By Madison Gable

When asked who owned the polio vaccine patent on Edward R. Murrow’s show See it Now, inventor Jonas Salk responded, “Could you patent the sun?” Salk’s polio vaccine was developed by the National Foundation for Infantile Paralysis, and the formula was not patented, allowing for barrier-free production of the vaccine. That was 1955. Today, Jonas Salk’s comment and the foundation’s decision not to patent the vaccine are far from the standard course. The pharmaceutical companies that develop drugs value profit over human lives. If they could, pharmaceutical companies would patent the sun, moon and stars.

During Public Citizen’s Affordable Medicines Now conference, held in late June, a panel titled “Government Funding and Responsibility for Access” tackled the issue of government funding and responsibility in pharmaceutical drug development. Experts Afton Cissell, counsel for U.S. Rep. Lloyd Doggett (D-Texas); Merith Basey, the North American executive director of Universities Allied for Essential Medicines; Stan Dorn, senior fellow with Families USA; and Jamie Love, the executive director of Knowledge Ecology International, spoke on the panel, which was moderated by Steve Knievel, advocate for Public Citizen’s Access to Medicines Program.

The activists, experts and lawmakers in attendance could all agree (along with 80 percent of Americans) that prescriptions drug costs are too high. Americans pay more for their prescription drugs than citizens of any other country in the world because pharmaceutical corporations have been given the legal ability to hold monopolies on lifesaving medications, and the U.S. government has done little to intercede on the behalf of the American people.

With President Ronald Reagan’s first election and subsequent deregulatory push in the 1980s, there was a paradigm shift in the American approach toward big business. Dorn described the phenomenon as “a broad shift in ethos; it became your moral duty to maximize shareholder value.” Combine an industry-friendly administration throughout the rest of the decade with the University and Small Business Patent Procedures Act of 1980, better known as Bayh-Dole, and the recipe leads to high prices on taxpayer funded medical discoveries.

Intended to commercialize federally funded research and give drug corporations incentives to develop new medications, Bayh-Dole allowed for universities, small business and nonprofits to patent inventions produced through government-funded research. Those patents can then be sold to private corporations to finish bringing the product to market. This opened a clear pathway for pharmaceutical corporations to reap the awards of taxpayer investment for their profit.

“The Bayh-Dole Act was the grant of a monopoly [to the pharmaceutical companies], and you can’t regulate monopolies. Monopolies regulate the government after a while,” Love said. “The lack of transparency increases their power and decreases the people’s power.”

Dorn argued that we need an alternative model for innovation. “Eight out of every 10 patents granted in the last 10 years are not for new drugs but for minor changes to preexisting ones.”

These “me-too” drugs are structurally similar to preexisting therapies and are different only just enough to be granted a new patent. Meanwhile, preventive drugs or drugs for diseases that primarily affect low-income patients don’t get developed at all. While “me-too” drugs can create competition and drive down prices, they divert money that could be used to develop new medications. The result is a system that doesn’t serve the public interest.

The rigged system we have today not only presents a false narrative of “innovation,” but also destroys the health and finances of the American people. Basey explained that Americans pay multiple times for their drugs: through their taxes, which support government-funded research through universities, through insurance costs and finally in what they pay out of pocket for their medications.

According to Basey, 15 of the 21 drugs with the greatest therapeutic impact were developed with public funding, including more than half the HIV/AIDS drugs, almost all tuberculosis drugs and all vaccines.

So how do we make therapies more accessible to the people these drugs are supposed to be developed for? Dorn believes we need to remind people what innovation actually looks like (not the development of more me-too drugs), and who innovation is meant to serve.

“If a drug is developed but the people who need it don’t have access, are we curing anything?” Basey asked. “Is the public getting a return on their investment?”

The way forward is to bring the rewards of research and development back to the people. Companies should conduct research and development that seeks to solve health issues regardless of market size, pursues new answers and saves lives without discriminating based on people’s incomes. And because the companies won’t do this on their own volition, the government should intervene and enforce regulations to break pharma’s death grip on the lives of American people.

In early July, U.S. Rep. Lloyd Doggett (D-Texas) introduced legislation that will tackle the pharmaceutical industry’s abuse of patent law, compelling the government to step in and allow for generics of lifesaving medicines to be made. In the interest of public health, the government can legally override patents, but as is all too obvious, under industry influence the government has let pharma companies keep their monopolies. Cissell said that the lawmaker’s strategy in developing the legislation was to take advantage of the same loopholes used by the pharmaceutical companies.

The bill could be a step forward in the fight to lower drug prices and save lives. Breaking the pharmaceutical companies’ control of prices is no simple challenge, but reconsidering the government’s role in this effort can help change the dialogue about innovation and affordability in the pharmaceutical industry.

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:

1. Create an evidence-based policy plan;
2. Test the plan with a high-quality poll;
3. Build a coalition around a one-page resolution that both organizations and individuals can sign on to;
4. Get media coverage for public support;
5. Make the policy into an election issue;
6. 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.

By Ellida Parker

When Maryland resident Elena Hung heard in June 2017 that the Trump administration was again attempting to dismantle health care programs that her four-year-old daughter with chronic lung disease relies on, she and a group of parents of children with special needs decided to turn their concern and frustration into action.

“We gathered up our children, their wheelchairs, their strollers, their ventilators, their medical bags, everything, and just showed up at the Capitol,” said Hung. Nearly every day in the months that followed, they continued to show up, meeting with lawmakers and giving them an up-close reminder of the importance of programs like the Affordable Care Act and Medicaid for American children with disabilities and medical needs. The group turned into the Little Lobbyists, an advocacy organization that seeks to protect and expand health care access.

Hung is one of three activists who spoke at the panel, “From Patients and Caregivers to Activists: An Inside Look at the Health Care Fight,” on Thursday, June 29, at the Affordable Medicines Now conference. Organized by Public Citizen and the O’Neill Institute at the Georgetown Law center, the conference aimed to connect health care activists and facilitate the development of a movement for affordable medicines.

Each of the three panelists knows firsthand the importance of quality, accessible health care. Writer and activist Ola Ojewumi underwent a kidney transplant, a heart transplant and cancer treatment within her first three decades of life. Were it not for the Affordable Care Act provision that allowed her to remain on her parents’ health insurance until the age of 26, she would have been unable to receive the cancer treatment that was vital for her survival. Ojewumi is the founder of Project ASCEND, a nonprofit that provides college scholarships to low-income and disabled youth, and she advocates for disabled people through public speaking and social media.

Matt Cortland became publicly involved with health care activism when he posted a video of himself criticizing Vice President Mike Pence’s promise to “repeal/replace Obamacare with a system based on personal responsibility” in June 2017. The video went viral, and Cortland has continued to share his story via social media since then. Cortland has Crohn’s disease, which renders him unable to digest food for months at a time. His treatment has generated medical expenses exceeding $700,000. Without Medicaid, he would not have been able to pay for the treatments that have kept him alive.

Hung’s daughter Xiomara was born with significant health issues that left her unable to breathe without a ventilator or to eat without a feeding tube. She spent the first five months of her life in intensive care and continues to rely on specialized medical care every day for survival. But because of Medicaid, her family can afford care that allows Xiomara to have some semblance of a normal childhood.

A recent survey by the Commonwealth Fund found that nearly 4 million people have lost health insurance over the past two years, likely due to actions by the Trump administration. Specifically, the group attributed the decline in coverage to the administration’s repeal of the individual mandate, which required every individual without employer-funded health insurance to buy insurance or else pay a monetary penalty, as well as the administration’s move to decrease funding for enrollment advertising and for groups that help people sign up for coverage. As the Trump administration and Congress continue to threaten and weaken access to health insurance, activists like those speaking at the panel become all the more important. Their stories add a human dimension to the otherwise abstract, politicized and statistics-filled health care debate, and serve as reminders of the indispensable, lifesaving benefits of Medicaid and the Affordable Care Act.

It is vital that lawmakers heed this and ensure that Ola, Matt, Xiomara and thousands of Americans with complex medical needs can continue to have access to the care that keeps them alive.