Donor Handbook

DONOR HANDBOOK TOGETHER AGAINST BLOOD CANCER

“Thank you for being an important part of our key mission of working towards providing all blood cancer patients with a potential donor. We believe that every blood cancer patient should be able to find a matching donor. DKMS-BMST Foundation India Cover photo: DEBOJYOTHI, blood stem cell donor

AT YOUR SIDE ON YOUR LIFE SAVING JOURNEY Dear Potential Donor, If you are reading this handbook, it is likely you have received the great news that a request has been made on behalf of a patient who needs some of your stem cells. With this handbook, we want to guide you through the next steps and help you feel secure in your decision. Here you can find answers to your questions and information on the processes and support offered to you by our team at DKMS BMST Foundation India. We thank you for making the important commitment to potentially saving someone's life. Our commitment is to support you at every step on the way of your lifesaving journey. Together we can save lives. Best wishes, Dr. Latha Jagannathan (Chief Functionary & Director) DKMS BMST FOUNDATION INDIA MATHEW PUTHETTU New Thippasandra Main Road, Donor Request Coordinator HAL 3rd Stage, M +91 733 788 7450 Bangalore – 560075 E mathew.puthettu@dkms-bmst.org Karnataka, INDIA Website: dkms-bmst.org Email: medical@dkms-bmst.org CONTACT: DR SANJANA DONTULA Head - Medical Affairs M +91 733 788 7442 E sanjana.dontula@dkms-bmst.org



THERE ARE ONLY SURVIVORS BECAUSE THERE ARE LIFESAVERS 6 Confirming that you are a match 7 Steps in PBSC Donation Process 8-9 Donor Experience 10-11 I’ve Been Selected 12-13 Donor Experience 14 Procedure of Stem Cell Donation 15 At a Glance 16 Frequently Asked Questions 17 The things you may want to know

CONFIRMING THAT YOU ARE A MATCH You've been identified as a match because you have the same tissue type of the patient who is desperately in need of a stem cell transplant. When you registered with DKMS-BMST, you submitted a cheek swab sample that was tested to determine your tissue type (HLA-Human- -Leukocyte antigen). Your tissue type has now been found to be a match for this patient. Donating blood stem cells is a serious commitment to the patient, who is in critical need of the stem cells that will potentially save their life. This decision is a personal one and it is completely voluntary. This section of the booklet explains the health availability check, PBSC (Peripheral Blood Stem Cell) donation process and how we will support you throughout your journey. 6

STEPS IN PBSC DONATION PROCESS 1. GET INFORMED AND HEALTH Your health and safety are our top priority and AVAILABILITY CHECK we want you to be informed at every step of your journey as a stem cell donor. Any medical Once you have been found to be a match, we condition will be thoroughly reviewed by our will get in touch with you to know your medical team and if donating poses any present health status. It is important that additional risk to you, you will not be asked to we have up to date information about your proceed as a donor.Depending on your health health status to make sure you are fit and status, it is possible that you may be healthy to go ahead with the donation. temporarily deferred to donate, or need to be Additionally, we will also check your permanently removed from the registry. availability for the PBSC donation process in the next few weeks. This process is called 3. KEEP US UPDATED AND BE READY Health availability check (HAC). Once you are eligible as a donor, completed The first step will be a detailed information your health history questionnaire and give session with the coordinator of our team. The your consent to proceed, you will have already coordinator will call you, ask a few questions become an essential part of the patient's with regard to your health status and would search for a donor and may well be their only explain the donation steps in details. All your opportunity for a second chance at life. questions and concerns regarding Peripheral Blood Donation Process will be addressed by It can take anywhere from one week to three the coordinator. months to schedule the final phases of your donation. The following section of the Your committed decision is of prime handbook will discuss the peripheral blood importance. Donation is entirely voluntary stem cell donation process. and this is an important decision for you. Once the patient has been prepared to receive your stem cells, withdrawing would pose a serious risk to their life. Talk to your family and friends, as they can help you think it through. Please ask us for a leaflet designed exclusively for your family and friends. If you would like to talk to somebody who has already donated their stem cells, we may be able to put you in touch with someone. 2. SUBMIT THE HEALTH HISTORY DID YOU KNOW QUESTIONNAIRE AND CONSENT FORM There are thousands of patients who can’t find a matching donor, but we know that we can The health history questionnaire provides us help. Less than 0.5% of the world’s with information regarding any medical population is registered as a donor. conditions that may prevent you from donating. Your consent enables us to move forward with 7 the Peripheral Stem Cell Donation Process and conduct any medical assessments and blood tests if required.

DONOR “Whenever you get a chance to do good for someone, just go for it”! JEETHESH, blood stem cell donor 8

EXPERIENCE \"When I registered I always had somewhere in my mind that what if I actually come as a match for someone, and as they say its all in the destiny, when I received the call I was thrilled and anxious at the same time I was feeling special too as I it is a rare occasion when someone becomes a genetic match or rather a genetic twin. All this while I was confident about donating my blood stem cells.” #ITSINYOURBLOOD TO BE A LIFESAVER Register at dkms-bmst.org/register 9

I'VE BEEN SELECTED! PREPARING FOR YOUR DONATION AND 4. GCSF Administration THE PBSC DONATION PROCEDURE . Blood stem cells are produced and stored 1. PBSC INFO SESSION inside the bone. G-CSF is Granulocyte colony . Once it is determined that you are the best stimulating factor (proteins) which are naturally produced in our body. match, the DKMS-BMST coordinator will contact you again to prepare a time schedule . GCSF stimulates production of blood stem and explain the Peripheral Stem Cell Collection in more detail. cells and mobilizes them into the blood stream as and when needed. . You will receive information regarding date, . The stem cells in the blood stream are then time, and venue of donation. collected through Peripheral Blood Stem Cell . All the expenses incurred including transport Donation. and medical assessment will be borne by . You will receive daily G-CSF injections for five DKMS BMST. consecutive days before your donation. On . Once you have agreed, we will begin the first four days, a nurse visits your house and administers the GCSF injection and on scheduling your medical assessment and the fifth day, the injection will be given to you peripheral blood stem cell collection. at the hospital or blood bank prior to your donation. 2. MEDICAL ASSESSMENT . The injection will be administered through a . The medical assessment takes place at an tiny needle under the skin as prescribed by the CC physician. empaneled hospital or a blood bank where . You may feel some temporary discomforts the stem cells are collected. during the time of G-CSF administration. The . The purpose of the medical examination is to side effects are similar to cold/flu-like assess your suitability as a stem cell donor. symptoms, such as: headache, bone pain and This involve the following steps: muscle aches. It will fade away shortly after . You will meet the blood bank physician or the donation. Donors will be prescribed paracetamol /Ibuprofen for pain relief by the Collection Center physician who will collect your CC physician. stem cells. The physician will once again explains the PBSC procedure in detail, reviews your health . Donors should refrain from any strenuous history questionnaire, answers your queries, and activities like lifting heavy weights, contact conduct a basic physical exam (health check) sports, and gym during GCSF administration . You will go through detailed lab tests such as and for 2 weeks post donation. complete blood count, liver function, renal 5. PERIPHERAL BLOOD STEM CELL function, thyroid function, etc. to check if you DONATION PROCESS – STEM CELL are healthy and free of any infections to donate stem cells. COLLECTION . You will also undergo diagnostic studies such as . PBSC is generally scheduled on a weekday, chest x-ray, ultrasound abdomen and ECG at this based on availability. stage. . It is an outpatient procedure which lasts 3. DONOR FINAL CLEARANCE about 3 to 4 hours. It requires no overnight stay in the hospital and donors will be . In this step, the CC physician will reviews your completely awake during the procedure. complete lab and diagnostic reports and . Blood is drawn through a tiny sterile needle clears you to donate stem cells, confirming that you are medically fit for the Peripheral in one arm and passed through an apheresis Blood Stem Cell donation. machine. A sterile, single-use disposable kit is used for PBSC. The apheresis machine . Occasionally, you may need some additional separates the stem cells from the blood, collects it in a bag and rest of the blood is testing to be cleared, based on the opinion of returned back to the body through the other CC physician. arm. . You may not be cleared if it is deemed that you are not fit enough to donate stem cells. 10

. The CC physician and the nurse will keep The following section of the handbook will discuss what will be the procedure of Stem monitoring you during the PBSC procedure Cell Donation. and you will be observed until you are physically stable and ready to go home. . We will follow up with you regularly to check on your recovery after the donation. 6. DONOR FOLLOW UP . Donor's care is our priority and we will contact you on a regular basis after your donation to ask about your physical condition. It is important to contact us directly if you have any concerns or wish to discuss any symptoms you experience. . You should expect a phone call on the day following your donation and then weekly until you report a full recovery. As part of your long-term aftercare, we will be in contact with you for the next ten years. DID YOU KNOW There are currently thousands of Leukamia and Thalassemia patients in India waiting for a stem cell donation and many thousands more worldwide. Please support us to find a donor for every patient who is in need, 11

DONOR “ I Became Someone’s Perfect Genetic Match on Valentine’s Day! ” DEEPIKA, blood stem cell donor 12

EXPERIENCE Honestly, I never expected to actually receive a call because the odds of finding a match is so rare. It was emotional to think that I was a potential match and that I had the opportunity to save someone's life. The minute I found out I was a match, I immediately felt a connection to this stranger I didn't even know. I was the best possible match for the patient and the procedure was scheduled to happen on Valentine's Day. YOU HAVE THE SUPERPOWER TO SAVE A LIFE! Register at dkms-bmst.org/register 13

PROCEDURE OF STEM CELL DONATION This section will help you to understand the donation process. You can learn about the steps involved before, during and after the collecction and how we will support you along the way. 14

AT A GLANCE STEM CELL DONATION GET INFORMED AND HEALTH AVAILABILITY CHECK Info session with coordinator SUBMIT THE HEALTH HISTORY QUESTIONNAIRE AND CONSENT FORM Complete health history questionnaire KEEP US UPDATED AND BE READY Waiting period – 1 to 3 months. PBSC INFO SESSION Discussion of PBSC process and scheduling MEDICAL ASSESSMENT Health check by collection center physician, blood test and diagnostic study GCSF ADMINISTRATION Administration of GCSF by a professional nurse PERIPHERAL BLOOD STEM CELL DONATION Collection of stem cells, Outpatient procedure, 3-4 hours DONOR FOLLOW UP Post donation follow up at regular intervals 15

FREQUENTLY ASKED QUESTIONS THE THINGS YOU MAY WANT TO KNOW Here you will find all the questions we regularly get asked at DKMS-BMST. If you can't find the answer to your question here, or elsewhere in this booklet, please feel free to call our donor support team members – (office landline number/or write to us – medical@dkms-bmst.org) 16

THE THINGS YOU MAY WANT TO KNOW 1. WHERE WILL MY STEM CELLS BE 4. WILL MY EXISTING MEDICAL COLLECTED? CONDITION PREVENT ME FROM DONATING? Your stem cell collection will be scheduled at a hospital or a blood bank in Bangalore or We take the health and safety of our donors very another major city in India depending on where seriously. All donors are required to complete a you live. We will cover all your travel expenses. health history questionnaire before proceeding. Any medical concerns are reviewed by a doctor to 2. WHO COVERS THE EXPENSES? fully assess your ability to continue as a donor. Depending on your health status, it is possible that There will be no cost to you. When a donor is you may be deemed temporarily unavailable to matched with a patient, we will cover the costs donate, or need to be permanently removed from (including any travel, meals, or accommodation the registry. expenses that may be necessary). DKMS-BMST will also cover the costs for a companion to 5. WILL I BE COMPENSATED FOR THE travel with you to the hospital or blood bank. TIME I TAKE OFF FROM WORK? Your personal health insurance will never be used. Whilst it is extremely rare to require If you are not covered by your employer, DKMS follow up care, if it is ever needed, the donor's -BMST has a financial assistance programme that costs would also be covered by DKMS-BMST. deals with lost wage compensation. Other than that, we are not legally permitted to make any payments or rewards for the 6. WHEN WILL MY DONATION TAKE provision of tissues, including blood stem cells PLACE? for transplantation. It is hard to say exactly when your donation will 3. WILL I PERMANENTLY LOSE MY take place, since it depends primarily on the STEM CELLS? patient's condition. In most cases, you would be asked to donate anywhere between 1-3 months For the PBSC procedure, the amount of stem once we receive your duly-filled health history cells collected is only a fraction of the body's questionnaire. We will always give you 3-4 weeks total stem cells. The amount donated does not advance notice. If there are any important dates weaken your own immune system. Your stem when you cannot donate, we will always try to cells will be naturally replenished within a few accommodate to your schedule. weeks. 7. WILL I BE ASKED TO DONATE AGAIN? EVERY 5 MINUTES SOMEONE There is a possibility you will be asked to IN INDIA IS DIAGNOSED WITH donate again for the same patient. If a patient's immune system does not accept the transplant, BLOOD CANCER OR A the patient might relapse, meaning a second stem BLOOD DISORDER SUCH cell transplantation could be necessary. In rare AS THALASSEMIA OR cases, you might be a matching donor for another APLASTIC ANEMIA patient in need. In both cases, your donation is always completely voluntary. 17

8. WILL I BE ABLE TO MEET THE 11. COMMUNICATING WITH THEPATIENT: PATIENT, I HAVE DONATED MY STEM LONGER-TERM CELLS FOR? After a certain period of anonymity, some We are often asked by donors if they can find transplant centers may allow direct contact with out more about the person they donated their the patient. Contact may only occur if both you stem cells to, or even meet them. Depending and the patient give consent to exchange your on the country where the transplantation takes contact information. Some centers do not allow place, different rules apply. As per any communication, so you should be prepared confidentiality and legal policy, the patient's for the possibility that you might never be able age group, gender, and location of treatment to learn the patient's identity or have any will be shared with the donor post donation. contact with them. Your DKMS-BMST Depending on which country the patient was coordinator can provide further information on transplanted in, it might also be possible to the specific policies that are in place at the write to the patient anonymously following hospital where your specific patient is being donation. In some countries, after a certain treated. period of anonymity, the patient and donor can exchange personal information and contact each other directly. 9. UPDATES ABOUT THE PATIENT The patient's doctor may provide updates within the first year after the donation. We will contact you once an update is available. It is important to note that, due to confidentiality, some transplant centers are unable to provide patient updates. You should be prepared for the possibility that you may not receive any updates on the patient's recovery. Your DKMS-BMST coordinator can provide further information on the policies that are in place regarding your specific patient. 10. COMMUNICATING WITH THE DID YOU KNOW PATIENT IN THE FIRST YEAR AFTER TRANSPLANTATION We do not have equal representation in our team More females continue to respond to Communication with the patient is managed our call to register than males and our by DKMS-BMST. Before the patient receives research shows that men often register when your stem cell donation, details of both parties their friends and family encourage them to. will remain completely anonymous. After the patient has received your donated stem cells, you will be able to request some general details about the patient, e.g., their gender, age group and the country where the transplant took place. After the donation, some transplant centers may allow you to send anonymous letters to the patient. This communication should not include any identifying information such as your name, address, city, region or any other contact information. 18

TOGETHER WE REALLY CAN SAVE LIVES ! 19

GET IN TOUCH WITH US DKMS-BMST Foundation India 723, CMH Road, Indiranagar 1st Stage Bangalore, India - 560038 Tel: 080-68286500 dkms-bmst.org CONNECT WITH US DKMS.BMST.in dkms_bmst_in DKMS_BMST_in ASK US A QUESTION: medical@dkms-bmst.org