Lost to Follow up Clients: What to do with Them

Posted by Pozziepinoy on 8:06 PM

Lost to follow up clients are clients that either get lost during the process from HIV Testing and Screening to HIV and AIDS Treatment.

There are so many factors that can lead to lost to follow up clients in the HIV Program.

1. Long Release of the Confirmatory Result.

Here in the Philippines, once a client gets tested for HIV and the result is reactive to the initial HIV screening and testing, the clients have to wait for the confirmatory results of the Western Blot Test. Unfortunately this is required by most hubs before the clients are enrolled in the HIV and AIDS Treatment Hubs all over the country. Unfortunately too, the confirmatory result gets released for a minimum of two weeks after the blood is sent to SACCL in the Department of Health. If one got tested in the province sometimes, it would take around  a month or more before the client receives his or her confirmatory result.

This long waiting period can result to lost  clients. Imagine, the agony of waiting establishes the fear. Imagine at this period, acceptance has not proceeded yet, and instead, the denial phase sets in with high predilection to depression.

During this period, some won't even get the confirmatory result from the testing facility, thus a client who tested positive may succumb later on to infections which compounds the issue.

However, the Department of Health has tried to pilot the RHIVDA method in which three tests are being given to the client during the HIV testing process. Reactive for 2 of the three result confirms the HIV disease. This fast tracking results to no more waiting for the confirmatory result. However, this is not yet implemented in all testing facilities and treatment hubs still follow the protocol of accepting clients only if with the confirmatory result.

So what's the impact of lost to follow up clients? Some clients who are still not convinced that they have HIV continue with their lifestyles, and sometimes continue to have sex without condoms. This compounds the problem, with a suspected client with HIV still having risky behaviors create a vicious cycle. Of course this would translate to spreading the virus. It is almost the same as a client who doesn't know if he is she has the virus or not.

This has to stop. Imagine, clients have already been screened and tested but the long waiting period doesn't make sense at all. If we want to arrest HIV from spreading, we need to fast track the process so that there will be no lost to follow up and these people will start getting treatment which in the long run will also prevent HIV.

2. Follow Through Process

Once a client gets diagnosed to be positive to HIV, the counselors need to make sure that they bridge them to treatment. Clients, confused and all, should be well guided by counselors so that they won't just disappear. What is the point of having aggressive HIV testing campaigns if these newly diagnosed clients are not assisted to immediate care and treatment.

3. Limited Support Group

Acceptance is vital to linking a newly diagnosed client to care. Clients usually are troubled and confused and don't know how to deal with the issues of the disease. That is where the support groups should come into play. One on one counseling may benefit some but some would also benefit from groups. Support groups are vital because the newly diagnosed clients can listen too discussions and can easily relate to the experiences of others.

However, support groups are not always available in each hub. Absence of this contribute to longer acceptance phase which can contribute to lost to follow up clients.

4. Treatment Process: Cost of baseline Tests

Some hubs don't offer free baseline tests. This pushes away clients who are economically challenged. Also, it is a fact that people who can't afford the lab tests even when they are willing to undergo HIV treatment are given the list of tests with no option for assistance. This further confuses a newly diagnosed person with HIV and eventually may lead to loss to not coming back to the treatment hub.

5. No PhilHealth

Some hubs use this No PhilHealth No ARV policy, may it be direct or implied. Those who can't even afford to be a PhilHealth member because of financial constraints feel embarrassed to even come back to the hubs because every time they go there the staff would ask for the PhilHealth membership.

But this is not supposed to be. According to PhilHealth, they should not be used for enrollment for ARV's. They have nothing to do with ARV's unless if the ARV's are procured through the Trust Fund, then it becomes a different matter. But for now, all ARV's are subsidized by DOH and not PhilHealth.

6. No direct follow ups

Most of the hubs don't have a system in place to directly follow up clients if they are taking their medicines, or taking their regular laboratory tests or not. Most hubs say that this is the role of site implementation officers but without the directive from the management of the hubs, this won't be implemented. The lack of follow ups among clients can lead to eventually knowing that these clients are already in adherent, or have magnified opportunistic infections or reemergence of them, or are already dead.

What Can We Then Do?

Project Red Ribbon for 6 years have been trying to address these issues by strengthening the linkages and networks all over the country, from awareness, testing to treatment, care and support. However, slow the response may be , we are trying to address these issues. The Foundation has experienced all these mentioned issues and we try to call the attention of facilities and doctors to pay attention to these issues. To our minds, what is the point of encouraging people to get tested when there are gaps in system.

What can we then do?

1. Fast track the release of results so that clients can:

   a. Start the acceptance process
   b. Start with the treatment

2. All testing centers should;
   a. Have a system of making follow ups of clients if they have gone to the testing facilities
   b. Counselors should be proactive in convincing clients for treatment
   c. Counselors should refer clients to support groups
   d. Counselors should know the entire spectrum from treatment, care and support
   e. If possible, personally assist clients to the treatment hubs

3. Testing Facilities and Hubs should:
   a. partner with support groups for referral of clients
   b. For holistic care, establish their own support groups

4. Testing facilities and Huibs should:
   a. Know the non-government agencies that can help assist an economically challenged PLHIV
   b/ Know the different government agencies that provide assistance

5. Although PhilHealth is needed for coverage of the labs and treatment of HIV, hubs should not imply this as a requirement for dispense of ARV's.

6. Treatment Hubs should have a policy of making follow ups:

   a. By calling clients, reminding them of their schedules and just basically checking them
   b. Counseling should be continuous
   c. Home visits if possible

There are so many ways to stop the number of lost to follow up clients from increasing. It is just a matter of political will to change the policies and protocols. After all, CARING doesn't end with just basic HIV testing but envelops the entire spectrum of HIV from awareness, testing, treatment, care and support. If we care enough, no client will be lost.


TRR HIV Hotline Numbers 


Office: TThS Phone Counselling
(02) 656-7297

If you want to join a private HIV support group in Facebook, please add Darwin Tenoria, the TRR Program Director and request to be added in the group. We have a lot of PLHIV, counselors, HIV doctors, advocates and supporters who you can talk to.

"Spreading Compassion"

-Project Red Ribbon-

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