As a patient advocate, I have witnessed firsthand the devastating effects of policies leading to untreated and undertreated pain. As a mother who has lost a child to drug poisoning, I have also witnessed how drug policy is driving an increasingly lethal street drug supply. With overdose deaths rising, well-intentioned policies have left many suffering without the medications they need for quality of life. Tragically, some patients, overwhelmed by unrelenting pain, are taking their own lives. My aim in writing this is to highlight the current pain care crisis and call on medical professionals and policymakers to restore rational, balanced practices that prioritize patient care.

Since the CDC published the opioid guideline in 2016, people with chronic illness, injuries, and the elderly have been ensnared by restrictive policies, barriers to care, and stigma. These individuals—our family members, neighbors, and friends—face immense challenges in accessing needed care and medicine. Without proper pain care, people face insurmountable challenges. As an advocate, I’ve seen functional, active people have their lives destroyed when providers tapered or discontinued their pain medication; left to deteriorate behind closed doors, becoming housebound, some bedbound. Many, overwhelmed by constant pain and no hope in sight, are choosing to end their lives. Others are dying of sudden cardiac arrest or stroke, as untreated pain often leads to pain-induced hypertension and other serious health conditions. Then there are those who, desperate for relief, turn to the streets where they unknowingly obtain counterfeit pills and die by drug poisoning, like my daughter.

Medical professionals find themselves at the front lines of this crisis, navigating a minefield of regulations and societal pressures while striving to provide patient-centered care. The fear of legal repercussions and professional backlash often forces doctors to under-prescribe or deny needed opioid pain medicine, undermining trust between patients and doctors and making it difficult, if not impossible, for patients to receive the care they need.

Doctors must advocate for balanced, rational approaches to pain management, considering individualized risks and benefits while focusing on the needs of patients. By standing up to regulatory pressures and focusing on individualized treatment, medical professionals can help restore humane and effective pain care. This will require participating in policy discussions, supporting objective research on opioid pain management, and educating peers on the importance of compassionate, patient-centered policies that include the option for patients to receive opiate medications through informed consent.

Patients are urged to advocate, not only for themselves but also for doctors. This expectation is burdensome, especially for those who are very ill, injured, or elderly. Many patients who are now without adequate pain management are extremely vulnerable and debilitated. The physical and emotional toll of their conditions often makes self-advocacy nearly impossible, let alone being able to fight governmental and medical institutions.

Additionally, patients are often not viewed as qualified or credible enough to advocate at government policy levels on this issue. Even when given a platform to speak about their experiences, stigma and bias surrounding opioids lead to perceptions by many that patients “just want their drugs.” The level of advocacy required cannot be accomplished by people who are seriously sick and/or injured, highlighting the urgent need for healthy advocates and medical professionals to take a stand. Without this support, the cycle of suffering will continue, with dire consequences for vulnerable individuals and society.

Government policies have a profound impact on medical practice. While the CDC’s “opioid guideline” was intended to curb opioid misuse, it resulted in unintended consequences that are harming patients in genuine need. Prescription drug monitoring programs (PDMPs), for instance, were intended to help doctors and pharmacists ensure quality care. But the use of PDMPs as a law enforcement surveillance tool has created a chilling effect, leading to widespread under-prescribing due to fear of legal repercussions.

Another significant issue is morphine milligram equivalent (MME) limits. The principle of “go low and slow” in prescribing opioids has always been widely accepted, but the MME limit has no solid footing in medical practice. MME limits primarily serve as another litigation tool against physicians. This arbitrary cap prevents doctors from providing individualized care that best meets each patient’s unique needs.

It’s crucial for medical professionals and policymakers to address the gaps and shortcomings in current pain management policies. The following steps are essential:

• Eliminate law enforcement involvement in PDMPs: Ensuring that prescription drug monitoring programs are used solely for medical purposes, without the chilling effect of law enforcement oversight.
• Reassess MME limits: Reevaluate the maximum morphine milligram equivalent limits to reflect individual patient needs and medical judgments rather than arbitrary caps that hinder effective care.
• Advocate for patient-centered care: Medical professionals must champion policies that prioritize the well-being of patients, standing up against regulations that compromise their ability to provide compassionate, individualized treatment.
• Support balanced research and education: Invest in a wide range of research to develop better pain management practices, ensuring that studies are not biased against opioids. Educate health care providers on the importance of balanced, evidence-informed approaches.
• Amplify patient voices: Ensure that patients suffering from chronic pain are involved in policy change by giving them a platform to share their experiences and needs without stigma. Their insights are invaluable in shaping policies that truly serve the patient community. Too often, patients advocating for opioid-based treatment are silenced or dismissed as “merely seeking drugs.”

By taking these steps, we can move towards a health care system that balances preventing potential harms with the necessity of providing humane and effective pain management.

We must do better if saving lives is the objective. It’s essential to recognize that each patient’s needs are unique and must be addressed with compassion and evidence-informed care. The current approach of broadly restricting access to pain management solutions is failing too many and causing unnecessary suffering and death. By reevaluating policies and practices, we can create a health care system that truly serves and protects everyone, ensuring that patients receive the care they need while also addressing the root causes of problematic substance use.

Arianne Grand-Gassaway is a patient advocate.