As a wave of investigations and prosecutions of doctors prescribing opioid pain relievers to chronic pain patients spreads across the land and professional medical organizations for the most part muster only a lackluster response, patients and doctors have begun to organize themselves to defend their right to adequate treatment of pain. One of those efforts flourished in Mississippi and Arkansas beginning with the formation of a chronic pain patients' movement in Fort Smith, Arkansas, in 2001, and now pain patients' and doctors' groups based there are heading for Washington, DC. They are seeking acknowledgement of their pain, to rein in the DEA, and congressional hearings to address the entire topic of pain treatment and the war on drugs.
The National Pain Patients' Coalition (http://www.paincoalition.us), the American Pain Institute (http://www.americanpaininstitute.org) and the National Juneteenth Medical Commission (http://www.19thofjune.com), grassroots pain advocacy organizations all, are convoking a March on Washington and days of lobbying Congress, with actions in the nation's capital beginning Sunday and continuing through Wednesday. While the pain groups' names signal a national ambition, they are an outgrowth of that early organizing in Arkansas and Mississippi, and at this point remain essentially Southern groups. Still, said Jean Bancroft, public relations director for the march, the group expects to see patients from across the country in Washington and hopes to draw at least 2,000 people.
"The DEA war on drugs has turned into war on pain patients and the physicians who treat them," said Virginia Brooks, a chronic pain patient and leader of the National Pain Patients Coalition (NPPC). "Unable to find a doctor willing to treat them, many pain patients are choosing suicide over living with chronic pain."
That is a personal choice and not a solution she would choose for herself, Brooks made clear. "Look," she said, "if someone takes a bottle of pain pills and kills himself, that's his responsibility. Why would you go after a doctor because his patient reached a point where he can't take anymore? But suicide isn't an option for me," the staunchly Baptist Brooks told DRCNet. "I'm in great pain, but that's not as bad as the pain of hellfire."
But for others who perhaps do not share Brooks' strong faith, chronic pain means choosing between the mercy of an early death, the agony of not being adequately treated for pain, or the danger of being labeled a "doctor-shopper" or "pill head" or, worse, being arrested, convicted, and imprisoned for taking whatever steps necessary to ease the pain. The American Medical Association puts the number of Americans in chronic pain as high as 70 million.
The Rev. Ronald Myers, Sr., MD, founder of the American Pain Institute, put the number a little lower, but the message is the same. "Over 50 million people are living in untreated, disabling pain," said Myers. "The DEA has unjustly prosecuted many physicians who treat chronic pain, shutting down their medical practices and in some cases, trying to give them long prison terms. The irresponsible actions of the DEA witch hunt of many good physicians who treat chronic pain has led to a health care catastrophe in America," Myers continued. "Far too many people have chosen suicide over living with untreated chronic pain. The DEA's hysteria over Oxycontin, and now hydrocodone, which the DEA is trying to make a schedule II narcotic drug, we hope will be quickly investigated by Congress to turn the tide on the epidemic of pain patient suicides. The increased suicides among chronic pain patients demonstrates the morally reprehensible actions of the DEA."
"I was resting when you called," National Pain Patients Coalition head Brooks told DRCNet Thursday. "I was lying down because I don't have enough strong medicine to take because these people think that people in pain just don't exist. People look at me up and down and say, "oh, she's not hurting so bad," but they don't know. I'm hurting real bad," she said. "I have spinal bifida and degenerating discs in my spine, for starters," she explained. "There's nothing wrong with my brain, but the pain is what gets me."
"At the beginning, I thought I was alone," said Brooks, "but I had to do something. I became the first patient to step out. I got up on the steps of the capitol in Jackson and spoke out, and the Associated Press ran a story with my photo, and it has just taken off from there," she explained. "I became the founding member of the National Pain Patients' Coalition, and now I get so much e-mail and so many phone calls about it I can barely keep up. They come from all over the country."
Brooks will go to Washington despite the pain, as will Bancroft, and countless other patients who are willing to face the agony of travel in an effort to improve their lives and the lives of millions of others deprived of adequate treatment because of drug war policies. "I can't believe I'm going to do this, but yes, I am going," said Bancroft, who told DRCNet a similar trip had left her hospitalized for two weeks. "I will pay for this dearly. It is not a sacrifice. In some ways, being sick is a blessing because you know how precious being healthy is. I have to go," she explained.
The effort aimed at Washington had its genesis in the DEA persecution of Fort Smith, Arkansas, pain specialist Dr. Terry Brackman in 2001. "I came to Fort Smith in 2001 because there was a clinic there where the doctor had lost his DEA license. He was practicing pain medicine and wanted to know if I could help out," Myers said. "Dr. Brackman's patients had no where to go, some of them committed suicide. It's a 12-hour trip to Fort Smith, so I prayed about it," said Myers, a Baptist medical missionary who wears the title "Reverend" before his name as proudly as he wears the title "MD" behind it.
"When I got there and saw what was going on, I said to myself that we had to get organized into a political force to fight this. When I organize people, I put them in charge. I come out of a civil rights background, and what I noticed was that no one was speaking for the patients. There were doctors, pharmacists, organizations with big grants, but they were not empowering the people who had the problem. I made sure these people would be empowered," he said. "As a physician, my role is to be supportive of the patients, and other doctors involved are doing the same."
As Myers and Fort Smith doctors and patients rallied around Dr. Brackman, down in Mississippi, Virginia Brooks was suffering. In what she described as something akin to an act of divine intervention, she sought Myers out. "Almighty God, I was standing around with a bag full of medicine that wasn't working. I was angry inside and didn't know it. Out of the blue, something told me to call Dr. Myers. I asked myself why I was going to yet another doctor who couldn't help, so I called to cancel the appointment, but when I opened my mouth, all I could say was that I needed to reschedule. I came in, and Dr. Myers could see I was so angry inside and he prayed for me and we've kept in close contact ever since," she said.
"The more I find out, the angrier I get, and the angrier I get, the more I pray," Brooks explained. "I don't pray harm on the doctors and DEA men and lawmakers, but I do pray they could be in my shoes for just 30 seconds. I think they would come around quick then."
Meanwhile in Arkansas, thanks to Rev. Myers, Dr. Brackman, Dr. Robert Kale (see interview this issue), and their patients and sympathizers, a grassroots pain movement was taking shape. Inspired by the investigations of Brackman and Kale, Myers led protest rallies at the Arkansas State Medical Board where, among other things, protestors called for the resignation of board chairman Dr. Ray Jouett for his callousness toward pain patients and physicians.
Those actions led to the formation of the Arkansas Coalition for Patients Rights and Chronic Pain Management, which successfully pushed through the 2003 Arkansas Chronic Pain Treatment Act, a measure that specifies that physicians are indeed allowed to prescribe adequate pain medications without fear of prosecution or investigation. "The coalition wrote the first draft of that legislation," said Myer. "If not for the coalition, there would be no Arkansas Chronic Pain Treatment Act."
Out of the Arkansas Coalition grew the National Pain Patients Coalition, which is now supporting similar legislation in Louisiana, Michigan, Mississippi, New Jersey, and Oregon, and fighting against prescription monitoring legislation in Florida and wherever else drug czar John Walters can convince solons to author bills that would advance his crusade for a national prescription monitoring system.
"We tried to get the strongest chronic pain bill in the US passed this year in Mississippi," said Brooks, "but it didn't even get to committee. The lawyers killed it." Now, in addition to waging the battle state by state, the pain patient groups are taking it to Congress. "The only way the situation will be changed around is through Congress," Myers explained. "Only Congress can demand accountability from the DEA and IRS. Nothing else will help. They have this phony drug war and are looking for easy targets. We have to do this march on Washington to get congressional hearings, and to bug Congress to death."
"We know a lot of pain patients are too sick to go because of their pain, so those who can make it will go, and for those who can't, we'll show them how to bug their congressmen from afar," said Myers. "That's what I've been working on."
The strategy is already paying dividends, said Myers. "We have meetings scheduled with various congressmen for Monday and Tuesday, and we're working out scheduling conflicts to have a meeting with DEA director Karen Tandy and Attorney General John Ashcroft. One of the things we want to ask them is why the DEA won't return Dr. Kale's certificate. It's been seven months since the Arkansas medical board said to do it, but they refuse."
It's all about reducing the pain, said Brooks. "We want the pain reduced," Brooks said. "I know I can't be free of pain, but can't they at least reduce it? But the doctors say they're scared to do that, so my back gets worse and I end up where I can't walk and I have to be hospitalized. They say pain patients are depressed, then they give us antidepressants that make things worse. They say we're agitated and angry. Well, we are. We're agitated and angry at the system and the DEA. Why do these people without a medical degree get to determine how much medicine we need?"
View the Arkansas chronic
pain act online at: