From a state level, what we did with this project, between UNC, Duke and the state, was develop a statewide system of counselors, about seven distributed across the state, whose job it was to make sure that patients who were newly diagnosed with HIV actually got to and attended their first appointments and had plans to go to a second appointment, and these bridge counselors also went out and found patients who they had lost to care, who hadn’t been seen in at least 12 months. A lot of that burden for patients who are lost to care absolutely falls to clinics taking care of them, that they reach out and try to find the patient. The clinics are sort of limited. Many times, they can’t go out in the field. They’re sort of limited to phone calls and sending letters and that’s kind of about it. These state bridge counselors are actually really good at finding people and helping them get back into care.
DTH: What were some of the needs that you saw in the community that led you to work on this project?
Heidi Swygard: One of the needs is we really didn’t have a standardized process or program to get patients back into care and also … In North Carolina, when you’re diagnosed with HIV, you are going to be visited by a disease investigations specialist who has a couple of tasks. One of those tasks is to link you to care, but there really wasn’t that follow through to make sure that this patient actually attended that first appointment and had plans to go back. So what we had was people being diagnosed but who weren’t linking to care, and now with the program in place our linkage at six months is 98 percent, at one month is in the 50 to 75 percent range. So these bridge counselors have done a really great job at getting our newly diagnosed patients linked into care.
Some of the other needs we found, though, in terms of patients who had been lost at care, there are a lot of issues as to why a patient may not be retained in care but a really big one is transportation, and then competing priorities. A lot of our patients have jobs that really won’t let them take time off to go to an appointment or they may have to prioritize childcare over their own health. So, patients who are not engaged in care, it’s usually for a logistical reason that for bridge counselors, it’s kind of their job to try to help the patient get past that. And that’s included driving patients to appointments.
DTH: How prevalent is HIV in North Carolina, and how is it viewed by citizens?
HS: In North Carolina, our number of HIV patients has more or less leveled off. We have annually anywhere from 1,400 to 1,500 new cases, give or take. The bulk of those new infections are occurring in young men who are having sex with men, and primarily among men of color. When I say young, I’m talking in the 19 to 34 year age group. If you will look at our stats, and you might want to look at ncpublichealth.com HIV/STD facts and figures, you can see some interesting graphics there as well, but if you really look at where our epidemic is focused in that population.
Of the HIV inspection, there are certain things that put somebody at a higher risk, so, you know, multiple sexual partners, partners who maybe are injecting drug users, somebody who might be trading sex for money. HIV is an STD. Thinking about the fact that of your student body population, who are sexually active, they need to be thinking about condoms and they need to be thinking about who could be at risk for having it. And certainly they can go to their doctor and ask that. This is a medication that can be described, most insurance is covering it, and if you don’t have insurance, the company that makes the drug will actually provide it free of cost. What can people do? Get tested and think about whether they’d be a good candidate for PrEP (Pre-exposure prophylaxis).
DTH: What kind of challenges do the stigmas around HIV create for patients and for doctors?
HS: Wow, there’s a lot to talk about there. I think from the standpoint of patients, just their understanding of what it means to be HIV infected. A lot of is stigmatized, and that’s a disease that carries a lot of stigma with it. So patients may feel like, you know, I’ve had a lot of patients, anything ranging from shame to being angry with themselves for something that they didn’t ask for. And it can actually get in the way of taking your medications. It can get in the way of accessing care. And for the providers, I think to a certain extent the stigma of HIV kicks up around testing for it. You may have providers who think, ‘Oh, my patient couldn’t possibly have HIV because they are church-going, stand-up citizens,' but the reality is that they are sexually active. They’re at risk. Anyone who is sexually active and doesn’t know their status or their partner’s status, they’re at risk of HIV. Stigma definitely impacts both sides of the exam table.
DTH: World HIV Day is coming up on Saturday. What does the acknowledgement of HIV mean for you and your patients?
HS: For me and my patients, it means that we have come a long way. We have come a long way from medications with lots of pills with lots of side effects, to much easier regimens that are tolerated for a patient. Patients are living longer, and I have patients who are living fuller lives in terms of completing degrees and having families and having babies that don’t have HIV. For providers, it’s also kind of a call to action that we still have a lot of work to go. We do not have a cure for this. We do not have a vaccine for this. Yes, we’ve made advancements in terms of better medications, that we can now prescribe PrEP which can prevent an infection, but we’re not there yet. We do not have an AIDS-free generation yet, and that’s something we need to continue to work towards.
DTH: What have been some gratifying moments of your work with patients with HIV?
HS: I’ve had patients who have come in, newly diagnosed, gotten medications, you know, that first time that I tell them that their virus is undetectable. You can tell that they’re relieved, that they start to see a little bit of hope there. Definitely any time that I have a woman who is HIV-positive and she gives birth to an HIV-negative baby. That’s an amazing thing to have happen. I love taking care of my patients every day, so to me it’s all gratifying.