For years, Mary Rauwolf’s son struggled with mental illness and opioid addiction. Mary and her husband worked to find a treatment program for their son that was effective, available and affordable.
They were both fighting losing battles.
“You’re so desperate and nobody helps,” Rauwolf said.
Her son, Conrad, had battled mental illness from a young age. During his freshman year of high school, he began using alcohol and drugs, eventually including opioids.
For years, his parents tried various inpatient and outpatient facilities, none of which worked for Conrad and few of which were covered by insurance. One inpatient treatment facility cost them over $68,000, forcing them to mortgage their home and take money from their retirement savings.
Every failed treatment meant another frustrating journey through a sea of confusing insurance and treatment options, often with long waiting lists. After an overdose, he again agreed to treatment, and they tried to enroll him in a new program.
“He died while we were waiting for treatment. He had agreed to go but we couldn’t get him in anywhere,” Rauwolf said.
Rauwolf is saddened by the idea that the systems set up to help her son let him down.
“He knew we loved him,” Rauwolf said. “But he died having been told on a million different levels that he wasn’t worth saving.”
Within a year, a hospital in Dane County will pilot a new program that aims to improve this system by offering more immediate support to individuals struggling with opiate addiction. Safe Communities of Madison-Dane County is initiating a program that will connect individuals brought to the emergency room for opioid overdose with a personal recovery coach.
Dane County has followed the nationwide trend of increased opioid overdoses and deaths in recent years. In 2014, there were over 29,000 opioid overdose deaths in the US, up from 5,990 in 1999, according to the Centers for Disease Control and Prevention. In Dane County, there were 11 opiate-related deaths in 2001. Ten years later, that number rose to 61.
When individuals come into an emergency department for an opioid overdose, they often leave without a plan for treatment or a prescription, said Dr. Brian Lochen, medical director of Tellurian, an agency that provides services to those struggling with addiction and mental illness.
When Conrad was 22, he overdosed on heroin. His brother rushed him to the hospital. Conrad was discharged six hours later.
“I don’t know any other disease where you come into the hospital after almost having died, where you are streeted that quickly,” Rauwolf said.
An emergency room visit is an ideal time to start treatment, Lochen said. “The stumbling blocks to that are money, insurance and availability of treatment spots.”
Treatment centers often have waiting lists, Lochen said. Physicians like Lochen are allowed only 100 patients and once they reach their maximum, have to turn people away.
Dr. Joseph Blustein, an addiction medicine physician in Madison, thinks the insurance system is particularly overwhelming for young adults, who are then less likely to set up appointments for treatment following discharge. Rauwolf was frustrated by not being allowed to schedule appointments for her son, since he was over 18.
This means there is often a gap between when someone is discharged from the hospital and when they can receive treatment, Lochen said.
“When someone says ‘I need help now’ it would be great if we didn’t say ‘Well, it’s Sunday, come back during business hours,’ but ‘Come in and we’ll do something,’” Lochen said.
To help fill this gap, Safe Communities of Madison-Dane County plans to offer overdose patients a recovery coach to help them find treatment. Safe Communities received a grant of $7500 from the Wisconsin Medical Society for their project, “Opioid Addiction Recovery Interventions in the Emergency Room.”
Recovery coaches are peers who have previously struggled with addiction themselves, and as such provide a unique type of support, said Skye Tikkanen a clinical substance abuse counselor at Connections Counseling. Tikkanen is also the drug poisoning prevention program manager at Safe Communities.
Coaches in the program will undergo training in order to be licensed. Training will cover topics including paperwork, de-escalation skills, neuropharmacology and cultural competence.
The coaches will have a conversation with each patient about treatment resources. If the patient decides they want treatment, the recovery coach will help them navigate provider options and insurance to select the best choice. If treatment cannot begin immediately, the recovery coach will follow-up with the patient daily, either over the phone or preferably in person, until the patient is admitted.
It’s unclear when the program will be implemented, as Dane County health services are currently undergoing a lot of change, Tikkanen said. The project has not yet chosen which hospital will pilot the program.
A similar program known as AnchorED was implemented in Rhode Island with extremely successful results, Tikkanen said. The program made certified peer recovery specialists constantly available for patients brought in for opioid overdose. Over 80 percent of patients utilized recovery supports after being discharged.
Rauwolf believes a recovery coach may have been helpful for her son.
“I think the only person who could really tell him there’s something better on the other side was someone who had gone through it,” Rauwolf said.
Blustein thinks the program will be helpful, but wishes it could go even farther.
“My feeling is that if someone overdoses, they should not be released until they’re integrated into a treatment program,” Blustein said.
Eventually, recovering coaching may go mobile. A new experimental program enables a recovery coach to check in with a participant through a video conference, and then allows the coach to remotely unlock the participant's daily dose of addiction medication. This would provide the structure and support of daily interaction without necessitating a trip to a clinic, designer Dr. Zev Schuman-Olivier said.
“It does sound like a really interesting program, and I’ll be interested to see if it shows up around here,” Tikkanen said.
Rauwolf firmly believes that the current system is not working, and that experimental programs are needed.
“How many would you save, how many could you help? And every one of those people have value. I think about my son, with science and math, brilliant. That’s gone,” she said. “We have to try something, don’t we?”