For the first three decades of HIV/AIDS, the battle cry was Condoms Always! (and Find a Cure Now!). Since HIV has become a long-term manageable disease, at least for those who can afford and tolerate the newest drug regimens, the emphasis has begun shifting to care. Specifically, healthcare practitioners and advocates for people with HIV strive for how to identify HIV-positive people, get them into care and keep them from dropping out. If you ask many clinicians and HIV specialists, they’ll tell you linkage to care is just as important in slowing the spread of HIV as the trusted condom.
That’s because antiretroviral therapy (ART) administered at an early enough stage of HIV infection can lead to viral suppression—meaning no detectable virus in the blood—and that can help prevent infection of a partner who has never been infected with the virus. Unfortunately, according to the CDC, less than thirty percent of all HIV-infected individuals in the U.S. were virally suppressed as of November 2011.
Part of the reason for the low level of viral suppression is the struggle of many patients to find the right treatment options and stay in care amid various roadblocks—from the difficulty in managing insurance, to medication side effects, to transportation issues. Only in the last few years has this struggle been widely acknowledged in the medical community and in the government.
The Treatment Cascade and the Need for Links to Care
The Treatment Cascade is a model for why so many people don’t get the HIV care they need, and it is now being used by federal, state and local agencies to identify how to improve the delivery of services to persons living with HIV across the entire continuum of care—from diagnosis of HIV infection and active linkage in care to initiation of ART—and how to help these patients navigate the system to continue getting the care they need.
The Treatment Cascade concept was first described by Dr. Edward Gardner in the March 2011 edition of the journal, Clinical Infectious Diseases. Gardner and colleagues reviewed current HIV/AIDS research and developed estimates of how many individuals with HIV in the U.S. are engaged at various steps in the continuum of care from diagnosis through viral suppression. They found that a significant number of people living with HIV in the U.S. “drop off” at various points. Only a minority of persons with HIV actually stay in care long enough to achieve suppression of their viral infection, Gardner wrote.
In late 2011, the U.S. Centers for Disease Control and Prevention (CDC) took this research a step further and analyzed HIV surveillance datasets, viral load and CD4 laboratory reports, and other published data to develop national estimates of the number of HIV-infected persons at each step of the so-called treatment cascade.
Their findings were similar to those of Dr. Gardner and his colleagues. The CDC’s data suggested that, for every 100 individuals living with HIV in the United States, it is likely that:
• 80 are aware of their HIV status.
• 62 have been linked to HIV care.
• 41 stay in HIV care.
• 36 get antiretroviral therapy.
• 28 are able to adhere to their treatment and sustain undetectable viral loads.
That last bullet point is significant for the spread of HIV because it means that less than a third of the 1 million individuals in the U.S. who are living with HIV/AIDS are getting the treatment they need to manage their disease and keep the virus under control. By quantifying what many suspected or knew only by anecdote, the findings by Gardner and the CDC were a wake up call for the medical establishment, policymakers, and HIV/AIDS advocates. With those rather dismal numbers, the search was on to find out how to keep patients with HIV in care.
At the federal level, government agencies use the treatment cascade model to prioritize and target resources. At the state and local levels, program planners also apply the treatment cascade to local data to determine where resources are needed most in individual communities.
Keeping People Engaged Along the Care Continuum
Community health workers, or CHWs, are a key way of addressing the treatment cascade. These positions can go by different names, like care coordinator, and they are technically not healthcare practitioners (they can’t test, diagnose problems or prescribe medicine). But they are being recognized as a crucial link between the patient and the myriad care providers that a patient newly diagnosed with HIV must deal with.
People newly diagnosed with HIV have a lot of fear, and not all of it is about the virus itself, according to Michelle Minor, a senior care coordinator at Chicago House, one of the agencies chosen to do an AIDS United-funded linkage to care project that is being managed by AIDS Foundation of Chicago.
“In the population I serve, most people have not been in medical care generally, so they don’t know how to access doctors and navigate the system or even make an appointment with any doctor, let alone a specialist for HIV,” she tells A&U.
Minor is one of many new care coordinators around the country that help identify people who need care, link them to the right doctors and clinics, and help them overcome some of the hurdles that prevent them from continuing care.
In Minor’s case, the intervention with clients lasts six to nine months, long enough to ensure they make their first couple of appointments with primary care physicians and specialists. After that time, the client should have the confidence to make their own appointments and ask appropriate questions of their case managers and service providers.
“We’re moderators,” Minor says. “Patients come to us who might be angry, upset, non-communicative. It’s easier for everyone involved if I’m there.”
The community health worker is not completely new. In the past, people who have needed long-term guidance in treating maladies such as cancers, “health navigators” or “peers,” were used to keep the patients connected to their providers. What is new is integration throughout the system. In the past, these navigators helped families and friends understand the ins and outs of the medical system, but they didn’t have the relationship with the medical community. Also in the past, organizations built their own peers or navigators in special programs that tended to be one-offs. When the programs ended, the peers or navigators were the first to go.
Those who oversee CHWs say these professionals not only have to understand the complexity of the medical system well, they must maintain strong ties to HIV experts and clinics and testing services, as well as be hand-holders for patients who have many barriers to long-term treatment. Some of those barriers might include substance abuse, inability to find affordable housing, mental health issues, lack of transportation, no money for copays, and competing priorities like work and kids.
CHWs can’t do everything, but in most cases they are able to see the big picture of a patient’s life and make strong recommendations for how to overcome some of these barriers. And in almost all cases they’ll not only check up on patients to make sure they’re making their appointments, they’ll actually go with them, according to Roman Buenrosto, Director of Special Projects at AIDS Foundation of Chicago.
“Some of the things that are new with our community health worker model are the ability for CHWs to build relationships with primary care doctors and testing centers, as well as using pay-for-play incentives, like giving food cards and gift cards for those patients who make it to their appointments,” Buenrosto tells A&U.
Buenrosto says there’s a big education curve for anyone who’s newly diagnosed with HIV. But for those who are already strangers to medical care, that curve is even steeper.
“Taking meds is a big hurdle. Most of the world thinks if you take any medication you’ll feel better. But with HIV meds, you’ll likely feel worse at first. Patients need to understand that and talk with someone [like the CHW] who knows what they’re going through. Doctors and nurses just don’t have time for that kind of follow-up.”
Salaries for many CHWs, like those at AIDS Foundation of Chicago, or other organizations like Christie’s Place in San Diego, Positive Pathways in D.C., are provided partly through Ryan White CARE Act funding. In addition, Washington, D.C.-based AIDS United helps in securing grant money and distributing it to its partner organizations through its Access to Care (A2C) initiative. The goal of A2C is to give local organizations—whether they’re operating as part of clinics, prisons, LGBT social services or other portals—help in accessing hard-to-reach populations living with HIV/AIDS.
CHWs have also benefited from the Affordable Care Act, which allows them to be reimbursed by Medicaid if they’ve been at least recommended by health practitioners for preventative services. That gives the new jobs staying power if private funding should be reduced, experts say.
People with HIV, whether diagnosed or not, who have low income are also poised to benefit from the Affordable Care Act. Nearly half of the states have agreed to expand their Medicaid programs as part of the ACA, and the rest are operating health care exchanges that should make it easier and cheaper for the uninsured to be covered. But all of those newly covered patients presents a challenge: navigating new billing and payment systems, finding specialists, getting tested, determining copays, and more. Again, the CHW can help.
Abby Charles, MPH, is a program manager at Positive Pathways, a collaboration between more than fifteen community partners and the D.C. Department of Health that helps HIV-positive African Americans access supportive safety net services. Charles tells A&U that Pathways’ twelve trained CHWs are an integral part of the system, working closely with case managers, doctors, nurses, and the patients. She says it’s too soon to fully evaluate the statistics about how many more HIV-positive patients remain in care with the help of CHWs—they’re in year three of a five-year program. “But we do have clear evidence that CHWs have led to a drop in viral loads among the patients they serve,” she says.
“In our program a CHW will identify those who are newly diagnosed across the sites where they work, such as jails, or community-based organizations, and give them peer-based counseling to learn just what has kept them out of care,” she adds. “This could be home visits, linking patients to social support and helping those who need it to overcome the hurdles of how to get to a doctor and how to deal with substance abuse and even domestic violence—whatever things are standing in the way of getting treatment and staying in treatment.”
According to AIDS United Senior Vice President Vignetta Charles, PhD, more than 4,000 patients have been enrolled in community-based programs like Positive Pathways under A2C. And nearly two-thirds of these patients are linked to care within 30 days of enrollment and three-quarters of them become actively engaged in maintaining their care. Outcomes like these are life-saving, Dr. Charles notes.
Not every community has the same models to get patients into care, but Dr. Charles says they do see some common themes throughout the country. Those themes include the need for:
• Peer navigation. Patients want to talk through their experience with someone like them, Charles says. “An African-American woman may not relate as well to a white gay man when talking about their experience with treatment, so we have to be aware of that.
• Care coordination. If you have to go to four doctors, three clinics, and two pharmacies to get five prescriptions, that’s a lot for even medically savvy and hearty patients, and that’s another area where CHWs can help. “In addition, there can be coordinated care between, say, a domestic violence shelter and a clinic and an LGBT organization,” she says.
In addition for providing a model for how to bring patients into care, organizations like AIDS United can be a conduit for even more innovations to the same end, Dr. Charles says.
One of the innovations AIDS United supports is “Medical Skype,” for patients in rural areas where it’s not feasible to travel three to four hours. Patients can have an online chat with the doctor or nurse practitioner, provided they have a computer and Internet access.
“Smart phones are getting cheaper now, so we can see the development of an app that reminds people to take their meds,” Charles adds.