European Hematology Association Annual Congress 2011: Patient Advocacy Session on "Adherence:Are You Sure your Patients Are taking Their Medicines?", presented by Giora Sharf, Co-founder, CML Advocates Network

1. European Hematology Association Annual Congress 2011:
Patient Advocacy Session
Adherence:
Are You Sure your Patients Are taking Their medicines?
Giora Sharf
Co-founder, CML Advocates Network
Director, Israeli CML Patients Organization
http://www.cmladvocates.net

2. Topics of my talk
1. Mechanisms driving non-adherence.
2. What can patient groups do to improve
adherence.
3. Results of our Adherence Pilot Survey.

3. Mechanism 1: Lack of awareness
about consequences
 Patients don't understand the Long Term Adherence to Imatinib
Alex Bazeos et al, ASH 2009
dangers of lack of adherence.
 Physicians…
• often do not dedicate time to
adherence
• need to ask patients how they are
coping with medication
• need to consider that self-reported adherence
is lower in reality

4. Mechanism 2: Saving the day (or
weekend) from side effects
 Spiral of "I am just doing fine",
so "I don't want to spoil my
day with feeling unwell"
 "Nausea / fasting reminds me
of having CML – every day"
 Drug holidays to have a great
weekend

5. Mechanism 3: Familiarization.
From the rollercoaster to normal life
CML Adherence
(ADAGIO study 2009)
After diagnosis Return to Doing "too well"…?
normal life

6. Mechanism 4:
Forgetfulness and poor packaging
 Patient sometimes can't remember whether he has
taken the pill…
 Consider packaging; blisters and bottles

7. Mechanism 5:
Changing routine may be difficult
 Switching medication in CML carries a risk of
non-adherence
• Twice daily  once daily
• Eating  fasting
5am 6am 7am 8am+
8am 9am 10am 11am 12noon
Take
with FOOD FAST FAST
 Might work well in the first weeks, but then…

8. What can patients groups do?
 Education!
Patients and caregivers & Drs & Nurses
 Develop & promote adherence tools
and routine with clinicians and industry
 Advocate for better packaging

9. Our action:
International CML Patients Survey
 Pilot survey on CML adherence was launched in April 2011.
 8 countries, 8 languages, 150 responses
 Designed & conducted by 8 CML advocates from 8
European countries and 3 CML experts, with BMS
facilitation of the survey pilot phase
 Goals:
1. To asses the extent of the issue, as reported by
patients to patients.
2. To identify effective tools that will be helpful for patients
to cope with adherence.
3. To evaluate cultural impact on adherence.

10. Demographics:
age and gender balance
Age group
25
21 21
19
20
17
15
15
percent
10
Gender
5
60
3
3 54
46
0
20-29 30-39 40-49 50-59 60-69 70-89 Missing
40
Age group
percent
20
0
Male Female
What is your gender?

11. As expected, most surveyed
patients were in chronic CML phase
CML phase
100
96
80 60
percent
40 20
1 3
0
Chronic phase Accelerated phase I don't know
What phase of CML are you in?

12. As expected, most surveyed CML
patients are on imatinib
Name of CML medication
80
72
60
percent
40
26
20
1 1
0
imatinib 2nd gen TKI investigational TKI TKI combo
Which medication do you currently take for CML?

13. Adherence – missed dose versus
self-reported Non-adherence by country
Missed dose and Adherence by Country
36
10 15 20 25 30 35
33
32
28 29 28
percent
21 21 21
20 19
18
17
8
5
0
c
s
y
d
e
el
ly
li
nd
an
lan
nc
ub
Ita
a
Isr
rla
rm
Fra
p
Po
Re
t he
Ge
h
Ne
ec
Cz
Missed dose (any reason) Self-reported Adherence

14. Forgetting doses is more common
in 1st generation TKI in CML
Accidentally missed dose by Medication
25
24
20
15
percent
10 5
0 15
KI
nib
nT
ati
ge
im
d
2n

15. Contrast: Intentional non-adherence
more common in 2nd gen TKI in CML
Intentionally missed dose by Medication
25
21
20
percent
10 15
7
5
0
KI
nib
T
ati
en
im
dg
2n

16. Adherence reminders
 21.5% of patients missed a medication dose accidentally
• Of these, the vast majority (87.5%) said that they
just forgot to take the medication
 But: Most patients don’t like reminders:
• 92% won’t use email reminders
• 83% won’t use phone call reminders
• 76% won’t use alarm or mobile phone reminders.
■ Patients don’t want to be reminded on daily basis
that they are sick!

17. Conclusion
 Patients do not want to be patients.
Daily drug taking reminds them that they are sick.
 "This is cancer! Of course my patient is taking his
medicine" is mostly a misled assumption.
 Survey: Non-adherence mechanisms vary largely
• by intention or "accident"
• by the drug (2nd vs. 1st generation TKI on CML)
• by country
 Our future plan: Extensive international survey in 2011

18. Return to adherence
is a team work
 Patients can’t solve their non-
adherence alone!
 Adherence is team work:
1) Patients
2) Patients advocates
3) Physicians
4) Nurses
5) Psyco-oncologists
6) Pharmacists
 Patient groups and MDs are
partners working for the same
cause!

20. Thank you!
Giora Sharf
CML Advocates Network
giora@cmladvocates.net