Why Patient Advocacy Movement is Muted for Addiction

Whether looking for a powerful lobby or a local support
group, patients with substance use disorders
(SUDs) who are seeking or participating in treatment
have a woeful lack of places to turn. There are organizations
for people in recovery (like Faces and Voices of
Recovery), harm-reduction groups for active drug users
(like the Drug Policy Alliance), groups representing
people on methadone maintenance (NAMA) or Suboxone
(NAABT), and of course treatment providers and
their organizations, all of whom have some advocacy
indirectly for people who are seeking treatment.

But unlike patients with diabetes, depression, and other
medical conditions, who have prominent celebrity
spokespeople and can talk to their employers about
their medical conditions, people with active SUDs are
as unseen as ever.

Faces and Voices of Recovery, which was founded
10 years ago, does represent people with active addiction,
as well as people who are in recovery, and
probably comes closest to representing the needs of
people with addiction when it comes to government
advocacy.

“Before Faces and Voices of Recovery, the providers
basically filled the void because there wasn’t anybody
else,” said Becky Vaughn, chief executive officer of
the State Associations of Addiction Services (SAAS).
The problem with this is that funders look askance at
treatment providers asking for money for treatment.
Patients would have more credibility, said Vaughn.
However, stigma gets in the way. “People get into
recovery and go back into the community, and they
blend right in,” said Vaughn. “They go back to work,
and they’re not in a situation to tell their boss they
want to go advocate for treatment, because in most
cases their boss doesn’t even know they’re in recovery.”
There is no SUD parallel to the National Alliance of
Mental Illness (NAMI) because of stigma, said Vaughn.
“NAMI is basically made up of parents and family
members,” she said. “Parents of children with SUDs
don’t want to say anything about it.” For mental illness,
the assumption is that the parents didn’t do anything
to cause the problem. For SUDs, parents feel at fault,
she said. Even when their children have had successful
treatment and are doing well, they don’t want to talk
about it. “There’s this perception on the part of many
people that it must have been bad parenting,” said
Vaughn.

Another issue is anonymity, which has been a tenet
of belonging to Alcoholics Anonymous or Narcotics
Anonymous. However, there is a growing understanding
that “standing up for what we need is not the same
as breaking anonymity,” said Vaughn.

Public service announcements (PSAs) help encourage
advocacy for other chronic diseases. “I wish we had
money for more PSAs,” said Vaughn.

Money is a key issue, in fact. Most of the mental health
advocacy groups get funding from pharmaceutical
organizations, noted Vaughn.

Criminalization

Imani Walker, co-founder and executive director of the
Rebecca Project for Human Rights, which promotes
family treatment for women and children, said that
criminalization of a public health issue is one of the
reasons addicts stay in the shadows. “Addiction is the
one disease you are criminalized for having,” Walker
told ADAW. “If you are not in recovery you can be prosecuted,
you can lose your job, and you can lose your
children,” she said.

Walker, who is in recovery, learned when she was an
active addict that asking other women whether they
had children was taboo. “I was fortunate enough to
still have my children,” she said. “But I learned you do
not ask other women if they have children. So many
lost their parental rights. The phrase I hear over and
over again is, ‘I lost my children to my addiction.’”
The Rebecca Project works with substance abuse
treatment providers to train mothers specifically to do
policy advocacy work. “We have a network across the
country, called the mother’s sacred authority, to train
clients while they’re still in treatment,” said Walker. She
urges treatment providers to train women who are in
recovery “to speak for themselves,” she said.
“Until addiction is elevated from the misconceptions
and the mental images of the person who is an alcoholic
and dying in the gutter, or dying in the crack
house or heroin shooting gallery, there will always be
shame,” said Walker. “No one wants to be associated
with that image.”

Pat Taylor, executive director of Faces and Voices of
Recovery, pointed out that one of the differences between
patients in the addiction treatment system and
patients with other medical conditions is the lack of an
ongoing relationship with health care. “Many people
with addiction are not interacting on regular basis
with a service system,” she told ADAW. As more people
get enrolled as a result of health care reform, this will
change, she hopes. “We are making progress.”
The National Alliance for Medication Assisted Recovery
(NAMA) started at the same time as NAMI. Walter
Ginter, director of training and recovery services with
NAMA, thinks funding from the federal government
helped boost mental illness advocacy. “The federal
government made a big push 25 years ago to make
treatment for mental illness more accessible,” Ginter
told ADAW. “The stigma around mental illness in those
days was worse than it was around drug addiction.”
Part of the mandate of the Substance Abuse and
Mental Health Services Administration (SAMHSA) was
to destigmatize mental illness, he said. “There was one
person in each state as an advocate, getting about
$75,000. We never had anything like that in substance
abuse.”

Melissa Preshaw, community relations director of CRC
Health Group, the largest substance abuse treatment
chain in the United States, said one of CRC’s strongest
contributions to its patients is insurance. “We work really
hard to maximize clients’ insurance benefits,” said
Preshaw. “We have trained at the corporate and the
facility level on maximizing benefits once someone
has come in for treatment.”

CRC is also opening “assessment centers” where people
with SUDs can get more information and be made
aware of treatment options, said Preshaw. These first
opened in Pennsylvania, linked to CRC’s White Deer
Run programs there, and are next slated to open in
California, she said.

Rob Morrison, executive director of the National Association
of State Alcohol and Drug Abuse Directors
(NASADAD), pointed out that one of the reasons the
advocacy movement of people with SUDs isn’t bigger
is that of the 23 million Americans with a problem,
only 3 million think they need help. “More is being
done to promote people’s voice in recovery,” said Morrison.
“But in this era of patient choice, how does this
get applied to addiction, and how should it be applied?”

Resources:
To reach Imani Walker at The Rebecca Project, call 202-265-3908.

For the mission statement of Faces and Voices of Recovery, go to
http://bit.ly/wide6H. To read Walter Ginter on advocacy for patients
in medication-assisted treatment, go to http://bit.ly/KpruB.

Why patient advocacy movement is muted for addiction
was first published in Alcoholism & Drug Abuse
Weekly Volume 24, No. 6, February 3, 2012.