i am who i am - teens living with...
TRANSCRIPT
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