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Samuel Smith, 20 and living with HIV, testifies.
A change in state law won’t come soon enough to have protected Samuel Smith from contracting HIV during his senior year at Wilbur Cross High School. He told state lawmakers about that — in the hopes that they’ll make the fix for other kids soon.
Smith was one of a group of New Haveners who recently testified in Hartford about what should be done to stop the spread of HIV, particularly among young queer people of color, where transmission rates are on the rise.
He asked the state to remove a barrier to a life-altering medication. If passed, teens could one day obtain a prescription from a school nurse’s office, without having to come out to their parents and then ask for permission.
“I’m testifying here today because I believe this bill could have helped me avoid having to live life with HIV. I’m here so this bill and its potential impact isn’t an abstraction to you. It may be too late to help me, but it’s not too late to help all the young people in Connecticut, now and in the future,” Smith said, “This change is such an easy one to make.”
The bill, HB 6540, focuses on giving sexually active teens access to a preventive medication that could prevent HIV transmission without having to ask their parents. It’s called a pre-exposure prophylaxis, better known by the abbreviation PrEP or by the brand name Truvada.
By blocking the enzyme that allows HIV to replicate itself in the body, essentially “blocking the virus from establishing a permanent infection,” the drug severely lowers the chance of contracting the virus, when taken daily, said Krystn Wagner, medical director of Fair Haven Community Health Center’s HIV programs.
In a prior session, a similar bill got stuck in committee over concerns about the drug’s health effects on teens. But last May, the U.S. Food and Drug Administration determined PrEP was safe for adolescents, as long as they weigh more than about 80 pounds, Wagner said.
“During the past 20 years, I have experienced firsthand the revolution in HIV care and treatment,” Wagner said. “But telling a young person that his or her HIV test result is positive has not become easier.”
To be clear, the drug is not a cure for AIDS, a disease that has killed more than 33 million people worldwide since 1980. And while AIDS is no longer the death sentence it once was, PrEP is a key part of the strategy Connecticut’s public-health officials are implementing to eliminate new infections, along with reducing the viral load among those with the disease until they are “undetectable.” Simply put, PrEP can’t reverse a diagnosis, but it can prevent new ones.
HB 6540, which is cosponsored by local Reps. Juan Candelaria, Robyn Porter, Pat Dillion and Josh Elliott, would do that for teenagers who can’t currently get the drug alone. It would allow physicians and registered nurses to prescribe PrEP to minors without asking for parental consent.
Connecticut Department of Public Health
New HIV diagnoses in 2016.
At the end of last month, the Public Health Committee unanimously voted to move the bill to the full legislature with a joint favorable report.
Smith, who found out about his HIV status at Cross’s schoolwide testing day just a few weeks before graduation, said he’d known about PrEP. But he said he hadn’t wanted to tell his parents that he liked other boys and that he’d started having sex.
At the time, “I felt that keeping my personal life a secret was more important than my own health, so I did not seek out a prescription for PrEP, which could have been a potentially life-saving medication,” Smith recalled, as he testified before state lawmakers. “If I had been able to protect my health while protecting my privacy, I would have. That would have been clearly the no-brainer decision, but that is not what current law allows.”
He added, “I’m here to tell you I wish this bill had passed three years ago.”
Smith said that the law should be adjusted to match how doctors and nurses treat other sexually transmitted diseases, including HIV, which do not require parental consent for a prescription. He said there should be no difference for closeted individuals who want access to the medications that could prevent them, like PrEP.
With that tweak in the law, Smith said that his life would be very different.
He is now close to graduating from the University of Miami. “My [college] experience is also very different than that of my friends and classmates, he said. “I see my infectious disease specialist every four months for blood work, class schedule depending. I take a daily pill that I am ashamed to pull out of my backpack.
“I am scared to start dating because I do not want to put anyone what I went through and I struggle to see how anyone could see me past my status,” Smith said. “I am a 20-year-old gay man living with HIV.”
Tom Breen Photo
Jesus Morales Sanchez.
In New Haven, as in cities across the country, fear of retribution for loving a person of the same gender has prevented kids from talking openly with their parents about their medical needs.
That’s been going on for decades, said Patrick Comerford, an LGBTQ+ activist in New Haven who came out of the closet as a middle-schooler in 1992.
Back then, “there was no reliable treatment and there certainly was no pill that could help to prevent infection. I stopped planning for a future because it was so uncertain. I didn’t bother to strive academically and only finished my undergraduate education a year ago at the age of 37,” he said. “As a teenager in the mid-1990’s, I understood AIDS as a death sentence and couldn’t see the point of bothering to plan for a future that wasn’t mine to have.”
Yet a quarter-century later, even though a little blue pill (that’s far more expensive than it should be, thanks to its pharmaceutical maker) could prevent the AIDS epidemic from spreading, those under 30 years old are being infected at the highest rates.
From 2013 to 2017 in Connecticut, 266 young adults under 24 years old were newly diagnosed with HIV. That’s a rate of one new HIV infection each week. Currently, in New Haven, more than 1 in every 100 people is living with AIDS.
Jesus Morales Sanchez, an organizer with Unidad Latina En Accion who now takes PrEP every day, said that, growing up, he heard homophobic slurs in his household. He said he once had to sleep at a friend’s house after a physical fight with his father left him bloodied.
Morales said that his “uncertainty” about his orientation and his “lack of sexual education” in school allowed others to take advantage of him, putting him in risky situations “without the adequate protection.” Even if he’d known about PrEP earlier, he said he wouldn’t have ever asked his parents for it.
“While being infected with HIV is no longer a death sentence, treatment is very costly and lifelong,” he said. “We are living in a society where people who need constant medication to survive are dying every day because they can’t access it, and for that reason, prevention is key.”
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Fair Haven Health’s Krystn Wagner.
Wagner said that physicians and nurses should try to involve parents in a teen’s healthcare decisions, but she said the new legislation wouldn’t endanger a teenager’s health just because they don’t have parent sign-off.
“PrEP is an empowering tool for youth. This is a group of people who may, in some ways, feel vulnerable, may not feel the support of their families or the community,” Wagner said. “Here is something that is in their control, that they can use to protect themselves and to take care of their sexual health. Maybe that one tool becomes a stepping-stone to other things that they can reach out for.”
She added that those frank conversations in the doctor’s office, which would have to happen every three months for a PrEP refill, could give teens an opportunity to discuss condom use, coming out or other uncomfortable topics to go over with mom and dad.
Urged on by the New Haven LGBTQ+ Youth Task Force, Mayor Toni Harp also submitted a letter to her former colleagues in the legislature, urging them to pass HB 6540.
On a wonky note, the map is misleading in the context of this story. The map, prepared by the Department of Public Health, is not population adjusted. New Haven's population is more than five times that of North Haven's. Everything else being equal, you would expect five times as many HIV cases in New Haven. And the map represents all new HIV diagnoses, not just those of teens under 18 who would be affected by the bill.