When the elevator at the Atlanta Westin Hotel stopped at the floor where the government representatives were meeting, Zahara Heckscher stepped out. She was wearing a headset microphone and a white t-shirt that was several sizes too large for her. She pulled along a metal IV pole on wheels, with a bag attached. The front of her t-shirt read, “I have cancer. I can’t wait 8 years.” A sign on the bag read, “TPP: Don’t Cut My IV.”
Followed by several people filming her with their cell phone cameras, Heckscher walked toward the hotel conference rooms where representatives from a dozen Pacific Rim countries were conducting closed-door negotiations over the terms of the Trans-Pacific Partnership, known as the TPP. It was late September of 2015, and the TPP, which had the enthusiastic support of U.S. President Barack Obama and his trade representative Michael Froman, appeared on track to becoming the largest regional trade agreement in history.
When she arrived at a foyer outside the conference rooms, Heckscher switched on her microphone and began to speak loudly. “Don’t trade away access to our medicines,” she said, glancing at a typed statement. “I’m not going to leave until the U.S. Trade Representative shows me the secret death sentence clause, so I can verify that the TPP is not going to prevent women like me from accessing the medicines we need to stay strong and alive.” Hotel security and Atlanta Police Department officers appeared in front of her, asking her to leave. Heckscher refused and began reading off the names of cancer patients who had signed an anti-TPP petition.
The police pulled her hands behind her back and placed her in handcuffs. She was arrested on a charge of criminal trespassing and held in the Fulton County Jail. At 2AM the next day, she was released on a $1,000 bond.
The TPP attracted a wide range of dissenters concerned with the trade deal’s possible effects on jobs, the environment, and national sovereignty, among other issues. When he was a Presidential candidate, Donald Trump called the TPP “a rape of our country.” Heckscher and other health advocates focused on the agreement’s plan to extend pharmaceutical company monopolies on biologics medicines, which are derived from living organisms and include many of the most promising drugs for cancer. Shortly before Heckscher’s protest, a leaked draft of the proposed TPP had revealed a planned guarantee to drug companies of 8 years of market exclusivity for biologics. That exclusivity would have created a block on generic competition in addition to the baseline 20-plus-year patent protections the companies already held.
Drug prices drop as much as 90% when generics hit the market, so extended monopolies mean extended periods of high prices. For biologic cancer medicines with no competitors, those prices are often in excess of $10,000 per month. “Try telling a woman in Vietnam (a party to the TPP) where per capita income is $2,000, that she has to pay $100,000 for the medicine that could save her life,” Heckscher said after her arrest. “When you have breast cancer, you can’t wait eight years for a treatment to become available.”
Heckscher had been diagnosed with breast cancer seven years to the week before her Atlanta protest. Her mother had died from the disease when Heckscher was 11, so she was very aware of the risk that she would not see her son, then three years old, grow up. Heckscher’s cancer has continued to advance, but she has had better-than-average health insurance, first through her employer and then her husband’s. So she has been able to take advantage of many recent treatment developments: in addition to multiple rounds of chemotherapy, along with radiation and surgery, she has been treated with several kinds of biologics.
Long before she was a cancer patient, Heckscher had been a committed activist for social justice, and had even published articles about the history and development of social movements. So when she learned that the TPP seemed destined to block other women from receiving the treatment that was extending her life, she felt the need to merge her personal struggle with the cause. “I know the pain of losing a mother to cancer,” she says. “I had to do something.”
Heckscher bristled at any suggestion that her position on drug pricing is anti-research. She had a biology degree, and worked in a professional lab for a time, and she benefitted from being enrolled in clinical trials. “Medical research is keeping me alive,” she said after her protest. But, like other advocates, she pointed to the significant government funding that undergirds that research, and how the pharmaceutical industry’s profits and marketing costs exceed its investments in developing new medicines. “I support research; I just think the results of that research should be available to those who need it, especially the taxpayers who paid for it,” she said. “You know, they (the companies) deserve profits. But this is price-gouging at the cost of lives.”
With the TPP at least temporarily defeated after Trump’s 2016 election, Heckscher turned her attention to similar monopoly-extending terms that appear likely to be proposed in a renegotiated North American Free Trade Agreement. She co-founded an organization, Cancer Families for Affordable Medicines. On World Cancer Day in February, 2016, Heckscher was arrested again. This time, she and another cancer patient conducted a sit-in at the Washington, D.C. headquarters of PhRMA, the pharmaceutical industry’s lobbying arm.
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On that same World Cancer Day in 2016, Tobeka Daki protested, too. She joined a large demonstration in Johannesburg, South Africa that launched the Campaign for Access to Trastuzumab. If the name trastuzumab is unfamiliar to most, it is well-known to patients like Heckscher and Daki who have been diagnosed with the HER-2 positive strain of breast cancer. HER-2 is a frightening diagnosis, but trastuzumab can be remarkably effective at treating it. The National Cancer Institute-funded development of the drug was so impactful that the story was turned into a Lifetime TV movie, “Living Proof,” starring Harry Connick, Jr. as the UCLA physician whose research helped show how the medicine would benefit cancer patients. Later patented by the drug company Roche and marketed under the name Herceptin, trastuzumab has become one of the best-selling prescription drugs in the world.
The cost to manufacture a year’s worth of trastuzumab, the recommended length of treatment for a patient like Tobeka Daki, is about $176. But Roche holds multiple patents on the medicine in South Africa, which means it will have no competitors selling trastuzumab until 2033. Buttressed by that monopoly, the same amount of medicine that is manufactured for less than $200 is sold by Roche in South Africa for $34,000.
That price is approximately 5 times the per capita income in South Africa, and many times more than the salary Daki earned as a receptionist. It is also a far higher cost than the South African public health system, where 80% of the country’s population receive their care, can afford. Many physicians in the system don’t even tell their HER-2 positive patients that the drug exists. Zahara Heckscher was treated with trastuzumab; Tobeka Daki wasn’t.
The World Cancer Day 2016 demonstration in South Africa was held in front of Roche’s national headquarters. The speakers pointed out that the company’s net profit for the preceding year had been $8.9 billion (it would rise to almost $10 billion in 2016), and that CEO Severin Schwan’s salary was $12 million for the year.
Daki was among the speakers that day, and afterwards exchanged laughs and hugs with fellow cancer patients. The mother of two sons, the smiling, extroverted Daki was a star of a grassroots advocacy program developed by the Cancer Alliance of South Africa and other groups. A video produced by the campaign featured Daki making the case for access to trastuzumab, her voice playing over images of her walking hand-in-hand with her 12-year-old son Khanya.
But when I spoke with Daki a month after the World Cancer Day event, she was more somber. Her cancer had recently spread to her spine, and a fellow patient and close friend had died five days earlier. Her sons were frightened that they would soon lose her, she said. She was frightened, too. “Thousands of people in South Africa die because they cannot access this medicine,” she said.
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Tobeka Daki’s grim observation about South Africa applies to cancer treatment in much of the rest of the world as well. Only about one of every 20 cancer patients in Africa receive chemotherapy. For childhood cancers, many of which have high cure rates if treated, 80% of African children die without adequate care.
For most of the world’s population, access to the newer monopoly-protected medicines is out of the question. In all but the wealthiest handful of nations, less than half the oncology drugs introduced in recent years are routinely available. In candid moments, pharmaceutical company leaders will acknowledge that this fatal disparity is simply part of the industry’s prevailing business model. At a 2013 conference, Bayer CEO Marijn Dekkers was asked about the availability of one of his company’s cancer medicines in India. “We did not develop this product for the Indian market, let’s be honest,” Dekker replied. “We developed this product for Western patients who can afford this product, quite honestly.”
Yet even Western patients are not immune from the struggle to afford skyrocketing cancer medicine prices. In inflation-adjusted terms, cancer treatment costs have increased nearly 100-fold since 1965. The median price of patent-protected cancer drugs in the U.S. is now over $10,000 per month. Like trastuzumab, those medicines are priced at dozens or even hundreds of times higher than their manufacturing costs. Inside accounts of the corporate pricing process reveal a system designed to yield the highest possible price that the market will bear. And it turns out that the market accommodates sky-high prices for a life-or-death product.
Yet, even for cancer patients who have health insurance, those price tags sometimes put treatment out of reach. Deductibles and copayments leave typical out-of-pocket costs for U.S. cancer patients at nearly $30,000, over half of the average household income. As many as one in four U.S. cancer patients skip prescribed medicine doses because they cannot afford them.
That includes cancer patients covered by the U.S. Medicare program, which requires a 20% copayment for many cancer medicines. “That’s 20% of infinite,” said breast cancer patient Heather Block, who paid as much as $3,000 per month in Medicare copayments. “Patients like me shouldn’t have to choose between getting access to lifesaving drugs and paying our mortgage,” she said. When I spoke to her last year, Blocks’s cancer had metastasized to her liver and lungs, but confessed to having mixed feelings when a new, expensive treatment appeared to be extending her life. “My biggest fear is that I’m going to run out of money before I run out of time.”
Even the healthcare systems of high-income countries are straining under the cost of cancer medicines. “Governments in places like France and Spain and the U.S. are simply not going to be able to sustain full treatment at the current level of pricing,” says Gaëlle Krikorian, a longtime HIV/AIDS treatment advocate who is now an access to medicines researcher. In fact, rationing of cancer treatment is already occurring. Like Tobeka Daki, Melanie Kennedy of Northern Ireland faced a HER-2 Positive breast cancer diagnosis and a government health program that said it could not afford trastuzumab. “For me, it’s like a carrot dangled far away,” Kennedy says. “Before I had cancer, I would have imagined that if there is a drug that can help you, it would be available to you.”
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Until the late 20th century, most nations treated medicines as public goods and therefore off-limits to profit-seeking monopolies. When asked why he did not try to patent the polio vaccine, Jonas Salk famously replied, “Could you patent the sun?” That philosophy is still reflected in the significant protections against drug overpricing in the Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS) of the World Trade Organization. The TRIPS Agreement is known for its global protection of patent rights, but it also carefully preserves governments’ ability to allow manufacturing or importation of generic versions of patent-protected medicines that are priced out of reach. The U.S. and other nations make those rights to override drug patents even more explicit when the medicine in question was developed with government funding.
Further evidence of an enduring commitment to medicines as a public good is provided by the enormous government investment in drug research. The U.S. National Institutes of Health alone has a $37 billion annual budget. Every one of the 210 new drugs approved between 2010 and 2016 trace their provenance back to government funding. In fact, most proposals to reform the medicines pricing system look to those existing government research dollars at the front end of the process, as well as the billions paid by government healthcare systems when making bulk purchases of monopoly-priced medicines at the back end. If the monopoly windfall profits of the pharmaceutical corporations are removed from the middle of that equation, the argument goes, the existing government investment in medicines is already sufficient to replace all private research, and support sharply lower prices as well.
Instead, governments currently play a role in the medicines system that some have described as a “dumb venture capitalist.” For example, the cancer drug pacilataxel was developed by research funded by the National Cancer Institute, part of the National Institutes of Health, and the U.S. Department of Defense. Taking advantage of a 1980 U.S. law that allows private companies to be awarded patents on the products of government-funded research, the patent for pacilataxel is now held by the Japanese pharmaceutical company Astellas Pharma. Astellas sells the medicine, branded as Xtandi, back to the federal government at a cost that can exceed $100,000 per patient per year, a price that is more than 20 times the cost to manufacture it.
Building off the premise that the government should get a far better return on its medicines investments, researchers and advocates have put forth multiple proposals to avoid the burden of monopoly patents. Those ideas include international pooling of government research and development investments and expanded grants and prizes to incentivize innovative research for medicines that would be off-limits to patenting. Many of these alternative models are already being tried, albeit at a limited scale. To make more sweeping changes, all that is missing is the political will.
The pharmaceutical industry knows this, and as a result is one of the biggest spenders in the world on lobbying and campaign contributions, particularly in the U.S. In the Washington, D.C. area alone, pharma corporations employ twice as many lobbyists as there are members of Congress. U.S. Senator Richard Durbin has said that the industry “has a death grip” on the U.S. government. Under the Obama administration, pharmaceutical industry lawyers helped draft the terms of the TPP that Zahara Heckscher protested. Industry veterans are the architects of the proposed Trump executive order that would extend drug monopolies. Despite the broad rights in the TRIPS agreement that allow nations to override patents and allow access to generic drugs, only a handful of countries have exercised those rights on cancer medicines. And for their efforts, countries like India, Thailand, and Colombia that have dared to take such actions have been targeted by pharma industry campaigns that successfully persuade the U.S. government to threaten severe trade sanctions.
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Yet there is growing public frustration with the drug pricing status quo. The U.S. is the world’s foremost promoter of drug patent protection, but polls show large majorities of Americans are angry at drug companies and support aggressive government intervention on medicines pricing. Even Donald Trump has announced that the companies are “getting away with murder.”
In August of 2015, 118 leading U.S. cancer experts co-authored a commentary in the journal Mayo Clinic Proceedings that called out drug companies for recklessly hiking up the cost of cancer medicines they need to treat their patients. The lead author of the article, Ayalew Tefferi, a hematologist at Mayo Clinic, told the Wall Street Journal, “What we’re fighting is the greed.” Other cancer physicians have taken similar stands, and the World Health Organization and the United Nations Secretary-General’s High-Level Panel on Access to Medicines have called for either sharply lower prices or increased access to generic medicines.
This advocacy by health and political leaders is important. But there is a special role to be played by the cancer patients themselves, as Babalwa Malgas learned. Like Tobeka Daki, Malgas is a South African who joined the country’s Cancer Alliance after being diagnosed with breast cancer. Malgas was quickly and pleasantly surprised to discover the power of patients’ witness to public officials and fellow citizens. “Our stories cannot be denied,” she says. “It feels good to speak up, because even if I leave this work before it is done, maybe it will help the next person.” When Zahara Heckscher was released from her Atlanta jail cell, she was stunned to learn that her arrest had made international news. The video of her protest had already been viewed online thousands of times. “What I did not realize was that the fact that I’m a cancer patient would cause a lot of people to respond quite deeply,” Heckscher said.
Most cancer patient groups, particularly in the U.S., focus on fundraising for research and supporting individual patients. And most have extensive financial ties to pharmaceutical companies, ties that appear to have muted the groups from vigorously criticizing drug prices. But, in recent years, the patient voice on pricing has grown louder. In the U.S., activists like Heckscher and Heather Block are joined by David Mitchell, a multiple myeloma patient who has founded Patients for Affordable Drugs. Mitchell’s organization collects patient stories of drug price struggles, and its advocacy has earned it outside funding support and a lot of U.S. media attention. Mitchell is also the lead plaintiff in a class action lawsuit against Celgene Corporation for allegedly blocking the development of generic alternatives to their blood cancer drugs.
In India, the Cancer Patient Aid Association led a multi-year struggle that successfully fought off Novartis’ effort to extend its monopoly patent on the leukemia treatment imatinib mesylate. Thai activists helped convince their government to allow generic manufacturing of four patented cancer medicines. The Union for Affordable Cancer Treatment, led by breast cancer patient Manon Ress, is leading the fight for U.S. generic manufacturing of pacilataxel, has successfully proposed a cancer drug pricing study by the World Health Organization, and helped push down the price of a breast cancer drug in the U.K.
A few patients have embraced Zahara Heckscher’s preference for direct action. Chinese leukemia patient Lu Yong violated national law by purchasing generic medicines from India and distributing them to fellow patients. When Yong faced charges for his actions, hundreds of those Chinese leukemia patients petitioned a court on his behalf. Their advocacy seemed to have an impact: soon after the patients’ petition was filed, the Chinese patent office invalidated the national patent on the medicines Yong was importing. And the protests of Zahara Heckscher and other advocates have been credited with helping inspire resistance to the TPP among the grassroots in many party countries, resistance that helped delay the deal until the changing political winds of the U.S. finally swept it away.
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For cancer patients, the HIV/AIDS treatment campaign of the late 1990’s and early 2000’s provides the model to emulate. At the turn of the century, the patent-protected price of antiretroviral drugs was set at $1000 or more per month, dozens of times higher than the cost of manufacturing. Patients and health systems in the U.S. and western Europe managed to meet that price, but the cost condemned millions of HIV-positive people, particularly in sub-Saharan Africa, to an early death. As the body count multiplied, a patient-led international campaign began to force a recognition of the pricing crisis. HIV-positive patients and allies engaged in spirited mass demonstrations, civil disobedience, and litigation, much of it aimed toward publicly shaming the corporations and governments for prioritizing monopoly profits over people’s lives. The movement achieved remarkable success: By 2003, the price of antiretrovirals dropped over 90%. Now, 17 million HIV-positive people are on the medicine.
Can cancer patients follow in these footsteps? There are some promising parallels. Like antiretrovirals, most cancer medicines trace their roots back to government research funding, an origin story that provides a strong argument against private profiteering. The struggles share the same powerful-but-unattractive opponents, who seem determined to follow the same flawed playbook they used in the HIV/AIDS clash. The pharmaceutical industry that once insisted that antiretrovirals could not be safely administered in sub-Saharan Africa (“like pushing on a string,” said the CEO of Pfizer in 2001) now says the same about cancer treatment (“In some parts of Africa, we could give away our products and it would make no difference.” AstraZeneca’s CEO has said). And just as the U.S. government once retaliated against the South African and Brazilian governments for moving toward generic HIV/AIDS drugs, the U.S. is now exerting trade pressure against countries like Colombia and India to prevent encroachment on cancer medicines monopolies.
But there are significant differences between the two campaigns as well, and those differences pose a challenge for cancer medicines reform. First-line antiretrovirals are pills that are taken at home and are effective for most HIV-positive patients. Treatments for cancer vary along with the hundreds of types of the disease and the stages that each patient is enduring. Cancer care usually demands more than medicines, and access to surgery and radiation pose their own challenges.
And there is a difference in the patients themselves. At the time of their treatment campaign, HIV-positive patients were usually younger. If they had access to medicines, HIV treatment activists typically lived long, vigorous lives. In comparison, cancer patients are on average older and sicker. “Some of these patients do not have a lot of time left, and they need to deal with family and expenses and their own individual treatment issues,” says UK medicines activist McDonald. “It is a big ask to have them give some of their precious time to a campaign they are not likely to live long enough to benefit from.”
For many social movements, the concern is that key activists will burn out emotionally. For the cancer medicines campaign, the tenure of activists’ commitment is more often linked to their physical stamina, and even to their mortality. Heather Block’s cancer progressed to the point where she shifted her advocacy focus from drug pricing to death-with-dignity legislation. She passed away in March of this year. Since Heckscher’s 2015 arrest, her activism often had to be curtailed while she struggled with treatment challenges. She continued to speak out, though, even filming a January video from her hospital room warning against NAFTA’s potential harm to medicines access. She died in February, at age 53.
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Through the early months of 2016, Tobeka Daki’s cancer was progressing, too. She was no longer able to work, but she often summoned the energy to continue with her advocacy. She gave testimony to the U.N. High Level Panel on Access to Medicines when it visited Johannesburg, and agreed to several interviews with media and international activist groups. In September, she helped lead a march in Pretoria calling for a reform of South Africa’s patent laws that protect drug monopolies. As usual, she delivered a strong, confident speech. But, in a quieter moment a few minutes after leaving the stage, she embraced a fellow activist and broke down into tears.
Soon after, she lost the use of her legs and was confided to bed in her family home. “She cried and asked Jehova to care for her children,” says her mother Matilda Ytibi. Daki died on November 14th. She never received trastuzumab.
Three months later, on World Cancer Day 2017, activists once again gathered in front of Roche headquarters in Johannesburg. Daki’s oldest son, Tulani, was there, wearing a shirt with his mother’s picture on the front. Babalwa Malgas was there, too. She had known Daki since they were children, and the two had grown even closer as they shared their HER-2-positive diagnosis and the accompanying fears and frustration. Malgas has been denied trastuzumab, too. “My children ask if I am going to die like Aunt Tobeka, and I don’t have any answers,” she says.
At the 2017 event, the campaign was officially renamed the Tobeka Daki Campaign for Access to Trastuzumab, and it was recast as a global day of action. The South African demonstration was supported by activists in a dozen other countries, including India, Brazil, Thailand, and the U.S.
To Babalwa Malgas, the expanding coalition gives hope. “I have to believe that we will win,” she says. “At least now, people are aware, and we think they are understanding this is not about profits, it is about people’s lives.”
When Malgas hears people talking about Tobeka Daki, and sees her name and image on placards, she reflects back to an evening when the two of them stood talking in front of Daki’s home in Mdnisane Township. “She said to me, ‘Babalwa, I don’t want to die as a victim. I want my life to make a difference for women who follow me.’”
Malgas takes a moment to compose herself. “I just wish I could reach down, wake her up, and say, ‘Tobeka, it is happening.’”