HIV Satellite Symposium at 9th INTEREST WS 2015

"I Am Who I Am" - Teens living with HIV

Wednesday 6th May 2015 11:30 – 13:00

Room Jacaranda

"I Am Who I Am" - Teens living with HIV

Time Presentation Speaker

11:30–11:40 Welcome and Introduction Linda-Gail Bekker

11:40–11:50 A Teen’s Story – Living with HIV Young Person Living with HIV

11:50–12:15

Support Strategies for Adolescents – What Works? Panel Discussion

Bahati Kasimonje Nicola Willis Rashida Ferrand

12:15–12:35

Managing ART in Adolescents in 2nd and 3rd Line

Tariro Makadzange

12:35–12:55 Integration of Services and Transition to Adult Care

Margie Pascoe

12:55–13:00 Summary and Goodbyes Linda-Gail Bekker

Housekeeping

Please…

Turn your mobile phone to silent/off

Use the question cards

Complete the evaluation form and hand it to the staff at the exit

Delegates requiring a certificate of attendance for CPD accreditation please

make sure to sign at the exit

Disclaimer

This meeting is organised and supported by Janssen Pharmaceutical Companies of Johnson & Johnson.

The views expressed in the slides are those of the individual faculty members and do not necessarily reflect the views of Janssen Pharmaceutical Companies of Johnson & Johnson.

The presentations may include discussions on off-label use of drugs.

1.8 billion

people are between the ages of 10 and 24 years

Source: UN-DESA World Population Prospects 2010

“the largest youth

generation in human history”

UNFPA, 2013

Adolescent health –Lancet

• “Adolescence is a time in life that harbours many risks and dangers, but also one that presents great opportunities for sustained health and wellbeing through education and preventive efforts.

• Never before was there such a discrepancy between sexual and psychosocial maturity.”

Sabine Kleinert, Lancet series.

All cause mortality

rates/100 000

Patton G Lancet 2009

Communicable Disease causes

Early

Mid

Late

Maternal

Injury

Specific Group 1 causes (meningitis, TB, AIDS, Acute lower RTI,

maternal causes) of death stratified by

age, region and gender.

Patton G,et al. Lancet 2009

EMR=Eastern Med region SEAR=SE Asia Region WPR=Western Pacific Region AMR=Region of the Americas

Maternal

HIV/AIDS

TB

INDEX DOMAINS • Citizen Participation • Economic

Opportunity • Education • Health • Information and

Communication Technology

• Safety and security

CSIS and IYF, 2014

Domain Rankings Country Citizen

participation Economic opportunity

Education Health ICT Safety and security

USA 20 1 3 12 3 8

RSA 2 30 14 26 21 26

8% of adolescents and 2/3 of HIV burden 1.5 million Africans contracted HIV in 2013

1.1 million died of AIDS

½ million were YOUTH Treatment coverage: 37%

3 out of every 4 people on ART are African

UNAIDS Gap Report 2014; UNAIDS Fact Sheet 2014.

Source: • Regional summaries by gender: UNICEF, Progress for Children, 2012 derived from 2010 estimates • Country data: UNAIDS 2009 estimates

Adolescents (10 – 19) Living with HIV

2.1 million [1.6 million – 2.6 million] of whom 2/3 are in girls (2012)

82% (1.7 Million) in SSA

82 73 73 72 72 70 70 70 70 69 69 69 69 62 60

50 49 38

29 29

18 27 27 28 28 30 30 30 30 31 31 31 31 38 40

50 51 62

71 71

0%10%20%30%40%50%60%70%80%90%

100%

Sout

h Af

rica

Moz

ambi

que

Keny

a

DRC

Tanz

ania

Cam

eroo

n

Cote

dIv

oire

Swaz

iland

Uga

nda

Mal

awi

Nig

eria

Zim

babw

e

Leso

tho

Zam

bia

Indo

nesia

Russ

ian

Fede

ratio

n

Indi

a

Chin

a

Braz

il

USA

% female

Source: UNAIDS 2012 HIV and AIDS estimates

New HIV Infections in Adolescents in 20 Countries with Highest Number of New HIV Infections, 2012

Girls bear the brunt but Young Key Populations make up the rest….

Adolescents (10-19yo) living with HIV: South Africa.

373 000

4%

bHIVa

pHIVa +

bHIVa

Leigh Johnson 2013

16

Unacceptable inequality: AIDS deaths rising among adolescents

0

50.000

100.000

150.000

200.000

250.000

2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012Children aged 0–4 Children aged 5–9 Adolescents aged 10-19 Young people aged 20–24

Deaths in adolescents aged 10 - 19

Deaths in children aged 0 – 4 years

Deaths in children aged 5 – 9 years

Deaths in young people aged 20 - 24

Source: UNAIDS 2012 HIV and AIDS estimates

69 000

104 000

A Teen’s Story - Living with HIV

Young Person Living With HIV Zimbabwe

Support Strategies for Adolescents – What Works? Panel Discussion

Bahati Kasimonje, Zimbabwe Nicola Willis, Zimbabwe

Rashida Ferrand, Zimbabwe/UK

Managing ART in Adolescents on 2nd and

3rd line therapy in Resource Limited Settings

A Tariro Makadzange, MD PhD Instructor of Medicine, Harvard Medical School; Assistant in Medicine, Massachusetts General Hospital; Faculty, Ragon Institute of MGH, Harvard, MIT; Lecturer, University of Zimbabwe, College of Health Science

Global Pediatric HIV

• 2.9 million children infected in sub-Saharan Africa • 240,000 new pediatric infections in 2013 • 210,000 of those infections were in SSA

• 260,000 new infections in 2012 decreased from 550,000 in 2001

• HIV prevalence in Zimbabwe children <14 years: 2.8%

• 138,642 HIV infected children (GOZ Report, 2011)

• In Zimbabwe 2010, approx. 40,000 children on ART

• 13,393 deaths in children per year (2009)

UNAIDS (2014), Zimbabwe MOH (2010)

Pediatric HIV is associated with high Early Mortality • Cohort of 62 infants in Nairobi • Early infected HIV diagnosed by 1

month in 90% • Death occurred in 32 by age 2 years

• 25 died within 1st year of life • Median age at death – 6.2 months

• 40% 1-year mortality compared with • 10% 1- year mortality in HIV exposed

uninfected (4-fold increased risk of mortality (HR 4.0, 95% CI 2.1-7.6, p<0.001)

• National infant mortality rate of 7.6% at that time.

• Mortality due to infectious diseases – pneumonia , diarrhea, sepsis, meningitis

• Risk factors for death: Low birth weight, severe maternal immunosuppression

Survival at 24 months determined by maternal CD4 count

Obimbo et al. Pediatr Infect Dis J 2004, 23(6):536

Early initiation of ART results in improved survival

• The Children with HIV Early antiretroviral Therapy (CHER trial) in South Africa

• Early initiation of ART regardless of CD4 count or CD4% in HIV infected children at ages 6-12 weeks was associated • 76% reduction in mortality • 75% reduction in disease

progression

Violari, A et al., NEJM 2008, 359:2233

Pediatric ART

• Lagged behind adult ART • Adult coverage in

Zimbabwe is >85% of eligible individuals

• Pediatric coverage is only 40% of eligible children

• Poor pediatric formulations

• Complex dosing challenging

• Centralized care Zimbabwe Ministry of Health, 2013

HIV Treatment Cascade

Kranzer et al. JIAS 2012; 15:17383

Adolescent HIV Care and Treatment Cascade • Perinatal Infection • Early Sexual Transmission • Access to Testing • Enrollment and engagement in care • Retention in care • Successful outcomes on ART

Clinical Adolescent HIV

Chido is a 10 year old female with chronic HIV infection likely perinatally acquired • She was born in 1998 to an HIV positive mother who died when

she was an infant. • Her father had died earlier so she was sent to stay with her

maternal aunt • Her maternal aunt left for South Africa as the economic situation

worsened and so for several years Chido went between many relatives, until she was taken in by her another aunt Margaret who was more committed to her care.

• As a child she did well until age 8 years when she would have recurrent colds/pneumonias that were treated with several rounds of antibiotics.

• At age 10 years she had severe pneumonia and was hospitalized at that time.

Clinical Adolescent HIV • She had a chest X-ray done which showed the following:

Allen, CM et al. , Ann Thorac Med 2010; 5:201

Chido’s pneumonia • She had sputum done which was smear negative, and

gene X-pert was positive • Cultures were sent but results were never received • She was started on TB therapy • An HIV test was done which was positive • Her CD4 count at baseline was 27 cells/mm3

• A few weeks later she was started on ART with D4T/3TC/EFV

Chido’s TB/HIV Coinfection • She initially did well • After completing her TB therapy she had been switched

from D4T/3TC/EFV to D4T/3TC/NVP • Her aunt Margaret took her to all of her visits to the clinic,

and supervised her taking her medications • She gained weight and started to do well in school • In the meantime aunt Margaret got married, and her

husband was not keen to take on another child, • Chido was sent to boarding school, and to spend holidays

with an uncle and his family

Laboratory Monitoring • After 1.5 years on ART she began to

complain of some tingling in her hands and feet

• She hadn’t had a CD4 count done recently as all the days when she was scheduled to come in for a CD4 test conflicted with her school schedule

• HIV viral load testing was not available at the clinic

• Her provider was concerned and recommended that she get a CD4 count done before she switched therapy

• 6 months later it hadn’t been done and she still had tingling in her hands and feet, and and times her feet felt like they were burning

• She had now started boarding school

Image from www.positivelive.com

Boarding school • At first Chido tried to stick to her schedule 7am and 7pm.

However at times she would have early sports at 7am, miss breakfast and forget to take her pills

• In addition she felt that the pills were causing the pain in her feet and so started to take them when she remembered to take them.

• When she returned for follow up at the clinic without a repeat CD4 count but with continued complaints of neuropathy and a national plan to phase out D4T, she was switched to TDF/3TC/EFV

• She liked the once a day combination and the ease of taking it

Psycho-social challenges • During the holidays she stayed with her

Uncle and his family • Her uncle’s family was not welcoming to

her, she yearned to be back at school • At school she wanted to feel normal,

and felt that taking her pills was sometimes too difficult and constantly worried that someone would find out that she had HIV. She continued to take her pills intermittently.

• She felt overwhelmed and depressed by her life circumstances

• She had also stopped taking her cotrimoxazole prophylaxis

Painting by Edvard Munch, 1893

Declining Health • At age 15 she started to loose weight • She had previously been quite athletic, but noted that she

was becoming increasingly short of breath with intermittent chest pain

• During her school holiday she became so sick, coughing and complaining of chest pain she was taken to the hospital

• On presentation she was 32kg • T 38 HR 112, BP 90/56, RR22, she was pale, and had an

O2 sat of 82% on RA and at rest • She had a chest X-ray done which showed

Chido’s Chest X-ray

What is your diagnosis at this point? www.idimages.org

New Opportunistic Infection • She was diagnosed with PCP pneumonia and started on

high dose cotrimoxazole and prednisone • Her CD4 count was 18cells/mm3

• What would you do now?

Follow-up Diagnostic Testing • She had an HIV viral load done which was 115,600

copies/ml • Genotype testing was done which showed the following

Mutations: D67N, K65R, K103N, Y181CF, M184V, H221Y • What would you do now?

Treatment options A. Continue her on TDF/3TC/EFV it is a single once a day

pill, easy to take and available B. Switch her to AZT/3TC/EFV C. Switch her to AZT/3TC/ATV/r D. Switch her to TDF/3TC/ATV/r E. Switch her to TDF/3TC/DRV/r

Key Mutations for commonly used Drugs Drug Resistance Mutations Stavudine M41L, K65R, D67N, K70R, L210W, T215Y, K219Q Zidovudine M41L, D67N, K70R, L201W, T215Y, K219Q Tenofovir K65R, K70E Lamivudine/Emtricitabine

K65R, M184V

Didanosine K65R, L74V Abacavir K65R, L74V, Y115F, M184V Efavirenz K103N Nevirapine K103N, K101EP, Y181CIV, Y188LCH, G190ASE

Zidovudine Resistance • TAM-1

M41L/L210W/T215Y is associated with high level resistance to ZDV and cross resistance to other NRTIs including Tenofovir and Abacavir

• TAM-2 D67N/K70R/K219Q is less common and is associated with lower fold resistance than the TAM-1 cluster

Chido Continued • She had a Hgb 6.5g/dL • TDF/3TC/EFV was discontinued • She was started on TDF/3TC/ATV/r because of her

anemia and to ease her pill burden, and allow for a once a day regimen

• A family meeting was called to discuss her care • It was apparent that her uncle and his family were not

committed to her care • She was assigned a peer counselor and over the ensuing

months it became evident that she was depressed and at times contemplated suicide.

• The clinic counselor had known her Aunt Margaret and suggested a family meeting involving Aunt Margaret

Improving Mental Health Care and Support • However by the time that her aunt became involved she

had been on 2nd line therapy for 6 months • She was depressed and was not taking her ART • A repeat CD4 count was done and it was 52cells/mm3

• HIV viral load was 92,300 cells/mm3

Continued failure despite better care • Her aunt was involved in her care and brought her to all

her visits • She was linked to a peer counselor and mental health

support through the clinic • For 6 months she religiously took her medications • She had a repeat CD4 count which was 52cells/mm3

• HIV viral load remained high at 56,347copies/mL

2nd Line Treatment Failure • She was referred to a research study that was offering

HIV genotyping for potential 3rd line recipients. • Her genotype came back as: • RT mutations: M184V, K65R, K103N • PR mutations: M36I, I50L, A71T, G73S, N88S • M36I consensus amino acid in non-B subtypes • I50L selected by ATV confers high level resistance to ATV

but increases susceptibility to remaining Pis • A71T polymorphic PI selected mutation • N88S is selected by ATV and reduces susceptibility to

ATV

What are her treatment options now? A. Switch to AZT/3TC/ATV/r B. Switch to AZT/3TC/LPV/r C. Continue her on TDF/3TC/ATV/r her viral load will

gradually improve and recheck HIV viral load in another 3 months

D. Switch to TDF/3TC/DRV/r dose the Darunavir as 800mg po once daily with 100mg ritonavir

E. Switch to TDF/3TC/DRV/r dose the Darunavir as 600mg po twice daily with 100mg ritonavir twice daily

2nd and 3rd Line therapies in Africa • Cost

• $115/person/year First Line • $330/person/year Second line • $1500/person/year Third line

• Laboratory Monitoring: Who necessary, how much and when?

• Complex Multidisciplinary care • Lifelong therapy • Need for therapeutic alternatives

• Therapeutic vaccines • Long-acting ?Depo preparations

Acknowledgements • Dr Nomvuyo Mothobi • Dr Chiratidzo Ndhlovu • Parirenyatwa Hospital Family Care Staff

Integration of Health Care Services: transitioning from

paediatric/adolescent care to adult care

Margie Pascoe, Newlands Clinic Harare Interest Workshop

6th May 2015

Presentation Outline

• Define integration & transition • Who needs to transition? • The ‘journey of life’ • Case study • What are adolescents looking for in adult services? • What challenges do healthcare providers face in

the transition process? • Conclusions

“Young people should be at the forefront of global

change & innovation. Empowered they can be key

agents for development & peace. If, however, they

are left on society’s margins, all of us will be

impoverished. Let us ensure that all young people

will have every opportunity to participate fully in the

lives of their societies.”

Kofi Annan (Emphasis added)

Integration & Transition

Integration: to mix with & join society or a group of people, often changing to suit their way of life, habits, & customs; to combine two or more things in order to become more effective (Cambridge dictionary)

Transition: the passage from one state, stage, subject, or place to another: change; a movement, development, or evolution from one form, stage, or style to another (Cambridge dictionary)

We have not been this way before…

• 2.1 million adolescents 10 - 19 years living with HIV

• 3.3 million children < 15 years living with HIV

• A different approach is required – ‘biopsychosocial’

• The issues are more than viral load & CD4 count

• Healthcare providers need to transition!

Paternalism versus Empowerment

Paternalism: thinking or behaviour by people in authority that results in them making decisions for other people that, although they may be to those people’s advantage, prevent them from taking responsibility for their own lives (Cambridge dictionary)

Empowerment: to give someone official authority or the freedom to do something (Cambridge dictionary)

‘Failed’ PMTCT

‘ Changing care-givers

Abandonment Orphanhood Poverty

Stigma Neuro-cognitive impairment Non-disclosure Disfigurement Abuse Poor mental health

Stigma Delayed puberty Non-disclosure Poor mental health

Happy, healthy lives

The Stormy Seas of Adolescence

Case Study - TM

• 26 year old woman • Referred at 16 years (undisclosed) • Had been commenced on ART at 14 years • First boyfriend at 17 years • Disclosure issues – conflict → poor adherence • Walked through stormy seas supported by HCW, family

& peer support group • Studied → employment • Now married with 1 child • Transitioned to adult care • Maintaining virological suppression & healthy marriage

Case Study - SD

• 21 year old youth • ART started at age 19 • Turbulent emotional period • Stopped ART • Referred to counsellor • Agreed to remain in care • After 8 months was ready to take medication • Welcomed back onto the team!

What does Successful Transition look like for an Adolescent?

• Understand the disease • Manage their medications • Schedule their appointments • Discuss their health concerns directly & honestly

with health care providers – including sexual, reproductive issues

Transition Challenges for the Adolescent

• The ‘System’

• The ‘Staff’

The ‘System’

• Hours of operation? (Can I come after school?) • A ‘safe’ space? (Do I want to come back?) • Information? (Don’t assume I know what is

going on!) • Entertainment? (Will I enjoy the experience?) • Peers? (Will I be surrounded by ‘old’ people?)

The ‘Staff’

• Trustworthy – keep confidentiality sacred? • Accepting & non-judgemental? • Actively listen & give constructive feedback? • Affirming, empowering? • Informed?

Psst….The goal is to form partnerships ….

Transition Challenges for Healthcare Providers

• Cognitive impairment • Mental health problems • Adherence challenges • Sexual, reproductive health needs • Stigma and disclosure • Communication • Relationship dynamics

Conclusions

• Busy health care providers alone cannot meet the needs of adolescents - be innovative!

• Multi-disciplinary teams are often an unattainable ideal in the ‘real’ world of caring for adolescents with HIV but what can you do?

• Form linkages with community-based groups • Start your own!

Let’s empower, support and help our children, adolescents and young people to ‘navigate the seas of life’ and attain the goal of happy, fulfilled lives

Thank you!

HIV Satellite Symposium at 9th INTEREST WS 2015

"I Am Who I Am" - Teens living with HIV

Wednesday 6th May 2015 11:30 – 13:00

Room Jacaranda