by Rekha Basu
Ajit “Ayaan” Sharma, a skinny 11-year-old with dark eyes that gleam like headlights, bounces around a New Delhi home on the balls of his feet. He exudes an energetic spunk for a kid living with only one working lung — and that functioning at only 40% — because of cystic fibrosis.
His father, Shiv Shankar Sharma, has worked in our New Delhi family home as an accountant for nearly three decades, but only on my trip back to India in March, after Ayaan’s condition had deteriorated so he could no longer go to school, did I learn of his illness.
Within a month of his birth, Ayaan was hospitalized for four months with pneumonia, 21 of those days on a ventilator. Now he spends six or more hours a day on a nebulizer and takes pancreatic enzymes before each meal, just to digest 30% to 40% of it.
Ayaan knows his coughing spells, chronic lung infections, breathing and digestive-tract ailments are all connected. Even his teeth don’t work properly. What hasn’t been fully explained to him is that despite his parents’ absolute dedication to making him better and excellent care by his doctor, a system of international patent agreements has stood in the way of potentially saving his life.
A 2019 Washington Post report on the U.S. release of a cystic fibrosis drug 30 years in the making called Trikafta so promising that “Patients who were unsure about whether they should bother attending college because they had always known they would die young are now being told they should think about planning for retirement.”
Sharma found hope reading it. But the realities of U.S. pharmaceutical pricing and patenting collided with disparities in income and access in the Global South.
Trikafta, a set of modulators of the defective protein, costs $250,000 a year in India. That’s more than 69 times the average Indian middle-class salary. Most Indian jobs except for government ones don’t come with health insurance, according to S.K. Kabra, Ayaan’s doctor. So only government employees or the “very, very rich,” could afford it. And it is patented by Vertex Pharmaceuticals, so no other company can produce it.
Trikafta’s three main components combined cost only $5,700, says Kabra, who teaches at the All India Institute of Medical Sciences. Yet “Companies are charging more than 100 times the cost involved in preparation.” Vertex says it has agreements in more than 40 foreign countries to reimburse some of Trikafta’s costs. But the Journal of Cystic Fibrosis reported last year that because of the price, only 12% of the estimated 162,000 people with cystic fibrosis worldwide are getting it. It costs even more in the United States, but at least it’s covered by health insurance.
But Americans also suffer under the sky-high costs of brand name prescriptions. In his February State of the Union speech, President Joe Biden decried Big Pharma for the $400 to $500 retail cost of insulin for diabetes, which he said costs about $10 a vial to make. However, under his Inflation Reduction Act, the U.S. government will from 2026 be able to negotiate some drug prices under Medicare, he promised. Such negotiation has been barred since 2003, when Medicare Part D was created.
The U.S. argument for granting drug companies monopolies through patents has been to encourage their spending on research and development of new cures. Yet more research and development by pharma companies has not improved the lot of terminally ill people at home, according to several studies. In America, one in four uninsured or underinsured people are unable to fill their prescriptions because of patents.
India has also had to allow them under the World Trade Organization’s 1994 Trade-Related Intellectual Property Rights (TRIPS) agreement. Subsequent revisions, and other U.S. trade agreements, have further eroded public health safeguards there.
But cystic fibrosis patient advocates abroad are seeing some wiggle room. In February, some petitioned governments in India, South Africa, Brazil and Ukraine to revoke or suspend Vertex’s patents for Trikafta or CFTR modulator drugs, focusing on a TRIPS provision that allows a government to permit another party to produce a patented product without the patent owner’s agreement.
With retail drug prices so out of whack with corporate profits, new life-saving drugs do little for dying patient who can’t afford them. In countries with single-payer health systems, governments can and do negotiate lower drug prices. But since U.S. political forces have blocked such a system here, the federal government should at least stop granting patents for medicines that could save people’s lives. As for drug research, that role could be taken over by the government and/or public universities.
For those who might read this and ask, “Why should India get special consideration?” it shouldn’t. The question is why a corporate sector should get to dictate who lives and dies. We as Americans should use our voices and our votes to demand our government ensure life-saving medicines are accessible to all who need them, including the Ayaans of the world. It’s time to treat health care as the human right that it is.
