A lot of Kossacks know of my passion for the stem cell issue, which has led to my work on
StemPAC, on
www.StemCellCandidates.org, and yes -- on
seemingly endless diaries. You might not know, however, of what inspired this passion...
A little over a year ago, my godson and nephew Benjamin Margulies was diagnosed with Tay Sachs disease. If you do a bit of Googling, you'll see things like "100% fatal" and "loss of all physical and mental functions" and "death by age 5." But thanks to some incredible cutting edge treatment from Dr. Joanne Kurtzberg and her team at Duke University -- involving adult stem cell therapy -- Benjy has managed to halt the progress of the disease. In fact, with the help of skilled nursing and physical therapy, he has actually managed to start reversing the effects, and move towards recovery. It was truly a miracle in the making.
Until Aetna decided to cut off his insurance.
I've included the full story below, from a press release sent out by my sister Elizabeth and brother in law Josh (who many of you might know as my co-leader in the DraftWesleyClark.com effort). But the short version -- we need your help.
Please write Aetna at www.DearAetna.org, and ask them to reverse this decision. Please blog about this site. Please do what you can to help get news coverage for this.
Let me stress -- this is not meant as a "bash Aetna" effort by any stretch. Frankly, it's just plain baffling. Throughout so much of the initial transplant process -- an expensive procedure -- Aetna was great. Frankly, amazing. Then suddenly -- a cutoff. With a series of conflicting answers as to why, and a seemingly endless bureaucratic black hole from which there was no exit. As weird as it sounds, it appears that Aetna's standard procedures simply do not account for Tay Sachs being a disease from which one can recover. Medical science has changed, but certain individuals appear unwilling to veer from the old playbook. Clearly there are some great people there, but Benjy's family is having a tough time getting the message to them.
Out of frustration, they launched DearAetna.org, a letter writing campaign to
Aetna President and CEO Ronald A. Williams. We can only hope that he will do the right thing, and not abandon Benjy. With your help, hopefully, he will get the message..
With continued treatment and therapy, the miracle can continue, and Benjy can move closer to a full recovery. Without it, he risks regression, rehospitalization, and we fear -- a confirmation of a dire prognosis that we thought had been relegated to the past.
(Launch Press Release Follows)
"Dear Aetna" Campaign Launches at DearAetna.org; Aims to Persuade Insurance Company Not To Abandon 2-Year Old With Life-Threatening Illness
CONTACT:
Josh Margulies,
JMargulies@savebenjy.com.
917-509-6240
www.DearAetna.org
New York, NY, July 26, 2006 - "Dear Aetna," a grassroots letter-writing campaign to convince the insurance giant not to abandon a 2-year old boy with a life-threatening illness, was officially launched today, at www.DearAetna.org. The effort was started by a couple, Elizabeth and Josh Margulies, on behalf of their son, Benjy Margulies. For the last year, with the help of a cutting-edge cord blood transplant, Benjy has been successfully battling back against Tay-Sachs disease, a condition that has been historically 100% fatal. The couple is being assisted in their effort by "Benjy's Angels," a group of friends, family, and grassroots activists committed to working to save Benjy. (see below for Benjy's full story)
"After supporting Benjy throughout his initial treatment, Aetna has inexplicably decided to cut off payments for his recovery," said Elizabeth Margulies, Benjy's mother, and an assistant vice president with the American Lung Association. "We can only assume this is a bureaucratic snafu, and that is why we are asking Aetna to reverse this mistake, and stand by its 'Legacy of Caring.'"
Headquartered at www.DearAetna.org , the effort enables supporters to write letters to Aetna CEO and President Ronald A. Williams, asking him to reverse the decision. The step comes after earlier appeals to lower staff were unsuccessful.
"To us, this is as confusing as it is upsetting," said Benjy's father Josh Margulies, an attorney who in 2003 was instrumental in the groundbreaking `Draft Wesley Clark' movement. "Here you have a disease which has always been fatal, but thanks to a truly miraculous, ground-breaking transplant, Benjy now has a fighting chance. After all that has been achieved, why isn't it worth a few thousand dollars to Aetna to continue Benjy's treatment in the right way? Why would they oppose the common sense therapy that could make the difference between hospital readmission and a fuller recovery?"
In coming days, the Dear Aetna campaign will expand its appeal to include other members of the Aetna board:
o Frank M. Clark (Consolidated Edison Company)
o Betsy Z. Cohen (RAIT Investment Trust)
o Molly J. Coye, M.D. (Health Technology Center)
o Barbara Hackman Franklin (Barbara Franklin Enterprises)
o Jeffrey E. Garten (Yale University)
o Earl G. Graves (Black Enterprise magazine)
o Gerald Greenwald (Greenbriar Equity Group)
o Ellen M. Hancock (Acquicor Technology Inc.)
o Michael H. Jordan (Electronic Data Systems Corporation)
o Edward J. Ludwig (Becton, Dickinson and Company)
o Joseph P. Newhouse (Harvard University)
o John W. Rowe, M.D. (Aetna)
The campaign plans, as a next step, to attempt to enlist the help of Aetna's institutional investors to convince Aetna to "do the right thing" regarding Benjy and other children in his situation.
Benjy's Story
In March, 2005, Benjy (Benjamin Vincent Margulies) was diagnosed with Tay Sachs -- a disease that had historically been 100% fatal. Having been told with each exam and test that Elizabeth's pregnancy had been progressing normally and that Benjy would have no genetic illnesses, the family was stunned and completely devastated. Then a ray of hope appeared - Benjy's parents (Elizabeth and Josh Margulies) found Dr. Joanne Kurtzberg, a world-renowned physician who was pioneering the use of stem cell therapy (using cord blood) to treat children with Tay-Sachs and related metabolic diseases.
Benjy underwent weeks of grueling exams and tests to determine his candidacy for the transplant. Once Benjy was deemed a good candidate, Aetna gave the go-ahead -- agreeing to pay for the treatment. The family was ecstatic, and publicly praised Aetna.
Benjy spent many months in the hospital following the initial treatment, an extremely difficult procedure that included chemotherapy. But in the end, it was worth it. Benjy not only halted the progress of the disease -- he began to reverse its impact. Through months of physical, speech and occupational therapy, he began to start showing great progress.
Suddenly, in the spring of 2006, lower level Aetna officials advised the family that they would no longer pay for Benjy's nurse or therapists. Every doctor and therapist to have seen Benjy wrote Aetna regarding the urgency of the continued therapy. Nonetheless, without having ever had a representative examine or even meet Benjy, Aetna denied first an initial appeal and then an internal, formal, secondary review. To make matters worse, the same day the appeal was denied, Elizabeth received notice that Aetna had actually decided to increase her monthly health premium.
Aetna is now reviewing this decision at highest level. Please take a minute, and help Benjy by writing a letter to Ronald A. Williams, the President and CEO of Aetna. Thank him for agreeing to review this -- and ask Mr. Williams to do the right thing, and reverse the earlier decision. Ask Mr. Williams to stand by Aetna's "Legacy of Caring."
For more information, and to donate to Benjy and his family, please see www.DearAetna.org