SCOPH Stem Cell Donation Toolkit 2017/18

STEM CELL DONATION - Toolkit -

Imprints Contributors Mohammed Al Ayoobi (Iraq) Mohsna Bhiri (Tunisia) Roshit Bothara (New Zealand) Aikaterini Dima (Greece) Ahmed Elshaer (Egypt) Ximena NuĂąez (Ecuador) Aqsa Shafique (Pakistan)

Cover Design Stijntje Dijk (The Netherlands) Layout Design Dhiya Khoirunnisa (Indonesia)

Contact Us

eb@ifmsa.org

Contents

Introduction and Objectives?

Page 1

What Are Hematopoietic Stem Cells Page 2

What Is Stem Cell Transplantation?

Page 2

What Are The Benefits of Stem Cells?

Page 3

Sources of Stem Cells Page 4

Who Can Donate?

Page 5

www.ifmsa.org

How Does Donation Work?

Page 6

Public Health Aspects of Stem Cell Donation Page 10

Guide on Starting A Stem Cell Donation Activity Page 14

What You Can Do on Stem Cell Donation Page 16

Previous Activities and Success Stories Page 19

Advocacy Guide Page 23

Before reading this document, I would like you to kindly answer the FORM in the link, and answer it again after reading the document, in order for us to evaluate the impact we are doing.

Thank you

Welcome Message

Dear IFMSA members worldwide, Donation is one of the most important medical advances in recent history. It allows patients with critical and incurable conditions to have a prolonged and a better quality life thanks to help from donors.

This manual focuses on Haematopoietic stem-cell donation, first scientifically to give you an insight and more knowledge about it, then from a public health perspective to show you different issues and challenges facing successful and sustainable stem-cell donation, and to provide you with solutions and support to initiate and improve activities on it.

Please let us know if we can support your work in any other way Orange Hugs,

Saad Uakkas PC on organ, tissue and marrow donation 2017- 2018

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What Are Hematopoietic Stem Cells?

Hematopoietic Stem cells (HSC) are the “parent� cells from which all other blood cells (red blood, platelets and white blood) develop. These are mainly found in the Bone marrow, the factory that produces stem cells. Bone marrow is a soft tissue inside bones like the breastbone or hip bone.1

What Is Stem Cell Transplantation?

Hematopoietic stem cell transplantation involves the intravenous infusion of stem cells collected from bone marrow, peripheral blood, or umbilical cord blood to re-establish blood cell production in patients whose bone marrow or immune system is damaged or defective.2 A stem cell transplant may be autologous (using a patient’s own stem cells that were collected and saved before treatment), allogeneic (using stem cells donated by someone who is not an identical twin), or syngeneic (using stem cells donated by an identical twin) We will be focusing on allogeneic transplant in this manual.

Hematopoietic Stem Cells, Peter Quesenberry, M.D., and Lee Levitt, M.D. N Engl J Med 1979; 301:868872 2 Medscape, Hematopoietic stem cell transplantation, updated 31 March 2014, accessed 18 November 2017 1

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What Are The Benefits of Stem Cells ?3 The Hematopoietic stem cells – or blood-forming stem cells – will help the body rejuvenate the blood supply with new, healthy cells when injected into the bloodstream of patients Hematopoietic stem cells have been used successfully to treat more than 80 different diseases2 including : • Malignancies: 45 • Non-Hodgkin lymphoma.

• Leukaemia • Multiple myeloma.

• Bone marrow failure:6 when BM doesn’t produce the cells it should.

• Haemoglobinopathies:7 (red blood cell formation disorders) • Sickle cell anaemia • Thalassaemia.

• Immunodeficiencies: when the immune system doesn’t work properly.

• Severe combined immunodeficiency • Other genetic immunologic disorders • Metabolic disorders: these affect the breakdown of waste products in the body.

• Adrenoleukodystrophy • Hurler syndrome • Metachromatic leukodystrophy • Help recover from chemotherapy.

Gratwohl A, Baldomero H, Aljurf M, Pasquini MC, Bouzas LF, Yoshimi et al. Hematopoietic stem cell transplantation: a global perspective. JAMA 2010; 303: 1617–1624 4 Laughlin, M. J., Eapen, M., Rubinstein, P., et al. (2004). Outcomes after transplantation of cord blood or bone marrow from unrelated donors in patients with leukemia. The New England Journal of Medicine, 351, 226–2275 5 Krivit W, Shapiro EG, Peters C, et al. Hematopoietic stem-cell transplantation in globoid-cell leukodystrophy.

N Engl J Med.1998;338 :1119– 1126 6 Yoshimi A, Baldomero H, Horowitz M, Szer J, Niederwieser D, Gratwohl A, Kodera Y, For the Worldwide Network of Blood and Marrow Transplantation (WBMT). Global Use of Peripheral Blood vs Bone Marrow as Source of Stem Cells for Allogeneic Transplantation in Patients With Bone Marrow Failure.

JAMA.2016;315(2):198–200. doi:10.1001/jama.2015.13706 7 Ruggeri A, et al. Umbilical cord blood transplantation for children with thalassemia and sickle cell disease.

Biol Blood Marrow Transplant. 2011;17(9):1375–82.

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Sources of Haematopoietic Stem Cells

Stem cells are found in bone marrow, peripheral (circulating) blood and the umbilical cord blood.

Bone Marrow

Bone marrow is the spongy tissue inside some of the bones in the body, including the hip and thigh bones. Bone marrow contains stem cells.

Peripheral Blood

The same blood-forming cells that are found in bone marrow are also found in the circulating (peripheral) blood.

Umbilical Cord Blood

Cord blood is the blood that remains in the placenta and umbilical cord following the birth of a baby. It is rich in hematopoietic stem cells (HSC), similar to those found in bone marrow and peripheral blood. They are of fetal origin.

Unlike the other two methods, stem cells in cord blood are immunologically immature and less likely to result in immune-based reactions in the recipient.

The main advantages of using UCB for HSC transplantation is ready availability, quick search and procurement process, safety, pain- and riskfree to the donors, long-term preservation, low risk of viral contamination and lower immunogenicity. 89 The major disadvantage is cost of procurement and slower recovery post transplant.

http://dx.doi.org/10.1016/S1701-2163(16)30520-5 Rocha V, et al. Comparison of outcomes of unrelated bone marrow and umbilical cord blood transplants in children with acute leukemia. Blood. 2001;97(10):2962–71.

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Who Can Donate?

Bone marrow /Peripheral Blood Stem Cells 11 Once you register to donate, your name is added in a national and international list of potential donors, a donor stem cell registry. Potential donors must be healthy and between the ages of 18 and 60 (although some registries have a lower upper age limit. If matched with a person needing a transplant, the donor is then called and retested: • People who can donate : All infection-free people, and most people taking medications as long as they are healthy and any medical conditions they have are under control at the time of the donation. • People who cannot donate bone marrow: Pregnant women, users of intravenous drugs that are not prescribed by a doctor, people who have had a positive blood test for Hepatitis B or Hepatitis C, and those with specific medical conditions, such as most types of cancer or certain heart conditions. • People who should wait at least a year before donating bone marrow.

People with Lyme disease, malaria, or recent tattoos or piercings

Cord blood There is no age limit for cord blood donation. Any expecting mother can donate, as long as there are no disqualifying medical conditions. Those conditions include active cancer and certain infectious diseases.

A questionnaire and a simple blood test will be performed to ensure that there is no risk of transmitting infectious diseases to the recipient.

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Credit to http://www.teresewinslow.com/index.asp National cancer institute

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How Does Donation Work?

A. For

The Donor

Bone Marrow Bone marrow donation is a surgical procedure, carried out in the operating room, which requires anesthesia and is, therefore, completely painless during the procedure. The entire procedure takes between 1 and 2 hours.

The procedure occurs with the person lying prone. The doctors will make a small incision over both sides of the pelvic bone. They then insert special, hollow needles into the bone, through which they draw the liquid marrow After donation, bone marrow replaces itself within four to six weeks.

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Peripheral Blood Stem Cells (PBSC)2 Before a person can donate PBSC, they will need to undergo daily injections of a medication called filgrastim in the five days running up to the procedure. This medication draws stem cells from the bone marrow, so the donor will have more of them circulating in their blood.

Donating PBSC involves a procedure known as apheresis. This is when blood is taken from the body using a catheter inserted in one arm and passed through a machine, filtering out the stem cells, along with platelets and white blood cells. The remaining blood (consisting mainly of plasma and red blood cells) then flows back into the body through a vein in the other arm.

The procedure is completely painless and is similar to donating plasma.

PBSC donation will usually require between 2-4 sessions, each lasting 2-6 hours.

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Cord Blood11

Step 1. Clamping and cutting the cord After baby delivery, whether vaginally or by Caesarian section, the cord is clamped and then cut in the usual way Step 2. Extracting the cord blood A needle is then inserted into the umbilical vein on the part of the cord that’s still attached to the placenta. The blood drains into a collection bag. Typically, 50-150 ml are collected. The entire process takes less than 10 minutes.

Step 3. Off to the bank!12 The blood is shipped to a cord blood bank, where it’s tested, then processed by removing the red blood cells and plasma, and cryopreserved13 (preserved by controlled freezing) for long-term storage if deemed acceptable according to quality standards.

Cord blood banking is the term for storing a cord blood unit in a medical facility. Over a million units are stored in private banks, with another 700,000 registered in public facilities around the world.14

Ballen K. Challenges in umbilical cord blood stem cell banking for stem cell reviews and reports. Stem Cell Rev. 2010;6(1):8–14.

13 Mugishima, H., Harada, K., Chin, M., Suzuki, T., Takagi, K., Hayakawa, S., Sato, K., Klein, J.P. & Gale, R.P.(1999) Effects of long-term cryopreservation on hematopoietic progenitor cells in umbilical cord blood.

Bone Marrow Transplantation, 23, 395–396 14 https://doi.org/10.1007/978-3-319-53628-6_2 12

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Parents have several options available to them, depending on where they live and what they can afford. The two major choices for cord blood banking are: 15 1. Private banking, which gives the parents exclusive access to their child’s stem cells. As long as the annual fee is paid, only the family will have access to these cells, and can use them in any future medical treatment. There si considerable debate about the value of such commercial storage.

2. Public banking, which means the family donates their child’s stem cells to a registry. The blood is registered in the stem cell registry and shared in the international database. healthcare professionals use this database to search for a suitable match for a patient who needs a stem cell transplant.. Researchers may also use the donating stem cells for clinical trials and experimental treatments.

B. For The Patient

Stem cells are infused through a central vein through an IV tube. After entering the bloodstream, the hematopoietic stem cells migrate to the bone marrow, where they begin to produce new white blood cells, red blood cells and platelets in a process known as engraftment. Engraftment usually occurs 2 to 4 weeks after transplantation. 16 Doctors evaluate the results of various blood tests to confirm that new blood cells are being produced.

Sullivan MJ. Banking on cord blood stem cells. Nat Rev Cancer. 2008;8(7):555–63.

National Cancer Institute, Bone marrow transplantation and peripheral blood stem cell transplantation, accessed 18 November 2017.

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Public Health Aspects of Stem Cell Donation

Stem cell donation is a modern public health solution to many incurable diseases. But currently, many barriers are standing against universal and equitable access for it. This is why we should work on tackling those barriers in order to ensure a higher number of donors and better donation condition, so that for patients to benefit from this emerging new way of treatment.

Let’s take a look at some of the major issues that should be tacked in stem cell donation: 17

Government Commitment and Support In many countries we find no stem cell banks or registries, or have one made by an organization or by health professionals, but without support from government.

The commitment and support of the government to an effective national stemcell program is a prerequisite for ensuring sustainable stem-cell donation in the country. Without concrete recognition of Stem-cell transfusion as an integral part of the healthcare system, the needed infrastructure and the human and financial resources are unlikely to be provided. Effective plans are needed to demonstrate the direction and steps that the government will take to achieve sustainable Stem-cell donation.

The key is: to raise your voice and advocate for the topic with other partners, to push the government to give more priority for it.

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Towards 100% Voluntary Blood Donation: A Global Framework for Action. WHO 2010

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Financial Resources Stem-cell collection, banking and transplantation require special materials and technical resources. Those cannot be afforded without financial resources.

Lack of financial backing is a challenge facing stem cell donation is facing in many countries.

The key is: work with partners and government to raise and allocate more funds for it.

Trained Staff Stem-cell donation is relatively a new field, and many countries still lack trained health professionals and staff able to work and deal with it. Ensuring well-trained human resources is one of the main pillars for a sustainable stemcell donation. This includes not only doctors but a multi-disciplinary team.

The key is: Focus on offering capacity building for health professionals about it, both short and long term, try collaborating with other countries that are more advanced with the topic

Lack of awareness Many people are not aware of the existence of stem-cell donation, and of its potential lifesaving uses. Many others know about it but they lack awareness on how to donate. As it is a new topic, promotion and raising awareness are essential to ensure more donors.

The key is: raise people’s awareness on it, talk to them and spread the message, show why it is important and how it can be done.

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Misconceptions about donation Many people don’t make the difference between organ and stem-cell donation, or think that it requires a complicated surgical operation. Some say that they are not healthy enough to donate because of their lifestyle choices, or that they are too old to donate. Others think that there is enough people donating so there is no need for them to do so. Those and other misconceptions tend to push people away from donating. Educating people will make them have clearer ideas and better understanding of the process of donation. This will make them more likely to donate.

The key is: Correct those false ideas, by spreading the right messages, and interacting with people to correct their beliefs

Fear and mistrust One of the main reasons why people refuse to donate is their fear and insecurity about the process of donation, and also their mistrust to donation facilities and the medical system in general. Without trust in its integrity and efficiency and the safety of its procedures, few people would choose to donate their stem-cells. This trust is earned over a long period of time but can be undermined very quickly.

The key is: Focus on offering quality services to the population to gain their trust.

Difficulties finding matched donors for racial/ethnic minorities18 One barrier to matching potential donors with those in need of a transplant is the fact that patients’ racial and ethnic minorities often have less common types of human leukocyte antigens (HLAs, protein markers found on immune system genes that determine the compatibility of the donated cells). Those minorities are also less likely to donate compared to other people, which makes it challenging to find matching donors for patients from minorities.

The key is: Focus on those minorities, and encourage them to donate.

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DOI: 10.1053/bbmt.2001.v7.pm11215698

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Donor communication strategies The issue of effective donor communication strategies and educational materials is closely linked to the issues of budgets and staffing. Even if a stem-cell donation system is established and well-functioning, only the most dedicated donors will donate unless they are encouraged to do so. This requires time and money.

Without information, most people will simply remain unaware of the stemcell donation service and the need for stem-cell donation. Without education and motivational activities, few will be sufficiently self-motivated to find out how they can donate their stem-cells. Communication is also the key to solve mistrust and misconceptions about donation. It is at the core of a successful and sustainable voluntary stem-cell donor program. It transcends all areas, not only donor information and education, including advocacy and relationships with stakeholders.

Religious aspect19 As stem-cell donation is a relatively new topic, Many religions still don’t have a clear statement about it. It is also important to note that most of religions in the world encourage people to save lives, and many religious leaders have stated that it is allowed in their religion. While some others have different opinions about it.

Religious organizations and leaders need to be acknowledged as important stakeholders and included in the conversation to define and navigate these issues just as much as bioethicists and policy makers.

The key is: talking about the religious aspect with people and clarifying it for them, also have religious organizations and leaders to your side to help you spread the word.

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DOI: 10.5966/sctm.2014-0092

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Starting A Stem Cell Donation Activity This is just a short guide, Make sure to check IFMSA new MANUAL on Project and Activity management.

Provided here is a rough guide for where to start if you need some help:

1.

Research! Get to know what your country thinks of stem cell donation, and if there are any donation registries or banks in your country.

2.

Does your NMO use policy? If so, producing a policy on stem cell donation will give you encouragement and a directive to address the issue. If not, summarising your local problem in some form (such as a document) will be worthwhile for future use. This will also provide you with an opportunity to use your research and educate your peers on the issue, so they can hopefully agree with how important it is!

3.

Choose, or brainstorm a starting project to work on (or series of projects) - some examples are listed later in this document!

4.

Put together a 1 page summary of your starting activity, including its aims, goals and target audience. This will make sure that anyone who wants to get involved is clear your vision and objectives.

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5.

To get people interested, some education on the topic to interested individuals might be worthwhile. This can help when building a group of people to help with your activity! This can be done anywhere - at your university, online, at a national assembly, to spread the message

6.

7.

8.

Advertise for a team to help run your activity.

Set a date for your activity - this will help you form a timeline for developing the rest of your activity/ies.

Form a plan, follow it, and iterate as you go along!

9.

Advertise your work and about the problem of mental health blog posts, media releases, Facebook posts are all ways to get the word out. The more people who are aware of what you are doing, the more exposure and interest you will get with every activity!

your activities, both in terms of what you do and what 10. Expand regions you run it in. Find what works well and see if you can replicate its success in other places! Eventually you will have a network of educated, passionate individuals, running a lot of activities on stem cell donation!

Examine what you do each year and what you would like 11. Improve! to improve on. Are you using advocacy in your campaign? Is your project reaching every region? Make sure you are constantly updating your goals.

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What You Can Do For Stem Cell Donation 1. Educate and share knowledge about it Choose a specific target group, and think of the best ways to gather them, grab their interest and educate them.

• You can use Movies, quizzes, theatrical pieces, videos, conferences, music, infographics, games, humor, presentations…

• When you gather people in your event to educate them, plan for the next step that is: • Encouraging them to donate. Try to bring the donation registry and have people to register, if not then refer them to where they can register as donors • Ask them to spread this knowledge in their surroundings. Remember to start with student and especially medical students as they are more accessible and easier to educate.

2. Capacity building about it To develop knowledge, skills and techniques in the field because having health professionals that are proficient in the topic is one of the key factors to advance with it.

• Organize events for medical students, doctors and specialists, with workshops, trainings.

• Create and disseminate a course on donation to medical schools for integration in the curriculum • After educating medical students, encourage them to be peer educators and go educate other students.

HERE you can find if your country has an organization working on stem cell donation.

CL

ICK

!

HERE you can find if your country has any Cord Blood Banks, it shows Private and Public ones.

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3. Campaigns to raise awareness and increase population consent towards stem cell donation • Talk to patients in hospitals and women that will give birth • Be creative to attract people to your cause: try different types of campaigns like selfie challenge • Organize kiosk stands in streets, hospitals, malls, cafes… to talk with people about the topic and encourage them to register • Organize a walk or a flash mob to raise awareness on the topic.

• Distribute flyers to people and post posters in different places • Share real stories of people cured by stem cell donation

4. Remember to use media which is a very powerful tool to raise awareness • Publish online articles and videos on stem cell donation, and have them shared in electronic press, and also in paper journals • Go in Radio and TV shows to talk about the topic.

5. Establish partnerships and have people working together with you • Approach doctors and professors (Gynecology, Hematology, oncology…)

Plan how to work together on the topic, and also ask them to encourage their patients to donate (e.i. gynecologists to talk with pregnant women.)

• Establish partnerships with procurement organizations and donationrelated organizations

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6. Use Advocacy to influence decision makers to improve the situation • Advocate for the establishment of a new bank or registry along with Doctors and professors, procurement organizations and donation-related organizations and other associations • Advocate to ensure the government’s commitment to support and work on stem cell donation .

• Advocate for advanced and regular training updates for health professionals • Advocate for improved facilities in hospitals

7. Use research as an evidence-based approach to assess issues and find solutions

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ICK

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Important Note!

If you plan to start an activity on stem cell donation, ENROLL your activity idea, and get in touch with the PC to have support and suggestions for your activity.

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Previous Activities & Success Stories England (website) Marrow is a network of university groups which sign people up to the Anthony Nolan Stem cell/Marrow donor register. We have over 50 groups. Each group runs independently with their own committee. We have a National Committee of students, led by a National President, which coordinates with Anthony Nolan, and supports groups, as well as sharing knowledge.

Groups range in size from signing up 100 to 2500+ potential donors a year.

They run in different ways, and adapt to their own university. Each group is led by a group president. In total, there are approximately 1000 volunteers.

Volunteers are trained in how to recruit and counsel potential donors at recruitment events.

We’ve signed up over 100,000 people to the Anthony Nolan register, and we do more every year.

We’ve raised a ton of money – Marrow have raised over £160,000 in a year to help fund Anthony Nolan’s work We sign people up using swabs (up until 2 months ago, we took spit samples).

These are then sent back to The Anthony Nolan labs, and added to the register. We recruit people aged from 16-30, although once on the register they stay on it until they are 60.

Donation is through the 2 methods, 90% though peripheral Blood Stem cells donation. 10 % is via a bone Marrow harvest, small operation taking from pelvis. Of the people signed up by Marrow, roughly 1/100 will end up donating, compared to 1/800 of people on the register, as young people are more likely to donate.

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Donations are sent anywhere in the world and likewise we receive donations from abroad. Donating is anonymous, though they can communicate without names via Anthony Nolan. after 2 years, if both the patient and donor want to, they can begin to communicate in person.

Taiwan

In order to promote this issue and to raise awareness on the difficulty of finding a bone marrow match, we held an on-campus game called “MATCH MARROW”. In the beginning of the game, everyone was given one card, which had a specific color and number. They were asked to post a picture of their card on Facebook. Then, they had to search for the other person with the identical card. Everyone who managed to find his or her “MATCH” can get a small gift.

We combined fun and knowledge by providing a fact on bone marrow donation on each of these cards. Also, posting photos and sharing our page helped spread the message as well.

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Switzerland (website)

Marrow Switzerland aims to put more potential blood stem cell donors on the international registries and thus cure blood cancers by organizing registration events, conferences and information desks. Marrow Switzerland’s groups are established in all six medical faculties of Switzerland and work individually on a local as well as united on a national level. Marrow Switzerland, as one of the founding members of International Marrow, also tries to motivate students to build up more and more Marrow groups all around the world and create an international network.

Our most important target group are students because they are mostly young and thus the best potential donors. Yearly, Marrow Switzerland registers roughly 7% of Switzerland’s newly registered potential donors, recorded by the national stem cell bank.

Ecuador

In order to introduce medical students into the situation of organ and marrow donation in our country and raise their awareness regarding organ donation we organized a symposium with professional speakers on the domain. We also showed the different techniques and surgeries done.

A survey was used after the symposium to measure the goals and objectives established. Most of the participants felt that the Symposium taught them about the current situation of Donation and Organ and marrow Transplantation system in Ecuador, the speakers were graded as “excellent” in a big percentage.

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Poland

Marrow Hero is a SCOPH project which focuses on finding new marrow donors and fighting the stigma around bone marrow donation.

We organize multiple events which are being held in shopping centers, schools, universities, during sport events, or even in pubs in 10 biggest cities in Poland. During each event there is a counter on which any person that has no medical contraindications can be provided with information about bone barrow transplantation and easily become a potential bone marrow donor. Our target groups are adults (18-55 years old) who are willing to help and become a marrow donor and medical students who can gain knowledge about blood cancers and promote the idea of bone marrow donation. In 2017 we’ve registered more than 600 new potential donors, and we had 157 volunteers (medial students from IFMSA-Poland), who took part in our events. We also collaborate with DKMS Foundation and regional blood donation centers.

Hungary

Our activity is a game about the transplantation and a short presentation for the facts’ sake.

It is targeted for the high school generation and the young adults.

The aim is to spread the trust and ruin the false beliefs. We have a before-after survey in order to evaluate the impact on the knowledge of participants.

Our main partner is the Hungarian National Blood Transfusion Service. They are responsible for all kind of transplantations in Hungary.

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Advocacy Guide

Now you know the importance of Stem cell donation, and you probably know that to implement it in your country you need to do some ADVOCACY for it. So here is a small guide on how you can do that.

Advocacy is a crucial and integral pillar in Public Health work, as it can bring to positive change, supported by decision making bodies (Commissions, Governments,...).

Often when people think about advocacy, they think about the kind of activities that an organization or group of individuals can undertake. These could include: Press conference, Strike March, Court cases, Poster campaign, Round table, Pamphlets, Survey/Opinion Poll, Theatre Workshop, TV or radio drama, Letter writing, Petitions, Public forum, Conference, Press release, Policy research, Exposure tour, Lobbying, Flyers, Website Networking, Coalitions or networks, Newsletter.

When pursuing advocacy, it is especially important to define clear and impactful answers to the “why” questions (i.e.: “Why is this an issue?”).

The entities or individuals you approach will want to know why you are pursuing a certain goal.

In addition to this, it is also important to know which factors determine or influence the issue, which ones can be changed, and which ones cannot. It is important to define who your potential allies can be, as well as who the potential “enemies” could be. To have a clear overview of your potential supporters you can create a Stakeholder Map. Plenty of How To guides and Stakeholder Map models can be found online.

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When it comes to Advocacy, there are many different people you can spread your message to. Of all the ones who support you though, probably not all of them will be able to help you in the way you expect. This is why it is important to define who the key players are in every situation, especially in situations you are attempting to influence. Accordingly, you will have set your priorities of how to meet them, talk to them, and present your case in the hopes of convincing them of the change you seek.

There are five key questions to ask when thinking about advocacy and developing an advocacy strategy: 1. What do you want to change?

2. How will change happen?

3. What is your core argument/message?

4. How are you going to win the argument or deliver the message?

5. How will you know if you are making progress or have succeeded?

Proposing solutions: In general, when engaging in advocacy it is difficult to meaningfully engage in influencing change by just pointing out what is wrong with the current situation (the problem). It is helpful to have a proposal for change – a solution or recommendations. If you are going to engage in discussions with decision makers around your solution it can be important to ‘test’ it for any weaknesses.

Key questions that can be useful to ask are: • Is your solution/ recommendation realistic?

• Can it be implemented without much expense?

• Is your solution simple and easy to understand?

• Could your solution/ recommendation achieve tangible results in a short period of time?

• Who will oppose your solution/ recommendation or be skeptical about it? Why? • Will decision-makers like your solution/recommendation? Why? Why not?

• Are there other solutions to the problem that are more practical than your initial idea, and that will be more appealing to the decision makers?

• What are these solutions?

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How will change happen?

How change happens is context (and issue) specific so it is important to think about what you know about the context for change (whether at the international, national or local level). Key to understanding how change will happen is knowing who has the power to make decisions in relation to your issue and who influences them. It is also important to reflect on the role that your individual organization can play in influencing change. a) Understanding the context for change A very simple way to think through your context and make sure you are taking it into consideration in relation to your advocacy strategy is to use the PESTLE framework. This is often used in strategic planning processes. PESTLE stands for the (P)olitical, (E)conomic, (S)ocial, (T)echnological, (L)egal and (E)nvironmental context. It can also be useful to add in an extra ‘I’ (PESTLEI) which covers the (I)nternational context – the involvement of international donors or agencies in your context.

In turn think about each element of the context (the political, then the economic...) and think about how it affects your issue.

For example, there may be elections coming up (political context) or there may be a high rate of inflation which affects the price of food (economic context).

Once you have been through each of the elements (PESTLEI), sit back and reflect on what it tells you about your context and what you need to consider in relation to your advocacy strategy. For example, election time can potentially be a good time to advocate as political parties may want to include your ideas in their manifestos but also on the other hand there may be greater instability, politicians may be distracted and civil society space may be constrained.

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b) Understanding who will be involved in change First list all of the potential stakeholders that are involved your issue currently and would need to be involved in the change you want to see.

The kinds of organizations/institutions you may want to include are: • National Government • Local Government • Business and the private sector • Non-governmental (Civil society) organizations - That is you! Think about which other NGOs focus on this issue.

• Professional bodies such as physicians, veterinarians, etc.

• Religious or community leaders • Media • International donors and international organizations You will probably need to do some research in order to identify individuals within organizations as we influence people not institutions.

For example, if you identify that the Daily National Newspaper is an important media stakeholder, you may need to think about who at the Daily Nation Newspaper you need to influence – is it the Editor, the health columnist or the opinion page editor? Once you have identified the individuals, you may want to gather other information which helps you to understand their interests so that you can better target your advocacy and understand whether they are allies or opponents of your ideas.

Having the stakeholder analysis can be useful but it is difficult to visualize and understand how the various stakeholders relate to each other and also how your organization or you as an individual can actually influence the decisionmaker either directly or indirectly. For example, there could be a range of different ways to influence the decision-maker.

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c) Understanding multiple paths to influence • You could request a meeting with the public health minister directly.

• You could focus on increasing press coverage that will influence the Minister.

• You could engage with the parliamentary committee on health who would produce a report that would be sent to the Minister.

• You could engage religious leaders within the Catholic Church who may be able to influence the Minister.

• You could form an alliance with the professional association (midwives, nurses and obstetricians and gynecologists).

The most effective advocacy strategy might be to use a combination of all the above approaches in order to develop momentum and pressure for change.

Keep in mind that often your first attempt might seem ineffective to you, but this is completely normal! Revise your strategy, your approach to the different stakeholders, and keep trying. Often, it will not be enough to explain the Why of the issue to the parties you approach. It is also very important to be able to explain Why changing the issue in your favor could also be beneficial and practical for them (e.g. stem cells as a treatment method can help cure patients with chronic diseases , therefore the Government would save expenses if they invested more in it).

How will change happen?

1. Understanding the context for change 2. Understanding who will be involved in change 3. Understanding multiple paths to influence

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Advocacy Take Home Message

1. Be well informed about the issue you are fighting to change 2. Define a Stakeholder map 3. Create a clear, evidence-based message that will support your cause 4. Find support from relevant parties 5. Keep your interests in mind, but also evaluate what interests others may have in your action, to improve your chances of finding support 6. Never forget to define your Vision, Goals, Objectives.

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