ICN Legislative Team: Lee Sampson Martha Steinman Join us! If you have an interest in political action, please join our efforts! Write a team member today for more info on how you can get involved. Useful Links: Did you know that you can easily look up your senator or congress person on-line. Just use the Contact the Congress web site. Write Frequently: Pour the frustration, pain or anger you feel during your flares into a constructive purpose! Even if it is the middle of the night, strike pen to paper and share with them your life, your struggles and your need for their advocacy on your behalf. Your letter could be the one which turns the tide! State Advocacy: States are often more responsive to public need and the creation of new legislation than the feds. Call your State Representatives and find out if you have a "Pain Advocacy" bill. Request it. Read it. Criticize it. Ask for more if needed!

ICN Activist's Corner - Every Voice Counts

Oct. 99 Legislative Alert - The Story of Three Pain Bills There are three bills pending in the US Congress which can effect the lives of those suffering with chronic, intractable pain or the pain associated with terminal illness. Two of the bills "The Conquering Pain Act" (sponsored by Sen. Ron Wyden, Oregon) & "The Advance Planning & Compassionate Care Act" (sponsored by Jay Rockefeller, West Virginia) will help promote progressive legislation for compassionate treatment of pain patients. One bill, "The Pain Relief and Promotion Act (S.1272)" (sponsored by Sen. Don Nickles, Oklahoma) may have unfortunate consequences for the pain patient. It is urgent that you familiarize yourself with all three bills and then contact your senators and representatives immediately! Remember, letters are more effective than e-mail. The Hyde bill was passed by the House of Representatives in late October. It is now under consideration by the Senate. The other two bills are currently under consideration by Congress.

ICN Position Statements & Resources

The Pain Relief and Promotion Act - A Real Threat - Why We Support Two Better Alternative Bills - Our position on HR 2260.

Greater Access to Better Health Care - Supporting The Conquering Pain Act - Two bills which more positively treat the chronic pain patient.

Advance Planning and Compassionate Care Act of 1999 - Commentary

American Pain Foundation Advocacy - with highlights of the bills.

APF Alert To Congress - listing flaws in 2260 and organizations that stand "for" or "against" the bill.

APF Legislative Action Center

RECOMMENDED SAMPLE LETTER Dear Senator _________________________________________________ I am writing to urge you to vote: YES on the Conquering Pain Act YES on the Advance Planning and Compassionate Care Act NO on the Pain Relief and Promotion Act. The Conquering Pain Act gives greater access to better health care. It would also establish ongoing studies, development of measures and standards of quality control, national demonstration programs and reports that will lead to a national forum on ways new research can be implemented to further good pain management. Passage of the Conquering Pain Act would add "pain" as the fifth vital sign. The Conquering Pain Act would improve pain management and provide relief for millions of sufferers of chronic and intractable pain. The Advance Planning and Compassionate Care Act expands Medicare coverage to include oral drug therapy where it is now limited to medications administered by portable pump. It will ensure that our advance directives be followed in all States and let those facing the end of life choose how to live their final days with dignity. I urge you to vote NO on the Pain Relief and Promotion Act as it will seriously threaten access to pain medication by those in chronic pain. It will put patients, doctors, and law enforcement against each other and dangerously compromise pain management treatment. It injects Federal authority into an area previously left to the States. I have Interstitial Cystitis disease--an extremely painful bladder disease. Interstitial Cystitis is a disease that affects an estimated 700,000 people in the U.S.- including men, women and children. Dr. Dan Brookoff writes: "For many patients with chronic interstitial cystitis (IC), pain is the prominent feature of their lives. Although the pain of IC can be comparable to that of advanced cancer pain, interstitial cystitis has not yet attracted much attention from physicians specializing in pain treatment." (Interstitial Cystitis, "Chapter 23: The Causes and Treatment of Pain in Interstitial Cystitis;" Lippincott-Raven Publishers, 1997, Page 177) "A landmark study conducted in 1987 by Dr. Phillip Held, then at the Urban Institute in Washington D.C., found that patients with interstitial cystitis...rate their quality of life as worse than do patients on kidney dialysis." (Jane Brody, Personal Health, New York Times, January 25, l995) It is imperative that there be compassion and understanding of IC from physicians, ER staff, employers, disability investigators, families of IC patients - the general public. In layman's terms, the pain of IC has been described as comparable to passing kidney stones, transition in labor and childbirth, and some kinds of cancer pain. The intensity of the pain is explained in that the pain travels up "silent" afferent nerves that are never activated in the lifetime of a normal person's bladder. Your support of the Conquering Pain Act and the Advance Planning and Compassionate Care Act will allow people to live better lives with more appropriate pain management. Conversely, your no vote on the misguided Pain Relief and Promotion Act is urgently needed to safeguard better pain management. Sincerely, Your Name Written for the ICN by Lee Sampson.