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

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

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

 a peak increase of those availing of social entitlements ( see table ),  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) 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%

RR omania is now a low prevalence country for HIV (0.1%) AARV coverage – 81-83% BUT II n 2010 – unintended treatment interruptions BB udgetary cuts & delays in ARV procurement NN GOs protests Introduction (3)

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

 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 & Alături 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

Age groups%Marital status% years0.7% Married/remarried/consensual31.1% years71.7% Celibacy/Divorced/separated66.4% 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

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

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

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 % DK/NA %

What did you do when you didn’t receive the ARV therapy in 2010 from your hospital NPercent I received it from another hospital % I bought it at a pharmacy123.20% I borrowed from a friend % I didn’t take any treatment % Strategies used when ART unavailable in 2010

How was your life influenced by the interruptions?NPercentage I felt worse % I went to the hospital more often to take my medication % I spent more money commuting than I did for the medication % I was forced to stop the treatment % Consequences of interruptions

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

Almost unlimited access Little limited access Limited access Almost no access Not the case/ Can’t 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

 There were no more interruptions reported in  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

Research financed by: IrishAid Ireland and UNAIDS Regional Office through UNICEF Romania and United Nations Development Programme. Thank you! Florin Lazăr Doru Buzducea