India is facing a tough challenge in sourcing donors for stem cell transplants that prove as a saviour for many patients suffering from various types of blood disorders like leukaemia, thalassemia and aplastic anaemia among others. As per reports, India registers over 1,00,000 patients every year who are tackling different blood disorders. Out of this, the doctors say, 10 to 15 per cent of patients end up requiring stem cell transplants which can save their lives in majority of the cases.
Stem cells are the raw material cells of the body found in the blood, bone marrow and umbilical cords of newborns from which all the other cells with definitive functions can be generated. Experts say bone marrow transplants or stem cell transplants are life-saving treatments for patients with blood diseases like lymphoma, leukaemia and other blood cancer disorders.
Despite the transformative potential of this treatment, clinical experts contend that the shortage of suitable donors is a big hurdle, leaving patients in a race against time to find a matching donor before they succumb to the disease. There is thus a critical need for more awareness and support for blood cell transplantation in India from the people and medical community. Reports say that every year, over 70 thousand precious lives are lost to blood cancer in India, while the number of blood stem cell donors stands at a meagre 0.04 per cent.
“In India, we have more than 1,00,000 patients every year who are suffering from blood disorders, though not everyone is in need of a stem cell replacement donation immediately they go through a very tough journey of diagnosis, chemotherapy, radiation and then at some stage the need may arise for a stem cell transplant,” says Patrick Paul, CEO, DKMS BMST Foundation India.
He further says that first, the doctors look in the family as 30 per cent of donors can be found in the family itself whereas the rest 70 per cent of donors are usually unrelated and for most of these patients the search currently is unsuccessful due to not enough donors.
“When anyone is diagnosed with blood cancer or disorders, the primary treatment would be chemotherapy but not everyone benefits or gets cured from chemotherapy as there are relapses and failures also. So, almost 10-15 per cent will require stem cell transplant. And when we transplant the stem cells the chances for survival are very high, in blood disorders like aplastic anaemia and thalassemia the chances of patients being cured for a long time are as high as 90-100 per cent,” says Dr Nitin Agarwal, MD, Transfusion Medicine, and HOD, Donor Request Management, DKMS-BMST.
Dr Nitin Agarwal further adds that in cancers like Leukaemia, the chances are anywhere between 75 to 80 per cent. Whereas for 'AML' and 'ALL' Leukaemia which are more aggressive types of cancers, require stem cell transplants in half of the cases as chemotherapy will not cure all of them.
Dr Narendra Agarwal, Senior Consultant, Department of Hemato-Oncology and Bone Marrow Transplant, Rajiv Gandhi Cancer Institute and Research Centre, New Delhi, explains “The scarcity of suitable donors remains a concern, as the chance of finding a full match is approximately 1 in a million. Stem cell transplant has emerged as a powerful treatment modality in the battle against blood cancer. We have witnessed remarkable outcomes and improved survival rates by harnessing the power of healthy blood cells.”
Medical experts believe that whether it's leukaemia, lymphoma, or multiple myeloma, stem cell transplantation is a transformative therapy that regenerates a healthy blood and immune system.
Stem cell donation In India Vs The Need
“Every 5 minutes, a new instance of blood cancer or a blood disorder, such as Thalassemia or Aplastic Anemia, is diagnosed in India. Today, with over 40 million registered donors worldwide, India accounts for just 0.5 million. Thousands of patients are in dire need of a compatible stem cell donor for life-saving transplants. Establishing a robust donor database can bridge the gap between patients and potential donors,” Paul describes.
When it comes to patients getting the stem cells in time, Paul says that only about 7 to 8 per cent of all people who need the transplants get it in time as most of the time patients are unable to find suitable matches and on other occasions they lack enough funds for the treatment.
On being asked as to why is it so hard to find a match Dr Aggarwal deliberates that the match is genetically defined and a gene called the HLA has to be genetically matched with the donor and only then there are chances to find the match either in the family or outside.
Patrick further explains that “When we are looking for a HLA match, we look for 10 markers and each marker has a probability of a match of 8,000 to 10,000, so the probability to find a match here becomes very low. As an example DKMS alone globally has 11.5 million registered donors and only 100,000 of them have actually donated because patients around the world find it very difficult to get a match. That’s why we have to look for more donor’s in a country like India and we are looking for millions of potential donors from India so that the probability to find a match increases and reaches up to 60 to 70 per cent and that's our goal.”
He urges more individuals to come forward and join the cause, as every new registration brings hope to those in desperate need of life-saving stem cell transplants.
Who Should Donate?
Although the maximum age for donating stem cells is 55, experts contend that the ideal donation age lies between 18 yrs to 30 yrs as these donors can stay longer in the donation database.
Patrick says that he and his team bust countless myths and misconceptions people have relating to donation while recruiting young donors, “It becomes very difficult to speak to young people who are not aware in the first stage of registration but even in the second stage which is the stage of actual donation which might not be required immediately and a donor should be available lifelong for their match with the recipient, the struggle comes when people are not ready to donate at the time of the need due to some apprehensions and it's sad that they don't end up donating.”
Dr Agarwal further explains that there is a common misconception among many individuals that a stem cell donation is a painful and invasive procedure. He says it is essential to dispel these myths and educate the public that blood stem cell donation is simple and painless. “Another significant barrier is the prevailing fear among individuals regarding becoming stem cell donors, as they harbour concerns about potential adverse effects on their health.” Dr Agarwal adds
Dr Nitin Agarwal enumerates that the donation procedure is painless and non-invasive, “Earlier we used to put a needle inside the spine and take out the bone marrow but now we take out the stem cells from the blood itself. We give a medicine that brings out the stem cells from the bones to the blood and from blood we take the stem cells through a process called apheresis like in dengue we take platelets it's the same procedure.”
Patrick urges people to get registered online or offline with the DKMS foundation and take the first step, “Please listen to what we are doing and in case you get a call from a medical team that you can now donate, do not be scared and be motivated enough to help someone who is in a dire condition and safe life,” he adds.