Editor’s Note: This article was submitted to National Pain Report and published in its entirety. The content is the sole opinion of its authors.

Notes on a Telephone Conversation with Thomas Novotny, US Assistant Secretary for Health and Human Services.

By: Lana Kirby and Richard A. Lawhern, Ph.D.

On September 19, 2016, chronic pain advocate and activist Lana Kirby spent nearly an hour in a telephone conference with Thomas Novotny, the US Assistant Secretary for Health and Human Services. The occasion for this interview was President Barack Obama’s declaration of the week as “Prescription Opioid and Heroin Epidemic Awareness Week.” The points which Lana offered to Mr. Novotny are central to ongoing efforts to dissuade the US government from being a party to abuse and denial of appropriate medical care to millions of chronic pain patients.

The association of prescription opioids and heroin in a claimed “opioid epidemic” is grossly inaccurate propaganda. The heroin “crisis” wasn’t created by prescription drugs and it won’t be solved by denial of medical care to people in pain. Although opioids are not risk-free, only a small minority of chronic pain patients develop an abuse disorder. Likewise, statistics on causes of death have been manipulated to create an “epidemic” that does not in fact exist.

While diversion and abuse of prescription opioids are issues for recreational users of drugs, the huge majority of patients who are prescribed narcotic pain killers are taking these medications solely in an effort to attain their highest level of functioning possible. These are medications of last resort, taken only when other therapies fail and the patient continues to be in unbearable pain. There are no other effective alternatives.

Millions have taken opioid medications for years under doctor supervision, at stable doses and with minimal risk of opioid abuse disorder. Some of these people are now dying in agony because their doctors have unilaterally reduced medications known to work well for them – or outright discharged and deserted them to go through opioid withdrawal without help.

As a chronic pain advocate, Lana works with a Facebook group called “Veterans & Americans United for Equality in Medical Care.” She communicates daily with people who are struggling to maintain their quality of life – any quality of life – despite efforts by the US Centers for Disease Control, Food and Drug Administration, Drug Enforcement Agency and even the Surgeon General, to force chronic pain patients off opioids. These efforts ignore the reality that there are no practical or reliable alternatives to opioids in present medical practice. But the US government doesn’t care.

Lana explained to Mr. Novotny that she hears from people every day who have gone from almost fully functional to bedbound due to a complete disregard for any humanity toward pain patients on the part of their government. They discussed — and Mr. Novotny AGREED (in fact said that he was aware of the facts) — that people with severely debilitating disease processes or injuries are being denied necessary medication which would enable them to lead a somewhat normal life. Yet Novotny seemed totally disinterested in changing this sad state of affairs.

Much of this horrific abuse can be laid at the feet of the March 2016 guidelines issued by the US CDC to general practitioners for prescription of opioids in adult non-cancer chronic pain. Though phrased as “voluntary”, the guidelines are in fact nothing of the sort. Pain management specialists accurately perceive that if they violate the guidelines in order to treat patients’ pain, they may be maliciously prosecuted by the DEA on false charges of running “pill mills”. Even if they win, the DEA will ruin them. As a direct result, doctors are leaving pain management practice. Many of their patients are being cut off cold-turkey from the only meds that allow them to function.

Adding insult to injury, the US Surgeon General has sent a letter to every physician in America, asking them to continue reducing pain medications to patients who are using them without problems or abuse, in full compliance with the law in all respects. Dr. Murthy’s letter continues the barrage of misinformation and stigma directed at pain patients in a supposed effort to stop an “epidemic” of opioid overdose deaths. A major problem with this approach is that it doesn’t address the real problem of street drugs, while it sets up pain patients as scapegoats for outright medical abuse.

Lana shared examples with Mr. Novotny of the damage being done by the CDC guidelines and restrictive State laws which reflect these guidelines.

A patient was sent home by his doctor without medication after years of using opioids at high doses for pain control. Due to the fact that he wasn’t properly titrated and was discharged without medical supervision, his blood pressure soared. He became nauseous. While home alone, he fell in a shower stall, aspirated as he vomited and underwent a massive stroke. He died at the hospital, leaving two daughters behind.

Lana was contacted by phone by a hysterical woman from Pennsauken, NJ who was afraid her husband was going to commit suicide. He is five years status post-renal transplant and suffers from severe peripheral neuropathy, rheumatoid arthritis and a host of other ailments. He was in ICU in December when his medicine was cut by 50%. He is now off all pain medication and is completely bedridden. In fact, he has pressure ulcers (bed sores) on the bottoms of both feet. This lady cannot take him to the emergency room, because it is widely known in New Jersey, that no pain relief will be afforded; rather he may be committed to a lockdown facility as an addict.

Mr. Novotny offered no suggestions on how to help these people, other than calling a suicide hotline. He appeared fully aware that cases such as these are happening routinely all across America.

The discussion then turned to the National Pain Strategy. After years of work by US government inter-agency working groups, a comprehensive strategy for pain research, education, and treatment standards was published in March 2016 – shortly before the CDC opioid guidelines. The pain strategy has effectively disappeared since, buried in the controversy over the CDC guidelines. It isn’t funded. And in Mr. Novotny’s opinion, it won’t be funded, absent a very large showing of people in severe pain and suffering, along with thousands of letters to Congress.

According to Novotny, no rush will be placed on the National Pain Strategy until pain patients make it politically too expensive to ignore. He compared this situation to the attention gained by the “Black Lives Matter” movement, when activists were able to form a strong protest. A major difference is, of course, that black activists are not the frail, the injured and the devastatingly ill who are physically unable to speak for themselves, and socially isolated from other people who might speak for them.

Lana has followed up this teleconference with email correspondence directed to both Mr. Novotny and his boss, Sylvia Burwell, the US Secretary for Health and Human Services. She has outlined her understanding of the telephone conversation and invited both to speak at the Washington Rally Against Pain to be held on the Ellipse (Presidents’ Park) on October 22. So far, neither of these folks has chosen to respond to the invitation. Given the attitudes expressed by Mr. Novotny, we cannot be terribly surprised at their disinterest.

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