When I met Pebbles, she was 15 and had been admitted to the emergency room with a pelvic infection. We diagnosed her on the spot with HIV.
Pebbles had a life filled with trauma – she had spent most of her youth in foster care and in the juvenile justice system. When she was 17, her mother died. Despite her other problems, it was her HIV diagnosis that caused her the most shame and isolation.
She was so stigmatized by having HIV, so ashamed, so fearful of rejection by family and friends, that she did not tell anyone that she had acquired the disease. This made it almost impossible for her to come to the clinic, to take her HIV medications, and to care for herself. As a result, despite our best efforts, she couldn’t take her HIV medications regularly and died of a completely preventable brain infection. She was 22 and left behind a 1-year-old daughter.
The overwhelming stigma her story illustrates is one of the greatest challenges I’ve encountered in my 20 years as a physician treating women and girls living with HIV. I see this every day in my clinic: Many of my patients do not feel safe revealing their status to anyone for fear of rejection or violence. To make matters worse, California still has a number of laws on the books that, instead of promoting public health, criminalize people living with HIV and add substantially to the stigma surrounding it.
These laws impose draconian penalties on people living with HIV even for activities that carry no risk of transmission. By treating HIV differently than other serious communicable diseases, these laws increase the sense of shame and isolation attached to HIV.
This legislation has never been shown to help prevent HIV transmission. Rather, it makes it less likely that people living with HIV will get tested and seek treatment that makes them incapable of transmitting the virus. These laws actually increase the risk of HIV transmission in our communities.
Since these laws were enacted in the 1980s and ’90s, we have developed potent HIV medications that, when taken regularly, suppress the virus so effectively that HIV-positive people can live long, healthy lives and be completely noncontagious to others – something confirmed by two international studies. We have also learned that HIV-related stigma is, itself, a serious public health issue.
A bill recently introduced in the California Senate would modernize the state’s laws targeting people living with HIV with criminal penalties and bring them in line with how we treat other serious communicable diseases. Senate Bill 239, authored by Sen. Scott Wiener, D-San Francisco, eliminates this form of HIV exceptionalism by incorporating the current scientific understanding of HIV, addressing HIV in the same manner as other serious communicable diseases, and eliminating extra punishment for people living with HIV who engage in consensual sexual activity.
There are many reasons for HIV-related stigma, but state laws that criminalize HIV are among the worst offenders. These laws, as they are currently written, are not only outdated and ineffective, but they are actually dangerous because they create a climate of fear and discrimination that lead to more HIV infections.
SB 239 is not a partisan or political issue, nor is it a matter of conflict in medical science. This is a basic issue of public health. The proposal to revise and modernize these laws is crucial to achieve our shared goals of reducing new HIV infections and helping those living with the virus to be safe, healthy and empowered.
Dr. Edward Machtinger is a professor of medicine and director of the Women’s HIV Program at UC San Francisco. He can be contacted at Edward.Machtinger@ucsf.edu.