media and bill frist of the world. we will never gain traction as long as doctors continue to preach no cure ever. we will never convince doctors of their error until we can show a cure. CATCH-22.
DA, you are so right!! We may have to begin with educating the doctors, like Frist himself. I'm going to try to see if I can meet with Weldon. Anyone have an appointment with Frist? I'd love to sit in at that appointment.

BTW DA, people gladly believe the doctors so that may be a very good place to start changing catch 22!!! They must have been too busy to keep up with the latest and we can help to educate them! http://sci.rutgers.edu/forum/images/smilies/cool.gif

Also no one is going to deny a child their hope!

~ People acting together as a group can accomplish things which no individual acting alone could ever hope to bring about. - Franklin D. Roosevelt ~ www.CureParalysisNow.org (http://www.CureParalysisNow.org)

[This message was edited by Faye on 04-04-05 at 03:14 PM.]

[Faye]

Originally posted by Wise Young:

The real issue is hope, not the number of people affected.

Wise.
It's rather empowering to ourselves that we are part of such a large group, similar in size to the AIDS folks.
As far as convincing a legislator, I am always reminded of Senator Orin Hatch who wrote in his book that it was a little girl who was dying and who came to talk with him about stem cells, who changed his mind about ESCR.
The little girl later died from her affliction.

One single individual's story can be so compelling that a politician can change his/her mind on an issue.

At the same time it's great to be able to say that you are one of millions with the same affliction ( even though from different causes ).
Same is true for different causes of AIDS:
1. from sexual relations, both gay/lesbian and straight
2. needle sharing
3. from birth to an AIDS infected mom
4. hemopheliacs

The AIDS movement represents them all. And each individual speaker also represents everyone with AIDS regardless of cause.

~ People acting together as a group can accomplish things which no individual acting alone could ever hope to bring about. - Franklin D. Roosevelt ~ www.CureParalysisNow.org (http://www.CureParalysisNow.org)

[Wise Young]

Faye, I agree. Likewise, I agree that it is important for us to identify Senators who don't believe but would be willing to listen. Wise.

[bostondad]

Faye & Dr Young,

I thought this excerpt from the BJM article cited below is quite compelling and so relevant to Dr. Frist as a cardiac tranplant surgeon. Doctor Barnard broke from the pack to do what had never been done before." What inhibited US surgeons were ethical and legal considerations rather than technical skill." Had Dr. Barnard not risen above the concerns of that period Dr. Frist may not have had the opportunity to save lives. Maybe we should remind Dr. Frist of this and convince him to take a long hard look at the "Hope" Dr. Barnard gave "hopeless patients".

http://bmj.bmjjournals.com/cgi/content/full/323/7327/1478



"By the late 1960s several US cardiac surgeons, notably Norman Shumway, had spent years trying to perfect heart transplantation, largely through experiments on dogs. They were ready to transfer the operation to humans but were concerned about the ethics and, more importantly, the legality of "killing" a person by removing the heart. In comparison, Barnard's preparatory experimental work in heart transplantation was negligible, and many Americans to this day think he jumped the gun to get ahead of the front runners in the field. The operation itself was not considered technically difficult compared with, say, surgery to repair complex congenital cardiac deformity. What inhibited US surgeons were ethical and legal considerations rather than technical skill. Opinion in South Africa was more permissive, the removal of the heart did not arouse such strong feelings of abhorrence, there was less likelihood of criticism that this would, in fact, "kill" the donor. Fewer questions would have been asked and there would have been less accountability had the operation failed. And, in Barnard, South Africa had a man who was prepared to act and then face the consequences."

[This message was edited by Bostondad on 04-04-05 at 09:11 PM.]

[Wise Young]

BostonDad, thanks. Wise.

[alan]

AIDS is fatal. SCI is not. Seems that fatal illnesses get more attention from the public than chronic, non-fatal conditions like SCI.

Alan

There's a fungus among us, and I'm not lichen it!

Nerve Center Telnet BBS - tncbbs.no-ip.com

[Curt Leatherbee]

It sure was fatal for Chris Reeve.

[DA]

Originally posted by alan:

AIDS is fatal. SCI is not. Seems that fatal illnesses get more attention from the public than chronic, non-fatal conditions like SCI.

Alan

There's a fungus among us, and I'm not lichen it!

Nerve Center Telnet BBS - tncbbs.no-ip.com

sci was fatal to cr.



your right dr young, i was thinking of the idiot from kansas...however my post still stands. i look like a desperate delusional quad talking cure research when doctors are smirking over my shoulders, "not in a 1,000 years".

[chick]

Originally posted by Wise Young:

In my opinion, numbers are only a small part of the argument that must be made. The most important argument for funding is that it will lead to restorative therapies for spinal cord injury and even cure.....The reason that more money is not being invested is lack of hope.

That (Hope) is the argument that must be made to Congress. The argument that millions of families will benefit is icing on the cake. The real issue is hope, not the number of people affected. I agree that the most important argument for funding is that it will lead to restorative therapies or even cure of SCI. I can also agree that Hope, or the lack thereof, is reason given by some to not fund further research for CURE. However, in my opinion, it is more a convenient excuse than sincere argument being made by those in Congress (ie Frist). Some may believe it is hopeless to bother investing in more curative efforts regarding SCI, but that stems in part from the lack of urgency, a lack of their belief in a NEED for a cure. An economic argument can be made about the monies spent on care compared to cure efforts, but until cure is achieved, monies to cure research will be IN ADDITION to monies already dedicated to Care. Government is resistent to high dollar short term investment when they don't see any guarantee or perhaps even "hope" for some eventual benefit above the invested amount.

So, will Hope encourage progressive action and committment to invest public dollars? How does Hope come about? Where does it come from and Why?

Do people have to care in something to have hope? Or even, simply understand a need, without emotional ties, to understand the social and financial incentive to make the investment?

But, there has to be a NEED, no? That Need can be ACTUAL or Political.... or BOTH. Sometimes, one can't exist without the other (when it comes to gov't and social action).

What's my point?

Numbers can't be dismissed, and the framing of activism around those numbers (framing of arguments, building meaning/purpose and defining/clarifying "needs, etc), are critical to shaping how we understand a problem ... or maybe more importantly, the URGENCY of a problem.

AIDS diagnosis (stated below), is est. new diagnosis of AIDS per 2003, NOT HIV infection/incidence. Cumulative is also of AIDS diagnosis, NOT HIV. Estimated HIV incidence is estimated 950,000, which doubles the figures. The HIV rate is an UNDERESTIMATE as well, given it is estimated on those participating in reporting, and limited to those who are testing and included in surveillence (among other limits in methodology).

Throughout the 1980's, AIDS became suddenly and rapidly a serious public health issue, with people aflicted increasing at an amazing rate - with fatality rate up to 67%:
Timeline
June, 1981 -- 5 cases
July, 1981 -- 6
Aug. 1981 -- 108
June, 1982 -- 355
Sept, 1982 -- 593
June, 1983 -- 1,641
Aug. 1983 -- 1,972
Sept, 1983 -- 2,259
Jan., 1984 -- 3,000
June, 1984 -- 4,918
Nov., 1984 -- 6,993
May 10, 1985 -- 10,000
(source: HIV and the Blood Supply, I.O.M. 1995)

Is there the same urgency with SCI? (plz, ALL, this is referring to public urgency, not personally felt or experienced urgency)

If not, where does any need for Hope come from? Why should anyone (policymakers) bother having hope for SCI?

There is relative stability when it comes to SCI. People, the public, almost view it as a "lifestyle" change, not a real health concern.

It's almost easier for gov't to maintain status quo than to disrupt it, even if it is ultimately more costly.

Why should gov't shake this stagnancy?

**knowing how members many times react without understanding intent of a post, let me posit here that I am not advocating gov't do nothing

[chick]

Also, wanted to add -
that after all the efforts to increase awareness and change public opinion about AIDS, and the funds dedicated to research and treatment throughtout the 80's and 90's, AIDS somewhat stabalized, with new infections not increasing as fast and people living longer with the virus due to medicines and other therapies. Prevention became less a priority, with reduction in funding. This and general desensitization by both the people at risk and the general public, has contributed to an increasing rate in certain populations.
The urgency was diminished.
Despite the monies, it has become about "stabalization and maintnence" (ie CARE).

[Faye]

Originally posted by chick:


Numbers can't be dismissed, and the framing of activism around those numbers (framing of arguments, building meaning/purpose and defining/clarifying "needs, etc), are critical to shaping how we understand a problem ... or maybe more importantly, the URGENCY of a problem.

AIDS diagnosis (stated below), is est. new diagnosis of AIDS per 2003, NOT HIV infection/incidence. Cumulative is also of AIDS diagnosis, NOT HIV. Estimated HIV incidence is estimated 950,000, which doubles the figures. The HIV rate is an UNDERESTIMATE as well, given it is estimated on those participating in reporting, and limited to those who are testing and included in surveillence (among other limits in methodology).


Thank you chick. I agree. Unfortunately privately steering committee members have characterized my opinion as HORSESHIT. I have endured extremely abusive behavior from the block of three who thinks they control everything.

~ People acting together as a group can accomplish things which no individual acting alone could ever hope to bring about. - Franklin D. Roosevelt ~ www.CureParalysisNow.org (http://www.CureParalysisNow.org)

[chick]

My posts below were only relating to this thread and initiated by comment made by Wise. I am not following what has been going on regarding the Rally (honestly, read portion of one Rally thread and was instantly turned off).

Good thread Wise. These and other lessons should be more closely examined and hopefully gain from.

[Wise Young]

Faye, I agree that numbers do matter. When numbers are too small, people don't pay attention to you. However, numbers alone do not make the case. If numbers could make the case, traumatic brain injury (TBI) research would be getting 10 times more money than spinal cord injury.

Chick, yes, the lack of a sense of urgency concerning spinal cord injury is a major obstacle to funding. Funding is of course all about priority. When something is not urgent, it is placed lower on the priority list. The AIDS community can point to the worldwide epidemic, the death toll in Africa, and the growing number of deaths as reasons for action. The spinal cord injury field cannot point to a similar emergency.

I am not sure how to make the priority argument as well as the hope argument. One can use the economic argument, i.e. $14 billion per year or whatever for care costs. But, there are many other diseases that are more numerous and costly, including head injury, stroke, alzheimer's and parkinson's diseases, etc., etc.

I think that we can make a strong argument for hope. Most scientists today believe that the spinal cord can regenerate, dozens of therapies have been shown to be beneficial in animal models and few of these are going into clinical trials. In fact, there are more spinal cord injury clinical trials going on overseas than in the United States. That's a shame on us.

Many disease lobbies (particularly pediatric) use the sympathy factor. However, there has been strong tendency of the ADA movement to avoid the sympathy appeal. Christopher Reeve likewise avoided that. He did not ask people to feel sorry for him. He asked them to care, to hope, and to commit.

Some people have used the fear factor, i.e. it can happen to you, too. Most people don't think that something bad will happen to them until it happens. This sometimes works.

Christopher Reeve used the empathy factor very effectively. He of course did not have to say it outright but many people wondered what they would do if they were in his place. I had many people say that to me after they saw Christopher on 20/20. One woman asked her husband whether he would still love her.

Finally, we can appeal to the desire of politicians to do good. Most of them went into politics because they wanted to do good things. There is a Jewish word, mitsvah which means a good deed performed out of religious duty. It is mitzvah to cure spinal cord injury. If we can, we should. It is unethical not to.

Wise.

[Wise Young]

DA, you are right. Pessimism amongst doctors is still a problem. It is important that the doctors get behind the cure movement. Back in 1997, I wrote an editorial for Science Magazine called Fear of Hope. http://www.sciencemag.org/cgi/content/summary/277/5334/1907 Please remember, this was written when there were only a few therapies that regenerated the spinal cord, before stem cells had come on the scene, but at the time when the first olfactory ensheating glial transplants from nasal mucosa were reported to improve functional recovery in rats.

Science, Vol 277, Issue 5334, 1907 , 26 September 1997

Fear of Hope
Wise Young

For centuries, physicians have taken special pains to dash the hopes of people who have suffered spinal cord injury. Over 2000 years ago, an anonymous Egyptian physician recommended that water be withheld from spinal-injured warriors.* Until recently, clinical pessimism was so rampant that medical personnel often did not treat spinal cord injuries as true medical emergencies. Many clinicians felt compelled to tell patients and their families that they should not expect recovery from spinal cord injury, even though clinical and laboratory data suggest that some recovery is not only possible but likely. For example, the National Acute Spinal Cord Injury Study showed that patients who arrive at hospitals with the slightest motor or sensory function below the injury site will typically recover 59% of lost motor function within a year. Even severely injured patients admitted with no voluntary motor or sensory function below the injury site typically recover 8% of their pre-injury abilities.

On page 2000 of this issue, Li et al. report an exciting finding that adds to a growing body of evidence indicating that regeneration and functional recovery can occur after spinal cord injury. The authors report that adult rat epithelial cells taken from the lining of the nose and transplanted into injured rat spinal cords significantly improve the ability of the animals to retrieve food pellets with their forepaws, presumably by encouraging regrowth of the severed axons. These results join and reinforce evidence from other groups, all reporting corticospinal regeneration and behavioral recovery in adult rats with injured spinal cords. Injured rats can be treated with antibodies that accelerate regeneration., Or wounded spinal cords can be treated with genetically engineered cells or fetal cells or tissue to stimulate regeneration.||, ¶, # These encouraging results have been well publicized and some have criticized such studies for giving premature hope to the spinal injury community.

What is the harm of hope? Undue optimism may mislead some people to develop unrealistic expectations and suffer depression when these expectations are not met. Anticipation of impending cures may encourage many to postpone therapies that would benefit them today. A few may even find enthusiastic clinicians who are willing to apply unproven experimental therapies on them. Fortunately, effective checks and balances exist at many levels to stem false hope. Concern that journalists and the public may misinterpret scientific results often leads researchers to present clinically relevant results with greater circumspection. Scientific journal reviewers usually require a higher level of proof for clinically relevant claims. Responsible journalists usually check their sources carefully and provide balanced commentary from experts when reporting therapeutic safety and efficacy. Finally, people with disabilities are not so naïve. Balancing hope and reality is a daily struggle for them. All people with disabilities have lived through surges of hope resulting from media reports of "cures." Many have adopted the philosophy of planning for the worst but hoping for the best.

Spinal cord injury research is now poised at a crucial stage. Expectations of effective therapies for spinal cord injury have been raised. Although many neuroscientists are confident that such therapies will be developed, a wide gulf separates laboratory demonstrations of rats walking and effective human therapy. Migration of therapy from laboratory to clinic may take many years. Pessimists should not be telling people with spinal cord injury that they have no hope for recovery, nor should optimists predict availability of effective therapies within a short time frame. Future reports of spinal cord injury therapies must strike a careful balance between hope and reality. This balance should err on the conservative side but at the same time not deprive people of hope.

[DA]

What is the harm of hope? Undue optimism may mislead some people to develop unrealistic expectations and suffer depression when these expectations are not met. Anticipation of impending cures may encourage many to postpone therapies that would benefit them today.

why does this only apply to us? why not cancer or aids? everyone in the world knows how to act when faced with a disease or disability except the sci community.



A few may even find enthusiastic clinicians who are willing to apply unproven experimental therapies on them.


LOL, we could never be so lucky.

[Wise Young]

DA, good questions. I am old enough so that I can provide some perspective on both AIDS and cancer.

Perhaps cancer and AIDS managed to conquer the pessimism of doctors but they once existed for both conditions. I remember the first time I saw AIDS patients in 1979. We had no idea what it was, just young men with multiple tumors in their heads. I remember how we were puzzled by this disease and referred to it as "ear-ring syndrome" because the first patient had ear-rings that showed on the x-rays. We had no idea that it was from a virus. We operated on these cases, not realizing how we were putting ourselves at risk. When it became clear it was due to a virus and the first tests for the virus became available, the residents kept the test kits in the residents' room (to test ourselves in case we pricked our fingers with infected needles). Fear was widespread amongst the doctors and staff. I remember thinking that it is like rabies, a disease for which there were no treatment once it was in the brain. Pessimism was rampant amongst doctors in 1983 when the AIDS movement started. We had no effective treatments for viruses.

I was in medical/graduate school in the early 1970's when President Nixon announced the War on Cancer. I remember shrugging at this announcement and did not really think about the audacity of this announcement until I took care of my first cancer patients. It was very traumatic for me to see my patients die. I didn't want to go home at nights on my night off because I was afraid that they would die and I would not be there. In 1994, when Arthur Ullian and I went to Congress to lobby for the doubling of NIH, I remember the staffers scoffing at the idea of cure of diseases. They said that medical research was a black hole that kept on taking money and never yielded anything but increased medical care costs. They asked Arthur and me whether the War on Cancer declared by Nixon ever yielded anything but increase care costs. They told us we had to get our grassroots support and come back.

Arthur had the incredible idea of getting people to write letters to Clinton to a mailbox in Hope, Arkanasas (where Clinton was born). We asked all the families with spinal cord injury to write letters. Thousands of letters went to Hope and was delivered by truck to Washington DC where we held a rally. The Neurotrauma and Neuroscience meetings were being held at Washington DC at the time. I stood at the front door of the meeting and passed out thousands of flyers, asking all my friends and anybody who would listen to come to the rally on the lawn at the Capitol. In the end, perhaps two dozen people showed. It was disappointing. I gave a speech... I jotted it down on a piece of paper... based on Martin Luther King's "I have a dream..." The microphone amplified sound of my voice echoed and it was a very lonely feeling. I remember sitting in front of the plaza of the hotel with Arthur and he asked me whether this "cure" that I spoke about in the speech would ever help him. I was shocked by his question. That was only a decade ago but it feels like a lifetime.

Listen, I give you a hard time for attacking doctors for their pessimism. But it was the pessimism of my colleagues that radicalized me. I lost my sheen of idealism after we published our 1990 NASCIS study in the New England Journal of Medicine showing that methylprednisolone works for acute spinal cord injury and less than half of people who got spinal cord injury in 1991-92 received the drug, because doctors did not believe that anything could help in spinal cord injury. I knew in my heart that Christopher Reeve was right when he said that our first step must be hope, not only in the hearts of our political leaders but also in the doctors who care for the patients.

Wise.

[MHemenway]

When my daughter was first injured last year we never argued with her doctors on any medical issues... it was always on hope. We would say we were hopeful that she would continue to get better and they would tell us that getting her hopes up about recovery was wrong. This argument followed us to rehab and then to outpatient therapy and now to our follow up appointments with the neurosurgeon and physiatrist.

It wasn't until about 8 months later when I read an article about Susan Fajt and then found this site that I finally didn't think I was crazy for having hope.

Thank you again for all your work Dr. Young. I firmly believe, and have believed since she was first injured, that the methylprednisolone she received right after her injury is what kept her an incomplete injury and gives us "hope" that she will continue to recover even more than she has.

[Sue Pendleton]

You know there is another problem with hope and that is why the politicians should want to fund us (SCI). Hope is expensive. All the people I know who have a spinal cord injury or like condition know a lot about their disability. They have access to computers at home, school or public libraries. We know about progress in regeneration and neuroprotection before our doctors do. We know when a new generation of drug for side maladies of our condition are approved and we know why they are an improvement over our current drug.

Because we have hope we have learned how to stay as healthy as possible. We take advantage of the health we have just remaining in our own homes. Hope that past generations never had and they died much younger than we are dying. They suffered hope killing complications at rates hundreds of times higher than today.

Better overall medicine in the developed world and legislation like the ADA have led the way for more hope. Because hope grows exponentionally with each new discovery; each new rehabilitative theory, each new piece of adaptive equipment.

When a technique is proven to help in physical, occupational or vocational therapy insurance is then at a wall where they must pay for the treatment. As soon as a patient no longer has to pay the full cost of an item, the cost of the item goes up. My Easy Stand standing frame was much cheaper in 1995 than the same, more mass produced, item is today. Self contained catheter kits are paid for when justified by 2 very easy to acquire infections. We stay healtheir. We live longer. We cost more to care for and then we get to the point where children are mainstreamed into the public school system and the cost roars as each school requires a PT, OT and aides. Hope is expensive. A cure becomes cheaper as that tiger hope grows...

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

[Wise Young]

Sue,

Yes, without hope, why should people take care of their bodies? That tiger hope... striped with eyes gleaming in the dark, springs out at you.

Wise.

[antiquity]

I stood at the front door of the meeting and passed out thousands of flyers, asking all my friends and anybody who would listen to come to the rally on the lawn at the Capitol. In the end, perhaps two dozen people showed. It was disappointing. I gave a speech... I jotted it down on a piece of paper... based on Martin Luther King's "I have a dream..." The microphone amplified sound of my voice echoed and it was a very lonely feeling.

Very moving Dr. Young. You must be proud of the rally participants, your hard work has paid off. It would not have been possible without your patience, guidance and relentless drive to promote and maintain the message of hope within our community. Thank you for being the lone voice of optimism and allowing us to hope.

[This message was edited by seneca on 04-08-05 at 07:01 AM.]

[bigbob]

Thank you for being the lone voice of optimism and allowing us to hope

Although, as members of CareCure we get a daily Dose of Dr. Youngs optimism, there are many other doctors who are working extremely hard and have therapies ready for trial, but with lack of funding may sit on the shelf.

We must point out that the Cure is not such a isolated Dream, and many Doctors support it and are working on it but need more funding.

[Lindox]

Originally posted by Wise Young:

Sue,

Yes, without hope, why should people take care of their bodies? That tiger hope... striped with eyes gleaming in the dark, springs out at you.

Wise.

Even if the tiger goes extinct..it's still
alright to take care of your body to the best of your ability. After all that's what your head sits on.

[Wise Young]

Sorry, I am not much of a poet. I was trying for a haiku poem, inspired by SueP. Haiku poems have a metrical pattern of 5. 7, 5 syllables. So it should be

That tiger hope striped
with eyes gleaming in the dark
springs right out at you

Wise.

[Sue Pendleton]

Originally posted by Wise Young:

That tiger hope striped
with eyes gleaming in the dark
springs right out at you

Wise.

Beautiful and concise, Wise. I will never be a Hemingway. hehe Ramble on too much.

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

[duramater]

A Poem:

I can't wait
to see
Sue P
again.

She rocks.

By Mary, Neuroscience Nurse
and non poet.

Don't let the past keep a chokehold on your future.

[poonsuzanne]

Originally posted by seneca:

I stood at the front door of the meeting and passed out thousands of flyers, asking all my friends and anybody who would listen to come to the rally on the lawn at the Capitol. In the end, perhaps two dozen people showed. It was disappointing. I gave a speech... I jotted it down on a piece of paper... based on Martin Luther King's "I have a dream..." The microphone amplified sound of my voice echoed and it was a very lonely feeling.

Seneca, May I ask who wrote the above?

Very moving Dr. Young. You must be proud of the rally participants, your hard work has paid off. It would not have been possible without your patience, guidance and relentless drive to promote and maintain the message of hope within our community. Thank you for being the lone voice of optimism and allowing us to hope.

Seneca, I echo your feelings!



Suzanne

[bigbob]

Cure Paralysis Now

[This message was edited by BigB on 04-08-05 at 11:28 PM.]

[antiquity]

Hi Suzanne, sorry. That was quoted from Dr. Young. I'm trying to avoid the quote button lol so I copied and pasted.

Although, as members of CareCure we get a daily Dose of Dr. Youngs optimism, there are many other doctors who are working extremely hard and have therapies ready for trial, but with lack of funding may sit on the shelf.

BBob, I agree that many researchers are committed to a cure but funding issues not withstanding, how many are willing to spend the majority of their free time reaching out to the SCI community? Dr. Young can barely get them to visit this forum to answer basic questions. His actions are clearly unmatched.

[chick]

Maybe the sheen of idealism is no longer glossing over the ideals that drive you, but I see from the words you write, your relentless efforts, and the compassion reflected in all that you do, that idealism persists - idealism based in science and knowledge, and an empathic sensibilty for others (and issues) that may be much easier for most to simply ignore. This Practical Idealism (tho seemingly an oxymoron), give rise to HOPE - Hope: confident expectation in the fulfillment of a wish, desire or want; to trust in those expectations. Fulfillment doesn't come without realistic expectations and hard work, without a commitment and dedication to toward meeting those expectations.

idiom:
hope against hope
To hope with little reason or justification.

TO Hope, IS to Hope WITH reason and justification.

Compassion drives desires. Scientific knowledge/research shapes expectations. Idealism drives commitment and sustains vision. Necessary ingredients for HOPE exists.

Wise, you embody Hope, and are the impetus for Hope in so many.

[bigbob]

BBob, I agree that many researchers are committed to a cure but funding issues not withstanding, how many are willing to spend the majority of their free time reaching out to the SCI community? Dr. Young can barely get them to visit this forum to answer basic questions. His actions are clearly unmatched.

That is true seneca. On this forum his actions are unmatched. But, why is it frowned upon if one suggests we need to back more than one doctor if we want a cure. Can we not appreciate Dr. Young and still feel if we point out that other doctors are working hard on the cure and it is a joint effort that I don't have to be reminded of Dr. Young's worth, or that he is in a class by himself,and even be made to feel that I was implying anyhing negative.