A rapid assessment of the quality and accessibility of integrated TB, HIV and harm reduction services for people who inject drugs in

Portugal

Pippa Grenfell, Ana Cláudia Carvalho, Dina Cosme, Ana Martins, Henrique Barros, Tim Rhodes

TUBIDU III International Network Meeting Bulgaria, 24th – 25th of April 2013

Highest TB incidence in Western Europe (22 cases per 100,000 population)

IDU important driver of HIV epidemic

Harm reduction framework:

OST widely available - drug treatment centres, outreach, pharmacies, prisons

Personal drug use decriminalised (2001)

Integrated approach to delivering HIV, TB and drug dependency care

(ECDC/WHO-Europe, 2011)

Aim: Assess the accessibility & quality of TB and integrated TB-HIV services and delivery systems for PWID in Portugal

Objectives:

Examine patterns of service use among PWID: TB, HIV, harm reduction, prisons

Describe experiences of treatment access and delivery (PWID, providers)

Explore contextual factors influencing treatment engagement and adherence

Assess relationship between treatment systems: coordination, referral, integration

Describe treatment-related social support and care needs, and role of CBOs

Develop guidance on ‘best practice’ on integrated TB & HIV services for PWID

Case study: Porto and Vila Nova de Gaia

Rapid assessment: multi-method, triangulation, action-oriented

1) Review of existing data Uptake of screening and treatment among PWID: HIV, TB, HCV and drug treatment services

Data sources: treatment services; surveillance/control programmes; surveys; published studies

Informed by WHO M&E guide for collaborative TB/HIV activities (WHO, 2009)

2) Semi-structured interviews 30 PWID with experience of HIV &/or TB

7 service providers: HIV, TB, drug treatment, outreach and prison health services

Recruitment: treatment centres & outreach programme

Topics: drug use, experiences of testing & treatment/integration, social support

Interviews in Portuguese (audio-recorded), transcribed & translated

Thematic, iterative and inductive analysis

3) Mapping of HIV, TB, drug treatment & harm reduction services

HIV & HCV: EMCDDA & IDT annual reports; Klotho programme data

TB: National TB programme annual reports

OST: IDT annual activity reports

Other published studies: Pubmed searches, Revista Portuguesa de

Saúde Pública, Revista Portuguesa de Pneumologia

Unpublished reports: service providers and other key stakeholders

PWID: Age: average 40 (31-52); 27/30 male

14 lived with partner/family; 7 alone, 6 sheltered housing, 3 homeless

IDU: 10 current, 3 recent, 17 former

IDU history: av. 12 years (2 months – 26 yrs); heroin/heroin + cocaine

Most had experience of OST (26)

11 had concurrent HIV and TB treatment

All participants with TB history had treatment (15); 2 HIV+ ART-naive; 17 with HCV history but no treatment

Experts: HIV & TB consultants; nurse, outreach worker & psychiatrist in PWID/prison services

Average 14 years (7 – 25) working with PWID

Drug treatment centres (‘ET’) OST – onsite or other healthcare/community settings

HIV & HCV screening - rapid HIV testing since 2007

Referral for TB screening, and HIV/TB treatment (can be supervised onsite)

Pharmacy & outreach: community-located OST & NSP

TB treatment centres (‘CDP’) TB screening; prevention and active disease treatment via DOTS (1st 2 weeks home/hospital)

Routine HIV testing, referral for HIV treatment

Hospital-based HIV clinics

Monthly take-home ART (CD4<350), 3-9 monthly consults

Routine TB screening, referral for treatment

HCV treatment - hospital-based; take-home treatment

Source: Figure based the on report of National Health Institute Dr. Ricardo Jorge. HIV/AIDS: The Situation in Portugal ‐ December 31, 2010, 2011.

HIV DIAGNOSIS (IDUs) - PORTUGAL

HIV DIAGNOSIS (IDUs) - PORTUGAL

Total ID Users Non- ID Users

Sex N Number of HIV

infections (%)* N

Number of HIV

infections (%)* N

Number of HIV

infections (%)*

Female 3 418 365 (10,7) 1 802 290 (16,1) 1 616 75 (4,6)

Male 17 108 1 448 (8,5) 10 021 1 345 (13,4) 7 087 103 (1,4)

Prevalence of HIV infection among Drug Users

(2007-09)

* Comprise cases previously diagnosed + cases detected using rapid test screening

Total ID Users Non- ID Users

Type of visit N Number of HIV

infections (%)* N

Number of HIV

infections (%)* N

Number of HIV

infections (%)*

First 4 065 234 (5,8) 1 532 200 (13,0) 2 533 34 (1,3)

Follow-up 17 015 1 620 (9,5) 10 610 1 470 (13,8) 6 405 150 (2,3)

* Comprise cases previously diagnosed + cases detected using rapid test screening

Prevalence of HIV infection among Drug Users

(2007-09)

0,0

10,0

20,0

30,0

40,0

50,0

60,0

70,0

80,0

90,0

100,0

<1 1-2 3-4 5-9 ≥10

Time since last injection (yrs)

Primeiras visitas

Visitas de seguimento

Proportion of PWID aware of HIV serum status

SYRINGE AND NEEDLE EXCHANGE “kit”

1st KIT

1993

2nd KIT

1998

3rd KIT

2007

Rapid testing targeting PWUD at ETs: 89% coverage (2007)

Prevalence among PWID (ETs, nationally):

23% HIV-positive new ET clients receiving ART (2009)

182 ET clients receiving co-located ART at drug treatment centres (2010)

Screening and Treatment

The Tuberculosis National Assistance was created in 1906

Institute Queen Amélia, Lisbon

National TB programme

PWUD

17% ( 587)

TB- 2009

2.3% MDR -TB 61% XDR-TB (over twice the national rate)

Almost all were aware of their HIV status:

57% VIH +

105 ET clients receiving OST and DOTS at ETs nationally (2010)

¾ (440) drug users with active TB completed treatment (2009) - 4% still in treatment, 8% interrupted therapy, 4% lost to follow-up, 9% died

Following development of collaborative care model at CDP:

~ 4-fold increase in TB screening

Reductions in non-adherence (48% -> 24%) and mortality (18% -> 14%) (Duarte, 2011)

Combined model Combined therapy centre (‘CTC’): Co-located OST, HIV, TB & HCV treatment

Collaborative model Individually-tailored care: Inter-agency collaboration, treatment in one healthcare / community setting

Combined( CTC) :

The Combined Therapy Centre at Joaquim Urbano Hospital – Was set up in 1998 to address poor adherence to concurrent treatment among PLHIV on OST.

Multidisciplinary team (infectious disease specialists,

psychiatrists, psychologists, social workers, nurses);

ART + anti TB+ OST Daily under direct observation;

Incentives to encourage HIV and TB treatment

adherence ( travel passes, daily snacks).

Relationship with the team; co-located,

integrated provision of all services.

Proximity with current consumers; Limited to a specific location. COST

Collaborative

Collaboration between geographic separate services;

This colaboration allows delivery of individually‐tailored treatment in one health care or community setting, or at home.

Possibility of greater proximity between place of residence and services for treatment; greater flexibility . Highly dependent of informal professional networks;

+

-

+

-

Collaborative networks and shared protocols;

The central role of outreach services;

Uninterrupted OST;

Flexibility over treatment location;

Communication and collaboration between disciplines, organisations and individual service providers central to achieving effective TB and integrated HIV, TB and drug dependency care.

“Collaboration at CDP is great ... ‘How is tomorrow looking? Are you very busy? Can I send a patient over that I think needs to be tested ... the patient takes this dose [of methadone] …’because we stock up CDP with methadone … ‘If you can, colleague, will you give him the dose tomorrow so that he doesn’t have to come here to take it and that way he only goes to one place?’” (ET provider)

Formal referral between HIV clinics and other treament centres Hindered by bureaucracy, absence of shared protocols

Informal professional networks Facilitated flexible access to

appointments, which proved particularly important in getting outreach clients into services.

“Dr R. [CDP], [she’s] excellent, she’s always ready to see an urgent case … And then, at the Hospital Santos Silva, Dr MM … she’s given us, for some years now, those two consultations a week [reserved for GiruGaia clients], which is excellent. Whether we go or not, we have them reserved for us, those two hours.” (Outreach provider)

Outreach teams’ capacity to supervise combined treatment in community settings.

In collaboration with ETs, CDPs and HIV clinics, was key to facilitating

treatment adherence attendance at follow-up consultations. “It’s still them who give me the methadone and the pills [ARVs]. It’s them who tell me to go to the appointments in Santos Silva Hospital. I do my whole treatment with them, because if I kept it there would be days when I would[n’t] take the pills and this way I do.” (Joel)

Central Detection, treatment access and engagement

Accompanying clients to services, both early on and in cases of urgent care.

Provision of vital support for those clients with financial difficulties and

reduced capacity for self-care. “I was in a very bad way, I was dying, I was on my last legs and that street team, which hands out syringes and food here … they picked me up because I didn’t have enough strength to get myself to hospital … they took me to the Hospital Santo António first, I stayed there, they put a mask on me right away.” (Ricardo)

Clients Fear withdrawals due to perceveid difficulty securing methadone treatment or interaction with HIV or TB treatment.

“I ended up having 14 defenses [CD4 cells] left. Dr M. said, ‘I don’t know how you are still standing’ ... the tuberculosis medication reduces the effect of the methadone, it is a horrible withdrawal ... I felt bad the first time when he told me it, ‘No, I won’t take 24 anything’... He admitted me and [only] then I started taking all the medication [ART & DOTS] properly.” (Maria)

Established communication between ETs, treatment providers and

outreach teams Facilitate monitoring of treatment interactions and appropriate adjustment of OST – FUNDAMENTAL to engaging PWID in concurrent HIV, TB and drug dependency care.

Co‐located care, whether achieved through the ‘combined’ or ‘collaborative’ model, was highly valued.

Possibility to attend a treatment centre near one’s home or workplace, and to transfer to a more conveniently located service Improved attendance at HIV and TB services, emphasizing the value of a geographically flexible system of treatment delivery and integration.

The opportunity to receive home‐based DOTS and OST in combination was

critical to adherence for immobile or physically weak clients:

“They bring it [TB treatment] to my home. If I had to come here I wouldn’t do it, and I would have to take two types of transport, or else get out at the town hall and then walk here. Even now I don’t feel well, I have already gained 9 kg in weight … She [the nurse] brings the tuberculosis one and the methadone … I rarely came here to take it … I had missed 3 or 4 [days] … I came when I saw that I had to come or when I felt alright.” (Maria)

Social network support; Client individuality and autonomy; Patient-provider relationships; Time of testing and treatment provision; Clients’ treatment literacy Addressing broader health and social care

needs.

Practical and moral support from friends and relatives was an important impetus for TB and HIV care‐seeking

Although a reluctance to attend health services often delayed attendance until reaching a point of critical weakness:

“I’d already been at home for 3 months, a very strong cough and I had fever ... the girl I

was living with, she said, ‘Ó, Miguel.’, go to the hospital’, and I [said], ’I won’t go to the hospital, I don’t like it’ ... I got up, took my brother’s car … went to the hospital, I was immediately hospitalized … the doctor told me I had tuberculosis, if it [had] lasted kind of, a week [longer], I would pass away.” (Miguel)

Knowing individuals who worked within the health system or social services

Allow bureaucracy to be navigated and access expedited:

“A woman that I know ... she met me in the street … she looked at me and took a fright …‘What is this?’ I said like, ‘Well I already went to Santo Antonio Hospital, Sao Joao, they don’t say anything, I went to Santo Antonio and they tell me nothing, what am I gonna do? And she [said], ‘Do me a favour, when you get there to Santo Antonio, call for Célia! ... Do something, say my name three times … you’ll see how they will send you to JoaquimUrbano hospital .” (Jeremias) The vital role of network support, and the implications of its absence for

care‐seeking and treatment adherence, points to the importance of social as well as health care interventions to engage PWID in HIV and TB care.

The decision to initiate OST was widely presented as a matter of self responsibility requiring individual desire to enact change:

“Methadone is everywhere … You’re only not on methadone if you don’t want to [be] because it’s very easy.” ( Sara)

Some PWID, particularly those who were actively using drugs and had difficulty

managing a routine, placed importance on being ‘told’ to attend services: “I’ve got my sister who is more than a mother to me, right. But you see it’s not enough… I have got to have someone who is like … ‘you must go to your appointment’... on my own if I have to do it, I won’t go! I won’t! It’s not that I don’t have the will, I do! It’s just that one day a person is withdrawing… you go down again, you start using again.” (André)

Adapting health care to the individual Negotiation between PWID and service providers

Convincing clients to accept screening required provision of sufficient information regarding its importance though clients who were actively using drugs tended to prioritise withdrawal avoidance over less immediate health and social care needs:

“It was also a two year struggle but we were able to get all our patients to be tested for everything here when they enrolled … before they can begin any treatment that is the condition that we impose, we ‘impose’, I mean we ask people to collaborate and we explain how important it is … to get the tests done and for them to be collaborative, they have accepted it … they end up accepting it well.” (ET provider)

Little mention of user involvement in wider service planning.

The relationship between PWID and the provider they viewed as their ‘doctor’ Feeling known and treated equally helped clients feel accepted in specialist

treatment centres:

“We go there after so many years and people know me. [They say], ‘Hi, how are you,everything alright?’ … It’s these little details … do you see? … They don’t look at us as sick people … we’re treated like people … They have their lives outside, they have their friends outside, right, but they look at us like we look at them. There’s no distinction.” (Jacinto)

Feared and enacted discrimination in general health care services remained a concern, DESPITE considerable progress over recent years.

“There are people who are working there, who are nurses, who seem to be disgusted to touch us … That is discrimination.” (Ricardo)

Outreach teams had noticed marked improvement in the way their clients were received by treatment services when referred or accompanied by outreach staff.

Absence of discrimination in specialized treatment centres ≠ mainstream

services.

“Not long ago … a young guy died … in the terminal phase and that guy died saying that he never had any diseases at all … Why? ... He smelled bad … he was ashamed to go to the hospital … many times the street team took him to the hospital and he’d arrive and run away because people would look at him … ‘what a smell’.” (Ricardo)

Changes in access to drug treatment services over the past two decades ETs were initially heavily oversubscribed resulting in year‐long waiting lists.

Identification Is not a barrier “We [CDP], not long ago, had a drug user who was homeless and had no identification card, no national insurance number, nothing, and he was seen, did all the tests and began treatment and in the meantime got all his documentation.” (CDP Provider) Access to TB services had also improved and was now typically timely Initiating HCV treatment took considerably longer, in part linked to the

requirement to abstain from substance use during treatment, a particular barrier for outreach clients, many of whom actively used drugs.

Feeling healthy and ‘distancing’ -> delayed HIV treatment until critically weakness

“When they told me it was HIV … I asked, “What is HIV?” HIV is AIDS. I wanted to kill myself and I didn’t accept it … I had the defenses, it wasn’t necessary to take the medication, so I got it into my head, “Oh, I don’t want it! … I’m fine as I am!’” … In 2008, I was really forced to take it or else I would have died.” (Ricardo) TB treatment widely viewed as mandatory, underpinned by awareness of

preventive role and public health benefit:

“I had to take preventative medicine. There were five pills, five Rifater or something, on an empty stomach in the morning, they actually made me quite ill but I had to take them … it’s like this, while I was taking it I had no problems of catching it [TB], you see, or developing it, but if I hadn’t taken it nothing might have happened … [or] it would’ve be well worse, I would have had to be treated for a lot longer.” (Marcelo)

Peers’ negative accounts of treatment side effects + required abstinence

from substance use= Deterred or delayed HCV uptake “It is not a very serious thing, it is something which drug takers are usually expected to catch sooner or later … by listening to other people who had it and had done treatment, [it] is a bit painful, [their] hair fell out … I was afraid of ... the physical tiredness, vomiting, sickness, changing sleep patterns… so I was always postponing the treatment.” (Marcelo)

Importance of addressing broader health and social care needs to facilitate treatment adherence among PWID

“We cannot expect a patient that doesn’t have food to adhere to a medication… it is

also important to secure other forms of social support.” (São João Hospital provider)

Housing and social security benefits Difficult access [government cuts]

“Dental treatments are completely off the list, housing support … [is] very rigid and

almost none of our applications has been accepted because right now … we are then left with hostels or a shelter in Porto, Casa Vila Nova … we refer them to some community canteens [soup kitchens], we give them some food ourselves, and that’s it … financial aid for medicine, transportation, housing… most of them have been cut.” (Outreach provider)

http://www.euro.who.int/en/what-we-do/health-topics/communicable-diseases/hivaids/publications/2012/rapid-assessment-of-the-accessibility-and-integration-of-hiv,-tb-and-harm-reduction-services-for-people-who-inject-drugs-in-portugal-a

Available in:

Final study report

Photo story

http://www.euro.who.int/en/what-we-do/health-topics/communicable-diseases/hivaids/country-work/photo-story-putting-people-at-the-centre-integrated-treatment-for-hiv,-tuberculosis-and-drug-dependence-in-portugal

Available in:

Improve health information systems, particularly re. TB among PWID

Consider including TB/HCV screening in HIV testing programme via ETs

Renew focus on HCV treatment – challenging ‘normalcy’ and improving integration

Develop national integration guidelines building on informal experiences of client-centred care - focus on collaboration, communication, flexibility and client agency

Continuation of outreach programmes critical to ensuring access for most socially marginalised PWID

Facilitate greater involvement of clients in service planning and delivery

Work with mainstream care providers to improve understanding of PWIDs’ health and social care needs, and to challenge discrimination

Scarce prevalence and service use data specific to PWID recommend improved M&E

PWID interviewed mostly former injectors, all in contact with services – BUT recruitment via outreach teams included marginalised, current users with complex health needs

Interviews with providers - distinct services agreeing to participate – BUT purposive inclusion of experts from services representing different modes of service delivery

Interview participants and key informants

National AIDS Coordination, TB Control Programme and other services providing information for existing data review

Interview, transcription and translation team

Advisory group

Smiljka de Lussigny and Susana Silva, for commenting on presentation/ rapid assessment report

WHO-Europe/EC: funding and steering the study

European Centre for Disease Prevention and Control/WHO Regional Office for Europe (2011). Tuberculosis surveillance in Europe 2009. Stockholm.

Greenwald, G. (2009). Drug Decriminalization in Portugal: Lessons for Creating Fair and Successful Drug Policies. Washington DC, US., CATO Institute.

World Health Organization (2009). A guide to monitoring and evaluation for collaborative TB/HIV activities, Stop TB Department and Department of HIV/AIDS. Geneva.

National Institutes of Health Dr. Ricardo Jorge (INSA). HIV/AIDS: The Situation in Portugal - December 31, 2010. 2011, Department of Infectious Diseases.

National Programme to Fight Tuberculosis (PNT). Point of the Epidemiological Situation and Performance. 2011.

Medical School of University of Porto (FMUP). Programme for Early Detection and Prevention of HIV/AIDS in Drug Users (Klotho) - Monitoring Report (2007-2008). 2009.

Institute for Drugs and Addiction (IDT). Activities Report 2010.

National Programme to Fight Tuberculosis (PNT). Point of the Epidemiological Situation and Performance. 2010.

Duarte, R., et al., Involving community partners in the management of tuberculosis among drug users. Public Health, 2010. 125: p. 60-2.