Even if we identified every person with HIV in New York, even if we got every one of them into care, even if the drugs were all free, we would still not achieve 80% viral suppression, because people must understand the "why" and the "how" of the meds, so that they work.
-- Mark Milano, ACT UP, ACRIA
To end an epidemic you need to think both big and small. New York State's plan to end AIDS definitely takes care of the big thinking. It is both epic and visionary. Slogans such as Bending the Curve and We Can End AIDS are terrific banners to gather under. Just imagining a way for this to happen is incredible, and for Governor Andrew Cuomo to get behind it is even greater.
But how is it going to be done? What are the details? This is where simple slogans end and the complicated business of doing begins.
Why does Mark Milano's comment to the White House representatives at the Office of National AIDS Policy community forum in Manhattan this summer make sense? Because education is the key to ending this epidemic.
I remember handing out condoms on World AIDS Day in subway stations in New York City in the early '90s and wondering -- as people threw them in the garbage, avoided me, or once in a while took one -- how many actually used them? Was it an effective way to help people practice safer sex? If that was the case, shouldn't the epidemic be over by now? Why isn't everyone using condoms all the time? We soon learned that changing sexual behavior was more complex than handing out condoms. It certainly was a great public service announcement and raised awareness about AIDS. But it didn't make people change their sexual behaviors.
We now know that getting people to change their behavior is much more complicated. We learned that we need community health educators who can assess risk behaviors, readiness to use condoms, and resistance to change. We need people who can teach correct condom use in an accessible and relevant way, and talk about the decision-making needed to adhere to the new behavior.
A community health educator is an important resource because information as personal as this requires someone who can speak on a level that is understandable, in familiar language, and in a nonjudgmental way. Someone who establishes a relationship with the listener.
Knowing the right thing to do and doing it 100% of the time is harder than it seems.
-- Victor Maldonado, theguardian.com
HIV Treatment Education
- Community Health Education: Education conducted by members of or from a community that promotes and maintains health by helping clients adopt healthy behaviors.
- Health Literacy: The capacity to obtain, understand, and use information and services needed to make appropriate health decisions.
- Care Coordination: The organization of patient care activities to assist with delivery of health care. A core principle of care coordination is that people with HIV should have a medical "home" to coordinate all their needs. Effective communication between the primary care provider and the patient navigator/care coordinator is crucial for supporting engagement in care and adherence.
- Adherence: The extent to which a person's behavior in taking medication corresponds with agreed recommendations from a health care provider. For people with HIV, adherence means taking HIV medicines every day, as prescribed -- including food requirements.
What do we know about taking medication? Here are some facts:
- A 2003 WHO report stated that at least half of all patients with chronic illnesses do not take their medications as prescribed.
- Typical adherence rates for medications prescribed over long periods of time are about 50-75%.
- Most studies of HIV adherence show around 70% adherence.
- HIV treatment requires 95% adherence to be effective.
- Most people with HIV report being more adherent than they actually are.
Community health education is essential to promote health and prevents disease within targeted communities. It goes into communities, and it comes from within them. It uses health promotion materials and interactions at understandable literacy levels. Health information is communicated in ways that are clear and that are able to be evaluated. Without these qualities -- a "health literacy" approach -- the information may not be useful.
Effective health communication uses plain, but not "dumbed-down," language. It's information people can understand the first time they read, see, or hear it. It helps them find what they need, understand what they find, and use it to meet their needs.
A doctor says to a patient prescribed HIV medication, "You have to be 95% adherent for viral suppression, so take this every day." A community health educator says, "You have to take this medication once a day, every day, at the same time every day. If you miss more than two days a month the medication may not work."
Research has shown that health literacy is a significant factor in the health and treatment of people with HIV. We know that people with HIV who have lower health literacy have lower CD4 counts, higher viral loads, are less likely to be taking HIV medications, have more hospitalizations, and are in poorer health than those with higher health literacy. In addition, after adjusting for years of schooling, lower health literacy is associated with poorer knowledge of HIV-related health status, poorer AIDS-related disease and treatment knowledge, and more negative health care perceptions and experiences.
Understanding complex topics like adherence to HIV meds depends on the abilities of those providing the education: often doctors, nurses, home health workers, etc. Unfortunately, they generally don't have the time to discuss complex medical problems and they don't have the needed teaching skills. Shorthand, acronyms, and jargon are common, and explanations are often not effective. In addition, many patients will not ask questions of clinicians, because of embarrassment at not being able to understand the information or for cultural reasons related to dealing with authority figures.
Care Coordination and Education
Community health educators are key to solving this problem. They come with slightly different job titles like patient navigator, patient educator, AIDS educator, peer navigator, and health promoter. A good example of how community health educators can work is the NYC DOH Ryan White Care Coordination program.
Based on the PACT (Prevention and Access to Care and Treatment) model from Boston's Brigham and Women's Hospital, the city's 28 funded Care Coordination programs address HIV treatment adherence through a combination of care coordination and health promotion. Patient navigators provide one-on-one education on over 25 different subjects, including basic HIV information, HIV medications, resistance and how it develops, adherence skills, substance use, and disclosure issues. These patient navigators live in the communities where they work, speak the community's primary languages, and understand the cultures of their communities. Many have HIV themselves, are on treatment, and are virally suppressed. They've also been trained in health literacy approaches targeted at low literacy levels.
Although the percentage of HIV-positive New Yorkers who are virally suppressed is not yet 50%, at 44% it is higher than the U.S. average, due partly to the Care Coordination program and other community health educator programs.
Bending the Curve With PrEP
Let's go back to the issue we started with and look specifically at the NYS plan. One of its major goals is to provide access to Pre-Exposure Prophylaxis (PrEP) for high-risk persons, to keep them HIV negative (see "A Magic Pill to End AIDS?" in this issue).
Are we going to just hand out PrEP and expect that to prevent new infections? Will it be that simple? We've learned that starting medication and dealing with adherence are important to the long-term management of HIV disease. Now we're dealing with daily medication for prevention, and adherence will have a direct impact on its success. The difference with PrEP is that we're giving medication to people who are well.
How do you get a prescription for PrEP if you're HIV negative? Simply put, you can go to your doctor and ask for it -- a "patient-initiated contact." Or the doctor can suggest it -- "provider-initiated" -- because he or she thinks you're at risk. Or someone doing outreach might bring you to the doctor, where it's offered.
In order to ask for PrEP you have to identify yourself as being at risk for HIV, be ready to do something about it, and be knowledgeable enough to take action. This means you have to have heard about HIV, learned how it's transmitted, processed this information, applied it to yourself, and recognized that you are at risk. You also need to have a relationship with a primary care provider -- a good enough relationship that you are comfortable disclosing sensitive information about your sexual behaviors -- who will write the prescription without judgment.
Here's the kicker. It's HIV medication. HIV medication for someone HIV positive requires 95% adherence to achieve viral suppression. For PrEP to work at its best, it must be taken every day. In the iPrEx study, people who took only half their doses had their chance of infection reduced by only 50%. At 90% or higher adherence -- missing less than one dose every other week -- PrEP reduced the chance of infection by 75%. A key statistic needs to see the light of day: While 93% of people in the trial reported taking PrEP correctly, only 51% actually did so, based on blood tests that checked the level of drug in their blood. People over report adherence for many reasons. In follow-up studies, the manner and approach of the trials counselor have been shown to affect how accurately people report their adherence.
The message from iPrex is clear: whether you're HIV-negative or -positive, for meds to work they must be accompanied by effective and ongoing education.
Visionary and epic ideas are great. Sexy slogans that capture their grand qualities are great. But when it comes to implementation, the key element of the community health educator must not be left out. People can learn this complex information if given the chance. As Lisa Frederick, the Associate Director of the Training Center at ACRIA says, "Never underestimate the capacity of a person to understand medical information -- if given to them in the right way."
Joseph Lunievicz is deputy executive director for programs at ACRIA.