Cindy Steinberg, National Director of Policy and Advocacy, was one of the numerous people with pain to speak at the the Food and Drug Administration (FDA)’s “Patient-Focused Drug Development Public Meeting on Chronic Pain” on July 9. The event drew an at-capacity audience in the auditorium, on the phones, and through a web portal. Dr. Sharon Hertz, Director of the FDA’s Division of Anesthesia, explained to the crowd that she and her colleagues were there to better understand the impact of chronic pain, patient perspectives on current treatment regimens, and the challenges or barriers patients face in accessing treatment.

Two panels of patients were chosen to tell their stories. The first panel discussed the debilitating symptoms of chronic pain: not only the panelists’ struggle with pain itself, but also how it increasingly deprived them of fundamental life activities like sleeping, working, socializing, and relationships.The second panel of patients spoke about the numerous effective (or often ineffective) treatments they had tried.

By far, the most frequent, resounding, heartfelt and, at times, disturbing message voiced by the patients was the barriers many had encountered accessing opioid medication that allowed them to function and have some quality of life when nothing else did. Patients said they feel stigmatized, dismissed, ignored, invalidated, and isolated.

These patients spoke about being forcibly tapered off their opioid medication, cut off suddenly, or dropped from care completely, often with no guidance on how to locate a doctor that would treat them. Several told of pharmacies who refused to fill their legitimate prescriptions and emergency rooms that turned them away when they were having a pain crisis. Patients even spoke about seriously considering suicide; one of the panelists said her pain was so bad that she often wished she wouldn’t wake up in the morning.

Many patients blamed the Centers for Disease Control Guidelines for establishing arbitrary dosage limits that physicians are fearful of crossing, even for patients with severe pain or advanced disease progression.

“The FDA heard a consistent and disturbing cry for help from patients who participated in today’s meeting about the inhumane way legitimate, sick patients are being denied medication that has worked for them for years, for no good reason,” says Steinberg. “The question now is what will FDA do about it?”

U.S. Pain Foundation encourages people living with pain to write into the open public docket about the impact pain has had on your lives, how well your current treatment regimen manages your pain, and what barriers to treatment you have encountered.

“In order to make real progress in improving pain care in the United States, we must all raise our voices at every opportunity and this is an important opportunity that should not be missed!” said Steinberg. The docket is open until September 10. You can write in by clicking here.