Every 5 minutes someone in India is diagnosed with blood cancer or a blood disorder: Patrick Paul, CEO, DKMS BMST Foundation India

India has a high prevalence of blood cancer and other blood-related disorders like Thalassemia or Aplastic Anemia. Despite a large number of cases, patients suffering from such conditions are forced to struggle with their treatments and therapies. DKMS BMST Foundation India, a non-profit Organisation, is dedicated to the fight against blood cancer and other blood disorders, such as thalassemia and aplastic anemia. It is a joint venture of two reputed Non-profit Organisations: BMST (Bangalore Medical Services Trust) and DKMS, one of the largest international blood stem cell donor centres in the world. Financial reached out to Patrick Paul, CEO, DKMS BMST Foundation India and he highlighted the status of blood disorders in India, challenges faced by the patients suffering from these diseases and role of DKMS BMST Foundation India in patient care in the country among others. Excerpts:

What are the various types of blood cancers that are prevalent in India?

Blood Cancer typically means malignancies of the blood, bone marrow or lymph nodes that affect normal blood cell production or function.

Of all types of Blood Cancers, here are the three most common types of blood cancer that affects the Indian population mentioned in order of the rate of incidence.

• Lymphoma is the name for a group of blood cancers that develop in the lymphatic system. The two main types are Hodgkin lymphoma (generally starts in blood and bone marrow) and non-Hodgkin lymphoma (generally starts in lymph node and lymphatic tissue.)

• Leukemia is a blood cancer that develops when normal blood cells change and grow uncontrollably. There are four main types named according to the cells affected (myeloblasts, lymphocytes) and whether the disease starts with mature or immature cells (chronic, acute).

• Multiple myeloma starts in the bone marrow when plasma cells begin to grow uncontrollably. As the cells grow, they compromise the immune system and impair the production and function of white and red blood cells causing bone disease, organ damage and anemia among other conditions.

What are the challenges that a blood cancer patient faces in India? What needs to be done to help them in overcoming those hurdles?

Every 5 minutes someone in India is diagnosed with blood cancer or a blood disorder such as Thalassemia or Aplastic Anemia. Despite this huge cancer burden, In India, only 0.04% of the total population is registered as a potential blood stem cell donor. While blood cancer is life-threatening, a set of healthy blood stem cells from a matching donor can be life-saving. The demand and supply gap are increasing as people don’t register themselves as potential blood stem cell donors due to lack of awareness.

Only about 30% of the patients in need of a stem cell transplant as lifesaving treatment can find a sibling match. The rest 70% depend on finding a matching unrelated donor which makes it vital for people to register themselves as potential donors and help save a life.

How does DKMS BMST Foundation India help patients with blood cancer? In recent years, what are the crucial milestones that the organization has achieved in the country?

DKMS-BMST helps blood cancer patients by:

• Raising awareness and educating the general public about the importance of blood stem cell donation

• Recruiting donors by encouraging people of diverse ethnicities to register as a potential blood stem cell donor. Recruitment is done through various registration drives at different colleges, corporates, and associations and through online portal.

• Matching and collection of stem cells by facilitating search requests in collaboration with transplant centers, collection, processing and transport of stem cell product

• Ensuring donor safety and following up post the procedure to monitor the well-being of the donors

• Supporting patients and families with information and organization of registration events

• Research to advance blood cancer treatment and improve the success rate of transplants

DKMS-BMST has organized over 1300 donor registration drives with focus on South India in the last one year across various organizations such as corporates, educational institutes, hospitals and defense forces to spread awareness about blood stem cell donation and enroll more potential donors. So far, DKMS-BMST have successfully registered over 70,000 potential blood stem cell donors.

While our donor recruitment team is responsible to register potential donors, our medical team works with transplant centers and collection centers. As soon as we receive a direct request from a transplant center for a patient from India or abroad, a worldwide search is started to determine whether there is a donor available. If there is a donor from DKMS-BMST, we contact this donor and initiate all the steps for a successful blood stem cell donation. So far, we have arranged 29 successful donations and were thus able to offer 29 patients a second chance at life.

Other than blood cancers, what are the other focal areas of DKMS BMST Foundation India?

DKMS BMST Foundation India is a non-profit organization dedicated to the fight against blood cancer and other blood disorders, such as thalassemia and aplastic anemia.

Our aim is to improve the situation of patients suffering from blood cancer and other blood disorders in India, by raising awareness about blood stem cell transplantation and registering potential blood stem cell donors. By doing this, DKMS-BMST provides patients in need of a blood stem cell transplant with a second chance at life.

How the ongoing COVID-19 pandemic has affected the treatment and diagnosis of hemoglobinopathy and other blood disorders?

Blood cancer and other blood disorder patients suffer from immune deficiency. Even regular respiratory viruses are a problem and the spread of coronavirus is a major risk for the patients. These patients are more sensitive to infection than any other group, because the treatment itself destroys their own immune system, and replaces it with the donor’s. Thus, the management of such high-risk patients have also become challenging in this situation. The Covid-19 pandemic had posed lot of challenges for patients with hematological-oncological conditions and in need of a blood stem cell transplant. In the context of unrelated blood stem cell transplants there is lots of logistic support needed. The lockdown situations used to impact the usual process for transporting blood stem cells across borders and countries. There was also a fear factor in the voluntary blood stem cell donors about blood stem cell donation during this time.

However, now the situation is getting better and we are registering potential donors through online and offline activities as well.

What are the common misconceptions that you come across related to blood cancers and other blood-related disorders in India?

A lack of understanding and multiple baseless misconceptions existing amongst people about the process, impacts the cause. People often mistake a blood stem cell transplant as a painful procedure. The blood stem cell donors need not undergo any surgical procedure as the stem cells are collected from the donor’s blood. The process followed is similar to donating blood platelets. It is high time that we all overcome these misconceptions and commit to being a lifesaver.

What are the challenges DKMS BMST Foundation India faces while recruiting Indian donors? What is the importance of recruiting young donors?

As the number of patients increase every year, the number of transplants increase proportionately. But the problem is, due to the lack of awareness and general misconception about stem cell transplants in India, there are only 0.04% of the population that are registered as potential blood stem cell donors. This makes it very difficult for a patient to be able to find an HLA (Human Leucocyte Antigen) matched donor. While misinformation and/or lack of information is the biggest challenge faced by all potential blood stem cell donors today, multiple myths associated with a stem cell donation pose a greater threat.

Some of the common myths include:

Myth: Donating blood stem cells means losing them forever.

Fact: When you donate your stem cells, you are only donating a fraction of your total stem cells.

All the cells will naturally be replenished within a few weeks

Myth: Donating stem cells is an invasive and painful process

Fact: Blood stem cells are collected through peripheral blood stem cell collection (PBSC) which is completely safe and a non-surgical procedure. The process is similar to blood platelet donation that takes approximately three to four hours to complete and the donor can leave the collection center the same day.

Myth: Blood Donation and a blood stem cell donation are same

Fact: Unlike blood collection for transfusion, blood stem cells are collected only when there is a match between the donor and patient’s Human leukocyte antigen (HLA) (tissue type).

So, you could be potentially be the only match and lifesaver for a person with blood cancer in need of a transplant. Blood stem cell donors donate only blood stem cells and the process is similar to a platelet donation.

Myth: Joining a blood stem cell registry is of no use. Most patients can find a stem cell donor within their own families.

Fact: Per statistics, only 30% of blood disorder patients in need of a stem cell transplant are able to find a sibling match. About 70 percent of patients need an unrelated donor.

What is the significance of Stem Cell Transplant as a treatment option?

Due to the advanced medical technologies and increased research, life-threatening diseases such as blood cancer can be treated through stem cell transplants. Stem cell transplantation is a procedure that restores blood-forming stem cells in people who have had theirs destroyed by the very high doses of chemotherapy or radiation therapy. Healthy blood stem cells from a matching donor is infused into the patient to help resume healthy blood production.

What are future plans for DKMS-BMST in India? In the coming years, what will be the status of India with respect to stem-cell therapies?

DKMS-BMST will continue working with its mission to help blood cancer and blood disorder patients by raising awareness, organizing donor registration events to recruit more potential blood stem cell donors of Indian origin, thus increasing the chances of finding matching donors for patient in need of a lifesaving stem cell transplant and facilitating successful blood stem cell donations. Since, ethnicity plays a crucial role in finding a matching donor, the ratio of potential blood stem cell donors from India needs to rise significantly.

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