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