Effective Linkage to HIV Care Services, a Crucial Step for Retention
When a person receives a positive HIV test result, they should start to go down a path that leads to good health and quality of life. The first step, and one of the most important at this stage, is to start antiretroviral treatment.
An effective link to HIV care services must be guided by trained people with an appropriate profile who provide support and information that contributes to the empowerment of people with a recent HIV diagnosis. The way in which an HIV-positive result is delivered to a recently diagnosed person is another key element, it requires post-test counseling that provides guidance, answers any and all questions, and is hopeful, followed by an effective relationship. These two steps may translate into that person having better adherence to treatment in the future, being less prone to abandonment, and, as a consequence, having a better state of health.
However, there are different obstacles that hinder this step, since the information on where to go or what process to follow to receive care in a health institution is not always clear.
This is why the process of linking to care services is so important since it is the gateway for the newly diagnosed person towards comprehensive health care and the path to learning to live with HIV.
Throwing Paper Airplanes
After the first years in which people had more access to rapid HIV tests, linking to care services “was like the missing link” in the chain of HIV care, recalls Dr. Patricia Campos, head of the bureau AHF Latin America and the Caribbean.
Referring is not the same as linking, in those years, the most that was done was to provide the contact information of services so people with a recent HIV diagnosis could request HIV care. “What we did at AHF, was to hand out a reference form, which stated where they could go, at what times, phone numbers, with which person, etc.“, she says in an interview. “But soon after we realized that referring was like making a paper airplane and throwing it into the air. We had no certainty that people were reaching the service, that they had managed to overcome institutional and personal barriers to finally get their treatment ”.
Personal barriers can be fear, shame, self-stigma, economic difficulties, transportation, access to health services, disabilities, etc., while institutional barriers can range from attitudes of health staff, institutionalized stigma and discrimination, even the complex bureaucracy that in many countries, can delay or definitely discourage people from seeking care and starting their treatment.
The AHF Model
To meet this challenge, AHF Latin America and the Caribbean took up the foundations of the service link program that was already being developed in AHF United States and adapted it to the needs of each country in the region. This was necessary because each country has different health systems, some are segmented, others unified, therefore it is necessary for the linker to know the requirements and procedures very well according to the country and the institution so that the person newly diagnosed with HIV receives care and treatment promptly.
At AHF, the linkage service is offered to all people who undergo a rapid HIV test and who had a reactive result during the post-counseling process. At that time, if the person agrees to receive the service, he or she contacts the linker who from that moment has the responsibility of facilitating and expediting the integration of the new patient to care services, where a medical record will be created so that antiretroviral (ARV) treatment may be initiated. The person is informed about which health institution they can go to, that they will be given personal support to carry out the admission process, and will also be accompanied to their first two medical consultations. The goal of AHF is for the person to start ARV treatment within a period of no more than 14 days after their screening test.
But this work has many details to attend to. First, the user must agree in writing to receive the service, as AHF takes care of confidentiality at all times. Then, they are presented with a linker, if at that time there is none available, the person is asked for contact information so they may be contacted as soon as one is available.
After establishing contact (by phone or by email), the linking staff establishes an appointment and makes sure that the person can initiate the process and stay in communication (for example, offering cell phone credit or delivering public transport cards). Thus, the linker will review the procedures and requirements to enter the corresponding health institution together with the user and will accompany them physically (provided that the current health situation allows it), otherwise, monitoring is done in a non-formal way face-to-face, until the link is completed.
“The objective of effective linkage is to reduce the time between the delivery of a reactive result and the start of treatment, (no more than 14 days),” says Patricia Campos. Unfortunately in some countries and/or clinics, this period is extremely long and can take between 6 to 8 months. “In those 6 or 8 months, people may abandon the linking process, give up, become discouraged, or in the worst case scenario, die before being incorporated into care services, because between bureaucracy and slowness, it would seem that everything is made to discourage people ”.
Linking to Services, What For?
It is a crucial moment for someone with a reactive result to take the next step to begin their care and to achieve this, it is important to be able to communicate the importance of early initiation of treatment in HIV infection.
“It’s the same as delivering a reactive result. That is, when the reactive result is delivered with encouraging messages, based on objective, truthful, scientific, non-evaluative information and opening a range of options to people, then it has a better impact on their life than when we do it in an incorrect way. Which is, the opposite: judgmentally, dramatically, closing off opportunities or hope, etc. ”, reflects the medical specialist.
This also means that “when we do a good linking process, we are going a long way towards having a person well adhered to their treatment,” she emphasizes.
The Great Challenge of Bureaucracy
In AHF’s experience, the obstacles a person may face in seeking HIV care are diverse. Sometimes there is a shortage of medicines, other times, a saturation of health services, and other times it may be the stigmatizing and discriminating attitude of health staff, which still persists today.
In addition, some internal processes of institutions “are archaic and have continued like this because nobody wants to change the status quo so as not to be uncomfortable,” Campos observes. And that is where AHF plays an important role: not only do we provide close accompaniment to people but we also deal with pointing out how things can be done better, “the quality approach, focused on the needs of the user, not on the needs of health or institutional staff”.
For this task, the foundation collaborates with various clinics in the region, where it holds frequent meetings with health teams and with the authorities to provide them with the feedback it collects from its users. From there, action plans are established with responsibilities for both parties, and they are followed up, always from local teams.
Withholding Antiretroviral Treatment, A Long-Term Challenge
The success of antiretroviral treatment, the goal of which is to control HIV infection, depends on sticking to it as well as possible. Therefore, retention is another one of the key pieces in the continuum of comprehensive care, where people require support. We are talking about a chronic disease, where treatment is for life and should not be suspended. After a person has gone through a screening test, the care linking process, and is receiving their ARV treatment, there is a risk that they may drop out. For this reason, AHF and AHF Latin America and the Caribbean are already working on new strategies to support this important aspect, since quite some people abandon their treatment for various reasons, which can be personal, such as depression, substance addiction, feeling better and believing that they can stop their treatment, religious beliefs, or structural reasons such as lack of employment, financial resources, difficulties in accessing clinics due to distance or transportation, etc.
With this in mind, AHF launched a pilot program called the Retention Optimization Initiative (ROI), which involves, among other activities, training teams of health personnel in each clinic, which can review cases at risk of abandoning treatment or users who have just been recovered for treatment. “We want to build this culture to humanize care a little more and focus on the needs of users,” says Dr. Campos.
The ROI initiative also includes the formation of user growth groups, initially monitored by health personnel, but which can later be monitored by other users. “The objective of these groups is to educate the members about HIV infection and the importance of adhering to their treatment, many of the issues will arise from the same needs of the group.”
If you want to take an HIV test or if you already have a reactive result and do not know where to seek care, we can support you. Contact us at the closest office in your country or write to us via WhatsApp.