We cared for people with HIV in the 1990s, during an era when HIV and AIDS were reported on much more frequently. One of us worked in Oregon at one of the largest HIV clinics in the Pacific Northwest, the other served in U.S.-supported global HIV research and treatment programs through the CDC before joining the National Institutes of Health. Although our settings differed, our experiences shared striking parallels. Most of the people we cared for were in their 20s, often gravely ill, and suffering from multiple opportunistic infections.
At the start of the HIV pandemic, treatment options were limited, initially just a single drug, zidovudine (AZT), followed later by a “cocktail” of antiretroviral medications. In 1996, Dr. David Ho was named Time magazine’s “Man of the Year” for pioneering combination therapy, a breakthrough that offered hope to millions living with HIV. But the side effects were often brutal — nausea, fatigue and other toxic reactions made the drugs intolerable for many. Over time, newer treatment medications were discovered, often with NIH research support, allowing a smaller daily pill burden. There are now more than 40 different drug treatment options for people with HIV, allowing for a near normal lifespan.
While struggling with the physical toll of HIV, many of our patients faced another devastating burden: stigmatization. They were shunned by society and, even more painfully, by their own families and loved ones. This was true both domestically and abroad. In the early years of the pandemic, they endured widespread rejection, discrimination, job loss and denial of medical care. Misinformation and fear fueled not just isolation, but sometimes violence. As care providers, we were often the only ones at their bedsides, holding their hands as they died because no one else would.
As they did in the earliest days of the HIV pandemic, and continue to do today, activists have worked tirelessly to educate the public and push for congressional support of prevention, treatment and care research. It took decades to reach the progress we now see: better testing, long-acting medications with fewer side effects, and promising research aimed at a cure and a vaccine. Most remarkable is the FDA approval of a recent and historic scientific innovation of lenacapavir, a twice-yearly injectable form of pre-exposure prophylaxis that prevents 100% of HIV transmissions in people exposed through any route of exposure.
Inexplicably, the U.S. federal government has instead chosen to revoke key grant funding for HIV and AIDS research necessary to fight the pandemic. Here in the U.S., scientists and practitioners alike are stunned by the wave of cancellations, particularly in light of President Trump’s earlier pledge to end the epidemic by 2030. These terminations are being justified under new policies from the Department of Health and Human Services and the NIH that forbid references to diversity, equity and inclusion. But censoring the language does not erase the people most affected. They are still here. They still need care. And they will not be invisible.
Worldwide there are an estimated 39.9 million people with HIV, but roughly only half are on treatment, and fewer are virally suppressed. It is for this reason that it is critically important the United States, under the Trump administration, continue funding PEPFAR, the U.S. President’s Emergency Plan for AIDS Relief. PEPFAR is one of the most successful single public health initiatives ever funded by the U.S. It has saved more than 25 million lives since its launch in 2003. Although PEPFAR was spared from cuts under the rescission package, its future is far from certain.
When we entered our professions, we made a vow to protect and promote life. These commitments bind us to act in the best interest of every patient, and “first do no harm.” Defunding HIV research and threatening programs like PEPFAR is not just reckless policy change, it is real harm resulting in lives lost. These cuts sever the path to care, prevention and hope toward ending a global pandemic. We are compelled to speak out, and we urge every nurse, every doctor, every health care professional to join us. Tell the Trump administration: restore HIV research and HIV programming. Sustain PEPFAR funding. Lives are hanging in the balance. Silence is not an option.
Timothy Holtz is a professor with the Milken Institute School of Public Health at George Washington University and Teri Mills is a retired nurse practitioner who previously was named the 2019 Oregon Nurse of the Year and served as president of the National Nursing Network Organization.