By Emily Prechtl
“Between a rock and a hard place” is the best way to describe the 20 percent of prescription drug consumers in the U.S. who have trouble affording their medications, as they often resort to skipping doses or cutting pills in half. For the average American trying to stave off depression or provide just enough insulin to live with diabetes, the impossible choice between the rising cost of prescriptions and the cost of basic necessities is agony. According to a recent Kaiser poll, 80 percent of Americans believe that drug prices are unreasonably high. But they are not alone; countless grassroots organizations and independent activists across the nation are mobilizing to fight the greed of Big Pharma.
Hosted by Public Citizen and the O’Neill Institute at Georgetown Law, the Affordable Medicines Now Conference held from June 27 to 29 was an opportunity for more than 150 activists to gather at the Georgetown University Law Center. Participants discussed strategies to tackle a variety of issues, from the extent of corporate power to the role of intersectional activism, in which activism is examined through the lens of interlocking systems of power and marginalization, in the fight for more affordable medicines. Keynote speakers such as civil rights activist Heather Booth and U.S. Sen. Cory Booker (D-N.J.) complemented workshops and panels.
One panel, “Pharma in your Backyard,” dove deeper into the efforts of grassroots organizations to challenge the seemingly invulnerable corporations that determine drug pricing. Claire McAndrew, director of campaigns and partnerships for Families USA, moderated the hour-long panel, which included Illinois state Rep. Will Guzzardi (D-Chicago), UNITE HERE HEALTH Executive Director Bobbette Bond and Vinny DeMarco, president of the Maryland Citizen’s Health Initiative.
McAndrew opened the panel by highlighting the importance of fighting Big Pharma at the state level. While they may not be as wide-reaching, state victories set a positive example for federal lawmakers who want to lay the groundwork for the longer fight to obtain bipartisan support for federal changes to lower drug prices.
“The issues targeted by state activists include transparency, anti-price gouging, the pharmacy benefit manager – also known as the middleman – and rate setting,” McAndrew explained.
The fight is often slow and long, as attested by the panelists. Even when a small victory is attained in the legislature, it often is short-lived. Bond’s work in Nevada to classify diabetes-related drugs such as insulin as essential and require transparent reporting from manufacturers, meant she had to stare down three prescription drug corporations while she reached out to advocates and patients to get them to tell their stories to those in the legislature.
“The morning after the win, you need to be aware of three things,” said Bond of her victory, which resulted in a bill that requires drug companies to disclose pricing and research each year so that any unreasonable price changes can be investigated. “Pharma will sue, Pharma has unlimited resources and is better at organizing and lobbying with the courts, and activists must be able to leverage the abilities of their attorney general who might be willing to take this on.” Unfortunately, in her case, Nevada’s conservative attorney general was of little help once the Pharmaceutical Research and Manufacturers of America (PhRMA) and the Biotechnology Innovation Organization (BIO) filed a lawsuit to block the bill. The lawsuit was later retracted by the trade organizations after the state agreed to limit the scope of the legislation.
Bond credited most of the initial victory to the groundwork laid by other activists such as DeMarco. He played a crucial role in the fight to achieve a Maryland ban, the first of its kind, on generic drug price gouging. While the ban was quickly overturned by a court decision, DeMarco was able to persuade the state’s attorney general to join the cause and ask for a rehearing.
“Grassroots don’t need to reinvent the wheel, just take a format that works well and apply it to your particular position,” said DeMarco. His own six-step plan for effective advocacy asks activists and organizers to:
- Create an evidence-based policy plan;
- Test the plan with a high-quality poll;
- Build a coalition around a one-page resolution that both organizations and individuals can sign on to;
- Get media coverage for public support;
- Make the policy into an election issue;
- Vote and win the legislature.
DeMarco also made his outreach as accessible as possible, creating a website on which supporters could share their high prescription drug price stories in either English or Spanish. It’s clear that high-price medications are undesirable when it comes to individual health, but it’s important to factor in how public health is also at risk:
During lunch, I was approached by a data analyst who worked in the same building where the conference was held. By his request he will remain anonymous, but he divulged a troubling trend in emergency services. He’s been an EMT for three years, usually working on Sundays in Maryland, and was qualified to provide basic life support for those suffering symptoms of anaphylaxis. While most patients self-administer an Epi-Pen, the ambulance itself was not equipped with them. Instead, the EMT and his co-workers use vials of epinephrine and sterile syringes. It’s certainly cheaper than the Epi-Pen, which runs at $630 a pack, but the EMT has to measure out the right amount of epinephrine based on the patient’s height, weight and other health factors, whereas the Epi-Pen comes pre-measured. The EMT didn’t know if this was a decision made at the station, county or state level, but suspected it was made due to the cost of the Epi-Pen. He also noted how patients often refused Tylenol, Narcan or glucose because of the prohibitive cost.
Activists and organizers often ask lawmakers to participate in their initiatives by introducing legislation, supporting efforts or putting pressure on colleagues for change, but lawmakers can be activists in their own right. Illinois State Rep. Will Guzzardi sought to bring an end to price gouging with his “PHARMABRO” Act, which would have allowed the Illinois attorney general’s office to investigate generic and off-patent drug price increases past a certain threshold, with significant penalties for the manufacturer.
Guzzardi built his movement off what was accomplished in Maryland; after drafting the bill, he built a coalition around it, drawing in organizations for technical support as well as grassroots and faith groups to prepare moral and political arguments. It passed the state House but faced significant roadblocks in the Senate and was shelved until next year.
Despite the defeat, Guzzardi’s words of wisdom implored attendees to build, maintain and use strong networks, since “some things can be a multi-year fight.”
“Pharma in your Backyard” shared stories that make grassroots activism against big corporations seem feasible. Taking on Big Pharma is a battle that cannot be fought alone, and often will bring numerous defeats before even hinting at a sign of progress. As a movement, activists and organizers can learn from the wins and losses in other states as they continue to build their approaches and movements in their own backyards.