As nurses who worked in 5B, the first U.S. hospital ward dedicated HIV/AIDS, which opened in San Francisco General Hospital in 1983, we have been directly affected in profound ways by the disease and its opportunistic infections.
One of us is HIV-positive, infected from exposure to blood from a patient’s intravenous line. Two of us were infected with tuberculosis from breathing the air exhaled by our patients who were sick from both HIV and tuberculosis. Tuberculosis and HIV infection nearly killed one of our spouses. For years we watched as our patients succumbed to a host of rare diseases and opportunistic infections like toxoplasmosis, candidiasis, and the ancient plague of tuberculosis.
Back then, there were very few people who survived AIDS or its opportunistic infections because effective drugs had not yet been discovered. One difference now is that there is a cure for TB — but only for those who can afford it.
Johnson & Johnson — which recently featured our work in a documentary called “5B” — is justifiably proud of its philanthropic efforts to support the profession of nursing, and we are delighted that the company helped tell the story of the nurses of Ward 5B and document the dark chapter that was the early history of HIV/AIDS, including the fear and ignorance that delayed effective prevention and treatment.
As nurses, we know that pharmaceutical companies are our partners in providing health care. As patients, we are grateful for new drugs and know all too well that if it wasn’t for them we would have gone on to become sick, infect our loved ones, and possibly die.
We also know that companies’ imperative to maximize profit can delay the scale-up of important innovations in treatment.
Johnson & Johnson owns bedaquiline (Sirturo), one of the first new drugs to have been approved for treating of TB in decades. That was an important advance because TB causes 1 in 3 deaths linked to AIDS, and around the world about half a million people develop drug-resistant TB every year.
Rates of drug-resistant TB are extremely high in many countries — oftentimes low-income countries — with the highest burdens of TB. In fact, 95% of TB cases and deaths occur in developing countries where most people can’t pay exorbitant prices for lifesaving medicines. This is, in part, because of what has long been the dismal state of innovation in treatment: The existing treatments were only modestly effective, curing just 55% of multidrug-resistant TB cases and 34% of extensively drug-resistant TB cases.
For half a century there were no new therapies for drug-resistant TB. The existing drugs are also fairly brutal, requiring painful daily injections for years and often causing devastating side effects such as permanent deafness and psychosis.
Bedaquiline represents a game-changer. When included as part of a treatment regimen, it has demonstrated 77% positive treatment outcomes among people with multidrug-resistant and extensively drug-resistant TB. In 2019, the World Health Organization updated its treatment guidelines, recommending bedaquiline as a core drug in an all-oral treatment regimen for multidrug-resistant TB and urging countries to make the switch from the antiquated and ineffective injectables to the regimen containing bedaquiline.
But bedaquiline hasn’t reached most of the people who need it, mainly because of its high price. The company has sold its drug for up to $30,000 per six-month course in high-income countries. Just 37,157 people worldwide have received bedaquiline since its provisional FDA approval in 2012, representing only about 20% of those with drug-resistant TB who need it.
TB survivors and activists and humanitarian groups like Doctors Without Borders have asked Johnson & Johnson to lower the price of bedaquiline to $1 per day. Researchers have found that Johnson & Johnson could make a profit from bedaquiline by charging 25 cents per pill.
Under the current drug development system, Johnson & Johnson, like all companies that hold the rights on drugs, have sole authority over setting the price. Not so fast, we say: Bedaquiline was developed with considerable support from taxpayers, nonprofit organizations, and philanthropies. A recent report from Treatment Action Group details these sources of funding and estimates that public expenditures on bedaquiline development have been three to five times more than what Johnson & Johnson has spent on the drug.
The joint effort behind the drug’s development goes beyond funding. Many studies and operational research carried out by others, including Doctors Without Borders and Partners in Health, were key in generating the evidence to inform the use of bedaquiline, including its effectiveness against drug-resistant TB.
We are joining other activists in calling for Johnson & Johnson to make its drug affordable for everyone who needs it. Just as prevention and treatment of HIV should not be denied to people because of their sexuality or drug use, curative regimens for drug-resistant TB should be readily available for the people most impacted regardless of where they live, their skin color, or their ability to make Johnson & Johnson more money.
“5B,” the documentary that Johnson & Johnson sponsored, shows how nurses like us cared for people despite the ignorance and discrimination that continue to hinder the provision of health care for people with stigmatized diseases like TB and HIV/AIDS to this day.
Lack of access to effective treatment not only consigns thousands to preventable suffering and death, but compounds stigma and deters detection and infection control.
Johnson & Johnson can honor nursing best by making bedaquiline accessible for all, putting TB and HIV nurses out of business — a prospect that would delight us.
Sasha Cuttler is a registered nurse with the San Francisco Department of Public Health who has worked in both HIV/AIDS care and tuberculosis control and is now doing Covid-19 testing and telehealth for the department. Mary Magee is a registered nurse who has worked as a hospital and community nurse for the San Francisco Department of Public Health for 32 years. Guy Vandenberg is a registered nurse and HIV clinical specialist currently on paid leave from the University of California, San Francisco, and now volunteers at a Covid-19 emergency field hospital in San Francisco’s Bayview District.