by Eileen Rubin Zacharias
December 21, 2002
Dear Friends,
I am writing this letter due to the recent controversy in the ARDS community that threatens to endanger much of the major advances that have occurred with the limited research into acute respiratory distress syndrome.
There are several reasons that I have taken it upon myself to write this letter. One on those reasons is because on a daily basis, I receive emails and phone calls from families who are desperate for information regarding what research is going on that might save their loved one, who is in ARDS crisis, what drug trials are being done, and at what hospitals are they being done. I have been asked to find specialists in many states, and I have been asked to help patients get transferred to other medical facilities if a transfer is medically possible.
Another reason that I am writing this is because as an ARDS survivor who was ill over seven years ago, the only treatment available to me that was considered experimental at that time, was steroids. There were no medical trials; there were no experimental drugs that I would be given. There was no ARDS Network.
Now there seems to be this focus, not on ARDS, which has affected so many of us in many horrendous ways, but on halting the clinical trials that are being done for ARDS patients by a small group of people (including a self appointed public watchdog group) who claim that they are acting in the best interests of people like us, ARDS patients and their families. But what is occurring is that these misguided people are taking the focus away from ARDS, taking away a cooperative clinical research project, taking the focus away from the education and public awareness, taking the focus away from the support, and what I would maintain to you, is that they have no idea what it is like to as many of us do….
To be on a ventilator for weeks or months;
To be in a drug induced coma for days, weeks or months;
To have the hope that there is a medical research project or a new drug out there that might possibly save your life or the life of your loved one;
To be an ARDS survivor and have to learn to sit up, stand, walk and write again;
To lose a loved one to ARDS and think that there might be something out there that could have saved your loved one, but to learn that the research has been halted;
In the past two years, I have written to the members of the media probably over five hundred letters and emails asking for some attention to our cause, but almost every letter or email is ignored. And I know that every time we get something in the paper or on the radio, the press has an amazing impact. People are so hungry for information about ARDS, are thankful to hear that there is an ARDS Foundation and that someone is doing something out there for this cause.
And so I find it especially disturbing, even shameful, that all of this focus by the media is going to this sort of controversy rather than to the people who are affected by ARDS, their family and those medical professionals who put in the extra hours to go above and beyond what is called upon. How many of you recalled a physician, like I do, who stayed until eleven PM, waiting for the results of my spinal tap, to make certain that I did not have brain damage after suffering a hospital (ICU) psychosis? How many remember, as I do, the nurses who stay with you even though they had a floor full of patients, perhaps as long as a half hour, holding your hand because your were alone and scared out of your mind, and wrote on a piece of paper, “I”m anxious,” in the middle of the night? How many family members remember, as my family members do, the one doctor who gave them hope, and his pager number? Or perhaps a doctor who was kind enough to sit and pray with them? This is what ARDS crisis is about.
But the focus has disappeared. That focus should be, always has been the same….at least 150,000 people in the United States each year will get ARDS, and at least half of those people will probably perish. And we need those in the medical community to support ARDS research.
The reality is that in the time that the ARDS Foundation has been in existence, raising funds for our foundation has proven to be a very difficult task. Part of the reason for this is because people do not know what ARDS is, nor do they understand it. Due to this lack of knowledge, it is very difficult for our foundation to raise the significant funds necessary to begin the medical research that the ARDS Foundation is dedicated towards raising and intends to fund in the future. So, though we do have a medical research fund at the foundation, we have yet to be able to fund a project as it takes substantial sums of money for these medical research projects.
However ARDS research is being done and it is being done by the ARDS Network. For those of you who are not familiar with the ARDS Network, if is a consortium of clinical investigators funded by the National Institute of Health (NIH) and the National Heart, Lung, and Blood Institute (NHLBI) and dedicated to clinical trials of intervention. (ARDS Network) The ARDS Network was established in 1994 and began its first clinical trial in 1995, as I stated, too late for someone like myself who had ARDS in the summer of 1995. The Network has made vast progress in their short existence. Since this time, they have conducted six clinical trials, with the most widely discussed clinical trial being the one regarding the tidal volume strategy that found ventilator smaller breaths were better than larger ones. One important aspect about the ARDS Network, with regard to this, and for that matter, all of their trials: their investigators have no personal interest, academic gain, or financial interest in proving one ventilator strategy superior. Therefore, there was no conflict of interest. The ARDS Network has made vast progress in the short time that they have been in existence.
Although there is other medical research that is being done in the world with regard to ARDS, the unique aspect about the ARDS Network is that the various institutions work on the same studies and then will pool their data, which is a more efficient way to gather information.
The ARDS Foundation works with many physicians both in and out of the ARDS Network. All research that is being done to further ARDS in accordance with the laws is beneficial. After this issue was initially raised, I did the research to learn that the studies under question were carefully reviewed and approved by two independent committees of experts and the Independent Review Boards for 40 hospitals before the studies started. A blue ribbon panel of experts reviewed the concerns that had been raised and this panel rejected all of the concerns regarding safety and strongly recommended that the Fluid and Catheter Treatment Trial (FACTT) study should resume. The panelists’ findings indicate that the complaints were speculative and totally lacking in fact. However, to date, the study is still stalled and as I have said, with all of the negative media attention focused on this, rather than on ARDS, it is really an injustice. Currently, there is minimal medical research going on regarding ARDS, especially compared to other syndromes or diseases such as cancer and AIDS, and there is certainly nothing of this magnitude, that spans many states to compile data to get the best and fastest results, something that is necessary to fight this insidious syndrome.
And what about the human faces of ARDS? Once again, we have been lost and the reality is that the next time someone hears those four little letters, they will probably look at you with a blank stare and not comprehend what ARDS means.
Thank you for taking the time to listen.