Tuesday, February 13, 2018

Lost and SAVED.


Today Project Red Ribbon assisted a client who stopped his treatment 3 years ago. He was a lost to follow-up client until today.

Mark, not his real name, messaged the Foundation in the HIV Education Awareness Testimonial and Screening (HEATS) facebook page. He told us that he wanted to get treatment again. 

We met him in an HIV and AIDS treatment hub today. He said that he is feeling some symptoms and his work doctor found a lump in his chest and gave him some mnedications. He is only 22 years old. He also mentioned that his CD4 3 years ago was 34. He told us that he got scared when he got rashes from the treatment that resulted to him not coming back to the hub and continue his treatment.

We personally assisted him in hub. looked for his code, and guided him once more to the procedures of getting the labs and consultation. We counselled him about the importance of treatment. We stressed that he should not stop his treatment again and we will be there for him as his new family. We assured him that he will never be alone in his fight against HIV.

Later in the afternoon, he was feeling grateful and “would fight harder this time.” He also said that as soon as gets better and more stable with his treatment, he will volunteer for the Foundation. 

There are many “Marks” in the country. Some are recorded and some are not. These lost to follow-up clients need to be understood so that we can save their lives.

What do you mean by lost to follow-up?

According to Wikipedia, in the clinical research trial industry, lost to follow-up refers to patients who at one point in time were actively participating in a clinical research trial, but have become lost (either by error in a computer tracking system or by being unreachable) at the point of follow-up in the trial. These patients can become lost for many reasons. Without properly informing the investigator associated with the clinical trial, they may have opted to withdraw from the clinical trial, moved away from the particular study site during the clinical trial, or become ill and unable to communicate or are deceased

This is also used in the clinical setting. In the HIV and AIDS Treatment Hubs, a lost to follow-up client means the client after taking the HIV test, disappeared or didn’t go to the referred treatment facility. The client in this case, is not responding anymore to calls or follow ups from the counselors.

Another scenario of lost to follow-up clients is when the client started the consultation and laboratory tests or may even have started the ARV treatment. Again, the client just diappeared and is not seen again or is not responding to any calls. In some instances, the counselors or case managers can’t even locate the place where the client is staying.

What are the reasons for lost to follow-up clients?

There are so many reasons why clients end up to become lost to follow up clients.

  1. Acceptance issues. Some clients because they are not ready for treatment just disappear. Some are still in denial that they have HIV and would rather deal with the disease later on. Some clients are scared of even the very treatment that would save their lives. Some clients are scared of the side effects of their antiretroviral medicines that they won’t take the risk.
  2. Fear of Stigma and Discrimination. Some clients are too scared to come to the treatment facilities for fear of being recognized, for fear of stigma and discrmination. Some clients don’t want to go to the hubs because they know someone is working there. Because of this, instead of going to a nearby hub, they have to fly to Manila every quarter or semi-annual just to get treatment of get their ARVs.
  3. Financial Reasons. Some clients are having a hard time in going back and forth for consutation and getting medicines because of transporatation fares. Some, facilities are far from the homes of people living living with HIV that they have to spend for expensive fares just to get consultation or refill of their ARV’s, This usually happens in provinces. Another issue is the expensive laboratory tests and medicines for opportunistic infections. Because the economiocally challenged PLHIV can’t afford these, they would rather buy food rather than medicines and labs and would rather not seek heallth service. Some clients who are now on the third line regimen can't afford to buy their ARV's (third line regimen is not free in the country, unlike the first and second line regimen) , thus it is financially draining to continue their treatment. Some clients don’t even have jobs and since they haven’t disclosed to their relatives yet, can’t afford to even pay PhilHealth membership and the fare going to the hub.  Also, which is very unfortunate, some hubs don’t utilize the clients’ Out-patient HIV and  AIDS Treatment (OHAT) treatment package to shoulder the cost of the clients’ laboratory tests.
  4. Death. Of course, people disappear because they are already dead and their death is not reported to the hub.

Strategies to minimize lost to follow-up clients

  1. Aside from one-on-one counselling, hubs should have a partner NGO that will conduct regular support group for clients., This would ensure that clients can verbalize their sentiments and fear for them to be able to accept their condition faster. An adherence discussion among peers should always be part of the therapeutic group. The group can discuss solutions to issues of acceptance based on the experiences of the group members
  2. Counselors and doctors should strongly assure clients about confidentiality. This should be relayed verbally or be displayed in the hubs through posters to give everyone assurance. Hubs should always have a complaint desk for violations of confidentiality. Couselors, doctors and the supopirt group should reiterate the side effects and how to combat or minimize them and stress that they are temporary so that clients won’t be scared of them.
  3. All hubs should be able to either link with government agencies that could provide financial and medical assistance to PLHIV. They should also link up with NGO’s that can provide these assitance for continuity of treatment. NGO’s supporting PLHIV should be courageous to file complaints against hubs that don’t fully utilize their OHAT packages so that clients can continue getting health care that they deserve.
  4. Counsellors, doctors and the support group should discuss to client and families the need to report death of a client to the hub, especially if it happened at home or other hospital. Make this a responsibility of the family to ensure that everything is properly documented.

The management of HIV and AIDS in the Philippines still faces a lot of challenges. If there is political will in the HIV AIDS Core Team (HACT), acknowledge these challenges and provide concrete solutions to these issues, clients won’t belong to the list of the hubs' lost to follow-up clients. The hardest challenge of the entire HIV program is to make sure that the key affected population is tested for HIV. Let us all make it a challenge too, to keep those who we have tested to stay in treatment no matter how hard it takes.





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