ALS (Lou Gehrig's Disease) and IPLEX

A very dear friend of mine asked me to help a wonderful woman in her fight…and as you all know at Motherhood Incorporated, we are all about change.  So knowing this, I have been asked to support this petition so people who want and need this drug can have access…here’s Tatiana’s story so read on… I supported her, I hope you will to…

Six months ago my husband was diagnosed with ALS (Lou Gehrig’s disease).  There is no known cure or treatment. Once diagnosed, the patient is essentially handed a death sentence.   I would do anything to help him.  I need a huge favor and your help in order to get another chance for my husband and thousands of other people with ALS another chance and hope.  We cannot wait, every week every day counts. In 2006, the FDA approved a drug called IPLEX manufactured by Insmed.  There followed a number of anecdotal claims stating that IPLEX was effective in slowing down progression and possibly reversing some of the effects of ALS, as well as HIV and burn victims..Unfortunately, Genentech took Insmed to court, for patent infringement.  The case was settled in March 2007 causing IPLEX to be pulled off the market world-wide.  Only a small study now exists in Italy because of the involvement of Italian Ministry of Health.  These results are due in the Fall or early winter, and many positive results have been reported in the Italian media. The court system in Italy officially recognizes these positive resultsFrom a statement on Insmed’s website “As part of this settlement, we are allowed to develop IPLEX™ for specific indications. ALS is not one of the permitted indications.” What can you do?We found this petition on the internet to “Allow IPLEX to be distributed to ALS patients and burn victims”. I’m asking you to sign this petition to help us reach our goal of 10,000 signatures to allow IPLEX to be distributed to ALS patients,The following is the link to this petition.

Thank you very much.

So if you have a moment, look at the site or head straight to the petition. If it were my family member or friend, I would want access to every possible treatment that could save my child or my husband’s life. It only takes a minute, but you could make a huge difference in the life of one family — and many others.  Thank you!


5 thoughts on “ALS (Lou Gehrig's Disease) and IPLEX

  1. Iplex should be made available to everyone ( ALS ) worldwide, especially to American people since Iplex is made in teh USA. Futhermore Iplex must be available to our soldiers ( as well as our our Veterants ) as soon as possible.
    God bless all ALS patients and help them to get Iplex as soon as possible.
    Best Regards,

  2. I’m the caregiver for my wife Kathy who has ALS , are you aware of the Demonstration in Washingotn DC
    on November 11 ? We want to be given a chance to use IPLEX .

    TUESDAY, NOVEMBER 11, 2008
    10AM to 4PM
    U.S. Capitol Building West Front Lawn (handicapped accessible), WASHINGTON, D.C.

    ALS Patients Protest Legal Dispute Preventing Access to Life-Saving Drug


    Support patients with Amyotrophic Lateral Sclerosis (Lou Gehrig’s disease) now by joining our demonstration to force Genentech, Tercica and Insmed to resolve their legal dispute and release IPLEX to provide symptom relief for this horrible disease. We are calling on all persons with ALS, caregivers, friends, family, media and others to join us in protesting this devastating travesty of justice.

    IPLEX is a biomedical pharmaceutical that reduces the symptoms for ALS patients and provides significant relief and improvements, a previously unheard-of achievement although not specifically developed for that purpose. Despite that, on March 7, 2007, a settlement agreement between Genentech, Tercica and Insmed removed IPLEX from ALS patients in the US and throughout the world, with the exception of Italian ALS patients, a cruel settlement exclusion. While Italian ALS patients benefit from IPLEX, the rest of the ALS world suffers debilitation, deprivation and death.

    IPLEX is an improved version of Increlex, a drug originally intended to improve severe short growth stature. While both drugs accomplish that to a greater or lesser degree, only IPLEX significantly improves the quality of life for ALS patients. Despite that, persons with ALS lost access to IPLEX and are offered Increlex. After many months of usage, it is clear that IPLEX is the only drug that offers the greatest possible benefit to ALS patients. Nevertheless, it remains unavailable due to the greed of Genentech, Tercica and Insmed, all of whom agreed to this immoral settlement agreement in the name of corporate and personal profit.

    Attempts to procure IPLEX have failed, despite continuous contact with the CEO’s of all three corporations, media, judiciary, attorneys, Senators, Representatives and other government officials. Each blames or points to the other. No one takes responsibility for this travesty.
    Public demonstration is now the only recourse left to the ALS community.

    ALS robs its victims of all voluntary muscles, sentencing its victims to what is called “a brief life in a glass coffin” and death within 2 to 4 years. IPLEX is the only drug yet developed that significantly slows and in some cases reverses this devastating disease.

    Our hope is this demonstration will alert the public, our congress and the media to help force Genentech, Tercica and Insmed to release IPLEX. Join us in this critical effort. Help make IPLEX available to ALS patients to improve the quality of their lives, for however long that is.

    Scientific and demonstration activity details are attached. For further information, please contact:
    Andrea Reimers, RN
    Tel: 805-497-9844
    Kathy Thompson
    Tel: 757-407-9860
    Stephen Byer
    Tel: 608-698-4200

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