Professional Documents
Culture Documents
Advocacy
Toolkit
A Practical Guide for Advocates to
Improve Access to Quality Polymerase
Chain Reaction Testing for People Living
With Chronic Myeloid Leukemia
Contents
Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Abbreviations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Additional Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
2
Acknowledgments
This Toolkit was made possible by the contributions and insights from My PCR partners and collaborators worldwide. This initiative was made possible
by the following My PCR sponsors:
Overall Guidance and Direction:
Kathy Redmond, Pat Garcia-Gonzalez, Erin Lindsay Schneider, Andrian Rakhmatsyah, Ferdinand Mwangura, Param
Puthen, Mercedes Arteaga, Heng Yee Jia, Mei Ching Ong, Viji Venkatesh, Ameya Surve, Sudha Samineni
Premium Sponsor
Special thanks to the My PCR partners:
Asociacin Leucemia Mieloide Argentina Argentina CML Patient Association Armenia Rising Sun Asia Pacific
Region Associao Brasileira de Linfoma e Leucemia ABRALE Brazil Groupe dAppui aux Survivants du Cancer
Novartis
Burkina Faso AMACAS Cameroon CML Society of Canada Canada Maxi-Vida Chile Shanghai Roots & Shoots
China Fundacin Colombiana de Leucemia y Linfoma Colombia Fundacin Esperanza Viva Colombia Fundacin
Esperanza Viva Colombia AGALEMO Costa Rica CML Civic Association, Diagnoza CML Czech Republic Un Paso
Max Dominican Republic Esperanza y Vida Ecuador Can Survive Egypt Amor a la Vida El Salvador Ethiopian
CML Foundation Ethiopia Mathiwos WonduYeEthiopia Cancer Society Ethiopia Leucmie Mylode Chronique Major Sponsor
France Chronic Myeloid Leukemia Advocates of Ghana The Alliance of Chronic Myeloid Leukemia Patient of
Georgia Georgia ASOPALEU Guatemala Asociacin Hondurea de Lucha contra el Cncer Honduras Friends of
Max India Himpunan Masyarakat Peduli Indonesia ELGEKA West Java Indonesia YKI Jakarta Indonesia Israeli
Ariad
CML Patients Organization Israel Gruppo AIL Pazienti Leucemia Mieloide Cronica Italy Association of Patients
with Hemoblastoses Kazakhstan Henzo Kenya Zero Club CML Korea Korea Blood Cancer Association Latin
American Leukemia Net Latin America Region CML Group Lebanon Association Fanomezana LMC Madagascar
Bristol-Myers
Max Family Malaysia Association Leucmie, espoir Mali AMELEG Mexico Grupo Unido de Leucemia A.C. Mexico
Manitas la Pulsera de Leucemia Mexico Association des Mlades Atteints de Leucmies Morocco Stichting
Squibb
Hematon Netherlands Alas de Vida Nicaragua Association de Lutte Contre les Leucmies Niger MaxCare
Nigeria Patients Friends Society-Jerusalem Palestine Funca Paraguay Luz de Esperanza Peru Esperantra Peru Pfizer
Touched by Max Philippines Polish Association for CML Patients Aid Poland Associao Portuguesa Contra a
Leucemia Portugal CML Association of Serbia Serbia Crusaders Club Ministry Sierra Leone A.G.I.L du Sngal
Lymphoma and Leukemia Patient Association Slovenia CMLSA South Africa People Living with Cancer South
Africa Taiwan Bone Marrow Transplant Association Taiwan Tanzania CML Patient Group MaxSmiles Thailand
Udon CML Supporting Group Thailand Association for Health Promotion and Social Well-Being in Togo Leukemia Supporting Sponsor
& GIST Advocacy Fraternity of Uganda Osanna, Association of Chronic Myeloid Leukemia Ukraine CML Busters
USA CML Support United Kingdom International CML Foundation United Kingdom The Leukemia & Lymphoma
Society USA National CML Society USA The Max Foundation USA Uzbekistan CML Patients League Uzbekistan
Cepheid
ASAPHE Venezuela Maxs Vie Vietnam CML Zimbabwe
3
Glossary
Activism use of action or involvement to achieve political or social change
Advocacy an activity that is used to gain public support for a particular cause or policy
Chromosome an organized structure found inside of the cell nucleus that contains genetic information in the
form of genes
Deoxyribonucleic acid (DNA) a molecule that carries genetic information in the cells of living organisms
European LeukemiaNet a research network funded by the European Union with a goal of curing leukemia
Gene a segment of DNA that is transferred from a parent to offspring and determines some characteristics of
the offspring
Lobbying the act of attempting to influence leaders, such as politicians or public officials, on a particular issue
Policy a plan or procedure of action adopted or proposed by a government, party, business, or individual
Polymerase chain reaction a laboratory technique used to make multiple copies of a piece of DNA
Progression-free survival the length of time during and after the treatment of a disease that a patient lives with
the disease but it does not get worse
National Comprehensive Cancer Network a network of cancer centers in the United States that is
focused on improving the quality of cancer care
4
Abbreviations
BCR-ABLIS, BCR-ABL transcripts measured on the International Scale LDT, laboratory-developed test
CCyR, complete cytogenetic response MMR, major molecular response
CF, conversion factor NCCN, National Comprehensive Cancer Network
CML, chronic myeloid leukemia PFS, progression-free survival
DNA, deoxyribonucleic acid PCR, polymerase chain reaction
ELN, European LeukemiaNet Ph+ CML, Philadelphia chromosomepositive chronic myeloid luekemia
IRIS, International Randomized Study of Interferon vs STI571 TB, tuburculosis
IS, International Scale TKI, tyrosine kinase inhibitor
5
Introduction
What is the My PCR initiative? Who can benefit from using this toolkit?
My PCR (MyPCR.org) is a community-driven initiative conducted in partnership with The PCR Advocacy Toolkit is for advocates who want to campaign for better
chronic myeloid leukemia (CML) patient advocacy organizations around the world. It access to quality PCR testing for patients with CML in their communities. It is a
is designed to raise awareness among people living with CML, caregivers, advocates, tool for those who wish to develop a deeper understanding of the subject area
and physicians about the importance of regular, standardized CML diagnostics and and of how to create a successful advocacy strategy.
monitoring. Our partners share a common mission to educate their communities
about the importance of PCR testing and improve access to PCR testing for people
living with CML.
How can one make the most of this toolkit?
There is no one way to conduct advocacy, and ones approach to advocacy will
Why a PCR advocacy toolkit? vary widely depending on local political and social context and access needs.
This toolkit is a practical guide to help advocates understand PCR testing and
As a community-driven initiative, My PCR seeks to provide resources that adapt the suggestions in the toolkit to implement an advocacy strategy that
address needs identified by the CML community. The My PCR partners makes sense within a local context. It is divided into 2 sections. Section I provides
expressed a need for clear and simple educational resources about how to background information about PCR testing in the diagnosis and management
advocate effectively for access to PCR testing. In response to this request, of CML. Section II provides guidelines and tools for developing an advocacy
My PCR initiated the process of creating the My PCR Advocacy Toolkit. The strategy. Readers can also access additional information on related topics at the
content in this toolkit was generated through an iterative co-creation process end of the toolkit.
that involved feedback from the CML community and strategic guidance from a
steering committee composed of partner advocates from Asia, Africa, South and
Central America, and North America.
6
About PCR
SECTION
PCR Testing: Why is it important
1 in the management of CML?
Understanding CML1,2
Philadelphia chromosomepositive chronic myeloid luekemia (Ph+ CML) is a cancer of the white blood cells that is associated with an
abnormal chromosome. A chromosome is an organized structure found inside a cell that contains genetic information known as DNA.
The abnormal chromosome is called the Philadelphia chromosome. Ph+ CML is caused by BCR-ABL, an abnormal fusion gene that is
formed when a piece of chromosome 9 and a piece from chromosome 22 swap places. The abnormal BCR-ABL gene creates a protein
called BCR-ABL. The BCR-ABL protein causes changes in cells that lead them to become cancerous.
7
About PCR
SECTION
PCR Testing: Why is it important
1 in the management of CML?
What is PCR?
PCR stands for polymerase chain reaction. It is a blood test used to diagnose CML and to measure the response to treatment in
patients who are on tyrosine kinase inhibitor (TKI) treatment. PCR is not only used in CML; it is also used in other conditions and is
generally one of the most accurate ways to detect the presence of a substance. For example, PCR testing can detect anthrax on a
mailed letter or evidence of a specific virus in a person after bone marrow transplant.
8
About PCR
SECTION
PCR Testing: Why is it important
1 in the management of CML?
+++
+++++
+++++
Accurate Accurate Precise
but not precise and Precise but not accurate
(the average is accurate)
Despite its importance for people living with CML, many patients do not have Efficiency the ability to perform well without wasted resources
appropriate access to PCR testing. The primary challenges are that (1) PCR testing
requires expensive diagnostic equipment that is not available in all countries, (2) not
9
About PCR
SECTION
PCR Testing: Why is it important
1 in the management of CML?
all physicians are properly trained on PCR testing for CML patients, and (3) many and make informed decisions.4 Regular PCR testing will give physicians the
CML patients do not understand what PCR testing is and why it is so critical to information they need to decide whether a patient is responding effectively to
their health. their treatment and whether or not it is necessary to change treatment to better
treat the disease.
PCR testing is important for patients with CML because it can be used to diagnose
the disease and also to evaluate how well a patients treatment is working. By Other tests are available for patients with CML, such as a bone marrow test. Links to
monitoring the level of BCR-ABL over time, a physician can compare results additional resources on bone marrow tests can be found at the end of this toolkit.
Baseline 3 Mo 6 Mo 9 Mo 12 Mo 15 Mo > 18 Mo
The ELN has recommendations for achieving certain treatment goals, or milestones, at different times after starting treatment for CML.
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About PCR
SECTION
PCR Testing: Why is it important
1 in the management of CML?
The log scale is a way of looking at values that uses factors of 10 in order to
show very large differences in numbers on a smaller scale.
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About PCR
SECTION
PCR Testing: Why is it important
1 in the management of CML?
Commercially available kits Higher cost Defined protocols and robust Compatible with multiple platforms High level
validation by the manufacturer
Automated systems Highest cost Independently validated Specific instrument required Lower level
(eg, GeneXpert)
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Advocacy
SECTION
Advocating for PCR Testing:
2 Tips for Implementing a Successful Campaign
1 2 3 4 5 6
What is advocacy?
Advocacy is an activity carried out to gain public support for a particular cause or policy. A human rights approach to advocacy focuses on
the rights of patients, barriers to the enjoyment of those rights, and the ways in which the actions of individuals in power influence
these barriers. Advocates seek to influence individuals in power to break down the barriers.
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Advocacy
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Advocating for PCR Testing:
2 Tips for Implementing a Successful Campaign
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Advocacy
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Advocating for PCR Testing:
2 Tips for Implementing a Successful Campaign
Before establishing an advocacy goal, you should research several key questions to of the patients in each community. For example, goals could include educating
help understand PCR testing in your area. Some key questions include: patients, educating the community, or campaigning to bring an instrument to a local
laboratory.
Is PCR testing available anywhere in the country, and if so:
After establishing a goal(s), its important to assess available resources (eg, financial
Where is it available?
resources) and create objectives that are realistic. Objectives are specific and
Are there gaps in access due to the geographical location of the machines? measurable steps that can be taken to achieve the advocacy goal. The specific
What types of instruments are used for testing? objectives of the campaign should be SMART:
What is the quality of the PCR testing, and is the laboratory on the IS? Specific
1 2 3 4 5 6
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Advocacy
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Advocating for PCR Testing:
2 Tips for Implementing a Successful Campaign
3 Map your stakeholders Advocacy Case Study, Step 3: Map your stakeholders
Stakeholders are the individuals and/or organizations that are interested in your After establishing your goals and objectives, you identify your key stakeholders as follows:
advocacy efforts and/or have the power to help make your efforts successful. Its Encourage and influence: lab technician, hematologists, manufacturer of PCR machine
and BCR-ABL tests
important for advocates to understand the roles of the different stakeholders they
are engaging, whether they are decision makers, facilitators, potential partners and Keep informed: patients and caregivers
allies, or potential opponents of change. One way to understand this landscape is Keep satisfied: The Max Foundation
to perform a stakeholder analysis. A stakeholder analysis is a qualitative method Monitor: hospital administrators
used to gather information to help identify and understand needs of different
stakeholders.
Using a stakeholder map is a way to break stakeholders into different categories Once the different stakeholders have been identified and prioritized, its time to
based on several factors, including their knowledge of the policy area, levels of plan when and how different stakeholders will participate in the projects.
influence (primary stakeholders have a direct interest, while secondary stakeholders
Engaging with a constituency, or a group of supporters, and creating partnerships
have an indirect interest), beliefs regarding the issue (whether they are supportive
is important. A variety of partners can strengthen a campaign and increase reach.
or not supportive of the issue), and ability to mobilize resources. Some examples
After identifying and engaging potential partners, you can work together to define
of stakeholders are Ministries of Health, hospital administrators, patients and
possible areas of collaboration. When establishing partnerships, several steps
caregivers, physicians, companies that provide donations or services to your
should be taken to help avoid potential pitfalls:
organization, and laboratory technicians.
Make sure to be as clear about the issue as possible so that everyone is on the
After identifying all relevant stakeholders, a stakeholder prioritization grid can
same page and clearly understands the goals and objectives of your advocacy
be used to determine the best way to engage with each of the stakeholders by
efforts
classifying them by their influence
over and interest in the campaign. Clearly define the roles and expectation of each of your partners so that everyone
Influence indicates the ability of a understands how best to maximize their impact
Encourage stakeholder to impact a goal, while
Keep
satisfied and interest indicates how concerned a Periodically assess progress by holding meetings or phone conferences
influence stakeholder is about a particular goal.14
Influence
Keep
Monitor
informed
Interest
1 2 33 4 5 6
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Advocacy
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Advocating for PCR Testing:
2 Tips for Implementing a Successful Campaign
After an advocacy goal has been established, key messages should be developed. To the laboratory technician: The message you present to the laboratory techni-
cian should be scientific in nature and should come largely from the company that
These messages should provide a short summary of your advocacy goal and produces the BCR-ABL tests. A company representative who is trained in running
BCR-ABL tests will best be able to speak to the laboratory technicians concerns.
should be tailored for the different audiences that you will be engaging. Messages
should describe why your advocacy goal is important. Messages will have to be To the hematologists: In this case, the hematologists are already eager to improve
access to PCR testing for their CML patients. Your message to the hematologists
repeated often and should be consistent. needs to clearly convey what you need from them in order to make that dream a re-
ality (eg, the development of an affordable fee schedule for patients that will secure
When delivering messages, identify specific characteristics of the audience, and the procurement of future tests, and internal advocacy to the hospital administrators
and TB laboratory technicians to encourage collaboration in this effort).
focus the messages to that audience. Consider the audience and think about the
To the manufacturing company: To this stakeholder you would convey the need
best medium to use when sending the messages. in your country (number of patients) and then explain the potential access pathway
that you have identified through a possible collaboration with the TB laboratory.
You would conclude your message with a request for a training session with the
laboratory technician locally.
Example messages for targeted audiences: To patients and caregivers: Your message should clearly and simply articulate the
importance of PCR testing in the monitoring of CML. It should also inform patients
about the possible access pathway, transparently conveying that a small fee would
Ministries of Health and Government officials: be collected to ensure the sustainable procurement of tests. This messaging should
Consider creating an economic argument for your advocacy goal. Governments come from both physicians and patient advocates.
work within the confines of a limited budget and are often most concerned with
To The Max Foundation: It is important that you keep The Max Foundation
how cost effective a treatment or diagnostic test might be. informed on the progress of both the TB laboratory collaboration and the devel-
opment of the pricing plan. Doing so will inform them of whether you are ready to
Hospital Administrators: receive a starter donation of BCR-ABL tests.
Consider creating an argument for the safety and affordability of your advocacy To the hospital administration: If the hospital administration is not closely
goal, as well as the health benefits that it will bring to patients. Hospital involved in the decision making of the TB laboratory, your messaging may be as
administrators are concerned with cost as well as the quality of the treatments simple as keeping them informed on the progress of the advocacy through the
hematologists. If the hospital administration is more engaged, you should convey to
their facilities provide. them the benefits that access to PCR testing brings to CML patients, with a focus on
patient outcomes and adherence to ELN guidelines.
Physicians:
Make sure that your physicians have access to the scientific research supporting
the use of quality PCR testing in the diagnosis and monitoring of CML. They will
want to understand the research related to PCR as well as the guidelines for
proper testing to ensure the best possible outcomes for their patients.
1 2 3 44 5 6
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2 Tips for Implementing a Successful Campaign
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5 6
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Advocating for PCR Testing:
2 Tips for Implementing a Successful Campaign
Use Social Media17 A press release should be localized and adapted for the audience. Press releases
should be short and simple and should ideally focus on 1 key message.
Social media are web-based applications that can
be used to build networks and share information The best way to secure media attention is to learn about different types of
with large groups of people. There are several media and to decide which types of media will provide the best access to
advantages of using social media in advocacy. your audience. The next step is to identify different journalists who report
Using social media sites is a useful way to on the issue that you focus on and compile their
reach mass audiences and can be a good contact information. Reach out to different journalists
route for getting into mainstream media. to establish relationships with them.
Social media have several uses in You can establish a spokesperson who can speak
advocacy, including raising interest about to the media on behalf of your campaign. A
an event or developing an online community spokesperson should be articulate, well
with which to engage. Developing a strategy informed about the issue, and familiar with
for use of social media is a helpful way to stay your messages.
organized and ensure that you are reaching the right audience.
Host an event
Choose the best social media platform, such as Facebook or
Twitter, to spread your message and achieve your goal. Different When planning an advocacy event, there are several
social media platforms have very different user demographics. In order to factors to consider in order to raise awareness of the event.
have the greatest impact, determine which platform or platforms will reach Factors to consider when planning an advocacy event include15:
your intended audience and consider some tips for using Facebook and
Twitter for advocacy. WHO? D
ecide the audience for the event (eg, influential local business
leaders)
Facebook Twitter
Keep it short Use hashtags
WHERE? After identifying the audience and the number of attendees, find a
Make it visual with photos/images Tweet regularly
Post regularly Use images venue that can accommodate everybody
WHEN? Timing of the event is important for attracting the right audience
Engage the media 18
WHY? E
nsure that the goals of the event are clearly articulated to the
Media coverage is a valuable way to increase awareness or change public attendees in a way that is relevant to them
opinion about an advocacy issue. Media engagement can involve press releases,
press conferences, or interviews. Regardless of the type of media, it is important to WHAT? Ensure that attendees understand the message by preparing a talk
define your story. The story should be relevant to the audience and should include or printed materials that attendees can take with them; ensure that
new or interesting information to get their attention. Putting a human face on the printed materials include contact information so that attendees can
issue can make the story more emotionally engaging for an audience. follow up after the event
1 2 3 4 5
5 6
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6
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Additional resources
Preferential Pricing for GeneXpert IV System and Xpert BCR ABL Assay through The
Max Foundation - Cepheid Collaboration Agreement:
https://www.themaxfoundation.org/what/treatment/genexpert/
Guidelines for Setting Advocacy Priorities:
http://www.pathfinder.org/wp-content/uploads/2016/10/Straight-to-the-Point-Setting-
Advocacy-Priorities.pdf
Guidelines for developing messages for stakeholders:
http://www.endvawnow.org/en/articles/1235-key-steps-in-designing-a-
communications-strategy.html
Additional Information about Stakeholder Analysis:
http://thepressuregroup.org/wp/wp-content/uploads/2014/12/Mini-Guide-4-
Stakeholder-Analysis.pdf
Social Media Guidelines:
http://www.aauw.org/resource/how-to-use-social-media-for-advocacy/
Press Release Template for Nonprofit Organizations:
https://berkleycenter.georgetown.edu/essays/how-to-write-a-non-profit-press-
release
My PCR Downloadable FAQs:
http://mypcr.org/frequently-asked-questions/
Patient Friendly ELN Guidelines:
http://www.cmladvocates.net/education/eln-recommendations
The CML Guide for Patients and Caregivers:
http://www.lls.org/sites/default/files/file_assets/cmlguide.pdf
International Scale PCR Webinars:
http://www.whereareyouontheis.com/BCR-ABLWebinar.aspx
International Scale PCR FAQ for Physicians:
http://www.whereareyouontheis.com/Default.aspx
21
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My PCR is facilitated by The Max Foundation. For questions,
contact us at news@themaxfoundation.org.