How Can We Help People Under Age 18 Get PrEP?
Getting PrEP into the hands of young people at high risk for HIV infection is a priority that experts are now discussing. A recent webinar and Q&A session hosted by HIVE brought together PrEP providers from across the country to talk about some of these issues and share successes and challenges.
“When you look at who’s been left behind in PrEP uptake, there are many communities that haven’t had the same access, and youth are certainly one of them,” said Adam Leonard, from San Francisco Department of Public Health. “As a city, we’re really trying to focus on what youth need to access PrEP.”
Truvada is approved as an HIV medication for people 12 and older, but only as PrEP for people 18 and older. This makes it more difficult—or impossible—for people who are under 18 to access and use insurance or patient assistance programs to pay for Truvada as PrEP. Compounding those issues are additional concerns about confidentiality and adherence.
Paying for PrEP
How do young people, who may or may not have insurance, access PrEP?
“That’s the million dollar question,” said Jayne Gagliano, PrEP benefits manager at Strut, the sexual health center at San Francisco AIDS Foundation. “The FDA approval for PrEP 2012 did not include adolescents, who had not been included in trials at that time. Now there is evidence that PrEP is safe in adolescents. Truvada as PrEP technically could be prescribed off-label to people under 18. But paying for PrEP is a separate issue since the Gilead assistance program is only available to people 18 and over. Identifying sources of medications for adolescents who can benefit from PrEP is a priority for us.”
Outside of demonstration projects such as CRUSH, which provide PrEP to study participants for free, other patient assistance programs can help cover the cost of PrEP.
Adam Leonard said applying to these programs, such as the Patient Access Network Foundation and the Patient Advocate Foundation, is “a lot of leg work but it’s worth it.” Leonard also noted that in California, the state Medicaid program will cover PrEP services for minors, which helps publicly insured young people access PrEP.
Find more information about how to apply for low or no-cost PrEP, here.
Keeping health information confidential
Maintaining confidentiality of adolescents’ health information is a primary concern for PrEP providers. In many instances, it’s a challenge to keep medical services accessed by young people on their parents’ insurance plans confidential from the policyholders (the parents) and people under 18 may be required to get parental consent in order to access PrEP.
“We all, nationwide, need a lot more done on increasing access to the medication for youth, which includes confidentiality,” said Leonard.
In California, people under 18 can consent for PrEP without parental notification. It’s also possible for suppress insurance company communications to parents when minors (or anyone on another person’s insurance plan) accesses services in California.
Learn more about keeping your health information confidential at www.myhealthmyinfo.org.
Can young people take PrEP successfully?
“I think young people are amazing agents for their own health. Young people can take PrEP, and do take PrEP, and are just brilliant at doing that,” said Caitlin Conyngham, director of PrEP programs at Philadelphia Fight.
A small sub-study of PrEP clients at Philadelphia Fight is measuring how consistently young people in the program take their daily medication. “We see adherence rates of 70% to 80% using a tenofovir assay that we developed,” she said. The key to maintaining this high adherence, which is on par with PrEP adherence in studies with adults, she noted, is to structure PrEP services as a comprehensive program that addresses other needs that young people might have.
Conyngham said the majority of young people in her PrEP program visit much more often than once every three months, which is the standard amount of time between visits for adults. By providing other drop-in services for your people, including primary care services, food, clothing, showers and other resources, the Philadelphia Fight clinic entices clients to visit every week or every month.
Uri Belkind, from Callen Lorde Community Health Center in New York shared that their PrEP hotline—which goes directly to a voicemail that is checked on a regular basis—is beneficial. “We have a sheet that we hand out [with information about the PrEP hotline]. What I have my patients do is take a picture of the number with their phones—because that sheet is going to be lost in 3 minutes, but then hopefully the picture will remain on their phone.”
“PrEP isn’t a prescription that we write,” said Conyngham. “What are the things that are going on in the lives of your young people, and what other things can your PrEP program address?”