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From Cancer Patient to Medicines Activist

Lyon and Heckscher Arrest Word Cancer Day 2016

The arrest of Hannah Lyon and Zahara Heckscher.

 

It is Hannah Lyon’s first-ever experience with public speaking, but she clears her throat, clutches her notes, and plunges in. “Hello. My name is Hannah, and while I might not look like it, I am a cancer patient.”

Lyon’s audience was gathered in front of her on a Washington, DC sidewalk to commemorate World Cancer Day. She explains to them that she was just 26 years old when she was diagnosed with advanced cervical cancer. Her first set of doctors saw Lyon’s best-case scenario as chemotherapy and radiation that would only extend her life for 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, where her immune cells were genetically modified and reinserted into her bloodstream. Since the treatment, Lyon’s tumors have shrunk more than 80%.

But, Lyon points out to the crowd, most cancer patients are not this lucky. New cancer treatments average a whopping $10,000 per month. Many patients can’t afford that, even though it is likely their taxpayer dollars paid to develop the medicines. “In fact, much of cancer research happens in publicly funded research hospitals and universities,” Lyon explains. “But the publicly funded research often turns into privately held patents on these new therapies.”

Lyon’s speech is part of an event co-sponsored by the advocacy group Public Citizen calling for the rejection of national laws and international trade agreements that protect medicine monopolies that allow pharmaceutical corporations to charge these exorbitant costs. The primary target today is the Trans-Pacific Partnership Agreement (TPP), a sweeping trade deal that includes a dozen Pacific Rim countries that together encompass nearly 40% of the world’s gross domestic product. As Lyon says to the crowd, the TPP “benefits the rich and leaves the middle class and the poor in the dust.”

She finishes her speech to enthusiastic applause, and she smiles. Sharing her story in public was a big step for her. For most of us, that would be plenty of excitement for one day. But Hannah Lyon was just getting started.

As soon as she finishes her speech, Lyon finds in the crowd Zahara Heckscher, herself a breast cancer patient. Together, they walk across the street, find a quiet spot, and pull on suit jackets. Now, looking sufficiently business casual to not attract the notice of security guards, they re-cross the street and enter the building behind the demonstration. Turns out it houses the offices of the Pharmaceutical Research and Manufacturers Association, known as PhRMA, the powerful coalition of pharmaceutical corporations that hires more than 11,000 registered lobbyists and spends hundreds of millions of dollars a year protecting medicine monopolies. Lyon and Heckscher are about to make a scene.

Once inside the building lobby, they peel off their business jackets to reveal matching black t-shirts with white lettering that say, “I am a cancer patient. No TPP death sentence.” Lyon and Heckscher block the building entrance. “We will not leave until PhRMA stops pushing extreme monopolies through the Trans-Pacific Partnership,” they say.

Outside, the demonstrators can see Lyon and Heckscher lock arms, so the crowd ups the volume on its chants. “Shame on PhRMA!” “TPP no!” By now, someone is filming, so Lyon and Heckscher look to 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.” Soon, they are arrested and charged with unlawful entry.

When growing up in Galesburg, Illinois, and even as a healthy bike-riding, organic food-eating woman in her mid-20’s in Oakland, California, Lyon never envisioned herself in a scene like this. But then cancer happened, and she saw fellow patients struggling to pay for the medicines that were their only hope for survival. Lyon learned that others had not been able to pay, and simply died from highly treatable cancers. Lyon heard the PhRMA argument that high monopoly prices are necessary to fund drug research.

But then, during her own treatment at the federally-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 read that one of the most controversial pieces of the TPP is a guarantee of extended monopolies on the very biologics drugs she benefitted from, and offer the most promising future in cancer treatments. She read how Medicaid, Medicare, and VA programs were reeling from the cost of monopoly medicines, but that patient and taxpayer push-back was growing so strong that all the major presidential candidates oppose TPP and support Medicare regulation of drug prices.

Lyon also read about passionate push-back against TPP in low-income countries like Mexico, Vietnam, and Peru. There, monopoly mark-ups do not just mean strained budgets. “In those countries, extended monopolies on cancer drugs means people are just not going to be able to access them,” Lyon says. “So many people are doing to die.” Médecins Sans Frontières/Doctors Without Borders says the TPP promises to be the worst trade agreement in history.

Then Lyon happened to see a television interview with Heckscher, who had been arrested protesting at the TPP negotiations in Atlanta in October of 2015. Heckscher was using 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.”

Now, Lyon is hopeful about her health, and also hopeful about rising awareness of the dangers of protecting medicine monopolies. She thinks the climate change movement, along with progressive efforts like the Fight for 15 and the Bernie Sanders presidential campaign, suggest that her generation is not accepting corporate control over the government and the economy. And she thinks her fellow cancer patients can help stop the commodification of medicines and turn them back into a public good.

Fourteen million new cancer cases are diagnosed each year, Lyon points out. “And that means cancer affects nearly every one of us, either directly or through a loved one,” she says. Those patients and families now pay for medicines with prices that include as much as a 90% profit margin. Or they don’t pay for them: one of every five U.S. cancer patients go without medicines due to cost.

So Lyon and Heckscher have formed a new organization, Cancer Families for Affordable Medicine,. 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. And she thinks others can follow the same path.

At the World Cancer Day demonstration, Lyon had closed up her speech with a plea to lawmakers, a pleas that echoes the mission of her new organization. “My wish is that all affected by cancer can have access to treatments like mine, and move beyond cancer to healthy and fulfilling lives,” she said.

“For this, I ask Congress to save lives and vote down the TPP.”

CancerFAM can be found at http://cancerfam.org . Fran Quigley is a clinical professor at Indiana University McKinney School of Law, where he directs the Health and Human Rights Clinic. His writing about access to medicines can be found at www.prescriptionforthepeople.org and @rx4thepeople

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Fran Quigley is a professor at Indiana University McKinney School of Law, where he directs the Health and Human Rights Clinic. He is the author of How Human Rights Can Build Haiti (Vanderbilt University Press).

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