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Vilai Chinveschakitvanich Drug Dependence Research Center WHOCCR,

Pattern of Nonrational Use of Antiretroviral Drug Treatment and Use of Personalized Treatment Regimens to Optimize Compliance. Vilai Chinveschakitvanich Drug Dependence Research Center WHOCCR, Institute of Health Research, Chulalongkorn University,

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Vilai Chinveschakitvanich Drug Dependence Research Center WHOCCR,

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  1. Pattern of Nonrational Use of Antiretroviral Drug Treatment and Use of Personalized Treatment Regimens to Optimize Compliance Vilai Chinveschakitvanich Drug Dependence Research Center WHOCCR, Institute of Health Research, Chulalongkorn University, Bangkok, Thailand. E-mail: vilai.c@chula.ac.th

  2. Title: Pattern of Nonrational Use of Antiretroviral Drug Treatment and Use of Personalized Treatment Regimens to Optimize Compliance Authors: Vilai Chinveschakitvanich Abstract: • Problem Statement: Following the emergence of the HIV/AIDS epidemic in Thailand in the 1990s, antiretroviral (ARV) drugs were consistently promoted as the best treatment option. Blind belief in the lifesaving efficacy of ARVs by people living with HIV/AIDS (PLWHAs) led to extensive nonrational use of ARVs despite the high cost of the drugs. In view of the current policy of implementing a large subsidy for ARV treatment, there is an immediate need to seek an appropriate approach to encourage compliance with rational use. • Objectives: To demonstrate the noncompliance pattern of ARV treatment in order to more efficiently implement personalized ARV treatment regimens for optimal compliance. • Design: Longitudinal, qualitative, in-depth study. • Setting and Study Population: A cohort of 12 PLWHAs receiving ARV treatment were recruited and have been followed since 2000. Informal relationships were developed with counseling companions and health care facilitators. Information and data were gathered by observation and by informal and formal interviews. Data gathered included social and sexual history, current lifestyle, prospective lifestyle, HIV exposure, health problems, self-care, and treatment. • Results: All patients clearly understood the need to take the ARVs for the rest of their lives, the costs entailed, the probability that complications would develop, and the daily treatment regimen. However, not a single patient was able to adhere to the treatment regimen over the study period of three years. A few major constraints led to noncompliance, including physical discomfort, such as fatigue, nausea, and dizziness, following each dose. Another constraint was patients’ forgetting to carry the drugs along during the day, which sometimes caused patients to take the ARVs of other PLWHAs. Daily life activities and/or fear of social rejection also led to skipped doses and regimen modification. One person discontinued taking ARVs because each dose reminded him strongly of his HIV status and created stress. After he stopped taking the drugs, he reported relief from stress and was able to forget his HIV status. Many reasons for noncompliance could possibly be dealt with through good understanding of the constraints. Alternative regimens could be worked out systematically without deleterious outcome. Effective two way communication is an essential component of case management. • Conclusions: Noncompliance to the strict ARV regimen is common for many reasons related to drug side effects and to specific daily lifestyle. The negative consequences are most likely preventable with additional attention to each PLWHA’s needs and with a collaborative effort to find the most suitable drug regimen for each PLWHA. Drug Dependence Research Center WHOCCR, Institude of Health Research, Chulalongkorn University

  3. Background Antiretroviral (ARV) drugs have been consistently promoted as the best treatment option, life saving efficacy. Most patients clearly understood that a good result derived from strictly compliance to the drug prescription. However, what the ARV users found difficult were that its lifetime taken, its costs entailed, the probability of developing complications and the daily treatment regimen. These were the influential factors for their discontinuing the treatment. Patients tried to find other practical ways to ensure the adherence to antiretroviral therapy. Drug Dependence Research Center WHOCCR, Institude of Health Research, Chulalongkorn University

  4. Method: This study was a longitudinal, in-depth interview of 77 PLWHAs. Some attended to have HIV therapy at the hospitals and some were the members of HIV-Self Help Group. Data were gathered from current and prospective lifestyle, HIV exposure, health problems and treatment. Objectives:To demonstrate the noncompliance pattern of ARV treatment in order to more efficiently implement personalized ARV treatment regimens for optimal compliance. Drug Dependence Research Center WHOCCR, Institude of Health Research, Chulalongkorn University

  5. PLWHAs’ Characteristics Drug Dependence Research Center WHOCCR, Institude of Health Research, Chulalongkorn University

  6. Infected time Non – ARVs On - ARVs Paid Free Average infected time (yrs) Range 3.8 3.2 (1-12) 5.7 2.9 (1-10) 5.7 3.7 (1-16)    Total 15 17 45 PLWHAs’ Characteristics Drug Dependence Research Center WHOCCR, Institude of Health Research, Chulalongkorn University

  7. Occupation Classified by ARV-Use 50 46 . 7 45 Non ARV ( N = 15 ) 40 On ARVs - Paid ( N = 17 ) 35 . 3 35.3 35 On ARVs - Free ( N = 45 ) 30 26 . 7 26 . 7 % 25 20 20 20 Drug Dependence Research Center WHOCCR, Institude of Health Research, Chulalongkorn University 15 . 6 15 11 . 8 11 . 1 11 . 1 10 6 . 7 6 . 7 6 . 7 5 . 9 5 . 9 5 . 9 5 2 . 2 0 0 0 0 * owner Business Employee Civil servant Aqriculturer Volunteer Unemployed business workers * HIV-Self Help Group Volunteer

  8. Income Classified by ARV-Use Drug Dependence Research Center WHOCCR, Institude of Health Research, Chulalongkorn University

  9. Making Decision in Taking ARVs Drug Dependence Research Center WHOCCR, Institude of Health Research, Chulalongkorn University

  10. Treatment: Sep 2003-present : Saquinavir, Ritronavir, Combid “I started using ARVs even though I was healthy and didn’t have any HIV-related symptom because I couldn’t resist my friend persistence”. Case #1 • female, 29 yrs old • infected for 4 yrs. Treatment: Aug 2002-present : AZT, 3TC, EFV “I was very glad to have the chance to take the ARV regimen at no cost. The doctor said it was an expensive one. I have to comply with thetreatment as long as I can”. Case #2 • male, 30 yrs old • infected for 2 yrs. Nonrational Use: Reasons of starting ARV use Drug Dependence Research Center WHOCCR, Institude of Health Research, Chulalongkorn University

  11. Treatment: Aug 1999-Mar 2002 : d4T, ddI “I stopped taking the first regimen because the trial ended. If I want to continue the treatment I will have to pay by myself. I couldn’t afford it”. Treatment: Apr 2003-present : GPO-vir “For enrolling the ATC program, I had to lie that I never take any ARVs”. “I strictly adhered to it, I’m afraid of drug resistance”. Case #3 •male, 38 yrs old • infected for 7 yrs. Treatment: end of 2000-end of 2001 : 3TC, d4T, EFV “I couldn’t continue the ARV treatment after the trial ended because I had no enough money to pay”. Case #4 • female, 40 yrs old • infected for 8 yrs. Nonrational Use: Reasons of stopping Drug use - Financial Problem

  12. Case #5• male, 35 yrs old • infected for 3 yrs. Treatment: Oct 2001-Apr 2002 : d4T, ddI, EFV “I did not feel well whenever I had to take ddI because of its smell, taste and adverse effect-diarrhoea. Therefore, some days I took the pills once instead of twice a day. EFV also caused me a headache so I had to skip 3-4 times per month”. “Finally, I quitted the regimen because of its adverse effects and I changed the hospital”. Treatment: Apr 2002-Apr 2003 : 3TC, d4T, NVP “The cost was lower and easier to take”. “Anyway, I quit again as I got lipodystrophy, my face became thinner”. Treatment: May 2003-Oct 2003 : Combid, NVP “I went back to take ARVs again because my CD4 had fallen and I felt worse”. Treatment: Oct 2003-present : Saquinavir, Ritronavir, 3TC “The doctor told me to change the regimen because I got anemia and low blood platelet”. Nonrational Use: Reasons of stopping Drug use - Adverse Effects Drug Dependence Research Center WHOCCR, Institude of Health Research, Chulalongkorn University

  13. Case #6•male, 38 yrs old • infected for 6 yrs. Treatment: end of 1998- Jan 2001 : AZT, ddI “The doctor told me that I should take ARVs otherwise I could be worse. I believed him and followed his instruction. But from my experience, I learn that exercise made me healthier than taking ARVs. I was still sick. I had fever and often got a cold. The main factor that made me discontinue taking ARVs was that each dose reminded me strongly of my HIV status and created stress”. “You know after I stopped taking drugs I felt relieved from stress and able to forget my HIV status”. Nonrational Use: Reasons of stopping Drug use - A constant Remind Drug Dependence Research Center WHOCCR, Institude of Health Research, Chulalongkorn University

  14. Case #7• male, 37 yrs old • infected for 10 yrs. Treatment: Feb 1996- Oct 1996 : AZT, ddI Oct 1996- present : AZT, ddI, Ritronavir “When I knew there is a new strong ARV (PI), I wanted to take it although it is very expensive. I believe it can save my life”. “I skip every 3-4 days a dose otherwise I can’t work due to its adverse effects; i.e. blurred vision; numbness on lip, tongue, fingers, feet; dizziness and fatigue. Then I start the next dose sooner. This practice make me can comply to the treatment until present”. Nonrational Use: Adjusted themselves for Adherence Drug Dependence Research Center WHOCCR, Institude of Health Research, Chulalongkorn University

  15. Case #7• male, 37 yrs old • infected for 10 yrs. Treatment: Feb 1996- Oct 1996 : AZT, ddI Oct 1996- present : AZT, ddI, Ritronavir “When I knew there is a new strong ARV (PI), I wanted to take it although it is very expensive. I believe it can save my life”. “I skip every 3-4 days a dose otherwise I can’t work due to its adverse effects; i.e. blurred vision; numbness on lip, tongue, fingers, feet; dizziness and fatigue. Then I start the next dose sooner. This practice make me can comply to the treatment until present”. Nonrational Use: Adjusted themselves for Adherence Drug Dependence Research Center WHOCCR, Institude of Health Research, Chulalongkorn University

  16. Conclusions:Noncompliance to the strict ARV regimen is common for many reasons related to drug side effects and to specific daily lifestyle. The negative consequences are most likely preventable with additional attention to each PLWHA’s needs and with a collaborative effort to find the most suitable drug regimen for each PLWHA. Drug Dependence Research Center WHOCCR, Institude of Health Research, Chulalongkorn University

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