Florin Lazăr PhD, Lecturer Doru Buzducea PhD, Assoc . prof .
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Facultatea de Sociologieși 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, LecturerDoru 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 focusDeveloping 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)
2005 2012-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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Romania is now a low prevalence country for HIV (0.1%)
ARV coverage – 81-83%
BUT In 2010 – unintended treatment interruptions Budgetary cuts & delays in ARV procurement NGOs 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 & 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
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Age groups % Marital status %
15-17 years 0.7% Married/remarried/consensual 31.1%18-24 years 71.7% Celibacy/Divorced/separated 66.4%25+-29 years 5.0% Housing 30+ years 22.6% Owner/family 74.0%
Gender Rented 15.9%Females/Males 49.4%/50.6% Social housing (protected
shelter/family type/residential)7.4%
Most recent education No housing 0.7%
No education 3.8% Way of infection
Secondary or less 32.2%Infected medical equipment/ hospital 64.2%
Vocational school 16.1% Infected blood transfusion 7.6%
High school 37.0% Mother-to-child 0.9%
University 10.1% Unprotected sexual intercourse 10.2 %
Main source of incomes Injection of drugs 1.1% Social allowances (indemnities, food allowances, pension) 86.0% Other 3%
Wage/business 9.7% DK/NA 13.1%
Other (family, partner) 3.7%
Sample characteristics
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Duration with HIV6 + years 82.1%
Average duration10
yearsDuration with ARV6+ years 78.4%CD 4 count (self-declared)
0-350 23.0
%
>35053.3
%
DK23.7
%Viral load (self-declared)
undetectable21.2
%detectable 11.1%
DK67.7
%
Medical conditionLast CD4
Last VL
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Alternative treatment
Reason for last change
TreatmentFrequency 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 101 16.3%
DK/NA 517 83.7%
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What did you do when you didn’t receive the ARV therapy in 2010 from your hospital N Percent
I received it from another hospital 75 19.90% I bought it at a pharmacy 12 3.20%
I borrowed from a friend 70 18.70%
I didn’t take any treatment 297 78.90%
Strategies used when ART unavailable in 2010
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How was your life influenced by the interruptions? N Percentage
I felt worse 132 36.1%
I went to the hospital more often to take my medication 173 47.0% I spent more money commuting than I did for the medication 138 37.7%
I was forced to stop the treatment 226 61.5%
Consequences of interruptions
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D3. When thinking about your ARV medication prescribed by the doctor Yes No 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/ Can’t tell
DK/ NA
ARV therapy 44.6% 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. Dentistry 10.5% 21.5% 24.7% 13.1% 27.6% 2.5%
b. Maternity 2.0% 5.4% 5.8% 3.5% 73.7% 9.6%
c. Gynaecology 4.3% 12.2% 11.2% 4.7% 59.4% 8.2%
d. Surgery 3.8% 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%
Job 9.9% 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 Lază[email protected]
Doru [email protected]