Prescription for the People

An Activist’s Guide to Making Medicine Affordable for All

Fran Quigley

• Publisher: ILR Press
• Year: 2017
• Print ISBN: 9781501713750
• eBook ISBN: 9781501713927
• Topic: Social Sciences
• Subtopic: Health Policy
• Index: Social Sciences

In Prescription for the People, Fran Quigley diagnoses our inability to get medicines to the people who need them and then prescribes the cure. He delivers a clear and convincing argument for a complete shift in the global and U.S. approach to developing and providing essential medicines—and a primer on how to make that change happen.

Globally, 10 million people die each year because they are unable to pay for medicines that would save them. The cost of prescription drugs is bankrupting families and putting a strain on state and federal budgets. Patients' desperate need for affordable medicines clashes with the core business model of the powerful pharmaceutical industry, which maximizes profits whenever possible. It doesn't have to be this way. Patients and activists are aiming to make all essential medicines affordable by reclaiming medicines as a public good and a human right, instead of a profit-making commodity. In this book, Quigley demystifies statistics and terminology, offers solutions to the problems that block universal access to medicines, and provides a road map for activists wanting to make those solutions a reality.

Part I

TOXIC IMPACTS

1

PEOPLE EVERYWHERE ARE STRUGGLING TO GET THE MEDICINES THEY NEED

Hannah Lyon was just twenty-six years old when she was diagnosed with advanced cervical cancer.1 To her first set of doctors, Lyon’s best-case scenario was chemotherapy and radiation that would extend her life for only a few years. Desperate for a more promising approach, Lyon found a clinical trial at the National Institutes of Health (NIH). There she received cutting-edge immunotherapy, in which her immune cells were removed, genetically modified, and reinserted into her bloodstream. Since the treatment, Lyon’s tumors have shrunk more than 80 percent.

But Lyon soon realized that most cancer patients are not so fortunate. She saw fellow patients struggling to pay for the medicines that were their only hope for survival. Lyon learned that others had simply been unable to pay and therefore had died from highly treatable cancers.

Lyon had heard the pharmaceutical industry argument that the high medicine prices are necessary to fund drug research. But, then, during her own treatment at the government-funded NIH, Lyon noticed something. “When I had my cell infusion, there were pharmaceutical reps in the room, because they want to take that treatment and offer it commercially. So this whole argument that pharma corporations need long monopoly periods to pay for the research … well, they are not even the ones doing the research! They did not develop that drug. They are just going to take that drug and charge people tons of money.”

Lyon began reading about medicine patents and the international trade agreements that protect them. She learned how government-funded research, not corporate investment, is the most important driver in creating new medicines. She discovered that our profit-driven medicines system is neglecting development of lifesaving medicines in favor of lucrative drugs to address hair loss or sexual performance.

Then Lyon happened to see a television interview with Zahara Heckscher, a breast cancer patient who had been arrested while protesting at the Trans-Pacific Partnership Agreement (TPP) negotiations in Atlanta in October 2015. The TPP was the latest in a series of trade deals that proposed to lock in corporate medicine monopolies and lock out suffering patients from the treatment they need. As we learn in chapter 18, the TPP promised to be particularly damaging to patients who need the kind of cutting-edge treatment that both Hannah Lyon and Zahara Heckscher received. So Heckscher had decided to use her status as a cancer patient to raise awareness of the dysfunctional medicines system. “That is amazing,” Lyon thought. Then she thought some more. “I could do that.”

So, on World Cancer Day in 2016, Lyon joined Heckscher in a sit-in at the Washington, DC, headquarters of the Pharmaceutical Researchers and Manufacturers Association (PhRMA). The organization is a coalition of pharmaceutical corporations that spends billions of dollars in political lobbying and campaign contributions, all to protect medicine patent monopolies—and the record-setting profits those monopolies provide. Wearing matching black t-shirts with white lettering that read, “I am a cancer patient. No TPP death sentence,” Lyon and Heckscher blocked the building entrance. “We will not leave until PhRMA stops pushing extreme monopolies through the Trans-Pacific Partnership,” they said.

Outside, demonstrators from a World Cancer Day action coordinated by the advocacy group Public Citizen could see Lyon and Heckscher lock arms. The crowd got excited and increased the volume on its chants: “Shame on PhRMA!” “TPP no!” By now, someone was filming, so Lyon and Heckscher looked at the camera. “We have a message for Congress on World Cancer Day. Listen to the cancer patients who will suffer if the TPP is approved.”2 They were arrested and charged with unlawful entry.

Soon after, Lyon and Heckscher formed a new organization, Cancer Families for Affordable Medicine (CancerFAM).3 CancerFAM is devoted, first, to stopping the TPP and, then, to fixing the other pharma-pushed trade deals and laws that elevate profits over patients. Lyon says advocacy has empowered her and transformed her own cancer story from one of weakness to one of strength. She believes that others can follow the same path.

Sarah Jackson does not have cancer, but she faces the same challenge that many of Hannah Lyon’s fellow cancer patients do. The mother of six children, Sarah Jackson has hepatitis C (hep C), a blood-borne virus that can inflame and scar the liver, damaging its ability to filter toxins. Sometimes hep C causes cancer and liver failure. Sarah Jackson’s physician has prescribed her a medicine to treat her disease. The medicine is almost certain to cure her before the hepatitis virus can cause irreparable liver damage or trigger liver cancer. The medicine would also prevent her from spreading the virus to others, including any future children she may give birth to.4

Sarah Jackson does not live in an impoverished country. She lives in Fort Wayne, Indiana, in the United States, one of the wealthiest countries in the world and the country that spends far and away the most on health care.5 Nevertheless, Sarah Jackson cannot get access to the medicine she needs.

The medicine that Sarah Jackson’s physician has prescribed her is sofosbuvir, a new hepatitis C drug that is controlled under patent by the U.S.-based pharmaceutical company Gilead. Gilead markets sofosbuvir under the names Sovaldi and Harvoni. The company has taken advantage of its monopoly patent power to price Sovaldi and Harvoni at costs that approach $1,000 per pill. The recommended twelve-week regimen cost as much as $100,000.6

That price is so forbidding that U.S. private insurance companies and the U.S. Veterans Administration have refused to approve the use of the drug for some patients, even when clinical treatment guidelines called for it.7 A 2015 study published in the journal Annals of Internal Medicine showed that three-quarters of state Medicaid programs block many patients from receiving sofosbuvir despite their doctor’s insisting they need it.8 A U.S. Senate investigation concluded that only about 2 percent of Medicaid patients with hepatitis C were being treated with sofosbuvir.9 And the problem is not limited to the United States. A World Health Organization study showed the price of the drug exceeded annual per capita income levels in many countries with high hepatitis C infection rates. For example, in Poland, Portugal, Slovakia, and Turkey, a course of sofosbuvir costs at least two years of average annual wages.10

One of the U.S. state programs that rations the use of sofosbuvir is in Indiana, where Sarah Jackson is enrolled in Medicaid. Indiana officials refuse to pay for the medicine for hepatitis C patients until the patients’ disease has progressed to the point of causing advanced liver damage. Sarah Jackson has not endured that much damage yet, so her doctor’s application to have the medicine provided was denied. The doctor appealed to higher-ups in the program, but to no avail.

Then the doctor put Jackson in touch with public interest lawyers. With the lawyers’ help, she has filed suit on behalf of thousands of others in Indiana who were in the same situation, asking for Medicaid to provide the medicine when their physicians say they need it. Sarah Jackson had never intended to become an activist. But, like Hannah Lyon, her illness pushed her in that direction. “There’s nowhere else to go,” she says. “The doctor tried and now I have no other place to turn.”11

Rationing plans such as the one in Indiana have angered patient advocacy groups and veterans’ organizations, and they have caused a passionate but less public backlash from treating physicians.12 On the other side, the administrators of the government health care systems are in a tight spot. The state of Kentucky spent 7 percent of its total 2014 Medicaid budget, over $50 million, solely on Gilead drugs to treat just 861 hepatitis C patients.13 The Veterans Administration was reported to have spent $1 billion on the drugs in the 2016 fiscal year.14 When a reporter asked him to comment on Sarah Jackson’s situation, Matt Salo, director of the National Association of Medicaid Directors said, “With the price of hepatitis C drugs, it is just not feasible to provide it to everyone.”15

As that comment suggests, Sarah Jackson is far from alone. An estimated 2.7 million people in the United States are infected with hepatitis C, and its complications cause 15,000 U.S. deaths each year.16 Globally, 150 million are infected and a half-million die from hepatitis C–related causes annually.17 The World Health Organization calls the disease a “viral time bomb.”18 In the United States, a recent spike in intravenous drug use, chiefly among young people, has triggered a corresponding burst of new hepatitis C infections.19 The rate of infection among U.S. military veterans is significantly higher than in the general population, partly due to exposure to blood in combat and training and to transfusions conducted before routine blood screenings began in 1992. According to the Veterans Administration, more than 200,000 U.S. military veterans are likely to have hepatitis C.20

The good news for those diagnosed with hepatitis C is that sofosbuvir is a remarkably effective treatment, combining with other drugs to cure the infection in more than 90 percent of patients.21 The bad news is that Gilead has responded to the high demand for this wonder drug by setting a take-it-or-leave-it price that is 1,000 times greater than the company’s manufacturing costs.22 Advocates and even some government agencies have leveled accusations of price gouging, pointing out that the cost of a full regimen of sofosbuvir in Egypt and India is just $900, a 99 percent reduction from the U.S. price.23 The Nobel Peace Prize–winning health care and advocacy organization Médecins Sans Frontières/Doctors Without Borders (MSF), estimates that the probable generic cost of the drug regimen would be under $200, or about 1/500 of the price currently charged to U.S. patie...

Table of contents

• Acknowledgments
• Introduction
• Part I. Toxic Impacts
• Part II. Profits over Patients
• Part III. Patently Poisonous
• Part IV. Trading Away Our Health
• Part V. A Better Remedy
• Conclusion
• Notes
• Index