Wednesday, March 4, 2009

Twelve-year-old Russian Girl Likely Victim of Thalidomide

A twelve-year-old Russian girl, Irina, is missing her left arm, femur bones in both legs, and has webbed fingers on her right hand. The defects are said to be the likely result of her mother taking thalidomide while she was pregnant. Irina lives with her adoptive parents in Grand Rapids, Michigan. This story is about the community working together to raise money to get Irina a new prosthetic arm that could cost up to $30,000. While this is a very noble deed and inspiration, it is not the reason I am sharing this recent story.

I want everyone to pause and think. Is a new wave of thalidomide babies right around the corner? Is this the type of future we want for our children and grandchildren? Irina is twelve years old. The dawning of a very young and new generation of thalidomide babies could be upon us sooner than we think if we don’t all help raise awareness of the potential dangers of this drug. The article refers to the “banned” drug, thalidomide. I have not confirmed whether thalidomide is indeed currently banned in Russia. It is really irrelevant except to say that if it is banned and there are thalidomide babies being born, then how many will be born in countries where it is approved and distributed for several different diseases? It also reaffirms my original statement that even the tightest distribution controls can not account for human nature or mistakes.

Read the article and think! In the 50’s and 60’s, no one knew of the effects until it was too late. Thalidomide was considered safe. The survivors now in their 50’s are experiencing enormous financial challenges for medical care with the small settlements they received. In other countries where no compensation has been awarded, thalidomiders beg on the street just to buy food and make ends meet – no expensive adapted cars or wheelchairs to increase their potential of getting a job.

Well, this time around, WE KNOW the effects! At the risk of sounding cold and heartless, I want to know who is going to bear the financial burden this time. In a time of economic collapse with people losing jobs and their homes, big-hearted Americans are participating in fundraisers so that a 12-year old Russian thalidomide child can get a $30,000 arm for reasons that could have been avoided. Irina’s defects are actually mild. Most have been born with no arms and/or legs. My heart goes out to the babies born into this type of lifetime struggle, but will our pockets remain deep enough for every thalidomide baby yet to be born with defects that could have been avoided? Where will this generation of thalidomide babies be in fifty years? When will we ever learn from our past?

“Russian-born girl inspires Grandville school family to reach out, provide prosthetic arm”

Wednesday, February 11, 2009

New History of Thalidomide Revealed

Okay, the hottest information about thalidomide for the past few days has been about the new historical discovery that thalidomide was developed by the Nazis, not by a drug company by accident. There are also claims that the drug was tested on prisoners in concentration camps contradictory to previous information that it was never tested on humans but rather on mice. The story is making its way across the Internet like wildfire. This is good as it will educate more people about thalidomide who previously weren’t aware of its devastating potential. I have to admit, after seeing the first dozen stories my reaction was “WHO CARES!” Who cares WHO made the stuff? What really matters is not WHO MADE it but WHO TOOK it and WHO was INJURED for life by it and in what fashion. What really matters is that it is back in use again today and the number of people taking it for one of several ailments it is intended to treat is growing. My original intent was to increase thalidomide awareness in the present and future in hope that this drug will not get out of control and create a new generation of thalidomide babies.

Then I thought about all the history enthusiasts that want to know the origin of anything that caused a major historical event and was going to share the story with all of you! But something else is nagging at me now. Folks, I do think we need to pay more attention to this piece of historical information as it unfolds. There is something strangely out of place about it and I hope that it will not lead into a connection of any future events. This is not about thalidomide but of chemical and bio-warfare if the new discoveries and claims are historically correct. If I am not mistaken there are some other drugs and food additives that lay their claim to fame to similar origins.

I went to bed last night with happy thoughts in my mind as I drifted off to sleep. Moments before waking this morning I captured a brief image of the word
“T H A L I D O M I D E” as the big letters flashed in my face. I woke feeling very unsettled and perplexed. Why this odd one-second dream? I now think it was a subconscious message to post the reference to this article because it’s time to not only ask WHO, but also HOW it was pushed through the system and made available to the general public, and WHY! Why then and why now? Something to think about as waste pharmaceuticals are now being detected in our waterways.

Take your pick. The first is more detailed. The second is shorter and includes a picture of an adorable young boy with no arms or legs.

Thalidomide 'was created by the Nazis' at “TimesOnline”

"Nazis developed Thalidomide and tested it on concentration camp prisoners, author claims" at “MailOnline”

Monday, February 9, 2009

Thalomid and Rivlimid Product Labeling

How many drugs do you know of that have 29 pages or 47 pages of label information? Well, these two do. Both are a form of thalidomide and by the Celgene Corporation. Some of the information is very technical and intended for physicians and pharmacists but some is simply stated for the patient. This is information required by the FDA in the United States but no matter where in the world you are reading from, it provides important use and risk information.

Thalomid (thalidomide) product labeling

Revlimid (lenalidomide) product labeling

Victims Of The Drug Scandal Are Turning 50 But Are Being Denied Government Aid As Their Health Worsens

Most Thalidomide Babies are now in their fifties and dealing with the everyday challenges of their disabilities as well as growing old. “TimesOnline” shares a piece from “The Sunday Times” that describes the dilemma experienced by thalidomide survivors – the extra wear and tear on their bodies, the high costs of vehicle and home modification, and health care and assisted living costs. UK thalidomide survivors have been getting by with modest assistance from settlements from the drug company, which is disbursed by the Thalidomide Trust. Some have managed jobs through the years. To date, additional assistance from the government (who allowed the drug’s availability without proper testing in the 50’s) has been refused.

State Shuns Children Of Thalidomide

Saturday, February 7, 2009

Thalidomide Baby Spotlight - Rosie Moriarty-Simmonds

Rosie Moriarty-Simmonds was born with no arms or legs. In a time when society’s attitude was to institutionalize babies like Rosie, her family chose to raise her at home and provide as near normal a life as possible. Rosie is in her mid 40’s and married to Stephen, also a tTalidomide Baby with no legs. They have a “normal” 12 year old son.

“Mail Online” writes about Rosie’s life and her concerns of the return of thalidomide in their featured article:
“Thalidomide Is Back - But Those Scarred By It The First Time Fear It Is A Terrible Mistake”

Rosie wrote a book published in July 2007, “Four Fingers and Thirteen Toes” about her life as a Thalidomide Baby.
Customer Reviews

Thalidomide Baby Spotlight – Louise Medus

Louise Medus was born with no arms or legs and malformed hands and feet. She grew up in an institution but as an adult, went on to marry and have two “normal” children who are now 20 and 16 years old. At 46, Louise is divorced but remarried to the love of her life – Darren Mansell, 47, and also a thalidomide survivor.

“Mail Online” describes Louise’s life and love story.
“A Truly Special Love Story: Two Married Thalidomide Survivors Living Happily 50 Years After Drug's Launch’

Meanwhile, Louise has written a book with the help of writer Gill Swain.
“No Hand To Hold and No Legs To Dance On” was published in January 2009 and is the true life story of Louise Medus. provides a news release of the book and some of life’s reflections by Louise.

Friday, February 6, 2009

Thalidomide Baby Spotlight – Tony Melendez

Thalidomide left Tony Melendez with no arms. Think about it. What are your favorite activities and how would you do them without arms? Tony Melendez found a solution in his feet. Not only did he become proficient in using his feet to accomplish most day-to-day routines but also he became one of the most amazing acoustic guitarists I have ever seen. Tony’s incredible outlook on life is a reminder to us all that there is no excuse to be defeated by life’s challenges. Read his biography and watch the videos. Prepare to be humbled.

Tony Melendez Biography

Thursday, February 5, 2009

Celgene Reports Record Fourth Quarter and Full Year 2008 Product Sales and Operating Profits

Celgene Corporation patented THALOMID (thalidomide) and REVLIMID (lenalidomide – a thalidomide derivative) as well as other pharmaceuticals. If you think these drugs are being introduced slowly and cautiously, just take a look at the revenue for 2008 in this report. Also of particular interest, which speaks to the aggressive marketing, is the distribution of REVLIMID from about 30 countries to over 65. One of the many 2009 Corporate objectives is “Maximize the Clinical, Regulatory, and Commercial Potential of REVLIMID®, VIDAZA®, Global THALOMID®/Thalidomide and Pomalidomide in Nearly 75 Countries”. Be sure to scroll down to see their “Recent Developments and Highlights” and “2009 Selected Corporate Objectives”.

It is obvious that thalidomide is not only back, but is picking up speed around the world.

Celgene Reports Record Fourth Quarter and Full Year 2008 Product Sales and Operating Profits

Thalidomide and Multiple Myeloma

Information recently presented regarding trials of thalidomide (and derivatives) in combination with other drugs as a treatment of Multiple Myeloma. Results and effectiveness of several combinations are published - some including thalidomide and some without. I have listed those that include thalidomide and/or derivatives for your reference.

In this Cancer News Article on refer to the paragraph:
Pomalidomide (CC4047)

In this Cancer News Article on refer to the paragraphs:
Velcade, Doxorubicin, and Dexamethasone for Induction (Note Revlimid – thalidomide derivative)
Velcade, Cytoxan, Revlimid, and Dexamethasone for Induction
Velcade, Melphalan, and Prednisone Versus Velcade, Thalidomide, and Prednisone for Induction
Velcade, Revlimid, and Dexamethasone for Induction

Other articles from 2001-present on regarding thalidomide research and findings in treating a variety of diseases.

Wednesday, February 4, 2009

Thalidomide Treatment after Prostate Surgery

Science Daily News: Research results of thalidomide treatment after prostate surgery to prevent recurrence.

Thalidomide – A Haunt From the Past

When I was a young teen, I went to the county fair with a group of friends like most kids do. I remember the tent we walked by several times advertising “freaks”. My curiosity peaked, I wanted to check it out but my friends said, “Don’t waste your money. It’s all fake stuff, a hoax, and a rip off.” They went on some rides and I decided I had to see for myself. What I saw that day changed my life forever. There was the 2-headed cow and the little person about three feet tall. Both behind ropes so you could not get too close to see if they were fake. But, that is not what grabbed my attention. Up close, I saw an unborn fetus in a jar of formaldehyde with no arms and legs, big posters describing the thalidomide caused birth defects, and pictures of babies who had indeed been born with no arms and legs. Okay, if this was a hoax someone sure had a sick sense of how to make a buck. If it was real, then how could anyone let something like this happen? How could they not know this drug would cause these horrific birth defects? Reality or hoax, the shock factor lived in my subconscious for years.

Fast-forward nearly 30 years. Pregnant with mild morning sickness, my doctor offered a prescription to alleviate the symptoms. I shuddered although I was not sure why the suggestion prompted such intense feelings. Fast-forward about five more years. I stumbled upon an article on the Internet regarding the approval of thalidomide by the FDA (for a different use). Suddenly, it all came flooding back to me. The images of unborn deformed babies and Thalidomide Babies born with no arms and legs. No, it was not a hoax. The thalidomide caused birth defects was a very real and tragic situation that occurred back in the 1950’s and 60’s. It unsettled me for a few days as I thought of how crazy this must be. I soon put all the thoughts aside after several thankful prayers for my healthy son. Now, a few years later more news seems to be regularly cropping up about thalidomide. More applications are being discovered all the time and more countries around the world are approving it for many new uses. This time, I find I cannot put the thoughts aside. We all have an obligation to our subsequent generations to pass on our knowledge and wisdom to them. That is why I have vowed to do what I can to increase awareness of the potential consequences of this drug when taken by the wrong person at the wrong time.

For starters, I have written two articles:

The Thalidomide Tragedy – Will History Repeat Itself?

Help Avoid More Thalidomide Baby Births

I feel like we are watching a big snowball rolling downhill, gaining momentum before it finally hits the huge boulder at the bottom of the hill smashing it to bits. Let’s all work together to change the path of that snowball before it hits the boulder.