Conference Preview: An Interview with Keynote Speaker Dr. Charles van der Horst
“If we don’t stand up for our patients, who will?”
Charles (Charlie) van der Horst, MD, is an infectious disease specialist and a health care activist. He is Emeritus professor of medicine and infectious diseases at UNC Chapel Hill School of Medicine and Senior Consultant to EQUIP, a global HIV treatment and prevention organization. He will be giving a keynote address at the Lown Institute Conference the afternoon on Saturday, May 6 on standing up for right care. We spoke with van der Horst about his history of activism around HIV/AIDS, the Affordable Care Act, and other progressive causes.
Lown Institute: When did you start doing health care activism?
I was pretty progressive already in medical school, when I was at Harvard. Together with faculty we organized protests against a study where the researcher was trying to get consent from women in labor to do genetic testing on their babies. There were so many ethical issues with that study! We kept the pressure on it, went to the Harvard faculty Senate, and it created such negative publicity that the National Institutes of Health canceled the study. I learned that publicity is useful in protests.
Also, it was at Harvard that I first met Dr. [Bernard] Lown, during a month-long elective in my fourth year. I learned a lot about patient care and the importance of listening. Unlike other professors, Lown told me not to be overconfident. He told me a story about a man who came to him with angina but refused anything invasive. Lown thought the man needed surgery, but deferred to the patient and gave him medication instead. The man took the medicine and then jumped on a motorcycle and took a road trip around the country, and was fine! Lown showed me that the white coats are not always right.
How did you become a specialist in HIV/AIDS?
I didn’t choose HIV actually, HIV came to us. When I was choosing a specialty, I was trying to decide between oncology and infectious disease. Both of these require thinking about whole-body, complex problems, which I liked. In the end, I chose infectious disease as a specialty because I didn’t want to deal with all my patients dying. But this was in 1980, right as the HIV/AIDS crisis was about to hit. From 1981 to 1944 we had a lot of patients with HIV/AIDS and almost all of my patients died. It was awful.
But this also let me work with very progressive doctors and activists. There was huge amount of stigma against HIV/AIDS patients, and a lot of people didn’t want to treat them. But the people who did want to treat them were really progressive. We established a ward together and the patients loved it, because they knew that everyone [working] there wanted to be there.
What compelled you to get involved in civil disobedience around the Medicaid expansion?
I had worked to help get the Affordable Care Act passed, but the NC legislature and Governor McCrory did not want to expand Medicaid. People are dying in North Carolina, going into financial ruin because of lack of insurance. So I wrote op-eds, tried to get involved in the legislative process, but the legislators didn’t even have hearings. They didn’t care.
After speaking at a church with Reverend Dr. William Barber, president of the North Carolina NAACP, he asked me if I wanted to protest. I thought, if we don’t stand up for our patients, who’s going to do it? We blocked the door to the Senate chamber, chanting and protesting. When everyone else dispersed, a few of us who were prepared to commit civil disobedience stayed. I was arrested and taken to county jail. If our patients get arrested, they would have huge problems [with making bail and missing work], but I’m a tenured professor, I’m in a position of power. It’s up to the people of power and privilege to do this.
Don’t miss van der Horst’s keynote speech Saturday afternoon at the Lown Institute Conference! Register here.