Well-Come to Agent for Change, a blog created by Marly Silverman, to serve as a catalyst for change that is much needed on the issues affecting millions of individuals stricken with neuroendocrineimmune disorders worldwide. Through this blog I want to share ideas, exchange, communicate and find solutions for everyday living. The goal is to pursue quality of life that will make a difference in the lives of individuals with neuroendocrineimmune disorders (NEIDs).

Saturday, August 29, 2009

Health Care Reform and the NEIDs (Neuroendocrineimmune Disorders) Community

Professor Neil H. Buchanan, a Tax Law Professor has written a very interesting article on healthcare rationing. He brings forward not only a logical response to the "rationing issue" being pushed by strident opponents of the "Public Option". He provides a very good explanation of the concept of rationing. His article brings light to the overall concerns that we as a society need to look closely: How to implement a just and fair health care accessibility to all Americans, despite social and class demographics?

Just like in the criminal justice system there seems to be two systems on healthcare: one for the rich, and one for the poor or middle class. The goal of current healthcare reform is to attempt to bridge this gap between gender, age, and ethnic disparities and of course among social classes.

Rationing is already part of the health care "free market enterprise" as we have now. The basic difference between what we have now and what health care reform will attempt to change is that currently there is no transparency in our health care system. The public (consumers of health care insurance programs) do not have access to the rule of the game, i.e.: how insurance companies really choose what services to provide to consumers and how these choices are really marketed or offered to the consumers, leaving several important questions unanswered: Are we getting a fair price for the services we are getting? Are the services we are getting now what we really need or want? What is wrong with injecting a bit of competition in the market? Isn’t competition that makes any market to thrive?

Some will debate that when government interferes in the market, it is no longer a free market. But isn’t our government founded in the principles that our “government is of the people, by the people, for the people”…(Abraham Lincoln)

I should point out that rationing has been a part of the picture in political & economic societies, from the least sophisticated to the most industrialized ones. Sadly it has occurred within the neuroendocrineimmune disorders community for far too long. Even before the issue of our national economical crisis came to light, our community has experienced deep personal, professional and financial hardship way before this national recession came to place. This is a fact! It is as well an an issue of quality of life that I have advocated over the years. Most of the advocates within our community understand this concept already. Recently on one of his posts, John Herd shared his take on these important issues too.

The fact that now a much larger number of Americans are now facing the same issues the NEIDs community has been facing for years, brings a whole new take on the situation by the powers to be in government and political science fields. The hardships that health care reform is trying to address, mirror the lack of accessibility to medical care, which includes not enough willing treating physicians in the NEIDs field; loss of employment which leads to lacking accessibility to private or employer medical insurance. These medical and financial challenges have been a part of life for just about every NEIDs individual whom I have spoken since I became an advocate. Health Care reform is a prime opportunity for these deficiencies in the social, disability and healthcare system to be addressed in a way that will benefit our community of suffering.

Here is Tax Prof Neil Buchanan (George Washington), inaugural column: Rationing Health Care: We Have Always Done It, We Do It Now, and We Always Will:
"As the debate over health care reform has become increasingly degraded over the past few weeks, one of the claims that has been treated as a serious complaint about the Democrats' plans -- unlike, say, the claim that the plans include "death panels" -- has been the assertion that their proposals will result in the rationing of health care. ...
The bottom line? There is not, has never been, and can never be, enough medical care to cover everyone in every situation. Rationing is a fact of life. Current health care proposals in Congress would change the rules for rationing, bring them into the light, and create accountability for the decision makers. If we do not adopt those proposals, we will go back to the chaotic form of rationing that has been killing far too many of us for far too long."

Buchanan Named Featured Columnist at FindLaw

I look forward to reading your comments and feedback.

Wednesday, August 26, 2009


Well, folks is here the much awaited request for nominations for 5 positions to the CFSAC was announced today in the Federal Register

Deadline is September 20, 2009. New term will begin on January 3, 2010.

P.A.N.D.O.R.A. has a few names that we would like to nominate, but if you know of a researcher or a physician in you area that we could also nominate and the individual is committed to accepting the nomination and serve in this distinguished committee, we will nominate the individual or individuals.

You can e-mail me at msilverman@pandoranet.info.

Some pertinent information below:
DATES: Nominations for membership on the Committee must be received no
later than 5 p.m. EDT on September 20, 2009, at the address listed

ADDRESSES: All nominations should be mailed or delivered to Wanda K.
Jones, DrPH, Executive Secretary, Chronic Fatigue Syndrome Advisory
Committee; Office on Women's Health; Department of Health and Human
Services; 200 Independence Avenue, SW.; Room 712E; Washington, DC,

FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, Dr.P.H.; Department of
Health and Human Services; 200 Independence Avenue, SW; Room 712E;
Washington, DC 20201; (202) 690-7650.

SUPPLEMENTARY INFORMATION: CFSAC was established on September 5, 2002.
The Committee was established to advise, consult with, and make
recommendations to the Secretary, through the Assistant Secretary for
Health, on a broad range of topics including (1) the current state of
the knowledge and research about the epidemiology and risk factors
relating to chronic fatigue syndrome, and identifying potential
opportunities in these areas; (2) current and proposed diagnosis and
treatment methods for chronic fatigue syndrome; and (3) development and
implementation of programs to inform the public, health care
professionals, and the biomedical, academic, and research communities
about chronic fatigue syndrome advances.


The Office on Women's Health is requesting nominations to fill five
positions for the CFSAC. The positions are scheduled to become vacant
on January 3, 2010. The Committee is composed of seven scientists with
demonstrated expertise in biomedical research and four individuals with
demonstrated expertise in health services, insurance, or voluntary
organizations concerned with the problems of individuals with CFS. The
vacant positions include all four categories. To qualify for
consideration of appointment to the Committee, an individual must
possess demonstrated experience and expertise in the designated fields
or disciplines, as well as expert knowledge of the broad issues and
topics pertinent to chronic fatigue syndrome....

For the complete public notice in the Federal Register click here.

PANDORA Twitter Group

PANDORA Twitter Group

A fighter for Health Care reform dies on August 25, 2009

Senator Ted Kennedy passed away on August 25, 2009, after a battle with brain cancer. We have lost a statesman and an individual who was a heck of an advocate for the poor, for the disabled, for women's rights and the number one proponent for health care reform. He will be missed. He represented one of the last bastions in the senate of the Kennedy legacy. May he rest in peace.May G-d bless his soul.

Update from P.A.N.D.O.R.A.'s newsletter: "We mourn the passing of Senator Ted Kennedy late last night (August 25, 2009). Many in our community are not aware that it was Senator Ted Kennedy and Representative Henry Waxman that brought CFS advocacy issues in the forefront through a congressional mandate in 1993. The establishment of the peer review process for CFS and the establishment of the CFSAC, came about from legislation introduced in 1993 by Senator Kennedy and by Rep. Waxman. We owe Senator Ted Kennedy (as well as Rep. Waxman too) an enormous gratitude and we mourn the loss of one of our strongest advocates. A few years ago,while visiting the Capitol, I met with Rep. Patrick Kennedy and we discussed the special commitment of his father and his as well, towards the neuroendocrineimmune community of suffering, specially on CFS-ME.

Historical Background of the CFS Recurring Special
Emphasis Panel 103rdCongress (1993-1995)
Title: To amend the Public Health Service Act to revise
and extend the programs of the National Institutes of
Health, and for other purposes. [National
Institutes of Health Revitalization Act of 1993]
Sponsor: Rep. Waxman, Henry A. [CA-29]
(introduced 1/5/1993) S.1
Title: A bill to amend the Public Health Service Act to
revise and extend the programs of the National
Institutes of Health, and for other purposes. [National
Institutes of Health Revitalization Act of 1993]
Sponsor: Sen. Kennedy, Edward M. [MA]
(introduced 1/21/1993)
Sec.902. Chronic Fatigue Syndrome
months after the date of enactment of this Act, the
Secretary of Health and Human Services shall establish
an extramural study section for chronic fatigue
syndrome research.
6/10/1993 Became Public Law No: 103-43.

Click here for the presentation of September 17, 2007 of the NIH peer review process of the Center for Scientific Review (CSR)."

Monday, August 10, 2009


It has been a while since I have posted anything on this blog. I am glad to be back. My maezinha (Mommy) Zuleide also lovingly known as Zuzu by her daughters, family and closed friends passed away this February 20. It was a huge personal loss. I hope soon I will be able to talk a bit more about this personal loss without teary eyes.

For now all I have to say is has been a while. I have plenty to share about PANDORA. It is good to be back!