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

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)

overprotection from the family stigma, and

discrimination in education

health care focusDeveloping social services

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%

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)

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 %

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

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

Alternative treatment

Reason for last change

TreatmentFrequency 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 101 16.3%

DK/NA 517 83.7%

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

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

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

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

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

Research financed by:IrishAid Ireland and UNAIDS Regional Office through UNICEF Romania and

United Nations Development Programme.

Thank you!

Florin Lazărflorin.lazar@sas.unibuc.ro

Doru Buzduceadbuzducea@yahoo.com