When Jodi Barber found her son Jarrod on the couch barely breathing, she rushed to call 911 while her husband administered CPR. The ambulance whisked Jarrod to the hospital where he was born, but it was too late. Nineteen years after they welcomed him into the world, Barber and her husband said goodbye to him in the same building.
The same year, three of Jarrod's friends also died from using Opana, a prescription opiate. In the six years since his death, Barber has watched many more young lives ended too soon by opiate addiction, and in her mind it is clear who is to blame.
"Big Pharma continues to not care about people, only about profit," she told The Fix.
What Barber knew from personal experience was confirmed earlier this month, when the Associated Press and the Center for Public Integrity released an investigation into the role that pharmaceutical companies play in politics in order to sway legislation regulating the prescription drug industry.
The damning report, entitled The Politics of Pain, found that between 2006 and 2015 prescription drug makers spent more than $880 million nationwide on lobbying and campaign contributions. That is eight times the amount of money the powerful gun lobby spent during the same time period, and more than 200 times what groups advocating for stricter controls on opiates spent.
Many of the grassroots organizations fighting for tighter prescription drug regulations were founded by parents whose children have been touched by addiction. While they bring an amazing passion to the table, fueled by heartbreak and loss, they have neither the funding nor the political experience to sway lawmakers the way that pharmaceutical companies can.
"We're not a lobbying organization, we're an advocacy organization," said Judy Rummler, chair of the FED Up Coalition to End the Opioid Epidemic. "We don't have professional assistance, PR, marketing, other things that might enable us to have a stronger voice."
Rummler and other advocates for prescription drug reform told The Fix that they were frustrated but not surprised by the Politics of Pain investigation.
"It's a flaw in our system that we allow these special interest groups to have so much power that we can't address a crisis in our country," Rummler said. "We need reform, but it's not likely to happen anytime soon."
Catherine Fennelly, a Massachusetts mother whose son Paul died last year of a heroin overdose, was furious at the report, but not shocked.
"It doesn't surprise me at all. Everything is about money. Everything," she said. "People would rather make money than save lives, and that is how we got where we are. And at what cost? My son's life."
A Well-Organized Effort
The Politics of Pain Report showed that in addition to deep pockets, prescription drug makers have a well-organized and widespread effort to block tighter prescription legislation, particularly at the state level. Drug makers and associated groups employed an average of 1,350 lobbyists across the country during the 10-year period that was examined in the report. In 19 states, including New York, California, Texas and Ohio, there was a pro-opioid lobbyist for at least every five state legislators.
Campaign contributions, which totaled $80 million, were split fairly evenly between the parties, with 45% going to Democratic candidates and 54% going to Republicans.
Often, prescription drug makers did their lobbying under the guise of pain relief advocacy. The Pain Care Forum is a network of opioid-friendly nonprofits that formed more than a decade ago and has blocked legislation at the state level. The forum contributed more than $24 million to 7,100 candidates for state-level office, specifically targeting candidates with the most power, including house speakers, senate and health committee members.
Supporting the pain care narrative, prescription drug lobbyists operated through trusted non-profits, including the American Cancer Society's Cancer Action Network. The Cancer Action Network led the fight against Tennessee legislation aimed at reducing the number of babies born addicted to opiates, using funding from prescription drug company grants.
"A lot of times those legislators, they don't have the ability to really thoroughly look into who these organizations are and who's funding them," Edward Walker of the University of California Los Angeles said in the report.
However, pain care advocates distanced themselves from addiction in the report.
"There's such a hysteria going on" about those who have died from overdoses, said Barby Ingle, president of the International Pain Foundation, which the Associated Press found receives pharmaceutical company funding. "There are millions who are living a better life who are on the medications long term."
Advocates for prescription drug control point to the fact that a 2015 study found that up to 40% of non-cancer chronic pain patients showed signs of addiction.
"We know that's at the root of the problem, the money that Big Pharma puts into lobbying and also supporting pain organizations that work to advocate for pain patients, many of whom are already addicted to opioids," Rummler said.
Barber, the mother whose son died of an opiate overdose, understands the need for strong pain relief. However, she believes that pain relief can be provided when it is truly needed while also keeping opiates from flowing into the hands of people who will misuse them.
"Jarrod's friends were overprescribed pills. They were prescribed 90 in a bottle," she said. "I would like to see opiates prescribed to those who truly need them. I would like to see Opana prescribed only for terminal cancer, not 30, 60, 90, 120 or more in a bottle which can be shared and sold."
Not Willing To Give Up The Fight
At times the fight between addiction advocates and prescription drug companies seems like David versus Goliath. However, the advocates that The Fix spoke to are not deterred in their push for sensible regulations of prescription opiates.
"Most of us at FED Up have lost children and know the pain associated with that," said Rummler. "We feel very strongly that we don't want other families to experience that. We aren't planning to give up."
Rummler said that tighter regulations of opiates is the only solution that she can see to the heroin crisis gripping our country.
"Obviously we have compassion for people who suffer with chronic pain, people who [may] be hurt by the change, but in the long run it's the only solution," she said.
The Politics of Pain report reached the floor of the senate last week when Massachusetts Senator Ed Markey called for action.
"The Money Mile and its army of Big Pharma lobbyists are the reason mandatory prescriber education is not the law. It is the reason the Food and Drug Administration has been complicit in many instances in the worsening of this epidemic," he said while standing next to a poster-sized chart touting the fact that only 11% of people needing addiction treatment receive it. "Our cities are fighting a war, and we need to help them."
Politicians like Markey give Catherine Fennelly hope, even in the face of pharmaceutical companies willing to spend millions of dollars fighting regulation.
"I have hope knowing that there's such an epidemic going on that it's in everyone's faces," she said. "The numbers keep on going up and state reps and mayors are all pulling together. I've seen change, which is really good. I think [pharmaceutical companies] will be held accountable, and that will be on the political level."
No matter what the odds, heartbroken mothers like Rummler, Barber and Fennelly will continue to fight for opiate reforms, alongside people who have survived addiction.
"No matter how big the demons are who we're up against, we can't allow Big Pharma to win the battle," Barber said.