Advocacy Update

We have worked several months with a small group of organizations to form the Pain Care Forum. (PCF) The PCF is a group of over 30 organizations---professional associations, consumer organizations, industry members and others--- which focuses on pain policy issues. It was formed to combat the fragmentation of knowledge and fragmentation of effort that exists in the pain community. The two goals of the PCF are to: 1) Provide a forum for the exchange of information and ideas about pain policy and legislation and 2) Support collaborative actions on common concern issues.

Congressional Hearing On Pain

We have been working with the members of the Pain Care Forum to stimulate congressional interest and action on pain. In April Congressmen Deal of Georgia, the Chairman of the Health Sub-committee concluded that the issue deserved a Hearing in his committee. This is an extraordinary opportunity to bring attention to a great many issues that contribute to the epidemic undertreatment of pain. We expect that the hearing will reflect the structure of the National Pain Care Policy Bill, H.R. 1020, introduced by Congressman Michael Rogers of Michigan. We hope that the hearing will expose the problems of: Education-- for example, that most pain patients go to several physicians, sometimes for several years before getting an appropriate diagnoses and treatment; Access—the numerous issues from costs, insurance coverage, and detrimental DEA, law enforcement, and state Medical Board practices and policies; and Research—the extraordinary lack of support for research on pain, including the point that less than 1% of the NIH research budget targets pain research. We also hope that the members of the Committee and Congress will have a vivid picture of what it is like to live with chronic pain and the toll pain takes on individual lives, families and the nation.

Advocacy regarding the National All Schedule Prescription Electronic Reporting bill, S. 518

This bill, and it companion bill in the House, H.R. 1132, proposes to stimulate Prescription Monitoring Programs (PMP) in all states. We have challenged the bill on several grounds all related to the point that PMPs may contribute to the “chilling effect” and therefore may contribute to diminished access to appropriate pain medicines by pain patients. The Senate moved a version of the bill from Committee in May which reflects our interest in determining the impact of PMPs on patients’ access to pain medicines. The current Senate version of S. 518 requires that Health and Human Services study the impact of PMPs on pain patients’ access with existing PMP programs. If there is substantial negative impact on access, HHS can alter requirements of the PMPs to counter the damaging effects. These bills have a distance to go before approval and we are working to “take other bites out of the apple” to improve the impact on pain patients.

Mobilization Project

In April we launched our Mobilization Project which intends to inform, stimulate, motivate, and harness hundreds of thousands of voices of people affected by pain. We installed an internet capacity to do e-mail Alerts and Calls to Action which make it easy for anyone affected by pain to take action. We launched the project with a call to action to support H.R. 1020, the National Pain Care Policy Act in April and generated over 1,300 letters to particular members of Congress in a month. The project will develop capacity to take a variety of actions including phone calls, faxes, contacting the media, and personal visits. It will direct action to a variety of issues and causes including legislation, hearings, regulatory issues, state issues, and public awareness issues. Our last Alert was in collaboration with the National Vulvodynia Association regarding a Congressional Briefing on Pelvic Pain and generated over 3,500 letters in a few weeks! We envision that this capacity will grow and that eventually we will be able to generate 100,000 actions.

IT IS THE VOICES OF PEOPLE AFFECTED BY PAIN THAT WILL MAKE THE DIFFERENCE. PLEASE ADD YOUR VOICE TO THE CHORUS—TAKE ACTION!!!!

Stay tuned, there will be many calls to action as we approach the Congressional Hearing and Pain Awareness month in September.

Hill Day

The Partners for Understanding Pain is organizing a Hill Day on September 14th. There will be a gathering on the steps of the U.S. Capitol in the morning before participants fan-out to visit their Congressmen to urge support for the National Pain Care Policy Act. Please plan on attending and make your presence and message known to the members of Congress. More information to follow.

Amicus Briefs

APF is working on two briefs, one concerns the case of Dr. William Hurwitz and the other concerns Gonzalez vs. Oregon. Each case has potential, serious, negative consequences regarding legal precedents and the practice of pain medicine.

DEA and Freedom of Information Request

APF submitted one of the over 500 responses the DEA received from its request for comments following the DEA’s withdrawal of the “Prescription Pain Medications: Frequently Asked Questions and Answers for Health Care Professionals, and Law Enforcement Personnel.” We have requested access to all of the comments through the Freedom of Information Act and plan to document the details of what we estimate to be overwhelming rejection of DEA policy from a broad cross-section of the pain community, including some from law enforcement.

Preferred Drug Lists (PDL)

APF is investigating ways to influence the process that states use to develop their Preferred Drug List for Medicaid. The outcomes of the process in many states is not beneficial to pain patients since there are many important pain medicines that do not get included on the lists. States deal with competing goals of producing a list that saves money for the state and a list that fairly and appropriately serves the medical needs of their populations.

Power Over Pain

APF, in collaboration with the American Alliance of Cancer Pain Initiatives, is supporting grassroots public awareness and advocacy work in seven states, Louisiana, Florida, Maryland, Connecticut, Vermont, Massachusetts, and Kansas. We will be soliciting applications from State Pain Initiatives in other states to add seven more states to the Power Over Pain roster.

DEA and Procurement Quotas for Pain Medications

In the span of two sentences in the omnibus appropriations legislation at the end of 2004, the DEA was given authority to effectively veto any FDA drug approval. This language could have disastrous effects on the release of pain medicines since the DEA, by withholding it “review and public comment” of FDA approved drugs, can effectively block the marketing of drugs that the FDA has approved. APF and a number of other organizations have contacted key members of Congress to strike this language and its implied authority from the law. We have also contacted the media to raise awareness of this subtle but threatening action. Stay-tuned.