The Capital Times :: OPINION :: WEB
May is mental health month, and it's a time once again when mental health and other chronic disease advocacy and education groups should consider anew their journey and hopes for the future. As a father of a son with mental illness, I ask all Wisconsin citizens to consider the following questions.
Does your organization's strategic planning extend to the day when medical therapeutics do more than mitigate chronic disease symptoms but actually cure the disease? Can your organization envision a not-too-distant time when your service recipients will suddenly ask, "Why didn't you inform us that our illness might someday be cured through stem cell-based medications and therapies?" "What actions did your organization take to ensure that our cell-based medical needs and health care rights were protected during the early developmental phase of this research?"
If there is indeed a possibility of a cure -- and the scientific community now clearly believes there is -- it is now ethically and morally incumbent on all of us to begin to educate ourselves about such research and begin now to educate our membership about its revolutionary healing potential. No reputable physician or stem cell research scientist today would any longer consider such miracle therapy a fantasy. Today all leading university research and medical centers and increasingly the large pharma industry have established their very own cell-based regenerative medicine and research centers.
Chronically ill members need real hope of a better future for themselves and their families, especially when there is now empirical research evidence on which to base this hope. We have now reached the point when it's not if but only when such miraculous therapies will exist.
Presently patient-specific stem cells are being used to diagnose the onset of chronic diseases and for testing cell-based drugs for human toxicity and immune reactions. Stem cell research-centered biotech companies and treatment providers are growing by leaps and bounds. Worldwide, hundreds of stem cell clinical trials are now in place. (To protect the consumer from unsafe and unproven stem cell treatment, see the International Society of Stem Cell Research's "Patient Handbook on Stem Cell Therapies.") In Madison, long before there was any scientific consensus about the etiology of mental illness, that which is now called the National Alliance on Mental Illness pioneered what it believed was the genetic and neurological cell-based origin of this disease. From that point on the blaming of the patient and/or the patient's family for this disease stopped. Now is a similar moment in Wisconsin's mental health history when change is on the horizon.
To prepare for this not-too-distant future, perhaps the first step would be to establish a goal of becoming more informed about stem cell research, and its potential application to your particular disease group. A second goal might be collaborating with your university regenerative medicine center and/or the stem cell-centered biotech company in your area.
Often the elixir for strategic planning and a breakthrough is hope. Like the people we advocate for, we are often left stunted and frustrated without this positive emotional impulse.
For more information about what action your organization can take right now, visit my blog: danecountyalmanac.blogspot.com.
William R. Benedict of Madison advocates for stem cell research funding.
Friday, May 22, 2009
Action steps for chronic disease health advocacy and education organizations
What action can your health advocacy organization take right now to ensure your service constituency’s cell-based health care needs and rights are protected during the early stages of stem cell research and development?
Begin educating your membership about stem cell research and cell-based medications and other therapies? Begin to advocate in order for your members or constituent group to have a seat at the table when and wherever stem cell policy issues are discussed. Advocacy should occur at every stage of the stem cell research, translational, clinical trial and product development stages.
1. Advocate for stem cell collections with genetically diverse sources of cell lines
2. Collaborate with stem cell regenerative medicine and biotech centers
3. Ensure that public funding for stem cell research includes a revenue and/or health care benefit or payback.
4. Advocate for and participate in open stakeholder stem cell discussions and forums
5. Represent your membership on all stem cell oversight and advisory funding bodies.
6. Seek a variety of stem cell research funding sources including both the private and public sector.
7. Attend and/or testify at legislative stem cell committee hearings.
8. Advocate for alternative fair and equitable financial/business intellectual property models.
9. Advocate for the efficacy and safety of all stem cell research and clinical trials.
10. Encourage alternative licensing, product development and public funding models to promote fair, broad and affordable access to stem cell based diagnostics and therapies.
11. Offer educational resources and information on stem cell research and applications.
12. Offer education opportunities for stem cell donors and recipients.
13. Provide public education on stem cell efficacy and safety risks factors. (For additional advocacy and educational resources see my blog: danecountyalmanac.blogspot.com.
Begin educating your membership about stem cell research and cell-based medications and other therapies? Begin to advocate in order for your members or constituent group to have a seat at the table when and wherever stem cell policy issues are discussed. Advocacy should occur at every stage of the stem cell research, translational, clinical trial and product development stages.
1. Advocate for stem cell collections with genetically diverse sources of cell lines
2. Collaborate with stem cell regenerative medicine and biotech centers
3. Ensure that public funding for stem cell research includes a revenue and/or health care benefit or payback.
4. Advocate for and participate in open stakeholder stem cell discussions and forums
5. Represent your membership on all stem cell oversight and advisory funding bodies.
6. Seek a variety of stem cell research funding sources including both the private and public sector.
7. Attend and/or testify at legislative stem cell committee hearings.
8. Advocate for alternative fair and equitable financial/business intellectual property models.
9. Advocate for the efficacy and safety of all stem cell research and clinical trials.
10. Encourage alternative licensing, product development and public funding models to promote fair, broad and affordable access to stem cell based diagnostics and therapies.
11. Offer educational resources and information on stem cell research and applications.
12. Offer education opportunities for stem cell donors and recipients.
13. Provide public education on stem cell efficacy and safety risks factors. (For additional advocacy and educational resources see my blog: danecountyalmanac.blogspot.com.
Wednesday, May 13, 2009
If Not Now, Then When?
“A Call to Action for Chronic Disease Health Advocate Organizations”
Does your organization’s strategic planning time line presently extend to the day when medical therapeutics does more than simply help mitigate health care symptoms of your service clients or disease group and literally begins to cure their disease? Can your organization envision a not too distant time when your service members or clients will suddenly ask, “Why didn’t you inform us that our illness might someday be cured through miracle-like stem cell-based medications and therapies?” And, “What actions did your organization take to ensure that my cell-based medical needs and health care rights were protected during the early developmental phase of this research?
If there is indeed a possibility of a cure --- and the scientific community now clearly believes there is --- or any reason to hope for a cure through cell-based research and development, is it not now ethically and morally incumbent upon your organization to begin to educate itself about such miracle-like medical research and begin now to formally advocate and educate your membership about its revolutionary and healing potential? No informed reputable physician or stem cell research scientist today would any longer consider such miracle therapy a fantasy or an extremely unlikely health outcome.
Wasn’t it the practice of those who wanted to maintain serfdom and the caste system to continue to repress individual freedom and hope that would have otherwise changed their circumstances and their lives? Don’t our members need real hope of a better future for themselves and their families especially when there is now empirical research evidence on which to base this hope? We have now reached the point in time when it’s not if but only when such miracle-like therapies will exist.
Today all leading university research and medical centers and increasingly the large pharma industry have established their very own cell-based regenerative medicine and research centers. Is this not convincing proof that miracle stem cell therapies are just around the corner?
Presently patient-specific pluripotent stem cells are being used to diagnose the first beginning onset of chronic diseases and for testing cell-based drugs for human toxicity and immune reactions. Stem cell-research-centered biotech companies and treatment providers are increasing by leaps and bounds. Worldwide, hundreds of stem cell clinical trials are now in place. (To protect the consumer from unsafe and unproven stem cell treatment, see: International Society of Stem Cell Research, “Patient Handbook on Stem Cell Therapies.”)
After all, wasn’t it in Madison, WI, long before there was any scientific consensus about the etiology of mental illness, that which is now called NAMI, pioneered what it believed was the genetic and neurological cell-based origin of this disease? From that point on the blaming of the patient and/or her family for this disease stopped. Now once again is a similar moment in Wisconsin’s mental health history, when millions of chronically ill persons and their families are left without hope of ever being cured.
Does your present mission or long term strategic goal call for more than a disease mitigation, adjustment and maintenance model of health care or does it include the goal of total elimination of that particular disorder or disease? If not, why not? In order to protect your organization’s credibility should not an end point at least be envisioned?
To prepare for this not too distant future perhaps the first step would be to establish a goal of becoming a more informed organization consumer of stem cell research, and its potential application to your member or client needs. A second goal might include beginning collaboration with your university regenerative medicine center and/or the stem cell-centered biotech company in your area.
Have you ever asked yourself what often precedes strategic planning? Often the elixir for planning and a breakthrough is hope. Like the people we advocate for, without this positive emotional impulse we are often left stunted and frustrated.
For more information about what action your organization can take right now, visit my blog: danecountyalmanac.blogspot.com. My email address is: bergentown@sbcglobal.net
Respectfully yours,
William R. Bendict, MSW, ACSW
Family Advocate for public Stem Cell Research Funding
Does your organization’s strategic planning time line presently extend to the day when medical therapeutics does more than simply help mitigate health care symptoms of your service clients or disease group and literally begins to cure their disease? Can your organization envision a not too distant time when your service members or clients will suddenly ask, “Why didn’t you inform us that our illness might someday be cured through miracle-like stem cell-based medications and therapies?” And, “What actions did your organization take to ensure that my cell-based medical needs and health care rights were protected during the early developmental phase of this research?
If there is indeed a possibility of a cure --- and the scientific community now clearly believes there is --- or any reason to hope for a cure through cell-based research and development, is it not now ethically and morally incumbent upon your organization to begin to educate itself about such miracle-like medical research and begin now to formally advocate and educate your membership about its revolutionary and healing potential? No informed reputable physician or stem cell research scientist today would any longer consider such miracle therapy a fantasy or an extremely unlikely health outcome.
Wasn’t it the practice of those who wanted to maintain serfdom and the caste system to continue to repress individual freedom and hope that would have otherwise changed their circumstances and their lives? Don’t our members need real hope of a better future for themselves and their families especially when there is now empirical research evidence on which to base this hope? We have now reached the point in time when it’s not if but only when such miracle-like therapies will exist.
Today all leading university research and medical centers and increasingly the large pharma industry have established their very own cell-based regenerative medicine and research centers. Is this not convincing proof that miracle stem cell therapies are just around the corner?
Presently patient-specific pluripotent stem cells are being used to diagnose the first beginning onset of chronic diseases and for testing cell-based drugs for human toxicity and immune reactions. Stem cell-research-centered biotech companies and treatment providers are increasing by leaps and bounds. Worldwide, hundreds of stem cell clinical trials are now in place. (To protect the consumer from unsafe and unproven stem cell treatment, see: International Society of Stem Cell Research, “Patient Handbook on Stem Cell Therapies.”)
After all, wasn’t it in Madison, WI, long before there was any scientific consensus about the etiology of mental illness, that which is now called NAMI, pioneered what it believed was the genetic and neurological cell-based origin of this disease? From that point on the blaming of the patient and/or her family for this disease stopped. Now once again is a similar moment in Wisconsin’s mental health history, when millions of chronically ill persons and their families are left without hope of ever being cured.
Does your present mission or long term strategic goal call for more than a disease mitigation, adjustment and maintenance model of health care or does it include the goal of total elimination of that particular disorder or disease? If not, why not? In order to protect your organization’s credibility should not an end point at least be envisioned?
To prepare for this not too distant future perhaps the first step would be to establish a goal of becoming a more informed organization consumer of stem cell research, and its potential application to your member or client needs. A second goal might include beginning collaboration with your university regenerative medicine center and/or the stem cell-centered biotech company in your area.
Have you ever asked yourself what often precedes strategic planning? Often the elixir for planning and a breakthrough is hope. Like the people we advocate for, without this positive emotional impulse we are often left stunted and frustrated.
For more information about what action your organization can take right now, visit my blog: danecountyalmanac.blogspot.com. My email address is: bergentown@sbcglobal.net
Respectfully yours,
William R. Bendict, MSW, ACSW
Family Advocate for public Stem Cell Research Funding
Sunday, May 3, 2009
Protect Wisconsin’s cutting edge science
Wisconsin State Journal – Opinion
A Wisconsin Technology Council study reports a 25-year slide toward weaker public support for higher education in Wisconsin. It reported a steady erosion of the infrastructure that supports academic research in Wisconsin, much of which lies in UW-Madison’s life sciences department. This downward spiral can be seen in the steady decrease in faculty, academic staff, course selections and laboratory sessions.
This erosion now threatens Wisconsin’s research and development foundation, best seen in the mediocre state funding of our greatest potential treasure --- stem cell research.
This situation threatens to weaken UW-Madison’s ability to compete for merit-based federal research grants, jeopardizing the receipt of millions of federal National Institutes of Health research dollars in the coming decade. The report states that Wisconsin’s total academic R&D spending at $805.8 million in federal, state and private sources, with the latter contributing a mere $109 million.
This statistic alone suggest to me that that Wisconsin investment in such research is not giving a sufficient and fair payback to the taxpayers, and until it does, Wisconsin’s investment in such research will continue to decrease.
To turn this situation around and re-establish Wisconsin’s position in academic research and development, I urge our governor and the Legislature to develop intellectual property laws that will protect and grow the Wisconsin taxpayers’ investment in academic research and development.
Such legislation exists in California, where millions of dollars raised through state bonds have already leveraged more in grants and loans into stem cell research and development.
Bill Benedict, Madison
A Wisconsin Technology Council study reports a 25-year slide toward weaker public support for higher education in Wisconsin. It reported a steady erosion of the infrastructure that supports academic research in Wisconsin, much of which lies in UW-Madison’s life sciences department. This downward spiral can be seen in the steady decrease in faculty, academic staff, course selections and laboratory sessions.
This erosion now threatens Wisconsin’s research and development foundation, best seen in the mediocre state funding of our greatest potential treasure --- stem cell research.
This situation threatens to weaken UW-Madison’s ability to compete for merit-based federal research grants, jeopardizing the receipt of millions of federal National Institutes of Health research dollars in the coming decade. The report states that Wisconsin’s total academic R&D spending at $805.8 million in federal, state and private sources, with the latter contributing a mere $109 million.
This statistic alone suggest to me that that Wisconsin investment in such research is not giving a sufficient and fair payback to the taxpayers, and until it does, Wisconsin’s investment in such research will continue to decrease.
To turn this situation around and re-establish Wisconsin’s position in academic research and development, I urge our governor and the Legislature to develop intellectual property laws that will protect and grow the Wisconsin taxpayers’ investment in academic research and development.
Such legislation exists in California, where millions of dollars raised through state bonds have already leveraged more in grants and loans into stem cell research and development.
Bill Benedict, Madison
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