Advocating for Self or Others

Advocating for Self or Others



In many faith traditions, folks talk about having a discipline. As I’m someone who is not terribly fond of structure, this seems like a scary concept. Very recently, though, I have been learning how disciplined approaches to advocacy can really help.



My first discipline is that you need to write everything down. As I try to support somebody through advocacy, I have found that the more I record things in a notebook, the more effective I am. By making notes, I am able to tell the story better, and a lot of advocacy is about telling folks the story.



A second discipline is to try and be as accurate in the words I use as possible. It is important that the truth of the story stand out, as this is the only cloth you have to weave with.



The third discipline is patience and humility. These two are the toughest for me, but when I practice them I can do so much more. I need to “walk in love” if I even hope to have others respond to my cause.



I admit I am making this sound easier than it is. I sometimes feel so passionate about an issue that I can just spin like a top; but if I can stay calm and centered, WOW! Can I have an impact!



Joseph

CMS Publishes Patients’ Rights Rules on Use of Restraints and Seclusion; An Expert Responds

After the Centers for Medicare & Medicaid Services recently issued new rules (to become effective Feb. 6, 2007) mandating more rigorous training of health care workers in the use of restraints and seclusion, we received a response from Linn Cohen-Cole, who is a nationally known expert and writer on restraint and seclusion, committed to ending their use. Among her published work is “Restraint and Seclusion: The Physiologic Catastrophe of Psychiatric Control and the Fallacy of a Psychiatric Science.” She has testified before the President’s New Freedom Commission on Mental Health and has consulted with the National Association of State Mental Health Program Directors and others on this issue.

More information about the new CMS rules is available at the following link: http://www.medicalnewsservice.com/fullstory.cfm?storyID=4281&fback=yes.

Cohen-Cole has agreed to allow her remarks to be posted. She writes:

“The improvements they suggest are Orwellian. They are training people in ‘proper’ abuse, in careful anti-human rights actions. They do not understand the fundamental principle that mammals (of any kind) can’t go through [seclusion and restraint] without massive physiologic consequences (and that is leaving off all of the massive psychological ones).

“They are also missing the point that mental health patients really do finally deserve to be full-fledged human beings as measured by their also having the full panoply of human rights (or at least a recognition that their rights are being violently violated) and should not be captive victims anymore of a field that is unbound by human rights or even standard law. . . .

“What does ‘freedom from the inappropriate use of all restraints and seclusion’ mean except to imply there is appropriate use? And where are there any legal avenues set up for these patients, whose freedom is bandied about as an empty word? Where is the slightest effort to establish the most basic of safeguards: due process? . . . How about actual freedom? How about laws to allow patients to reach a lawyer mid-restraint? These people do not even have habeas corpus rights, as a prisoner would.”

Responding to a written comment by Eric B. Broderick, D.D.S., M.P.H., acting deputy administrator of the Substance Abuse and Mental Health Services Administration that “Today we are taking needed steps to solidify training requirements and essential reporting to reduce and ultimately eliminate seclusion and restraints,” Cohen-Cole added, “They haven’t the first clue that elimination takes only saying, ‘This is wrong to its core and it’s over.’ ”

(See also the Hartford Courant’s coverage.)

posted by Susan Rogers

Eli Lilly Responds to NY Times

In the interests of balance, I feel it is necessary to provide the complete text of Eli Lilly’s response to The New York Times’ Dec. 17 article. http://biz.yahoo.com/prnews/061216/nysa019.html?.v=16

Then, today, Lilly issued a statement in response to the Times’ Dec. 18 piece, in which the Times quoted Lilly documents promoting off-label marketing to people who had neither schizophrenia nor bipolar disorder. Lilly’s response is a flat-out denial: “At Lilly, we do not engage in off-label promotion – as alleged in The Times article. Lilly is committed to the highest ethical standards and to promoting our medications only for approved uses.” http://www.upi.com/HealthBusiness/view.php?StoryID=20061218-011405-8077r

Meanwhile, Lilly’s 2005 annual report notes that it is facing an investigation by federal prosecutors in Pennsylvania and had been subpoenaed by the Florida attorney general’s office in regard to its Zyprexa marketing practices. Readers of this blog can review the Times articles and Lilly’s response and interpret the information for themselves.

One more thing: In 2004, Lilly issued a warning – mandated by the Food and Drug Administration – describing the heightened risk of hyperglycemia and diabetes in people taking Zyprexa and similar drugs.

posted by Susan Rogers

Eli Lilly Covers Up Zyprexa Risks, According to New York Times

Eli Lilly and Company, manufacturer of Zyprexa, its best-selling psychotropic medication, spent from 1995 to 2004 minimizing the drug’s side effects so as not to harm its sales, according to in-depth pieces in The New York Times on Dec. 17 and 18, 2006. Experts, including the American Diabetes Association, say that the drug – which causes weight gain and tends to elevate users’ blood sugar levels – is more likely to cause diabetes than other medications used to relieve the symptoms of psychosis. However, according to documents sent to the Times by Jim Gottstein of the Law Project for Psychiatric Rights (http://psychrights.org/index.htm), Lilly was more worried about its bottom line than about the well-being of those who were liable to receive Zyprexa prescriptions from doctors who were unaware of the risks.

In fact, the Times reports, in 1999 and 2000 Lilly was so avid about promoting Zyprexa sales that it encouraged off-label use, marketing it to primary care physicians as a treatment for dementia – a condition for which the drug has not been approved by the Food and Drug Administration (FDA). In fact, the FDA warns that Zyprexa boosts the risk of death in older adults who have psychosis related to dementia. Lilly also has attempted to market the drug for people diagnosed with mild bipolar disorder who had been previously diagnosed with depression, even though Zyprexa is meant to control the symptoms of mania, not depression.

In an effort to be balanced, I will add that Lilly’s response is that there is no proven link between diabetes and Zyprexa – which is far and away Lilly’s best-seller, with 2005 sales of $4.2 billion representing nearly a third of its entire revenues.

In 2005, Lilly agreed to shell out some $700 million to settle about 8,000 legal claims by Zyprexa users who said they had developed diabetes or other medical problems; thousands of additional cases are pending.

By now, I should be so jaded by reports of corporate malfeasance – Enron, et al. – that this story doesn’t shock me. I guess I’m not that jaded. I also want to congratulate Jim Gottstein on his great work!

Here are links to the Times stories:

“Eli Lilly Said to Play Down Risk of Top Pill”
“Drug Files Show Maker Promoted Unapproved Use”

posted by Susan Rogers

Web Site Tracks Deaths of Children from Institutional Abuse

The Coalition Against Institutionalized Child Abuse monitors and reports the deaths of children and youth in institutions such as residential treatment programs, boot camps, and other such facilities. According to the Coalition Web site, there is no federal or state agency doing this important job. Thanks to Bob Seeley, a Pennsylvania human rights activist who has fought against the use of seclusion and restraint for many years, for bringing the site to my attention.

posted by Susan Rogers