Thursday, September 9, 2010

Update- Talking to Senate

Senator Scott Brown's (R) office called my home today, for the second time, in regards to my e-mails about RSD, chronic pain and rare diseases.  While I was on the phone, I made sure to address about my concerns about the lack of a 'Pain Act'.  I hoped that Senator Brown would be interested in supporting such an issue.  The represented on the phone assured me it was an e-mail he was 'sure to stumble across', and would be in contact with me in the future.
We shall see.  But again- baby steps make a difference.  At least now I know their office is keeping up on the issue.  If they do not, well, I have been talking to local representatives and other officials I am sure would like my vote in the future, and have been listening to me from the start.

So this is the document I make all the hype about:
   The Americans with Pain Rights Act

All across our Nation from all walks of life too many Americans suffer from chronic Pain. Their dried voices remain mute and distant as fading stars to the health care industry that continues to neglect their pain without just cause. As Human Rights Watch indicated last year in their report on pain care, pain causes “terrible suffering”. Too many Americans suffer terribly from pain- which is for many a “life- ruining condition”. Even infants in neonatal intensive care are not immune to poor or even absent pain care which research has shown has long term consequences for their well being. In addition to the 77 million Americans that suffer chronic pain each year, many more will suffer as pain from arthritis, neuropathy, diabetes, obesity, back pain and painful procedures is rapidly on the rise-as are the costs for pain care. Last year, the University of Ohio Medical Center indicated chronic pain is our Nation’s most costly health condition. The economic cost to society for pain is estimated at $300 billion per year-and rising rapidly. The human toll of suffering due to careless neglect shall not stand.
Despite the terrible cost to Americans, as the 2009 report “A Call to Revolutionize Pain Care In America” indicates pain remains “tragically overlooked”. We believe pain will continue to be tragically overlooked unless and until the Federal government creates an energetic pain rights act for all Americans. We call on you to make adequate pain care for all Americans the law of the land. We call upon you to memorialize a Pain Bill of Rights as follows:
All health care providers providing treatments for pain be required to have thorough education in pain care as part of their professional licensing.
Enforce  International law against cruel and degrading treatment in pain care including- no one will be denied adequate pain care on the basis of whether or not a health care provider believes the person has pain, or has a history of substance abuse or believes that treating pain will interfere with their own goals/objectives as medical providers. Pain relief needs to be patient –centered and not medicocentric. The federal government shall investigate and impose fines on any provider that fails to honor the Pain Rights Act.
A pain registry shall be established which will allow all citizens in keeping with Recommendation 86-6 of the former ACUS to report and share their experience with all other Americans.
The Department of Health and Human Services shall spend no less than 4% of the research budget on pain . Pain shall be officially designated as a disease and have its own institute at NIH- The National Pain Institute” A much more diverse research agenda beyond the biomedical paradigm should be created.

The research agenda at NIH and IOM on pain must include 50% representation from advisory committees for people in pain who are removed to the seventh degree from people in the medical field.
Research needs to include much more primary prevention, curative and regenerative treatments so that people in pain aren’t forced to be dependent on suboptimal pain treatments indefinitely.
People with pain shall be given much more adequate information about treatment options whether they are officially recognized or not and their own decision support systems which are adaptive.

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