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In Papua New Guinea, I have 5 drugs that are available for ART (ZDV, 3TC, NVP, EFV, TDF). If patients quit taking their medicines, or don't respond to the regimen they are on, I don't have much else to offer. We have no ability to do resistance testing, we can't even do a viral load, CD4 is all we have. We stress adherence and try and ensure that patients understand the importance of taking their ARTs before we initiate treatment. Despite this effort, patients still default - due to lack of transport, fights at their place so they can't travel, being too sick to take meds, just deciding they don't want to, being upset with their wife/husband and many more. We do counseling again and educate them on adherence as we start them again, but at times they still default again.

Any recommendations for better adherence or for options of when they do default, repeatedly with only limited medicines?

 
Anh Nguyen
Replied at 3:51 AM, 25 May 2013

Hi Erin,

We are working with the CDC (Center fo Disease Control US) and a big pharma company to design a very low cost subcutaneous injectable depot that would ensure 100% compliance for extended periods of time directed toward pre-exposure prophylaxis. As work progresses, we plan to branch off into actual treatment. To design the best drug(s) possible for the least developed countries, we really need your input and input from as many practitioners on the ground as possible. We have many humanitarian projects like this one where we donate our proprietary technology and bear much of the pre-clinical research costs which were designed by hands-on health practitioners. I would greatly appreciate drilling further into your needs by Skype or phone.

Christopher Hoffmann
Replied at 9:01 AM, 25 May 2013

1. Adherence is a very complex issue that depends on the health care system, the individual patient, and the community in which the patient resides. From the health care system having a unified and non-judgmental message from all cadres at a clinic and clinic outreach workers on the importance of adherence. Appropriate management of side effects and taking these seriously is important as well. On an individual patient level some amount of strengths-based counseling may help as well (to help guide a patient to develop solutions to barriers and optimize facilitators to adherence). Clearly the clinic needs to avoid stock-outs, long waits for pill refill, etc also. On the patient level there is education, possible cell phone reminders, assistance with transport, management of depression, substance abuse cessation (may also require community interventions). At the community level, structural change may be needed to address some of the issues that address - stigma, violence, conflict, poverty, etc.
2. Regimen choices in a patient that defaults treatment or has lapses in adherence: the meds you listed doesn't really allow for a second-line option. If there is resistance, the first mutations will be to either EFV or NVP which leaves you nothing but NRTIs. Thus if someone defaulted or was failing you could try AZT, 3TC, and either EFV or NVP & see how they do. Some won't have resistance, some will re-suppress despite a bit of resistance, and some will fail therapy. However without a protease inhibitor to turn to you really don't have any other options.

Drsunil kumar
Replied at 2:39 AM, 26 May 2013

take the help of social health activist for daily monitoring for the report
of adherence or drug compliance of the same area where patient is living.

Marijn de Bruin
Replied at 3:17 AM, 26 May 2013

Dear Erin,

That looks like a daunting set of challenges to face with limited resources. To take on step at a time, what comes to my mind - an option mentioned by Christoffer as well - is to capitalize on informal resources, I.e. have patients identify a treatment partner from their direct family or close friends. This person could assist when the patient is ill, has a lack of transportation, or provide supprot for managing treatment despite difficulties at home or motivational problems. There must be many clinicians on ghd that have extensive experience with this strategy in low resource settings. Maybe they could share their experiences?

Another/additinal strategy is to form small groups of patients from the same area (given they are ok with it), and have them meet with regular intervals to discuss challenges they face, adherence, count pills, etc. and that one of them goes to the clinic to collect the new pills for all of them (instead if all, saving travel costs and time lost for labour).. This strategy was previously applied (read the paper but forgot where) among patients doing well on treatment, to lower the burden of care for patients and clinic and since well functioning groups may offer support and commitment hard to realize by clinicians.

Hope some of the suggestions offered here are helpful/feasible..

Best wishes,
Marijn

Sandeep Saluja
Replied at 4:01 AM, 26 May 2013

Many patients do not wish to come to specialized HIV clinics.For one,they
are identified as such.Further,it is not easy to travel long distances.
In my opinion,the long term solution actually lies in ensuring that their
usual physician is capable of treating HIV.True,as of today not all
physicians are comfortable treating HIV.It may be useful therefore to
divert resources from providing free medicines to enhancing skills of
physicians in general.
One option in this direction may be to have a website where physicians can
discuss individual cases in confidence on one to one basis with HIV
specialists.

K. Rivet Amico, PhD
Replied at 6:09 AM, 26 May 2013

Coming in a bit late to this discussion, but I wanted to appreciate both the size of the challenge and the excellent responses posted to date. Adherence spans the spectrum of self-care, community, care delivery and the drug itself. Simplifying the structural factors can have dramatic impact – assistance with transport, community arrangements where one person picks up the drugs for several people in the same village, dispensing more than one-month of drug, and any assistance to improve meeting the basic needs of both those infected and affected by HIV in the community. Others will still struggle even with structural facilitators in place- stigma, distrust of drugs, denial/avoidance of HIV, and competition of self-care with needing to care for others pose significant challenges. Targeted discussion groups or interviews with defaulters for operational guidance can reveal issues not already on the radar at fairly low cost. Increasingly, poor retention in care is recognized as a major contributor to failure and the identification of effective strategies to promote return to care are sorely needed. Peer to peer outreach, community health worker models, scrutiny of clinic procedures that help or hinder returning to care after a gap, and afore mentioned strategies to ease burden of medication pick-up, are possibilities.

I am learning a great deal from insights in this post. Thank you, and let’s keep this conversation going!

Holly Wardlow
Replied at 5:57 PM, 26 May 2013

Hi Erin,
I'm an anthropologist currently doing research in Tari, Papua New Guinea
on the experience of people on ARVs, including issues of adherence,
stigma, etc. I'd love to hear more about your experiences and
frustrations. I don't have an answer to your question, but I'd like to be
in touch. My email is




___________________________
Holly Wardlow, Ph.D., MPH
Associate Professor
Undergraduate Coordinator
Dept. of Anthropology
University of Toronto
Anthropology Building
19 Russell Street
Toronto, ON M5S 2S2
Canada

Phone: (416) 978-2199

Wayward Women: Sexuality and Agency in a New Guinea Society
University of California Press, 2006
http://www.ucpress.edu/books/pages/10451.html

The Secret: Love, Marriage, and HIV
Vanderbilt University Press, in press
http://www.vanderbiltuniversitypress.com/index.php/books/359/the-secret

Modern Loves: The Anthropology of Romantic Courtship and Companionate
Marriage
University of Michigan Press, 2006
http://www.press.umich.edu/titleDetailDesc.do?id=170440

The Making of Global and Local Modernities in Melanesia: Humiliation,
Transformation and t
he Nature of Cultural Change
Ashgate, 2005
http://www.ashgate.com/default.aspx?page=637&calcTitle=1&title_id=5116&editio...

saar baert
Replied at 4:53 AM, 27 May 2013

Hi,

here is the article Marijn is mentioning on MSF's experiences with community ART groups in Mozambique. Small patient groups take turns in drug pick-ups at the clinic and provide peer adherence support at community level. The model is further described in the article and we are currently adapting the community ART groups model to other settings.

Cheers,
Saar

Attached resource:

Francoise NYWAGI LOUIS
Replied at 5:12 AM, 27 May 2013

Dear Erin
Having provided TA for MSF, I had to discuss this question quite often (in these contexts, shall we give ART or not); my opinion is that WE SHOULD (first as a basic human right and also because of the Hippocratric oath, that says we have an obligation to use all the mans we have in hand to care for the patients without having an obligation of food outcome). In a context with a low prevalence of HIV, the right of the communities to be protected should not apply (public health act/ law).
So the first thing to consider is: why is the patients defaulting?
- Long distance: SPACE the visits at the clinics, (pay for the transport fees); do they have a treatment buddy that helps them with taking their pills? the treatment buddy could be educated on HIV/ART and even collects the drugs for the others around the villages;sis there any community health workers who could be trained and deliver the drugs to the patients; any person who travels regularly (transport/ taxi/bus driver) to where your clinic is and could collect the medication for the patients; in northern Mozambique, Tom Decroo, set up a system that works very well: one member of a support group goes and collect the drugs for the others; in this case education on adherence for whoever the carrier/carer is s/he should be fully educated on HIV/ART adherence and side effects; if the patients cannot come to us, we should find a system to have us get to them!
- fight at home: do we know the reason? alcohol and drug abuse, GBV; this has to be addressed the clinic visits and by the CHWs.

On the technical side, and given your drug options:
- One interruption ( even with a NVP containing regimen- well in this case the next steps would be suboptimal) is not a big deal; it is often recommended to re- start with the same regimen;
- In case there are many interruptions, and given that basically there is no fully effective second line, my opinion is to carry on with the same regimen ( with a failing regimen , the patients have less OIs than with no regimen al all); do we have an insight on the level of Hepatitis B in the region? if the prevalence is high TDF and 3TC should be recommended as the backbone for the regimen, and not interrupted (above all 3TC) as any treatment interruption can create a flare of HBV. For me in this case it is more 'scary 'than' ART for HIV itself.
At the time of this reply, I had not read Rivet's comments yet and there are lots of common comments.
Keep it up and get back to us with more questions
Francoise

Erin Meier
Replied at 6:56 AM, 27 May 2013

Thanks everyone for your suggestions and comments, I don't know if I can address all the other questions that you guys have posed back to me, but I will try.

The fights at home are not usually family related, but tribal - among the people of the villages and enemy villages. Sometimes it requires whole villages/families to hide and traveling isn't safe as they may be targeted, so there is no easy solution to that one.

I like the idea of someone coming and collecting medicines for a number of others. I am a family practice doctor, who is in charge of HIV care at our mission hospital. There are some smaller clinics around us who do HIV care, or give out meds, per the protocol from the government, but any questions come to me, none of these clinics have a doctor at them. Our workers live on our mission station, so there isn't anyone traveling in/out that can take meds. However, our hospital serves an area of 500,000 and we have folks from all around us coming and going each day, so finding someone who would be willing to travel once for a number, might be something we can look into. We do have a patient supporter - family member who helps them take their meds and brings them to appts and all, but patients have still lied to them and us, and they sometimes get sick or aren't able to be there all the time. We also have some expert patients - who have HIV themselves and who work with new patients to understand the adherence message and work with them, educating them about the disease.

We do have a high incidence of HBV. I would guess at least 30% if not more of our HIV pts are Hep B positive. We see a lot of patients, everyday, that we diagnose with hepatomas and chronic liver disease (presumably from Hep B) who don't have HIV, it is endemic here.

my email -

Moses Bateganya
Replied at 9:41 AM, 27 May 2013

Thank you all for a great discussion on adherence. The scenario shared is where a few countries were 10 or more years ago when we were reusing the same combinations of drugs in patients failing ART. This indeed saves patients but also contributes to the development of resistance in general in the country. Whoever is funding first line should consider investing in second line at the same time. Countries with low prevalence face unique problems for example home visits, DOT HAART may not appear cost effective. The question I have is, why isn't there second line treatment in PNG?

Moses

Blessings Banda
Replied at 3:46 AM, 28 May 2013

Hello Erin,
I will share how we have managed to decrease default rate in our clinics.

I work as HIV and Nutrition Manager for Partners In Health sister organization in Neno, Malawi Abwenzi Pa Za Umoyo. We had a very same problem of high default rates and the sad story was that the higher proportion was that of Pregnant Women. When PIH came to Neno District, Malawi we asked the community to identify people to be Village Health Workers who have responsibilities to accompany a patient to any clinical appointment, to visit ART Patients everyday and Pre-ART Patients once a week. This has helped the Patients much as it has build a great link and bonding between them and the clinic. Also we know every patient needs an advocate, the system has helped a lot to make sure patients needs at community level are not very far form them. The village Health Workers however are given a little stipend as something to encourage them.

Apart from that, with limited staff and resources we have managed to set up mobile clinics for ART in different places so that we bring this care very close to the people. At first, patients used to walk the whole day to prepare for the following mornings clinic. Now with the mobile clinics, patients are no longer traveling long to access the Health Services. We are however planning more outreach clinics in hard to reach areas. This is helping our clinic to have less defaulters.

We also have a very comprehensive community outreach education program where we provide education to patients and community members on adherence issues, prevention, effects of defaulting, the role of communities in HIV issues and more. With this, patients and community members are empowered to own their clinics and making sure they are using the services provided to them effectively.

I am very open to discuss with you in detail. Am on .

Thanks

Blessings, Malawi

Joseph Abilla
Replied at 5:09 PM, 28 May 2013

I need your advice, Recently at an HIV/AIDS clinic in Masaka Uganda, patients with Human Immunodeficiency Virus (HIV) who presented very low CD4 counts of 27 per cubic millimetre and below, and treated with severe opportunistic diseases such as presumed cerebral toxoplasmosis were suspected to pass exhibited nagging severe headache, dizziness to medical staff who presented neurological symptoms confirmed by the CT scan and LPs with unexplained NSAID unresponsive headaches as reported among 8 staffs consisting of 2 lab personnel,2 clinicians,3 volunteers under Test & Treat (T&T) project, and one support staff, who all reacted to the toxoplasma test and were advised to take potent Azithromcin, that works in the management of toxoplasma ( New England Journal of Medicine) downloaded from nejm.org September 18th 2012.
Joseph Abilla Ogwang
Human Resource Manager
AHF-Uganda Cares

Moses Bateganya
Replied at 8:14 PM, 28 May 2013

Joseph
Please ask a HCW to rephrase your question. The way it is written is unclear and confusing. Moses

Francoise NYWAGI LOUIS
Replied at 3:42 AM, 29 May 2013

Hi Joseph, your patient presents with 1 confirmed (gold standard if India ink was used) CM and a suspicion of Toxo.
Persistent headaches in CM are precede by intermittent headaches; I guess you treated the CM; if ART have been initiated less than 4 weeks after initiation of CM treatment, your patient might have an IRIS or an accumulation of dead crypto on the CSF 'stream' hence the headaches; and NSAID even steroids do not help; the patient should be tapped every day; this is the only way to decrease his headaches.
I am not sure about the toxo; the anti toxo antibodies are useless; headaches are much less violent, patients present with pyrexia, and as a CT scan has been performed, a cerebral abscess should be seen.
As a human resource manager, you should not know the HIV status of the staff unless they proactively disclosed it to you.
Like Moses I am a bit confused with the kind of response you expect from us; apart from headache and dizziness, what is the staff suffering from?
Neither toxo, nor CM are contagious as in the case of toxo, it is a reactivation of an existing lesion and dissemination to the brain, and CM is really an OI, meaning that it takes the opportunity of a weak immune system to multiply and become a disease.
Meningitis should be checked as a matter of emergency if people are experiencing pyrexia as well
We also need to think about environmental exposure.
I hope it helps a bit
Francoise

Joseph Abilla
Replied at 10:22 AM, 29 May 2013

Hello Moses & Francoise,
Thank you for your advice, I probably need to rephrase my question.
The Clinic offers treatment and care to PLWHIV/AIDS, and the staffs are not HIV positive as insinuated by Francoise. However the staff complained of symptoms like headache and dizziness, which they suspected to be an occupational hazard from the exposure of treating and caring for HIV patients. The scans where done and TOXO confirmed, which is why I asked for ADVICE from experts like you.
Otherwise I am merely concerned on the impact of such hazards on the future of HIV/AIDS caregivers.
Regards,
Joseph

Joseph Abilla
Replied at 10:25 AM, 29 May 2013

Hello Moses & Francoise,
Thank you for your advice, I probably need to rephrase my question.
The Clinic offers treatment and care to PLWHIV/AIDS, and the staffs are not HIV positive as insinuated by Francoise. However the staff complained of symptoms like headache and dizziness, which they suspected to be an occupational hazard from the exposure of treating and caring for HIV patients. The scans where done and TOXO confirmed, which is why I asked for ADVICE from experts like you.
Otherwise I am merely concerned on the impact of such hazards on the future of HIV/AIDS caregivers.
Regards,
Joseph

Christopher Hoffmann
Replied at 10:39 AM, 29 May 2013

Joseph,
The main infection occupational hazards of caring for HIV+ are HIV infection from a needle stick of a hollow-bore needle or other penetrating injury leading to direct inoculation of fluids of an HIV+ patient into the health care worker. Thus using good technique with sharps and having secure sharps disposal is essential. The other major infection risk is TB which is airborne. Good infection control practices including assessing all patients with cough and having appropriate ventilation and personal protection (N95 masks depending on the situation) is appropriate. Toxoplasma and Cryptococcus are environmental organisms that are shed in cat (toxo) and bird (crypto) feces. Toxo is a common infection with increased prevalence of infection among individuals who eat raw meat and have lots of cat exposure. Antibody positivity to toxo is as high as 50% in some communities, however, few of those people have disease. Lots of problems can cause headaches and dizziness (most are not infections). It is unlikely that the headaches and dizziness have arisen as a result of caring for people living with HIV.

Francoise NYWAGI LOUIS
Replied at 11:09 AM, 29 May 2013

Hi Joseph, Thanks for this; I guess we do not know whether staff members are HIV+ or not.
How was the diagnosis of toxo made? Serology does not help in case of cerebral toxoplasmosis as it is a reactivation, and as I explained, people complain of headache and have pyrexia, vomiting etc..
People get toxo NOT FROM A PATIENT WITH HIV AND DIAGNOSED WITH TOXO.
So there is no risk to have health staff contaminated with toxo from a HIV patient.
Toxo is only contracted through ingestion of food contaminated with animal feces, only.
Unlike cerebral toxoplasmosis , a reactivation of a former primary infection with the parasite, diagnosed with history, clinical exam, CT scan/ MRI, the first contact with the parasite can result either in no symptom at all ( fetuses from pregnant women may get micro encephaly though), or a bunch of symptoms usually presenting as extreme fatigue, moderate pyrexia, pharyngitis, rash at times, but also lymph node enlargement (neck mainly);
then the serology helps. therefore if antibodies have been found in so many staff I would not (not at all!) incriminate HIV+ patients but the FOOD that one day might have been improperly washes and eaten raw (lettuce, etc..). A person who contracted toxo has antibodies and they stay for the rest of his/her life but it is not a marker of reactivation.
Maybe also, toxo for whatever reason is endemic in the area; it would be useful to test a sample of staff for anti-toxo antibodies; you might find people with no symptom and with those antibodies; anyway if this is the case an environmental investigation is needed.
In summary:
1. the symptoms experienced by the staff do not originate from the patient with brain toxoplasmosis;
2. There is NO human to human transmission of brain toxo;
3. you may explain how toxo has been diagnosed in your staff;
3. If quite an amount of your staff is found with toxo, there might be 2 reasons if they are symptomatic:
a) They have eaten the same raw food, from improperly washed food contaminated with animal feces: an inquiry (although difficult) is advised
b) or toxo is for whatever reason endemic in the area where the staff works: then it would be good to test a sample of asymptomatic staff/ community for antitoxo antibodies; if they are also found in those individuals, there is an environmental source somewhere

As I explain in the previous mail, let's not forget that in the staff headaches and dizziness might be due to other environmental reasons, and their anti toxo antibodies are positive because they had been exposed before to the parasite and never exhibit any symptom at that time

I hope this help; and please, you may have to explain this to your staff (do you have a doctor around?), so that they do not fear treating people with HIV. Thanks. Please get back to us with what you have found. Francoise

Joseph Abilla
Replied at 11:37 AM, 29 May 2013

Hello Francoise, very clear now after your elaborate explanation, yes we have Doctors who will further explain to the affected staff.
Thank you very much
Joseph

Asfawesen Gebreyohannes Woldegiorgis
Replied at 1:21 AM, 30 May 2013

Dear Joseph.
Your staff may experience dizziness and headach from dozons of causes including fatigue and overwork. The possibility of transmission of Toxo from patients to careproviders is not known to the medical community simply because it does not have scientific basis. If your staff have for sure CT proved brain lesions suggesting toxo then they should be investigated for immunocompromising diseases including HIV.

Asfawesen Gebreyohannes Woldegiorgis
Replied at 8:06 AM, 30 May 2013

Adehrence to treatment in HIV and other chronic illnesses has deterimental consequenses not only to the success of the programs but also to individual treatment outcomes. Adherence is a multi-factorial phenomenon which is affected by the interaction of sets of factors related to
1. Health system which includes provider competence and treatment setup
2. social and economic factors
3. Patient related factors
4. Co-morbid conditions
5. Regimen/drug related factors
Adressing all these issues may be very difficult but identifying the presence/absence of the factors impacting adehrence will be essential. One of the great challenges to ART programs in developing countries is the attitude and competence of providers and the entrire health care delivery system is oriented more towards the provision of acute care like treating malaria/ pneumonia etc. ART program requires the orientation of the health care delivery system towards chronic care model which requires empowering patients for self-care and integrating all players of health care delivery. Establishing this kind of care model is the one which is challenging to ensure adherence to treatment and care.
Therefore building the competence of providers to develop skills and competence in providing chronic care service which is one way of dissolving many of the barriers to adherence to care and treatment is essential. It should be doable.
Designing and delivering community based interventions to improve adherence are other cost effective mechanisms which may help to circumvent weaknesess related to the health system and lack of transportation.
Conditions like political unstability or calamities affecting adherence to care and treatment are beyond the scope of the providers and facilities.

Ermane G Robin
Replied at 7:21 PM, 30 May 2013

in response to your problem did you try multiscript strategy.
I would appreciate comments from any member who experimented with Multiscript as a strategy oy otherwise.

Ermane G Robin
Replied at 7:32 PM, 30 May 2013

I wholeheartedly agree and adviose to implement this strategy. Thi is what we call a " compagnon" an acompanying adult in Haiti. It's a volunteer task and we have great success, I would say over 75%of HIV + pts accept; however because of fear of stigmatization we are still loosing pts who refused to let anybody knows about their sero + status.but it's better than nothing

Pamela Marks
Replied at 3:29 PM, 31 May 2013

Hi Erin,
I worked in a similar sitatuation in Guyana when PEPFAR first started. We had first line therapy and also a PI based second line regimen, but no viral load and only CD4 testing. I worked in 2 very different communities, one of which was a "transit" are to the country's interior and mining community. Some of our patients had to travel into the clinic via speedboat which at times could be costly. Fortunately, staff at the clinic had to do outreach visits to the various communities in the river and were able to check in on some patients and bring the ARVs to them. But for patients that were not reachable it was a challenge.
As part of our treatment preparation and adherence, we asked patients to disclose their status and bring someone that could help support them for their appointments. However, given that we had issues with stigma etc, we also worked with PLHIV organizations and other groups that were doing home based care and paired patients up with someone that could check in with them, remind them of appointments etc. Another thing we'd do as part of our patient education was to explain to them in simple terms what HIV is and how it affects their body, and that the ARVs counter these effects. Our counselors would also ask the patients questions to assess their understanding. Once the counselor was assured that the patient understood, they were started on ARVs.
I do also like Marjin's recommendation of finding patients that live in a similar geographical area and asking them to form a group to support one another. Something like this was done in Mozambique, where each month or so, one member would go to the clinic and pick up ARVs for the other members of the group. This was done because of financial issues and patients not being able to get to appointments.
I am attaching the article about the Treatment groups in Mozambique for your reference in case it may be of help. Apologies if already have this.
Regards,
Pamela

Attached resource:

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