Every day Mary (not her real name) is faced with the struggle of getting her young daughter to take her anti-retroviral medication and then wait for the side effects which can vary from week to week.
Mary herself is struggling with side effects from her HIV/AIDS treatment regimen – as she was speaking to Sunday Stabroek she was dealing with swollen feet – but she is more worried about her daughter. She would prefer her daughter to be given a liquid suspension, instead of the one tablet in the morning and two halves in the evening.
“It is very hard for me to watch her because right now she don’t want to eat and I can’t afford to buy the vitamins she needs,” Mary told the Sunday Stabroek.
And it is not the only problem that Mary, who along with her daughter has been on HIV/AIDS treatment for the past four years, is experiencing in Region six where she attends one of the hospitals to access medication.
Along with others this newspaper spoke to, she prays for the day when health workers are more humane towards persons living with HIV and AIDS, and the system is more “friendly” towards them.
Last week marked the launch of the XIX International AIDS Conference in Washington, DC, bringing together advocates, researchers, and leaders to discuss the state of HIV/AIDS around the world and the next steps that need to be taken in the global fight.
While Guyana might have had a positive report to make at the recently concluded XIX International AIDS Conference that was held between July 22 and 27 because it is still one of the few countries which provide free HIV treatment, the National Aids Committee (NAC) is also reporting that infected persons continue to face impediments in accessing treatment, care and support.
In a recent press release the NAC said that it had met with 24 persons living with HIV/AIDS from Regions 1, 2, 3, 4, 5, 6, 7 and 10 to get feedback on the blockages in obtaining treatment, care and support. According to the release most emphasised that the quality of treatment and care is better at the main treatment centre in Georgetown than in other areas.
“They expressed concern over the lack of information as to national plans to ensure first-line and second-line HIV medication be sustained in the years ahead for the 3000+ persons on treatment as well as new patients,” NAC said in the release.
It noted that most infected persons attached to the government clinics or the private hospital clinics supported by the Ministry of Health, particularly outside Region 4, are either unemployed or are low-income earners, and they are anxious about unconfirmed reports that they may have to purchase drugs in the future.
Meanwhile, Mary wants suspension to be given to children as she feels they would then be better able to take the medication as prescribed. NAC too in its release referred to the fact that though there are a number of active Prevention of Mother To Child Transmission programmes with good networking among the maternal and child health, family health clinics and NGOs, participants had expressed concern over the absence of oral suspension medication for children whose tolerance level is much lower when taking medication in tablet form.
“There are reports also of children and teenagers already being placed on second-line treatment. To what extent this is due to intolerance of the form of medication or non-adherence for want of family vigilance and support needs to be urgently addressed,” NAC said.
However, worldwide HIV oral medication for children is not advised, and according to Pediatrics website, which is an official peer-reviewed journal of the American Academy of Pediatrics, liquid drug formulations often require special storage such as refrigeration. It noted that liquid formulations may contain excipients (additives to maintain the drug in solution) that could be harmful to children. Also another problem with liquid formulations is the taste. When liquid formulations are developed, the taste is often unpleasant.
Public assistance
When her daughter was first diagnosed with the infection four years ago Mary said she received public assistance for her for three-and-a-half years, but this suddenly stopped, and this has placed a burden on her. Even though she works, Mary said she finds it difficult sometimes to purchase vitamins for her daughter and to afford “a proper diet for me and she because we have to eat good to keep up we immune system.”
NAC in its release said that public assistance support operates in a few regions, either organized directly by the social worker attached to the clinic or via the Ministry of Human Services.
“Criteria for accessing such support is not adequately developed, with participants claiming that PLWHA [People Living With HIV/AIDS] CD4 count level has to be below 250 in some regions while in another region below 300. PLWHA in interior and riverain communities with no access to such testing facilities cannot access this form of support. Some participants claimed that public assistance vouchers continue to carry an additional stamp to the general one presented at post offices, thereby identifying publicly persons as PLWHA,” NAC said.
And Mary also feels that there is need for specialist doctors to deal with persons living with HIV and AIDS, instead of the young inexperienced ones whom they are forced to deal with at times.
“With all the money deh say going into the HIV fight I think they should pay specialist doctors to come to Guyana and help us out here; that is what we need,” she said.
Another person Sunday Stabroek spoke to, who accesses treatment in both Regions 3 and 4 also called for specialist doctors explaining that it is difficult for persons who may have other illnesses or are suffering side effects to be referred to other doctors.
“I tell everyone I am HIV infected; it does not bother me, but for some people when they get referred and they have to go to another health facility and people look at the referral, right away they know the person HIV infected and not everyone like that,” the man said.
He said the doctor should be able to deal with most of the complaints patients have instead of referring them, and for this reason he looks out for many persons he has met over the years and tries to help them access better treatment.
“For me I am okay, but I have friends who are suffering a lot, especially those in the hinterland who have a lot of problems accessing treatment. The treatment is so geared that it should meet you at your clinic site, but it is not always there for them to get it,” the man said.
He told this newspaper that while he keeps his clinic dates, in the past they only had to visit every three months, but now it is every month and some persons find this difficult.
“I go to clinic based on clinic dates, on a two regimen; presently in Region 3 it is a one-month supply.
“I does cope with things… but some people may not get time off from their jobs,” he said.
According to NAC it was reported that Skeldon is without an HIV specialist doctor and over the last year patients would see a different doctor on almost every visit, with reports that some of the young doctors are not sufficiently qualified in respect of administering treatment. They are also overwhelmed and sometimes mix up clinic cards. In addition, there is little time given to educating patients about the medication, while in Essequibo, a pattern of referrals by nurses is emerging, since there is no specific schedule in place for a doctor to see infected persons.
The release went on to say that concerns had also been expressed about the sustainability of medication as well as the testing of the viral load and CD4 count, with the months of July and August being the time when “hiccups” show up in the system with either the late delivery of medication or a shortage of reagents for testing.
One person told this newspaper that people who are not properly educated about their treatment create problems. It was pointed out that sometimes they were told to return to the doctor in another three months, and they would go to the pharmacy and get a month’s supply of medication, but it was not explained to them that they had to return the following month to fill another prescription.
“So when they go back to the doctor he would quarrel with them and they are put down as defaulters and are taken off the treatment and counselled before being placed on it again, and it is not good for their health,” the Sunday Stabroek was told.
Hampers
Meantime, another patient informed Sunday Stabroek that in Region 2 the hampers are split up and persons are given a small amount of some items in an effort to ensure that everyone gets something.
“The social worker say she can’t give some and don’t give others, but when she give you it so little bit that it not making sense,” the patient said.
But that problem might have already been addressed as the patient went on to say that a recent decision was taken that hampers would be given based on the patients’ CD4 count.
The patient said she gets no side effects from her medication, but she is concerned that her daughter faces stigma and discrimination issues at school.
NAC in its release said that some issues raised by participants under prevention, stigma and discrimination included one about proper condom use, which they said needs to be emphasized regularly and more demands made for regular procurement, distribution and tracking of use of both male and female condoms.
At least one person reported being pregnant three times after being infected, even though they had used condoms.
“Attention was drawn to the fact that for many months during last year and earlier in the year all regions were out of stock of condoms. There is still inadequate awareness and training as to the use of female condoms and its prevention in mother-to-child transmission,” NAC said.
And in Region 10 it was reported that that a reduced supply of medication has seen patients being forced to visit the clinic every month and this has been very difficult for some.
“When you go there is the entire day you have to spend, and this is very difficult for me and others; I can’t ask for time off every month,” one person told this newspaper.
And now patients have to sign for the medication as there has been a report that some people are selling the medication. Being required to sign, the person said, further identifies them as HIV patients as other people do not sign for medication.
The attitude of nurses was also complained about and the patient told this newspaper that at times they are ignored “and push around by the nurses.”
“It is so ugly, and then they change so often and they come with different attitude, some of them are very loving but others are snobbish,” the patient said.
According to NAC, access to HIV treatment remains unavailable or irregular in a number of interior regions where only one doctor makes visits, generally on a quarterly basis.
