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Facultatea de Sociologie i Asisten Social Universitatea din Bucureti The challenges of care and support for a generation of nosocomially infected young adults from Romania living with HIV Florin Lazr PhD, Lecturer Doru Buzducea PhD, Assoc. prof. University of Bucharest, Faculty of Sociology and Social Work

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10,000 children nosocomially (use of unsafe syringes and blood products) infected (1988- 1992, 50% of AIDS pediatric in Europe until 2000) - about 3,000 died and other 7,000 have survived for over 22 years with HIV. 1996-1998 ART Average survival ratio of people with AIDS increased from 31 months in 1996 to 82 months in 2010 Introduction (1)

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overprotection from the family stigma, and discrimination in education health care focus Developing social services

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a peak increase of those availing of social entitlements ( see table ), 2004-2010 Global Fund projects implemented a higher proportion receiving cash benefits (a food allowance) which ensures greater confidentiality. *requires social inquiry/registration with local authorities **paid to bank account, based on medical certificate Introduction (2) 20052012- Q1 # PLWHA registered with medical services 11,187 10,903 % PLWHA registered as people with disabilities* 38.6%53.5% % PLWHA receiving food allowance**45.2%65.9%

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RR omania is now a low prevalence country for HIV (0.1%) AARV coverage 81-83% BUT II n 2010 unintended treatment interruptions BB udgetary cuts & delays in ARV procurement NN GOs protests Introduction (3)

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Objectives To assess the access to ARV therapy for PLHIV in Romania To describe the scope of treatment interruptions in 2010

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A nationally representative clinic-based research among PLHIV (15+ years, N=618, 4% ) March June 2011 Sample was weighted according to subjects' surveillance center registration (9 centers) Data collection by professionals from CBOs & organisations of PLHIV (UNOPA, Sens Pozitiv, ARAS & Alturi de Voi) Ethics Committee of Faculty of Sociology and Social Work, University of Bucharest approval Measures demographics, treatment interruptions, VL&CD4, adherence, access to services. Methods

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Age groups%Marital status% 15-17 years0.7% Married/remarried/consensual31.1% 18-24 years71.7% Celibacy/Divorced/separated66.4% 25+-29 years5.0% Housing 30+ years22.6% Owner/family 74.0% Gender Rented15.9% Females/Males49.4%/50.6% Social housing (protected shelter/family type/residential) 7.4% Most recent education No housing 0.7% No education3.8% Way of infection Secondary or less32.2% Infected medical equipment/ hospital 64.2% Vocational school16.1% Infected blood transfusion7.6% High school37.0% Mother-to-child0.9% University10.1% Unprotected sexual intercourse10.2 % Main source of incomes Injection of drugs1.1% Social allowances (indemnities, food allowances, pension)86.0% Other3% Wage/business9.7% DK/NA13.1% Other (family, partner)3.7% Sample characteristics

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Duration with HIV 6 + years82.1% Average duration 10 years Duration with ARV 6+ years78.4% CD 4 count (self-declared) 0-350 23.0 % >350 53.3 % DK 23.7 % Viral load (self-declared) undetectable 21.2 % detectable11.1% DK 67.7 % Medical condition Last CD4 Last VL

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Alternative treatment Reason for last change Treatment Frequency of visits to regional center in 2010 for ART Number of schemes changed

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Unintended treatment interruptions in 2010 No differences by age, occupation, education, income, gender or ethnicity Average interruption: 38 days How many times was your medication scheme replaced due to the absence of the original medication in 2010?N Percentage At least once 10116.3% DK/NA51783.7%

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What did you do when you didnt receive the ARV therapy in 2010 from your hospital NPercent I received it from another hospital 7519.90% I bought it at a pharmacy123.20% I borrowed from a friend 7018.70% I didnt take any treatment 29778.90% Strategies used when ART unavailable in 2010

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How was your life influenced by the interruptions?NPercentage I felt worse13236.1% I went to the hospital more often to take my medication 17347.0% I spent more money commuting than I did for the medication13837.7% I was forced to stop the treatment22661.5% Consequences of interruptions

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D3. When thinking about your ARV medication prescribed by the doctor YesNo DK/ NA Does anybody remind you to take your medication? 34.8%63.5%1.7% Does it happen for you to forget to take your medication?41.1%57.3%1.6% Does it happen for you not to care about the medication? 16.0%82.0%2.0% Does it happen to stop taking the medication because you feel better?6.2%91.3%2.3% Does it happen not to take your medication because you feel worse after it?7.5%89.9%2.6% Did it happen to forget your ARV medication at least once during the last 4 days? 16.2%81.6 %2.1% Did it happen for you to be some hours late from the prescribed time for the ARV medication?42.2%56.1%1.7% Some people forget to take their medication at the end of the week. Did it happen that you forget one last Saturday or Sunday? 11.7%85.7%2.6% Adherence 100% self-declared adherence: 59.1% - last month/36.1% ever

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Almost unlimited access Little limited access Limited access Almost no access Not the case/ Cant tell DK/ NA ARV therapy44.6%42.4%9.5%1.3%1.1%1.2% Treatment for opportunistic infections 21.0%34.3%20.2%14.2%7.8%2.4% Medical exams a. Dentistry10.5%21.5%24.7%13.1%27.6%2.5% b. Maternity2.0%5.4%5.8%3.5%73.7%9.6% c. Gynaecology4.3%12.2%11.2%4.7%59.4%8.2% d. Surgery3.8%9.0%10.0%8.8%63.1%5.1% The possibility to discuss with other PLHIV 53.1%29.6%6.8%4.3%4.2%2.0% Joining a PLHIV association/ defending the rights of PLHIV 56.6%23.9%2.7%2.6%11.9%2.3% Job9.9%12.2%13.1%17.7%44.3%2.7% Access to services

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There were no more interruptions reported in 2011-2012 External factors (e.g. unintended treatment interruptions) + internal factors (e.g. treatment fatigue) negatively affect adherence in long-term treated persons Virologic monitoring to be improved Access to specialized medical services limited More analysis on the adherence + support for maintaining Growing with HIV treatment is part of everyday living Romanian authorities must ensure continuous treatment access for PLHIV to prevent deterioration of the health status. Conclusions

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Research financed by: IrishAid Ireland and UNAIDS Regional Office through UNICEF Romania and United Nations Development Programme. Thank you! Florin Lazr florin.lazar@sas.unibuc.ro Doru Buzducea dbuzducea@yahoo.com