Sarat Kumar Borah had been taking enzalutamide for six weeks when he told his son he wanted to give up. The medicine was helping a little with his prostate cancer symptoms—his headaches were milder, some days he had more energy—but he became livid whenever he thought about the price of the drug. “I’m drying up your funds,” he told his son. “I am old. What is the point of me living any longer if it’s going to finish everyone’s reserves.”
Without insurance to cover the cost of the medication, Borah had relied on his son, Rupam, to help pay for the drugs. Even with the leftover box of the medicine Sarat’s oncologist gave him, Rupam estimates he spent around 25 thousand rupees on treatments, nearly a fourth of the average annual salary in India.
Rupam insists his father is not the type to give up.
“I’m going to fight this damn thing out,” his father had joked just weeks earlier. “Who do you think you’re dealing with?”
But things had changed.
Although he owns a successful design business, Rupam stopped eating out, going on vacations, and dipped far into his youngest daughter’s college fund, leaving him up most nights trying to piece together a plan to send her to university.
“I’m just trying to tell her, ‘Finish your class 12 and hold on, let’s see how we do,’” he says. “I can’t break her heart.”
Even if the medicine was just a little less expensive it would help, he said. Instead, in the next couple months, the price of enzalutamide could dramatically increase.
In 2016, the patent for enzalutamide, a “wonder drug” for late-stage prostate cancer discovered by UCLA, was rejected by the Indian patent office, a decision many believed would make the drug less expensive.
Generic versions of the drug flooded the market, offering enzalutamide for a fraction of the cost of the name-brand drug, Xtandi. Although it still wasn’t as cheap as chemotherapy, Knowledge Ecology International, a consumer advocacy group, estimated that as more generic companies joined the market, the cost of a pill could be driven down to 50 cents.
Then, just a year later, UCLA appealed the decision to the Delhi High Court and, last May, won. The court sent the patent back to the Indian patent office to evaluate anew. If the office approves the patent, the decision would outlaw the generic brands of enzalutamide, leaving only Xtandi, a medication with a daily dose that is 70 percent more expensive, costing about 2 lakhs for 112 capsules, or about $223,576 in U.S. dollars.
In 2007, the UC system and 11 other universities signed on to a set of ethical licensing guidelines that emphasized the “consideration of the needs of people in developing countries,” according to the document. But to critics, the pledge was little more than a PR stunt. As it was signing its symbolic goodwill gesture, UCLA was also wrapping up the licensing agreement for Xtandi, with no provisions to ensure patients in developing countries would be able to afford the life-saving medication.
Phil Hampton, a UCLA spokesperson, says the university has since changed its licensing policies to include language that “encourages licensees to consider the interests of underserved populations.”
Still, Rupam Borah and countless others will not be able to afford the medication if the patent is approved. Spending a quarter of his salary on medicine is unaffordable— spending 40 times his salary is impossible.
“We will have to live by the reality that he will have to pass away sooner,” he says. “That’s it. What else can we do?”
In a small lab on the southern end of UCLA’s campus, Michael Jung spent most of his career as an organic chemist, developing new ways to synthesize chemicals. For 45 years he was content tinkering away at basic research questions and publishing results in journals like Tetrahedron Letters. Then on his 55th birthday, his wife pulled him aside.
“What do you want to do for the rest of your life,” she asked. “More of the same?”
Jung said he always dreamed of finding a cure for a human disease but never had the guts to try it. Some researchers worked years on developing a medication with nothing to show for it.
The day after his birthday, a colleague asked if he wanted to join a project dedicated to creating a prostate cancer drug. He took it as a sign, even though he knew almost nothing about prostate cancer. If nothing came of it, the worst people would think was that he’d decided to retire early, he thought.
A couple years later, in 2009, he published a paper in Science, introducing enzalutamide, a molecule that could drastically alter the way prostate cancer was treated. While chemotherapy moves through the body quickly and indiscriminately, wiping out cancer cells and any other cells that divide quickly (like bone marrow), enzalutamide elegantly clicks into receptors on the surface of prostate cancer cells, blocking the hormones that cause them to grow.
Stephen Freedland, an oncologist at Cedars-Sinai, remembers the excitement around enzalutamide and other similar drugs.
“There weren’t a lot of options for men. It was kind of like, ‘Sorry, life sucks,’” Freedland says. “Then all of a sudden we had a drug that could salvage a lot of these guys and just buy them time, a good quality of life.”
Chemotherapy often leaves patients bed ridden with nausea. In contrast, patients on enzalutamide can usually maintain their normal lifestyles, only complaining occasionally about feeling a bit foggy. One of Freedland’s patients said he couldn’t lift as much at the gym, which is to say he, a late-stage cancer patient, was still working out.
In early clinical trials, late-stage prostate cancer patients who had already exhausted hormone therapies and chemotherapy, enzalutamide extended their lives by five months. In oncologist circles, the result was promising—usually treatments that work in late-stage cancer patients work even better for early stage patients.
Two years later, scientists stopped a clinical trial short after enzalutamide significantly reduced the risk of death in patients before they started chemotherapy, and in August, the FDA approved enzalutamide for patients before they even started hormone therapy.
Freedland thinks eventually enzalutamide could turn prostate cancer into a chronic illness – something you can live with for years like diabetes or asthma.
“We are in a renaissance period in the medical therapy of prostate cancer,” an author of one of the clinical trials for enzalutamide said. “Even at this early stage, enzalutamide is a game changer.”
By weight, Xtandi is 65 times more expensive than gold. In the United States, that is 2.5 times the annual per capita income. In India, the name-brand drug costs more than 38 times the per capita income.
Rajeev Kumar, a urologist at a public hospital in Delhi, says if the patent were approved, almost none of his patients could afford the medication. Already, his patients struggle to afford the generic brands. Many of them run out of money a couple weeks into the treatment plan and stop taking the pills. Others, aware they’ll inevitably exhaust their resources, refuse the prescription from the beginning.
With the patent, even his wealthiest patients would be unable to afford the medicine.
In the United States, 80 percent of patients with insurance have a copay of less than $25 a month for Xtandi. In India, Kumar estimates less than 20 percent of his patients have insurance. If they do, their insurance policies usually cover a fixed amount of medical expenses for the entire family, which Xtandi would quickly deplete.
Rupam Borah has seen the worst of it in the hospital as he waits for his father’s appointments—children, mothers, and wives sobbing next to him, coming to terms with the fact that they can’t afford medication.
“I’m still pushing for medicines and going desperate and having sleepless nights sometimes and all that but still look at people who are below us who cannot even imagine— they will die,” he says, shaking his head. “I’ve seen those kinds of people in hospitals. I’ve seen them. I mean, they just cry. They are completely helpless.”
Most of the men he’s talked to in the hospital can scrape together enough for about a fourth of the cost of one box of enzalutamide. Sometimes he gives money to other patients at the hospital. Stretch it for as long as you can, he tells them.
If the pills became more expensive, Kumar isn’t sure he would even prescribe enzalutamide to his patients anymore. A couple of months of life is only worth so much financial stress.
“I know if I offered it to him he would take it and that’ll end up destroying his family,” he says. “The next generation (will be) in debt for the next 10 years.”
Even as an established doctor and professor at the most widely respected hospital in Delhi, one box of Xtandi would cost his entire monthly salary.
“Would I give it all up to extend a couple of months?” he says. “Probably not.”
Enzalutamide ultimately made the University of California more than a billion dollars. Even for the UC system, which owns the most patents of any American university, the drug generated more money than any other patent sale.
“We are strategically supporting one of our essential missions—funding and generating research with practical applications that serve the public good , ” Gene Block, the chancellor of UCLA, said in a university press release following the deal.
Except to many, it didn’t seem as if the university was trying to serve the public good.
First, there was the billion dollars.
To R. Joseph Trojan, a pharmaceutical patent lawyer based in Los Angeles, it was simple economics: the more the UC charged for the patent, the higher pharmaceutical companies would have to price the medicine to recover what they had spent.
“Where does it think the money was going to come from?” he asks. “It was coming out of the pockets of people who need the drug. Why are you driving up the cost of these drugs by demanding a billion dollar licensing fee upfront? That makes no sense at all.”
Furthermore, although researchers used public funding from the National Institutes of Health and the U.S. Army’s prostate cancer research program to discover Xtandi, UCLA was actively pursuing a patent that would make it inaccessible to the public. Meanwhile, money from the patent sale sits in a portfolio, generating $60 million dollars for UCLA every year.
Then there was the language in the licensing agreement. With no clause to protect developing countries, the agreement seemed to directly contradict the university’s own licensing guidelines, which say it “should consider such public benefit and broad societal needs when developing licensing strategies.”
John Mazziotta, the CEO of UCLA Health, says these ethical licensing guidelines are not always prescriptive, explaining there are a “variety of complex and potentially contradictory issues” that need to be taken into account when drafting such an agreement. Producing and testing medicine is expensive, Mazziotta argues. A pharmaceutical company might not agree to produce the medicine at all if there were a clause limiting the sales in developing countries.
Healthcare advocates have long been skeptical of that argument given that other companies, like the French NGO responsible for a successful gene therapy, included a reasonable pricing clause in their agreement and were still able to license the patent for millions.
Other institutions, like Harvard University, were able to include global access provisions in more than half of their pharmaceutical licensing agreements, clauses that allow generic companies in developing countries to produce their patented medications. They also allow Harvard to refuse to prosecute a patent in a developing country.
The UC created a committee in 2009 to oversee the inclusion of clauses that consider the needs of underserved people. These clauses have been included in 30 licensing agreements since 2018. Still, some argue this change was too little too late.
Without a global access provisions in the Xtandi agreement, if Medivation, a biopharmaceutical company that helped manufacture Xtandi, wanted UC to prosecute a patent that could take away medicine from thousands, the university has no legal avenue to refuse.
UC ultimately appealed the India patent decision on a technicality, claiming the patent office hadn’t taken into account a piece of evidence. To argue its case, they hired Palaniappan Chidambaram, the former Union Minister of Finance in India. In October, Chidambaram was charged with corruption, forgery, and cheating by India’s Central Bureau of Investigations in October, and was granted bail in December. Chidambaram has denied wrongdoing.
Neda Ashtari, a second-year medical student at UCLA, stood on the stairs of Powell Library in October, dressed in all black.
In front of her were tens of white paper bags, each with a small plastic candle inside and a name scribbled on the front in colored marker. Students sprinkled plastic rose petals in between the bags, a sort of vigil for the “lives lost as a result of UCLA’s inaction to drop the patent on Xtandi,” they wrote in a pamphlet.
Ashtari protested the patent appeal in India for years. In Regents’ meetings she stood in front of University of California leadership and demanded change.
“Can you imagine the guilt you would feel if all of your family’s income went to your [medical] bills? Would you even want to live at that point?” she asked. “ For one moment can you just step outside yourselves and imagine having to choose between the roof over your head and the (medicine) you needed to stay alive?”
But on that day in October, standing in front of the bags of names, she seemed quieter— more defeated than angry.
The pleading, public protests, and letters to the UC president’s office—one signed by 56 civil society organizations and doctors, then another with 3,500 signatures signed by students and advocacy groups— had been mostly ignored.
To her, UCLA’s choice to defend the Xtandi patent is personal. Her mother was diagnosed with breast cancer when she was four years old. For 12 years, as her mother’s primary caregiver, she fought with insurance companies to get medication. She lost her house, her father— left under the mounting stress over the cost of treatments—and eventually her mother.
She says the worst part wasn’t saying goodbye to her mom, it was knowing the same financial nightmare would happen over and over again.
“They say time heals all wounds but it hasn’t,” she says, her voice breaking up. “I still live with the consequences of these policies every day.”
In a small coffee shop on the outskirts of New Delhi, Rupam Borah flips through pictures of his dogs on his phone.
There’s Bella, who he found badly beaten on the side of the road; Phi Phi, who he rescued on the way back from his vacation on Phi Phi Island, and Coco, whose paw was run over by a car.
He has a soft spot for stray dogs. He fosters stray puppies, pays to neuter dogs, and even puts out bowls of Purina dog food on the street in front of his house.
Feeding the dogs is getting harder. Paying for everything is getting harder.
Rupam’s business has been slowly declining for months. When the economy is bad, the last thing people want to do is redecorate their houses, he says. Worried about the future of his company, he started teaching his employees the skills they would need to start their own businesses.
Regardless, he tries to stay positive, especially around his father—he’s seen too many children turn cold and resentful towards their parents under the financial strain of treatment.
He coos and zooms in on the well-groomed hounds as he goes through photos, occasionally stopping to take a sip from a clay cup of chai. In one, a dog with short white fur and pink ears is flashing a soft, squinty smile at the camera. In another, Rupam nuzzles into the dog’s fur as the brown-and-white mutt playfully nibbles at the hand wrapped around him.
When he tells his story, he speaks calmly and matter-of-factly. If his mother were at the table, though, he wouldn’t be able to keep it together, he said.
He’s wracked with guilt over the whole situation—that his oldest daughter walks dogs to help pay for her sister’s tuition, that he had to take back money from his mother to cover the cost of medication.
Rupam doesn’t blame his father for wanting the medicine, but he wouldn’t choose enzalutamide for himself: “I would opt for euthanasia any day.”
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