Telling the Story

I'd like to find other families who have lost loved ones to HSTCL. I'm uncertain how to do this, but it feels important. There are probably only about 40 people worldwide in the last 4 years who have lost their lives to this particular cancer and probably most, if not all, had been taking TNF blockers (Remicade, Humira, Imuran, 6 MP, etc.). There are so few of us and we have all fallen (or been kicked) into the cracks. At one time there was message thread on the Cancer Survivor Network which is how a few of us found each other over two years ago. Now, apparently the link is "broken." There should be a way that we can find each other. All of our lost loved ones deserve to have their stories told.

I am listing a few url's that are linked to Maxx's story.

The first is to a small private press that is publishing an anthology of motherhood and loss in October of this year which will include a piece I wrote in 2007, shortly after Maxx died. The link below will take readers to the Fat Daddy's Farm blog and directly to an author profile I was asked to submit about myself.

http://fatdaddysfarm.blogspot.com/2012/04/spotlight-on-lisa-wendell-and-gabriella.html

The second link below is to a another woman's blog, Loraine Ritchey, who lost her 29 year old son to Lymphoma two years ago and who was kind enough to post Maxx's story. This piece, describes in more detail what happened to Maxx, why and how.

http://thatwoman.wordpress.com/2012/04/24/the-good-dr-drugs-trust-selling-of-hope-part-3/

Information on the possibility of incurring T-Cell Lymphoma as a result of the use of TNF blockers and immunosuppressive medications can be found on the FDA site below. THIS IS EXACTLY THE INFORMATION WE DID NOT HAVE when Maxx was first prescribed these drugs in 2004. It is likely that the makers of these drugs were aware of the potential for deadly side effects, though action was only taken to label these meds (and then only with incremental information not specifically mentioning HSCTL until 2008 and 2011) AFTER the families of victims and/or doctors themselves reported injury and/or death directly to the FDA as an "adverse" event.

http://www.fda.gov/Drugs/DrugSafety/ucm250913.htm

Big Pharma

I have begun to read more about "Big Pharma." In no way am I able to grasp the extent of what and how this medical industrial complex (to borrow a term from political/economic theory) invades andcontrols our lives. The more I read, the more overwhelmed I am with understanding just how vast and interrelated all the components are in terms of economic, political and social impact. It is far more than one person can hope to comprehend. It is not possible to know even enough to control how one's own life intersects, as all of ours will, with the medical care available to us as individuals. It is a dynamic, self-perpetuating structure of competing interests so expansive and pervasive that I would venture to say receiving care and treatment for anything at any time in our lives, is probably as much responsible for killing us as it may be for returning us to so-called health. The business of healthcare is tantamount to the complicated machinery that generates the economics and momentum for war. There is as much evil in this vicious and carefully balanced construct of power and force as there is in anything destructive that we can imagine. And the horror here is that the loss of life that occurs as a result of the movement of this power is considered"collateral damage" in exchange for profit.

I am at a loss as to how to identify and classify the most potentially destructive of the components in the mess of what we know and accept as healthcare. I am struck by the insignificance I feel in the face of an incomprehensible set of Nuremberg-like directives regarding how, why, when and, most importantly, what we receive in the way of medical care. I am one woman who lost her son in this vortex. I can and do reduce all of what has happened to me and to Maxx down to the particular, the details, the horror of his illness and death. But I also know that we, my family, is representative of the millions and millions of other individuals world-wide who are caught up in the intricacies of a diabolically envisioned and implemented system of treatment, the sole and corrupt impetus of which is to make money.

A sampling of what I've been reading
this week includes:

An article by Marcia Angell, author of
The Truth About Drug Companies: How They Deceive Us and What to Do
About it (Random House, 2004) published in the Boston Review
(May/June 2010) as well as another she wrote which was published in
the New York Review of Books entitled Drug Companies and Doctors: A
Story of Corruption, (January 15, 2009). More information about Ms. Angell can be found at

http://en.wikipedia.org/wiki/Marcia_Angell

The scope of her work in the area of medical ethics and as the editor of the New England Journal of Medicine is amazing and relevant.

I have also been looking closely at Public Citizen, a national consumer advocacy organization, global in scope, originally founded by Dr. Sydney Wolfe

http://en.wikipedia.org/wiki/Sidney_M._Wolfe

Dr. Wolfe has been the head of the Public Citizen's Health Research Group for two decades
and is the author of Worst Pills, Best Pills.

http://www.worstpills.org/

The links listed below cover information that can take days to review and absorb. The material is
literally mind boggling.


http://www.pbs.org/healthcarecrisis/Exprts_intrvw/m_angell.htm#Top

http://bostonreview.net/BR35.3/angell.php

http://www.citizen.org/Page.aspx?pid=183

http://www.//www.citizen.org/Page.aspx?pid=2366

http://www.citizen.org/Page.aspx?pid=2361

http://www.citizen.org/Page.aspx?pid=2506