Sunday, February 22, 2009

When You Have Parkinson's Disease, a Month Is a Long Time

Obama Disappoints but We're Keeping the Faith
Last week February 15, 2009 President Barack Obama disapointed most members of the movement disorder communities by not issuing a new stem cell executive order that would allow research and funding for embroyic stem cells to resume in the United States. During the campaign, he promised to do this as soon as he took office.
Perhaps the President and his staff don't realize how long it takes to develop new treatments, test them and get FDA approval. Patients who are in the latter stages of a chronic disease can't wait. Time is life or death for them. We need cures and treatments that stop progression and we need them now.

Hundreds of new stem cell lines were developed without federal assistance since George W. Bush imposed the ban in 2001. Some of those lines could have already led to cures for diseases like Parkinson's, Huntington's, MS, ALS and others. Eight years is a very long time in a medical research lab. Had the ban been lifted when the legislative branch tried to do so, more treatments might be available now and basic medical understanding could be even greater.

Doctors and researchers are surprised and disappointed that the President hasn't acted yet. A month is a long time if you or one of your loved ones are enduring the torture of an incurable disease.

Of the executive order which Obama advisor David Axelrod said the president was "considering that now" we have heard nothing despite the promise. Some see that as a distancing from Obama's pledge and consider the lack of action as perhaps a sign of a potential compromise with pro-lifers.

No one expected the implementation of a universal health plan immediately because that is an expensive proposition which will take a long time to properly develop. Overturning a 2001 executive order should be a matter of a few hours of paperwork; it requires no other expense or ceremony. Even lifting the ban without providing funding would have been a good step because it would have freed monies used for duplication of university facilities.

On January 22, 2009 the President quickly signed executive orders reversing President Bush's policies on torture/treatment of terriorism suspects. While the documents were full of loopholes, at least he took the first step.

In the past Obama expressed concern about torture, as a senator he stated in opposition to a bill approving torture, S3930, "Fundamental human rights"..."should be bigger than politics." So in a matter where the issue is man against disease, his lack of action on the stem cell research issue is confusing, surprising, disheartening, infuriating and is seen as a betrayal of a basic promise and a support of the torture brought on by diseases which might be treated or cured with the development of additional stem cell research.

Perhaps our health is not larger than politics.

2/23/09 Update
Here's what we do know: On February 6, 2009 the Coalition for the Advancement for Medical Research (CAMR) sent a letter to the President requesting the issuance of an Executive Order reversing the stem cell research policy of the previous administration.
You may link to Parkinson's Action Network and the links for sending your own email to the President:


  1. My mom had Parkinson's and I, her daughter, was her primary (and mst of the time-only) caregiver. I have seen this disesase up close, and I ache to think that we are so close, and yet so far to a cure.

    ~Carol O'Dell
    Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir
    availble on Amazon

  2. You have been there and know first hand who painful a journey PD can be.
    At the end of one road lies a cure. Whether it be through stem cell research or another direction, the cure will one day be found.
    For now we can treasure the time we have,trying to make each day better by waking up, breathing and at some point smiling.

    Parkinson's Focus Today


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