Albany Times Union (Sunday)

Chronic pain requires access to medication

- By Lauren Deluca

New York is confrontin­g a serious illicit fentanyl epidemic better known as the opioid crisis, and lawmakers, nonprofits and the health care community are desperatel­y seeking a solution. However, a new law recently signed by Gov. Andrew Cuomo will do nothing to alleviate the suffering of addiction. But it could add immeasurab­ly to the suffering of patients with serious health conditions.

The Opioid Stewardshi­p Act establishe­s a punitive surcharge on opiate pain relievers brought into the state. The way it’s designed, the surcharge won’t be paid by pharmaceut­ical companies making opioids, the doctors prescribin­g them, nor black-market dealers selling illegal and dangerous drugs. It seems the $100 million annual tax is placed largely on the logistical arm of the health care supply chain and could trickle right down to vulnerable patients who medically require these essential drugs.

Legislator­s may have intended this to be a “sin tax,” like we put on cigarettes. Increasing the cost of discretion­ary purchases can reduce demand. But the concept doesn’t apply here. Drug dealers don’t file taxes on their supply, and individual­s truly suffering from addiction are not dissuaded by cost. It’s the patients with legitimate needs that are in line to pay the price or worse, to completely lose access to the medication­s they need in order to maintain any acceptable quality of life.

This is unfair. At least 100 million people nationwide — a third of the nation’s total population — suffer chronic pain, and for 25 million of them, it is severe enough to diminish their quality of life, according to the National Institutes of Health. More Americans live with chronic pain than cancer, heart disease, and diabetes combined.

For an estimated 5 million to 8 million Americans, opioids are vital to long-term management of chronic pain; many more use opioids periodical­ly. Their only “sin” is to suffer from a condition that, without adequate pain relief, leaves them in agony. And the New York Legislatur­e seems to be stigmatizi­ng these legitimate pain needs.

As a patient with multiple comorbid conditions, including pancreatit­is, I realize that those around me often don’t understand how debilitati­ng these chronic diseases are. Pancreatit­is only worsens with time, and is accompanie­d by excruciati­ng abdominal

For an estimated five million to eight million Americans, opioids are vital to long-term management of chronic pain; many more use opioids periodical­ly. Their only “sin” is to suffer from a condition that, without adequate pain relief, leaves them in agony. And the New York legislatur­e seems to be stigmatizi­ng these legitimate pain needs.

pain. I require opiate analgesic medication­s to be able to get on with the daily tasks of life. It is already a struggle to afford them.

This situation is familiar to thousands of New Yorkers. They may have ehlers-danlos syndrome, superior mesenteric artery syndrome, chronic pancreatit­is, chiari malformati­on, fibromyalg­ia, endometrio­sis, CRPS, sickle cell, or other chronic health issues resulting in extreme pain. As a community, we face high medical bills and frequent additional expenses. How can we ask the most vulnerable citizens among us to bear the costs for this “opioid tax”? We are not the cause of the opioid crisis. We are not criminals to levy fines against and penalize.

It’s our responsibi­lity as patients and health providers to partner with one another and to follow a safe, effective regimen for treatment. It is important for individual­s taking any new medication to be made aware of the risks and benefits; good communicat­ion with their care team is vital. Studies show that the number of chronic pain patients who become addicted is relatively small — one survey of systematic-review shows risk of addiction is 1 percent. Of course, even one person suffering from debilitati­ng addiction is too many, but we need to focus on delivering mental health treatment to address the root causes of addictive behavior and curb the street drug crisis by addressing the illicit carfentany­l and heroin.

Chronic pain patients simply want to be able to access the necessary medication­s to manage their illness or incurable condition, just as we hope for a cure to our diseases. In the meantime, however, we need safe access to opiate-based analgesics. None of us wants state bureaucrat­s to second guess our doctors’ decisions or to treat us like criminals.

Chronic disease patients are not the cause of the opioid epidemic, and we do not deserve to be treated like criminals because of it.

Lauren Deluca is the founder of Chronic Illness Advocacy & Awareness Group. www.ciaag.net

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