Safe & Affordable Drugs & Devices

Compulsory Licensing for Hepatitis C Medication in Malaysia

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By Lekhya Kintada

In August of 2017, the Malaysian Cabinet decided to make available affordable generic versions of the hepatitis C cure sofosbuvir (Sovaldi). The U.S. government and the patent-based pharmaceutical industry are placing some pressure on Malaysia for this decision, but it is an important one to protect public health.

Approximately 500,000 people in Malaysia are living with hepatitis C (HCV). Sofosbuvir, as a direct-acting antiviral medicine, has cure rates of over 90% and far fewer side effects than previous treatments, representing a breakthrough for people with chronic HCV. However, the cost of treatment is exorbitantly expensive, making the treatment less accessible to patients. The list price of Sovaldi in the U.S. is $84,000 and RM 300,000 ($71,300 USD) in Malaysia. The Malaysian household income per capita is a small fraction of this price: $4,571.17. As of 2017, only 500-550 patients per year had received treatment.

Since sofosbuvir is patented, a government-use license is needed to waive the monopoly right and enable the sale of generic drugs at affordable prices. In other words, the Malaysian government granted the U.S.-based corporation Gilead Sciences a patent covering sofosbuvir. In exchange, Malaysia retains the right to make use of the patented invention to serve the public interest. This government use is a core feature of patent systems everywhere.

The Health Ministry of Malaysia, in cooperation with Geneva-based Drugs for Neglected Diseases initiative (DNDi), is hoping to procure a generic sofosbuvir, priced at RM 1,000, for use in public hospitals throughout the country.

Gilead had announced earlier in 2017 that Malaysia would be included in the company’s own licensing plan – allowing some generic versions to be sold locally. Gilead Sciences signed non-exclusive licensing agreements with seven India-based generic pharmaceutical manufacturers to produce and sell sofosbuvir in 91 least developed countries. Most of the middle-income countries where the vast majority of hepatitis C patients live were excluded from the licenses. Malaysia was one of those 41 middle-income countries.

Gilead also failed to register the drug in many of the 105 countries within the licenses territory. This obstructed access to hepatitis C treatment.

The Malaysian government engaged in negotiations with Gilead to be included in the licenses and reduce the price. Negotiations failed in 2016.

Malaysia’s decision to license government-use is believed to be the pivotal reason Gilead is now including Malaysia in its licensing plans. Gilead may have hoped that the Malaysian government would reverse its government use decision, or at least that Gilead would be able to control the terms of licensing and generic competition. However, relinquishing the government use license would limit what Malaysia can import or produce. Gilead’s licenses are dependent on conditions set by the company, and Gilead could also alter or terminate them.

Currently, the Malaysian government continues to face pressure from the U.S. pharmaceutical industry and potentially the U.S. government to undo an action taken to make a key hepatitis C medicine more affordable in Malaysia. However, according to TRIPS Article 31, usage of patented drugs in a non-commercial sector does not require prior negotiation with the patent holder. A government agency or a third party (e.g. a generics company) can be authorized to import or manufacture a generic version of a patented drug limited to use in public programs and hospitals. Government use does not override a patent. Rather, the government has the right to make use of an invention which is embedded in this initial grant of every patent.

In the 2018 Special 301 Report, the USTR announced that it will conduct an Out-of-Cycle Review of Malaysia to “consider the extent to which Malaysia is providing adequate and effective IP protection and enforcement, including with respect to patents.” The WTO Ministerial Declaration on TRIPS and Public Health not only recognized the legality but also the desirability of countries taking pro-public health measures and not letting patents come in the way of people’s health interests. The U.S. government should not criticize Malaysia for making use of an invention to protect public health. It is consistent with Malaysia’s international obligations and long-established U.S. policy.

In this way, Malaysia is making strides in the public health sector. For example, Malaysia became the first country to issue a compulsory license on a medicine to treat HIV, following the adoption of the Doha Declaration on TRIPS and Public Health in 2003. In 2017, it was again the first country to issue a government-use license for HCV treatment. These decisions showcase the Malaysian government’s commitment to provide lifesaving medicines to its people. Thus, the decision to issue a government-use license for sofosbuvir is an admirable example of a country exercising its right to make medicines available to save thousands of people from serious ailment and potentially death.

pharmastory

Caught in the Crosshairs of Corporate Power. Part 4: Prescription Drug Price Spikes

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This is part four of a five part series.

When political candidates spend their time begging for cash from wealthy interests and legislating to prioritize private profits over the public good, regular people lose out. The corporations and superrich donors that dominate our elections have an outsized influence over who wins, what gets discussed in campaigns and what legislative ideas receive serious consideration.

The sweeping legislative package known as the For the People Act (H.R. 1) contains ethics, campaign finance and voting rights reforms that are essential to make our government work effectively and fairly.

To illustrate the need for reforms that reduce corporate influence and redistribute power to the people, Public Citizen compiled stories of five regular Americans whose lives have been impacted by corporate political power.

Corporate Power Spotlight: Prescription Drug Prices

“I have all these intentions of fighting pharma and getting these laws changed. But I’m up against billionaires.”

Nicole Smith-Holt, 48, Richfield, Minnesota

Nicole Smith-Holt’s son Alec was about to turn 24 when he was first diagnosed with Type 1 diabetes. At the time, Alec was covered by his mother’s insurance plan.

“Even with insurance, he was spending upwards of $200-$300 a month to cover his insulin and diabetic supplies,” Smith-Holt said. “At times, that was even a struggle.”

In 2016, Alec was promoted to be manager at the small, family-owned restaurant where he worked. He was eager for experience that could lead to a better job. But because the restaurant did not offer insurance coverage to employee, he and his mother were anxious.

Nevertheless, he took the job. The 2010 Affordable Care Act meant Alec could stay on his mother’s insurance for the first six months of his job, until he turned 26.

When time came for Alec to leave his mother’s plan for a plan offered through the state insurance exchange created by the Affordable Care Act, Smith-Holt and her son experienced intense sticker shock. “The premiums were so high and the deductibles were crazy ridiculous,” she said.

Despite Alec’s managerial salary, the cost of insurance and insulin plus expenses like rent and utilities proved to be too much. Even with insurance, he would have needed to pay thousands of dollars toward his deductible before coverage began. Instead, he opted to not buy insurance and pay for his medicine out of pocket.

One month after his 26th birthday, Alec went to the pharmacy to refill his prescriptions. The bill: $1,300. “By what I could later see from his bank account, he had only about $1,000 in the bank,” said Smith-Holt. “So he left the pharmacy. He did not call and ask for any help.”

“He didn’t ask anyone for a loan,” Smith-Holt continued. “He didn’t ask anybody for anything. Alec was the type of person who was fiercely independent. He didn’t want to rely upon anybody for anything. I think he felt like it wasn’t his place to reach out and ask for help.”

One Sunday, Alec and his girlfriend went out to eat but wasn’t able to eat his food. “He started complaining about abdominal pains.” Smith-Holt said. “He had ordered a beer and he wasn’t able to drink it. He just wasn’t feeling right. He wanted to sleep. That’s all he wanted to do. So they went back to his place. She left, and he was left there alone.”

The next day was Monday. He called in to his job and said he didn’t feel well enough to come in ..

“That phone call to his job on Monday was the last phone call he made,” said Smith-Holt.

On Tuesday his girlfriend visited his apartment to check on him. His car was in the parking lot, but he wasn’t answering his phone or his door. She climbed in a window and found him unresponsive on the floor. According to a medical examiner, he’d actually passed away on Monday. He had no insulin in his apartment.

“I feel like Alec slipped through the cracks of our health care system. The Affordable Care Act, the health care plans that are offered on there, it’s a joke,” said Smith-Holt. “Not only are the premiums high, but those deductibles are crazy. People are wiping out their savings to get through the first few months of insurance, paying out those high deductibles. People are maxing out their credit cards. They’re cashing out college savings accounts. They’re mortgaging their homes. They’re filing for bankruptcy. They’re setting up all these GoFundMe accounts. It’s crazy. GoFundMe shouldn’t be our healthcare system.”

Today Smith-Holt advocates for reducing drug prices and supports a Medicare-for-All healthcare system that provides universal coverage. But fighting for this cause, Smith-Holt knows, is a struggle.

“I have all these intentions of fighting pharma and getting these laws changed,” she said. “But I’m up against billionaires, people who have just millions to throw around. I don’t have that money.”

CORPORATE INFLUENCE AT WORK

The pharmaceutical industry uses its political influence to block even the most modest reforms to rein in prescription drug prices and to undermine regulations that protect the public from unsafe medicines.

In 2003, President George W. Bush signed the Medicare Modernization Act, which expanded Medicare to cover prescription drugs but prohibited the government from using its bulk purchasing power to negotiate prices.

Legislation to end the prohibition has been introduced, but has not advanced. Other major drug price reforms, such as bipartisan legislation barring the industry from blocking the introduction of price-lowering generic medicines, have faced fierce industry opposition. Similarly, anti-price-gouging legislation introduced in response to the industry’s price-hike scandals, has stalled despite overwhelming public support.

Meanwhile, the for-profit health insurance industry – a dominant force in the U.S. health care system – has used its political power to entrench itself. Top Democrats in 2009 refused to consider creating a single-payer, Medicare-for-All healthcare system, eliminating the need for a private, for-profit health insurance industry. The industry mobilized to blunt the policies that would become the Affordable Care Act, ultimately defeating a public insurance option and ensuring that reforms prioritized protecting private profits. Nevertheless, the insurance industry, with other health sector interests, fought the reforms to the bitter end, spending upwards of $380 million on lobbying – paying for six lobbyists for every member of Congress – in the months before the bill’s passage.

A Public Citizen analysis recently found that in 2017, there were 1,490 federal lobbyists just for the pharmaceutical industry alone. Taken together, the pharmaceutical, insurance and hospital industries, all likely foes of Medicare-for-All, spent $623 million on lobbying. In addition, a network of right-wing organizations backed by the billionaire industrialist brothers Charles and David Koch campaigned to repeal the Affordable Care Act, spending more than $120 million since 2008 to influence congressional elections, almost entirely to elect Republicans and defeat Democrats. Since the bill’s passage, congressional Republicans have voted more than 50 times to repeal or amend the law.

KEY FACTS:

The pharmaceutical industry has:

  • Spent more than $2.7 billion on lobbying in Washington since 2008.
  • Contributed more than $225 million in campaign money to Congress over the past 30 years.
  • Contributed 44 percent to Congressional Republicans and 56 percent to Congressional Democrats.

The health insurers and HMOs have:

  • Spent more than $758 million on lobbying in Washington since 2008.
  • Contributed $152 million in campaign money over the past 30 years.
  • Contributed 55 percent to Democrats and 45 percent to Republicans.

SOURCE: Center for Responsive Politics.

LOBBYING AND CAMPAIGN CONTRIBUTIONS:

Former Rep. Billy Tauzin (R-La.), then-chair of the House Energy and Commerce committee, is credited with authoring the prohibition against Medicare negotiating drug prices. At the time of his retirement in 2005, Tauzin had received nearly $1 million in contributions from the pharmaceutical industry – and he immediately took a job as PhRMA’s CEO and top lobbyist, for which he received a salary of $2 million.

Sen. Max Baucus (D-Mt.), then-chair of the Senate Committee on Finance, led the legislative effort to pass the 2009 Affordable Care Act. In the five years preceding the bill’s introduction, Baucus received more than $3.4 million – about a quarter of his total contributions – from pharmaceutical and health insurance companies and other health sector businesses. Sen. Joe Lieberman (I-Conn.), who opposed the public option and other reforms opposed by industry and whose vote was needed for Senate Democrats to achieve a filibuster-proof majority, received more than $2.1 million from the insurance industry and its allies in the health sector over his career.

A top recipient of pharmaceutical industry funding is the recently retired Sen. Orrin Hatch (R-Utah), who over the course of his career received more than $2.7 million from the industry. Noting Hatch’s record as an ally of the industry, a John Hopkins professor referred to Hatch as “PhRMA’s man on the Hill” (referring to Pharmaceutical Research and Manufacturers of America, the industry’s chief lobbying group). Rep. Anna Eshoo (D-Calif.), chairwoman of the House Energy and Commerce Subcommittee on Health, also is a top recipient of pharma funding, having received more than $1.6 million from the industry over the course of her career.

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Insulin4All

Insulin is a lifesaving medicine used predominantly by patients with Type 1 diabetes and a small subset of patients with Type 2 diabetes. The treatment has been around since 1921, yet it is still inaccessible to many due to its price. Although Type 2 diabetes can be prevented, Type 1 diabetes cannot. Type 1 diabetes generally takes root during childhood and is a result of the immune system destroying the body’s beta cells, which secrete the hormone insulin. Without insulin-producing beta cells, a person with Type 1 diabetes must inject insulin to live.

Type 1 diabetes cannot be controlled without insulin, leaving people with type 1 no choice but to take the medicine. The most common insulin drugs are Lantus, Humalog and Novolog, manufactured by Sanofi, Eli Lilly and Novo Nordisk, respectfully. To purchase insulin from one of these manufacturers the average monthly out of pocket cost is $360. The high price forces patients to ration their insulin on a day to day basis, which can be fatal, or make tradeoffs with other necessities such as food.  Meanwhile, executives at the insulin manufacturing corporations live life luxuriously. The CEOs of these big companies do not have to worry about having enough medicine to last the next week or even day. In 2015 the average compensation for a pharmaceutical CEO was $18 million USD.

If the market for insulin had biosimilar competition the cost of insulin could dramatically drop. The price of biosimilars for insulin could be less than $72 per vial. However, Eli Lilly, Novo Nordisk and Sanofi account for 96% of the insulin that is in the market globally, showcasing their dominance. These three corporations are alleged to have conspired to raise insulin prices across the market.

In Washington, big money can lead to big influence. In 2017 the pharmaceutical industry spent close to $171 million in lobbying. Nordisk spent approximately $3 million dollars to lobby Congress that year, and ran a political action committee (PAC) that distributed money to both Democrats and Republicans. Hundreds of patient advocacy groups take funding from pharmaceutical corporations as well, and often side with them on policy. According to Kaiser Health News, Eli Lilly allocated nearly $15 million dollars to 70 patient groups in 2015.[1] Through these lobbying efforts, PACs and political donations, pharma works to stop any legislation that could drive down its profits.

Pharmaceutical corporations attribute high drug prices to research and development costs. Yet insulin was developed nearly a century ago and has not undergone largely incremental changes since. The price of a vial, meanwhile, increased by more than 1200 percent from 1997 to 2016.

For Nicole Smith-Holt and her husband James Holt, Jr. whose son, Alec Rae Smith, died at 26 after rationing his insulin, the consequences of insulin prices are far too real. On September 30th, Nicole joined fellow activists in Indianapolis[2] to protest Eli Lilly’s continued price gouging. These activists advocated for better price transparency and voiced their concerns about high insulin prices. The Indiana protest showed that people are willing to speak out and come together to try to demand accountability from drug corporations for their actions.

Some lawmakers are taking on big pharma by introducing bills on price gouging, transparency and rate setting. In 2017 Nevada passed into law a bill that requires transparency for price hikes in insulin and other medicines necessary for people with diabetes. The bill was followed by a lawsuit challenging it on constitutional and intellectual property grounds. The lawsuit was dropped, but some speculation remains around how the law will be implemented.  At the federal level, the Stop Price Gouging Act, introduced by Sherrod Brown in Ohio, would put a tax on profits made on any pharmaceutical product that has a price increase beyond inflation.

These efforts face adversity. The Trump administration has voiced its concern over high drug prices, but the administration’s efforts to take on drug corporations remain small, or even counterproductive, in the grand scheme of things. Therefore grassroots mobilization and popular challenges to big pharma must be strong and resilient. Protests, like the demonstration at Eli Lily, are key ways we can build power. These should be coupled with legislative action and patient advocacy. Drug corporations will feign sympathy through letters, public statements, charity, publicity and even patient assistance programs – all while they continue to price gouge their consumers. For long term change, citizens, patients and elected officials must come together to hold drug corporations accountable.

[1] https://khn.org/patient-advocacy/#all-companies

[2] https://www.facebook.com/pg/t1international/photos/?tab=album&album_id=1837736979608352

A woman speaks at a podium while the image of a young girl is projected on the screen behind her

Government Funding and Responsibility in the Fight Against Big Pharma

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.

Two men sitting behind a table and in front of a projected screen are talking with one another. The younger one wears glasses, the older one has his hands on a piece of paper in front of him.

Big Pharma in Your Backyard

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.

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