PROVIDING HIV/AIDS CARE IN A CHANGING ENVIRONMENT — SEPTEMBER 2005
According to the 2000 Census, 46 percent of the U.S. population age 5 and older—more than 120 million people—lived in a different home in 2000 than in 1995; 8 percent (22 million) lived in a different State, and 3 percent (7.49 million) had moved here from another country.1 People in the United States seem to be moving all the time: across town, across the continent, or across the ocean—sometimes temporarily and sometimes permanently.
For most of us, a big move entails a search for new health care providers, which generally takes place through word of mouth from coworkers or, if we are lucky, our previous physician. But people living with HIV/AIDS (PLWHA), wherever they move and for however long, are at increased risk for interrupted HIV/AIDS care, a situation most can ill afford.
Relocations are not all the same, of course, and in terms of the risks they pose to PLWHA, some are more easily managed than others. For example, providers seeking to coordinate care for a client moving to another part of town are likely to be familiar with available care in the region. But what about a provider trying to coordinate care for a client who is moving to a new State or even to another country? How likely is it that a provider in rural New Mexico has a referral relationship with a provider in Northern Idaho? What about access to Medicaid, the AIDS Drug Assistance Program (ADAP), and other State-administered safety-net programs in the new location? What about the transfer of medical records? What if that client plans to return to the clinic after a few months away? What about clients who don’t tell their providers that they are moving? These and many other questions may confront PLWHA who relocate.
Mobility can have the positive benefits of increasing economic opportunity, reuniting family and friends, and improving quality of life. But for PLWHA, mobility can also increase the risk of falling out of care. That risk is especially acute when people are moving across different cultures, different health care systems, and different languages.
“Pedro” is a 45-year-old migrant farmworker who moves from region to region following the growing seasons every year. He spends several months of the year working in fields in South Florida, where he has been able to obtain ongoing HIV care.
“Pedro was doing fairly well compared to his first visits at our clinic,” says Glenn Price, Title III project manager at the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act–funded Hendry County Health Department in LaBelle, Florida. “His CD4 count was 145 and his viral load 114, but then he left us to go north for work. Six months later and more than a thousand miles away, he called our case manager to tell her he was very sick.”
After only a few minutes into the conversation, it became clear that Pedro had received no medical care or treatment since having left Florida. His case manager helped him get admitted to a local hospital in his new town, where he was diagnosed with Mycobacterium avium complex (MAC), an opportunistic infection that commonly occurs in people whose CD4 count is less than 100 and can spread to the lungs, intestines, bone marrow, liver, and spleen. Would Pedro have developed MAC had his care not been interrupted? How much longer would he have gone without treatment had he not phoned his case manager back in Florida?
Migrant farmworkers offer perhaps the clearest example of transient populations affected by HIV/AIDS in the United States, but many other groups exist, such as truck drivers, the millions of people who move back and forth across the 2,000 mile U.S.-Mexico border, and immigrants who split their time between living in their home country and the continental United States. For the latter population—specifically, people who live part of the year in the New York City area and another part in Puerto Rico—the CARE Act community has amassed significant knowledge on building systems for ensuring uninterrupted care for transient populations. How? Through a project called the Air Bridge Network.
The United States and Puerto Rico have a unique relationship. One result is that each year, tens of thousands of people travel between the U.S. mainland and Puerto Rico. Air routes between metropolitan New York and the island are especially heavily used and are known as the “air bridge” between the two areas. In the mid-1980s, that air bridge begin to intersect with the trajectory of HIV/AIDS.
People move back and forth between New York and Puerto Rico for a multitude of reasons, but 15 years ago, a common issue among people who are HIV-positive was that access to treatment was better on the mainland, explains Barbra E. Minch, president and CEO of New York City’s William F. Ryan Community Health Center, which is the lead agency of the Air Bridge Network. “We had to find a way to create culturally competent providers here in New York and then link people to those providers,” Minch says. She is quick to point out that the challenges cut both ways: “Because people on the mainland were also going back to Puerto Rico, we needed to make sure that they had access to the care they needed once they arrived and that their providers were talking to each other.”
Many of the risks and problems faced by PLWHA who move to and from New York and Puerto Rico were discussed in the 1992 National Commission on AIDS report The HIV/AIDS Epidemic in Puerto Rico. It was during this period that a group of providers that included the Ryan Center, the San Juan AIDS Task Force, Centro de Diagnostico y Tratamiento de la Playa de Ponce, Saint Vincent’s Hospital & Medical Center, and the Hispanic AIDS Forum, along with officials from the New York State Department of Health, the New York City Department of Health, and the Health Resources and Services Administration (HRSA), began discussing a plan for coordinating the care of people traveling over the air bridge. Those discussions were the genesis of the Air Bridge Network (www.airbridgenetwork.com), which has the following attributes:
Clients of Air Bridge are PLWHA who have traveled between New York or Connecticut and Puerto Rico over the previous 6 months. The network helps clients make seamless transitions from one care system to another. Network providers know that a new client will be arriving and can begin linking him or her with essential services even before the first visit to the provider.
Today, the Air Bridge Network comprises two organizations in New York City, one in Connecticut, and seven in Puerto Rico. The Connecticut provider receives CARE Act Title I funding to support its participation in the network. The New York providers also are funded through Title I, and they receive funds from the HRSA Division of Community-Based Programs. In Puerto Rico funds are provided under Title III of the CARE Act.
The 10 organizations that implement the Air Bridge Network today did not spontaneously come together, but each had a strong commitment to the concept. From the start, project founders looked for organizations whose mission was to help the underserved. CARE Act grantees and federally-funded Community and Migrant Health Centers were obvious targets. The network founders also asked grantees to identify potential partners in their regions, who were then contacted by phone. The prospective partners had many questions: What are the goals of the network? How best could the network reach targeted populations? Where were potential funding sources? What were the challenges of working with two differently structured health care and reimbursement systems? What was the role of the lead agency? What training might be necessary? Answering those and other questions helped the founders define and refine the scope of the network’s activities.
According to Lydia Rodriguez, Air Bridge Network project director, “One important lesson we’ve learned is that linkage and referral is really about relationships, and relationships don’t just happen. Communication is key.” Similarly, Rosalie Canosa, the Ryan Center’s director of case management and support services, notes: “We make presentations at HIV/AIDS-related meetings—it’s about getting out information and literature to let people know who we are and how we can work together.”
The Air Bridge Network has never left communication to chance. “Each member agency has a coordinator, and these coordinators have ongoing phone conferences and formal quarterly teleconferences,” explains Rodriguez. “These meetings allow coordinators to discuss particular cases and to address project management issues, and to update each other on relevant policy or funding issues.” The work that occurs in the phone conferences is supported by regular TA visits by Ryan Center staff to member agencies and periodic conferences in Puerto Rico.
The Air Bridge Network’s approach to TA and training reflects that providers bring different strengths to the network and that network systems, such as those for maintaining medical records and processing referrals, require technical capacity among all network members.
In addition, cultural competence has been a focus of TA and training for providers in New York and Puerto Rico. Having culturally competent staff does not mean that care providers must look like the clients they are trying to help—in fact, shared demographics is no guarantee of cultural competence. But it is vital that network members demonstrate an understanding of their patients’ values, belief systems, and barriers to care. Air Bridge Network staff are bilingual and participate in a number of training opportunities on cultural competence and on developing interview and engagement skills, including gaining and maintaining clients’ trust—a priority of the network.
The question of how to maintain and transfer medical records is fundamental for organizations seeking to care for mobile populations. After experimenting with a customized system, Air Bridge Network members decided to use an off-the-shelf product from IBM called Domino Lotus Notes. The system enables transmission of basic information about patients and their medical history that can be accessed electronically and is updated each year. Because the system can be purchased in most computer stores, it is easier for new agencies to join the network.
The process of selecting a software program for managing medical records taught network members an important lesson, says William Murphy, the Ryan Center’s director of special programs and outreach services:
We learned that you don’t have to make everything up from scratch, whether it’s computer software, [a] referral system, finding possible HIV clinics, and so on. We spent a lot of time on a specialized computer system and then decided on an off-the-shelf model that would suit us just as well. With a proprietary system, everyone has to buy into your system, but with an off-the-shelf program there is more adaptability.
Network members are linked electronically, and members’ computers can directly transmit standard documents. Maintaining data electronically, rather than in paper charts, lowers costs and reduces the time needed to convey patient information. The system also reduces the need for duplicate tests, examinations, and medical records. The network ensures compliance with the Health Insurance Portability and Accountability Act’s (HIPAA’s) regulations through maintaining secure fax lines, strictly adhering to patient consent in the release of information process, and ensuring that nothing happens without patient signatures. Patient confidentiality concerns are understood, respected, and guarded.
The Air Bridge Network is designed so that providers can build stable relationships with clients, even though they move from place to place and from culture to culture. “The staff forms cohesive relationships with the people who serve under the Air Bridge project by responding quickly to their needs,” says Canosa. She adds that it is the quality of this relationship between the consumer and the providers that will bring people who have fallen out of care back.
Like so many aspects of the project, the quality of the relationship isn’t left to chance: The network regularly implements client satisfaction surveys and addresses concerns and suggestions from its clients. It also maintains a toll-free telephone number so that clients can have quick access to the services they need. The line averages 300 to 500 calls per month from clients, sites referring clients, and responses to outreach and advertising.
Recently, the network helped a young woman relocating from Puerto Rico to New York City. She is 19 and has a 18-month-old daughter who is HIV negative. She has family members in the States but no one with whom she could live. Explains Canosa:
This is a typical example where we have a new referral made by one of the site coordinators calling from Puerto Rico. This young woman needed help finding housing and medical care for her and her daughter. She felt overwhelmed at first and was here every day for the first week. We made referrals, got her plugged into care, set up basic appointments for lab tests, and helped her with basic entitlements. We also had staff members escort her to some of the appointments that she otherwise would have difficulty accessing and navigating.
A pivotal lesson Canosa believes can be learned from Air Bridge: “Be responsive and don’t push people away. If they walk in the door, respond, be available, build those relationships into trust. If you fail at this, everything else you’ve done right won’t really matter.”
Another program that offers useful lessons on coordinating care for mobile populations comes not from the world of HIV/AIDS but from the field of tuberculosis (TB) care.
TBNet was founded in 1996 by the Migrant Clinicians Network (MCN; www.migrantclinician.org) and a consortium of public health organizations that includes the Texas Department of Health and the Ministry of Health of Mexico. TBNet is a multinational TB tracking and referral project designed to work with mobile populations; its goal is to ensure that people with TB complete their treatment. Treatment for people with latent (not active) TB is commonly a daily dose of isoniazid (INH) for 6 to 9 months. Treating active TB is more complicated and takes up to a year; it may take longer if antibiotic resistance develops. Patients with active TB are generally prescribed four medications: isoniazid, rifampin (Rifadin, Rimactane), ethambutol (Myambutol), and pyrazinamide.
Before developing TBNet, MCN had helped manage a program called “GUAPA,” which facilitated the transfer of medical records between a health center in Guanajuato, Mexico, and one in Harrisburg, Pennsylvania. The health centers served patients who migrated between their homes in Mexico and the seasonal farm labor camps of Pennsylvania. GUAPA established a conduit for binational data transfer between the two care sites—until funding for the project evaporated in 1996.
Out of adversity comes opportunity, and MCN and its partners did not want to lose momentum. They developed TBNet, a new model for providing ongoing information to the numerous clinics involved in the treatment of farmworkers. The goal of TBNet was to expand far beyond Guanajuato and Harrisburg to encompass clinics everywhere migrant farmworkers traveled. Today, 9 years later, TBNet has had 1,500 clinics participate and has expanded its patient base to include the homeless, immigrant detainees, prison parolees, and anyone who might be mobile during TB treatment. What began as a project serving just two cities now involves countries in Central America and Asia as well as all 50 States.
Program manager Jeanne Laswell explains how the network began to grow:
At the beginning, if we knew a person was moving from California to Nebraska, I would call the Nebraska State TB Controller and ask for the name of a health department that gives TB treatment—preferably for free—in the community to which the client was moving. I would then call the clinic, explain the situation, fax the medical records, and establish a relationship that way.
TBNet continues to expand. Recently, Laswell has filled requests for referrals in Honduras, Guatemala, Korea, the Philippines, and Indonesia. Laswell has found clinics in those countries and has added them to TBNet.
Laswell’s job does not end with making the referral. She says, “After the referral and transfer of medical records, I call every 4 weeks to check up on patients with active TB and every 6 weeks for patients with latent TB.”
Laswell assiduously tracks clients in the TBNet system. She notes, “Some health departments in the U.S. are very sophisticated and independent and make their own connections with mobile patients’ move to yet another location. All I ask is that they tell me where they sent the patient, so I can continue to follow up with the new clinic.”
In Laswell’s experience, many health departments are small and are unfamiliar with mobile populations. As a result, they are at a loss when confronted with a TB patient who is leaving the area before completing treatment. She says,
In those cases, they will often remember the TBNet connection because I have been calling every month. They might remember me and call me. I can often find a good referral in less than 10 minutes, whereas it would probably take them hours—and they don’t have the staff time to spend.
Beyond the crucial referral system, TBNet helps migrant TB patients complete treatment in three ways:
Given the broad range of clinics that constitute TBNet, it is not surprising that their cultural competence in dealing with mobile populations, Hispanic populations, or Asian populations varies. In some parts of the United States, an influx of immigrants or migrants is highly unusual, and the health system does not always know how to deal with different cultural values and beliefs surrounding health care. Although MCN does provide cultural competency training through a contractor, it is not uncommon for Laswell to receive a phone call from a TB clinic that needs basic information about a particular cultural group:
I have had providers in places like Kentucky where they don’t have a large contingent of Mexicans or Guatemalans; where no one speaks Spanish; and [where] none of the doctors understand the health practices, culture, or traditions. They’ll call me and say, “We don’t know what to do,” and I’ll spend half an hour with them giving the basics. I talk to them in general about cultural issues and how to approach them from an effective health education standpoint.
These services, in combination with the case management provided by Laswell, have generated success, particularly in working with patients who have active TB, with whom TBNet has consistently experienced a high completion rate. TBNet compiles monthly data on outcomes, which includes the percentage of patients starting and completing treatment, broken down by demographic variables.
Laswell warns against relying on any kind of portable record as a stand-alone solution:
I wouldn’t want to carry around a portable record that identifies me as having HIV, and there is a lot of that same feeling among people with TB. They don’t want their friends, families, coworkers to know. And for migrants crossing the border into Mexico, they do not bring any identifying papers if they are not legal. They are not going to carry a portable record.
She adds that although TBNet has had the portable record in place since 1996, only rarely does a client present for services with the card. She focuses on old-fashioned relationship building: provider-provider and provider-client.
The Air Bridge Network and TBNet demonstrate the possibility of establishing systems that can provide mobile populations with consistent care. Translating the lessons learned from each program is not simple, however, because of some important variables. In the case of Air Bridge, it was much easier to establish a network of providers in two distinct geographic areas than it would have been to establish a similar network of HIV providers across the entire country. Also, Puerto Ricans are U.S. citizens and can freely travel the air bridge. That is not the case for foreign nationals traveling back and forth between the United States and their home country. Moreover, the law bars immigrants with HIV from entering this country. Because Puerto Ricans are U.S. citizens, the Air Bridge Network does not have to deal with issues of immigration status; however, disparities in health care access and availability, challenges of geography and transportation, and different social service systems all converge to make access to care a challenge for mobile populations.
In the case of TBNet, TB can be cured with a relatively simple and short course of treatment (1 to 2 years); in comparison, no cure yet exists for HIV, and HIV treatment is much more complicated and lasts a lifetime. HIV treatment is also extremely costly and relatively hard to find, whereas first-line TB treatment is relatively inexpensive and readily available, even in developing countries. Less stigma is attached to TB than to HIV, a disease linked to sexual and drug-taking activity.
Despite these major differences, CARE Act providers can glean guidance from the Air Bridge Network and TBNet about how to improve continuity of care for their patients who migrate from place to place for whatever reason. The most transferable lesson is that provider-to-provider relationships are the crucial linchpin. Without a formal network of providers, it is impossible to provide referrals and follow up with any kind of assurance or consistency. It is also essential to have a mechanism for quickly and confidentially sharing medical records, whether through a shared database or simply faxing paperwork. Last, all participating providers should ensure a culturally competent environment and staff and seek training as necessary. Although the problems of providing continuity of care to mobile populations are vast, some of the most relevant solutions are actually within our grasp.
For More Information
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Providers who are helping clients locate care and treatment in a new locale can start by doing the following:
In December 2003, Congress enacted and the President signed into law the Medicare Prescription Drug, Improvement, and Modernization Act of 2003. In a few short months, 85,000 people living with HIV/AIDS (PLWHA), along with roughly 42 million other Medicare beneficiaries, will have a new source of prescription drug coverage through the Medicare Part D program. Tens of thousands of these PLWHA will gain the security of prescription drug insurance coverage for the first time. But establishing the Medicare drug coverage program—and its companion Extra Help assistance for low-income beneficiaries—is an enormous undertaking. In the next issue of HRSA CAREAction, HRSA will demystify the program for the CARE Act community and offer assistance in helping consumers access the program.
In this Issue
Keeping Mobile Populations in Care
Helping Clients on the Move Find Treatment
Publisher
U.S. Department of Health and
Human Services
Health Resources and Services
Administration
HIV/AIDS Bureau
Editor
Richard Seaton
Impact Marketing and
Communications
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Health Resources and Services
Administration, HIV/AIDS Bureau
HRSA CAREAction
HIV/AIDS Bureau, HRSA
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