The transmission rate of HIV can be significantly reduced should infected patients on treatment adhere to their medication, a treatment specialist who has been working with patients for the last few months has said.
Community-based Treatment Specialist Rhonda Phill said that she adherence is an important issue and if patients take their medication as they should then the transmission rate “in Guyana would decline drastically.”
Phill, who is attached to the Institute of Human Virology (IHV) which is part of the AIDS Relief Consortium, works at the Bartica, St Joseph Mercy and Davis Memorial hospitals and she told Stabroek News in a recent interview that some 2019 patients are enrolled in the care and treatment programmes at the hospitals. Of that number 727 are on anti-retrovirals; 37 of them are children between the ages of 0-14.
“It is a problem. It is a problem because Guyanese they aren’t adhering and it is an issue and we could have issues with resistance…,” she said, while adding that patients just don’t decide not to take their medication and choose to die but rather there are other factors that contribute to their non-adherence.
“There are so many other factors in there, such as depression, such as stigma these are the real things that kill people…,” she said stating that they are working with patients and giving them communication skills as they attempt to disclose their status to family and friends.
Adolescents
According to Phill the adolescent patients are mostly the ones who are the most difficult to work with.
She told of a teenager who found out she was infected with HIV at birth at age 13 and who at one point just gave up on life and refused to take her medication.
“At first she was okay, her mom passed away and she was sad but she was okay. But the pill burden got to her. It is not just the HIV medication but the doctors had her on builders and vitamins and it became very tough for her. It just reminded her about her HIV situation and you know she was living with mom and happy and now she has to be living with someone else and was like ‘I just want to stop’ and she refused to take the medication,” Phill said.
Phill, who has been working in Guyana since last December, said she was invited by the counsellor to meet the young girl and every time child was counselled she cried “and you know she was depressed and sad.” But after meeting with the counsellors she is now back on her medication and doing fine.
The young girl never knew her mother was infected before she died and it was only after the death that it was decided that she should be tested.
“Unfortunately we have quite few adolescents in our programme who find out they are infected that way, you know they are 15 and 16 and they find out they are HIV positive and they did not get the transmission sexually and it is difficult for them,” she said.
It is hoped that in the near future the programme would create an adolescent support group for those persons infected at birth where they could meet each other and “vent their frustrations to each other and we would act as mediators and we want them to take ownership of the support that we have to provide so that they can support each other as they need each other.”
She said the adolescents infected birth feel that they are never going to have a productive life due to no fault of theirs. “They feel that they wouldn’t be able to get married and have children and stuff like that and it is hard for them.”
‘Red flag’
Importantly, Phill said that very soon the programme would be introducing a new aspect—the ‘Adherence red flag indicator’ —which would zero in on patients who are not adhering to certain behaviours such as no-risk behaviour that involves their sexual behaviour and also if they have problems with substance abuse or even those who are in domestic violence situations.
“When we see those things we know right away that okay, you are going to be a poor candidate for adhering to medication.
“So we are targeting those things early and those kinds of behaviours so that we know when you start taking medication you are likely to succeed,” she said.
“We are targeting the underlying issues that affect adherence in an effort to help the patients to remain on their medication.”
The monitoring of drug pick-up by patients from the pharmacies at the hospitals is also something that would also be soon on the cards. She explained that an automatic computer system would be introduced which would inform pharmacists when a patients is due to pick up their medication.
“If the patient doesn’t show up for their medication… then the pharmacist would inform the counsellor or someone else… It would be a very integrated approach…” Phill said.
However, she said it is not a large proportion of their patients who fail to adhere to their medication regime since they have very good counsellors who spend time with the patients to ensure that they are taking their medication as they should.
Meanwhile, there are a few patients who have fallen through the cracks and Phill said they plan to aggressively look for such patients as they would want to know if they are still being treated.
While some may have switched to other treatment sites, Phill said there are some who cannot be located.
“There are some that we just don’t have any idea where they are. Their phones are off [or] they have changed their number or something like that and those are the patients we want our home-based care workers to try to find. We have their addresses and we just have to try to find them because we need to know that they are not just staying home and not taking your medication.”
Stigma and
discrimination
And while at the Bartica Hospital there is no major problem with adherence, there is the serious problem of persons accessing treatment very late in their illness because of stigma and discrimination.
“Bartica is a small community and unfortunately a lot of that [stigma and discrimination] is filtered into the hospital system as well… So we have patients who are afraid if they go to the hospital those who see them would tell everyone.
“It is kind of a barrier to care and treatment as some of the patients in Bartica actually prefer to come and get their medication in Georgetown,” she said.
She said people are showing up at the Bartica Hospital when they are almost at “death’s door” for an HIV test because they were in complete denial.
The issue of stigma and discrimination is not as big at the Davis Memorial and St Joseph hospitals but some of the patients just don’t take their medication after they start feeling better.
“The counsellors are very good at stressing that you need to be on this for a very long time, don’t stop because you feel better. I always use the analogy such as you know a diabetic they are insulin dependent, they have to take their insulin and pills forever and if they skip taking their insulin they are going to get some sort of stimulus, sort of a reminder that they didn’t take their insulin… But with HIV patients they don’t get that reminder… .”
Phill said that it is expected that over time the patients may miss a dose from time to time but they explained to them that they should always inform the counsellors whenever that happens.
And Phill explained that she does not work with patients directly but rather she works with the counsellors and whenever she does see a patient it is in the presence of counsellor as it is important for the counsellors to understand what needs to be done to ensure patients adhere to taking their medication.
