Tag Archives: blood

Ethnicity Matters to Stem Cell Recipients

Indians are dying unnecessarily from blood cancers. There is a shortage of Indians available on the national registry to assist fellow Indians who have been diagnosed with leukemia, lymphoma, and other blood cancers. What’s the solution? To encourage more Indians/South Asians to register as potential stem cell donors.

“Registering is easy,” says Dinesh Chandrasekhar, who along with his wife, registered at the Hindu temple in Livermore, CA. “It only takes about 5 minutes. You can complete the online registration and a swab kit will be mailed to you. When you receive the kit, swab the inside of your cheek and pop the kit in the mail. Postage is pre-paid and you don’t have to leave your home. And, the testing is free.”

Dinesh serves as an ambassador for the Asian American Donor Program (AADP), a 30-year-old nonprofit organization in Alameda, CA that works to educate Indians and other ethnically diverse people about the importance of registering as potential stem cell donors. In the past year, AADP has worked with 10 Indian patients in need.

Joining the Be The Match® registry means volunteering to be listed as a potential blood stem cell donor, ready to save the life of any patient anywhere in the world who is in need of a transplant.

“With the coronavirus pandemic and the need for six-foot distancing, we have canceled our in-person community registration events,” says Carol Gillespie, AADP’s executive director. “So, our community education and awareness efforts, which generate new donors, are suffering and blood cancer patients are worried.”

The coronavirus has had a dismal impact on patients diagnosed with blood cancers like leukemia and lymphoma, and other illnesses treatable by a stem cell transplant. Blood cancer patients are afraid that a life-saving donor will not be found in time. They are scared that if a matching donor is found, that person, because of COVID-19, will not want to go to a clinic to have their stem cells collected.

Locating a stem cell donor and having a stem cell transplant is an example of a health care disparity. For people of color, there is a shortage of donors on the Be The Match® national registry. Patients of South Asian/Indian heritage face challenges, as the population is severely under-represented as donors.

At any given time, there are 12,000 people looking for a matching stem cell donor to help save their life. Patients are from all walks of life and are from numerous racial and ethnic groups.

Dinesh Chandrasekhar’s Story

Dinesh and his wife registered with the AADP as potential stem cell donors. Then, in the fall of 2014, Dinesh was notified that he was a match for a patient. 

“I got very excited about the opportunity of being able to help someone in need, but at the same time, I suddenly got apprehensive about the process,” Dinesh says. “But, after talking with an amazing person at Be The Match®, I was completely clear about what I was expected to do. After that, I had no fear.”

Dinesh liked that the stem cell donation process was simple and convenient for him, the donor. And, there were no expenses for him.

When lab work found that Dinesh had high blood pressure, the transplant procedure was called off.“I was never more disappointed in my life,” he says. “It was a huge shock that I could not donate.

In January 2015, Dinesh was notified again that he was a match for a patient in need. He was asked how his blood pressure was and he said he and his doctor worked on it and it was now normal. In April of 2015, Dinesh donated his peripheral blood stem cells.

Dinesh donating stem cells.

“It ended up that I donated for the same patient. And, interestingly, we are both the same age. It was like destiny,” Dinesh says.

The process at Stanford Hospital took a little more than four hours. Dinesh’s blood was taken out of Dinesh’s arm and then cycled through a machine that separates the stem cells from the other blood cells. The stem cells are kept in a separate bag, while the rest of the blood is returned to the donor. During this time, Dinesh watched TV shows.

“I was mind blown about the science behind this and that this (his stem cells) would produce immunity in another person who was compatible with my stem cells,” Dinesh says.

“Giving your stem cells is not like you are donating a part of your body (kidney, liver, etc.),” Dinesh says. 

Before going to a clinic or hospital, donors are given shots that stimulate white blood cell production. “This production moves blood stem cells from the marrow into the bloodstream so that the stem cells can be collected from the donor,” says Gillespie.  “So you are missing nothing.”

Upon returning home, Dinesh ate lunch and slept for about three hours. “The next morning I felt normal and went back to work,” he says. “I would do it again.”

After six months, Dinesh was told that his recipient was doing well and back to their normal life.

“Registering and, then, donating my stem cells was fulfilling,” Dinesh says. “As human beings, we are here to help each other.”

Join the registry by texting AADP to 61474 or visit AADP. Visit AADP’s Instagram page for upcoming Live Interviews. AADP also hosts special events.

Let Us Talk About Our Periods

In light of the World Menstrual Health and Hygiene Day observed recently (28th May), I won’t pad how I feel about the stigma and taboo around periods.

We all came into this world from the same place – the uterus. A concept that apparently requires reminding. The same process that is essential for bringing life on earth is associated with shame, humiliation, and even disgust in many parts of the world. 

My father is a doctor, so menstrual health was treated as just another health issue in my household. Despite growing up in a small non-city (district) in the state of Bihar in India, I was fortunate enough that my home was a safe space where there was no disgust associated with this topic. I was allowed to sit in all poojas and welcome to whine about my horrible cramps. But, outside the house, things were different. Friends and even aunties had strange names for the monthly cycle – from “Aunty flow” to “being down”. 

Fifteen years later, telling the same people that I am writing an article on menstrual health and hygiene was in itself a great litmus test for the taboo and stigma around this topic even now. No one said that they were disgusted by the notion to my face but I got a lot of uncomfortable nods and grunts.

This is a matter of health

People need to understand that menstrual pain is a medical condition (and unbearable one at that) and we need to talk about it – create awareness and bust myths.

According to a study, at least one in four women experiences distressing menstrual pain characterized by a need for medication and absenteeism from study or social activities. Period cramps (also known as dysmenorrhea), are mostly caused by a hormonal imbalance, which can start before the period commences and last for several days.

And right now, amidst lockdowns and increased isolation due to COVID-19 all over the world, there have been reports of increasing “period stress” that is affecting women’s cycles and overall menstrual health. According to a study by Mayo Clinic, stress can not only cause increased menstrual pain but it can also delay the periods or cause Amenorrhea or the absence of menstruation. 

So, instead of disguising this very natural and normal occurrence as a matter of shame, disgust, and humiliation, we need to de-stigmatize it and create conversations around this topic.

Some natural remedies that have worked wonders for me

Period cramps can be horrible and many women go through this pain every month. To mitigate it, here are a few easy, reliable, tested, and tried natural remedies for better menstrual health.

When it comes to cramps, I try not to pop painkillers (anymore). Full disclosure: I used to pop 3-4 Ibuprofen tablets during one cycle when I was younger but now that I am 30 and probably a bit wiser, I find myself more inclined towards natural remedies. 

Herbs like chasteberry and wild yam have been used for thousands of years for treating menstrual pain and boosting women’s health.

I recently discovered and subscribed to The Scarlet Company’s Scarlet – a natural tonic that contains both these super herbs and more, and it has helped me a lot with my cramps and flow.

Another thing that never fails to work, is a hot water bag. I swear by hot water bags and cannot go without them during my periods. They not only help with cramps but also ease the flow.

Yoga also helps a lot. Just 20 minutes of sun salutation every day can make those horrible back pains go away.

This is 2020

The world is getting crazier, stranger, and scarier every day. When one girl comes out of the “period-shaming” closet, she voices the pain and struggles of many others who might be still stuck inside. As a society, we need to do better. And, creating unnecessary sensationalism, stigma or taboo around serious health concerns and issues is not doing anyone any good. Can I get an Amen?

Surabhi Pandey, a former Delhi Doordarshan presenter, is a journalist based in Singapore. She is the author of ‘Nascent Wings’ and ‘Saturated Agitation’ and has contributed to more than 15 anthologies in English and Hindi in India and Singapore. 

Mahesh’s Life in the Balance

Alameda, CA –  Mahesh, a 68-year-old man, is a loving husband and father of two. In May 2019, he was diagnosed with Acute Myeloid Leukemia (a type of blood cancer), the day after celebrating his son’s marriage. A stem cell transplant is Mahesh’s only chance of beating this disease. Before a transplant takes place, a matching stem cell donor must be found.

Mahesh has spent four months in the hospital and his need for a match is urgent. Initially, five matches were found on the registry in India. But, these donors declined to move forward or were ineligible to donate their stem cells. No donor has been found on the Be The Match® national registry.

Matching is based on your human leukocyte antigen (HLA) tissue type. Your HLA is part of what makes you ‘you’ – your individual genetic characteristics. So, HLA matches are closely based upon a patient’s ethnicity.

Mahesh is South Asian/Indian. So, his perfect stem cell match will most likely be someone who is Indian or someone with Indian ancestry. You have a 30 percent chance of being a match with a sibling. But, Mahesh’s siblings are not the best match for him.

Mahesh family is from Central/Eastern India. His parents hail from Orissa. Today South Asians make up one percent of the bone marrow registry.

“My father’s health is rapidly declining and he needs a stem cell match right away,” says Amrut, Mahesh’s son. “If you are South Asian/Indian then signing up might save our Dad’s life or, if you are not a match for him, you might also save the life of another South Asian looking for a match. We need your help!”

More about Mahesh

Mahesh is a father, a husband, and a friend. He is also a leukemia patient. His heritage, Indian American, is preventing him from finding a matching donor because there aren’t enough Indians registered as potential donors.

Mahesh with his family

“I am completely dependent upon the registry to find a match, as my leukemia is aggressive,” Mahesh says. “There are zero matches for me. Being of Indian-American heritage, the population is severely under-represented as donors. If you have just five minutes, I ask you to register.”

Join the registry by texting MAHESH to 61474

What’s the Solution?

People of color are more likely to die of leukemia and other blood cancers because there is a shortage of diverse HLA types on the Be The Match® national registry. It is vital to build a more diverse registry so everyone has an equal opportunity to survive blood cancers.

Encouraging more people of ethnically diverse backgrounds and those of mixed heritage to be committed and join the Registry, potentially saving a life.  Each of us can “Be The One to Save a Life!”

The Asian American Donor Program (AADP, www.aadp.org) is a 30-year-old community based nonprofit 501 (c) 3 organization, based in Alameda, CA, that works to educate community members about marrow donation and the importance of joining the Be The Match® national registry. It is the oldest nonprofit of its kind in the country. AADP staff is dedicated to increasing the availability of potential stem cell donors for patients with life threatening diseases curable by a blood stem cell or marrow transplant. AADP is an official recruitment center for Be The Match®.

“For thousands of severely ill blood cancer patients, there is a cure,” says Carol Gillespie, AADP executive director. “You could be the cure. Those whose marrow/stem cells are not a match for a patient in need now may be a match for someone else down the road, anywhere in the world. I encourage all individuals to commit to registering. It is simple to register – just a swab of the inside of your cheek.”

When a marrow match is not readily available, patients have to wait longer than is ideal to find a match. Once a match has been found, their disease may have progressed to the point that they are no longer eligible for a transplant.

Importance of Diversifying the Registry

In 2019, an estimated combined total of 176,200 people in the US were expected to be diagnosed with leukemia, lymphoma or myeloma. New cases of leukemia, lymphoma and myeloma were expected to account for 10 percent of the estimated 1,762,450 new cancer cases diagnosed in the US in 2019. (From: https://www.lls.org/facts-and-statistics/facts-and-statistics-overview/facts-and-statistics

The Be The Match® registry recruits hundreds of thousands of donors each year through an extensive network of about 100 local and regional Community Engagement Representatives and organizations. You only need to join the Be The Match® registry once.

Marrow/stem cell matches are very different than blood type matches.  Just as we inherit our eyes, hair, and skin color, we inherit our marrow and stem cell tissue type.

How You Can Commit to Help

Or, text MAHESH to 61474

  • You must be 18 to 44 years old and meet general health requirements.
  • Complete the online consent form and a swab kit will be mailed to you.
  • Be committed. Be ready to donate to any patient in need.
  • Other ways to help – call AADP at 1-800-593-6667 or visit our website http://www.aadp.org

Please take a few minutes of your time to learn more about how you can help save a life and register as a marrow donor.

Make Life an Option

Mindy Kaling, the famous actor-producer in the hit series – The Office – stated on Twitter I just signed up! All my fellow South Asians, let’s make a difference here – it’s so easy, and one day it could be you or someone you love.” She was referring to the search for a marrow donor on behalf of Liyna Anwar, a podcast producer for The Los Angeles Times who is fighting an aggressive form of cancer. When certain cancers strike, a bone marrow transplant becomes a lifesaving option and South Asian representation is woefully negligible in registries.

An effective treatment option for several blood cancers, and one which often results in a cure, is hematopoietic stem cell transplantation (HSCT). In addition to blood cancers, this procedure is invoked in the treatment of other serious illnesses including lymphomas, immune-deficiencies, and anemias. In all these instances an allogeneic HSCT is required, in which a matched donor is the source of healthy HSCs.

‘Matching’ involves the identification of human leukocyte antigens (also called HLA), which are proteins present on the surface of the transplanted cells, and ensuring that those present on the donor cells are compatible with the patient receiving these cells. This is dependent on genetics, and it thus follows that a match will be procured from a donor of the same ethnic background. Unfortunately, at the present time the probability of an Indian finding a matched donor in an international registry is approximately 10% (compared with the 80% probability of a Caucasian finding a match). Thus, there is an urgent need for increased representation of donors of Indian and south-east Asian descent in international donor banks, including those right here in America.

The quest for a suitable donor usually begins with finding a match with a sibling or a relative, but only an estimated 30% of matches are found from within relatives. More often than not an unrelated donor is sought and a wider net is cast that spreads over three source tissues, and the repositories which house them. Three sources of tissues may be used as starting material for a HSCT: (1) bone marrow harvested from the pelvic bone, (2) peripheral blood stem cells (PBSC) isolated from blood after being mobilized from marrow, and lastly (3) cord blood (CB) stem cells. The first two are harvested from adult donors (optimally 18-45 years of age), while the third one is harvested from the umbilical cord after childbirth. Of these, the bone marrow and peripheral blood derived stem cells are preferred as they pack a concentrated bolus of stem cells. Cord blood has advantages in that the requirements for a match is less stringent, but the number of stem cells per sample is limited and the time taken for engraftment is longer. Another significant difference lies in logistics and infrastructure. Registries exist for the adult-derived stem cells where a database is created to record HLA characteristics of registered samples. Once a match is identified the donor is contacted and tissue harvested, processed, and shipped to the recipient’s hospital. In contrast, physical samples of cord blood harvested at the time of childbirth are stored in tissue banks awaiting a request once a match is identified.

Prominent international stem cell banks and registries include the World Marrow Donor Association (WMDA) which is headquartered in the Netherlands, and the Anthony Nolan Trust based in the UK. The Be The Match registry (also the National Marrow Donor Program (NMDP)) is maintained by the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services (https://bloodcell.transplant.hrsa.gov/index.html), and in addition to the registry provides a trove of information about current research and options available to patients. As there is a widely acknowledged need for donors of non-Caucasian ethnicities in these international banks, the HRSA also provides information related to initiatives and funding for establishing registries focused on these populations. One such initiative is a California-based non-profit Mixed Marrow that is focused on finding bone marrow and blood cell donors of multi-ethnic descent. South Asian Marrow Association of Recruiters (SAMAR) is a community-based network partner and official recruitment center of the Be The Match Registry. Although they were initially focused on recruitment of the South Asian ethnic group, they now serve diverse racial groups. Information may be obtained for other registries including DKMS and Gift of Life.

Of specific interest to patients of Indian and South-east Asian ethnicities are stem cell registry and banking initiatives in India. Currently five registries exist, namely, Marrow Donor Registry India (Mumbai), Genebandhu (Delhi), Bangalore Medical Services Trust (Bangalore), Datri (Chennai), and Jeevan Stem Cell Foundation (Chennai). Jeevan also houses a cord-blood bank. In addition, there is an ongoing initiative of the Government of India to create a national registry. Dr. Srinivasan Periathiruvadi, Chairman of Jeevan, estimates that when the registry touches the million mark approximately 60% of patients of Indian origin will find a matching donor. Since 45% of the Indian population is between the ages of 18-45 which is optimal for a donor, he opines that reaching this goal should be possible in a year or two. HLA typing is performed on registered donors, and once matched, the requisite tissue sample may be shipped to national and international transplantation sites.

India Currents editor Nirupama Vaidhyanathan remembered a high-profile campaign in the South Asian community about 10 years ago in the Bay area, when there was a big push to include participation among Indian-Americans in bone marrow registries. “The registration process was very simple,” she said, “I went to the Hindu temple in Fremont – volunteers swabbed inside my mouth for a sample and then sent the details to the registry. I was contacted about five years later saying that there was a possible match with a patient. Then, they contacted me again saying that they had found a match that was even closer to the patient’s tissue structure. I am still registered and I encourage all to do so. I can only imagine the pain that family members go through when they try to hunt for a possible donor.”

Registering in a database is not difficult, and instructions for sample submission, along with the relevant form, is available on the respective websites. Data obtained from the HLA typing is stored in the database, and the donor will be contacted only when there is a potential match. Donations are usually performed by isolation of PBSCs, which is likened to a prolonged session of blood donation and is appreciably less intrusive than marrow extraction from the pelvic bone. Cord blood is collected from the umbilical cord which is usually discarded, and may be donated with little effort. Both these actions can save lives.

As a community we could contribute to the health of our generation and the next by creating robust registries and cord blood banks. Having this option to fall back upon in the face of a dreadful illness could indeed be a blessing for the international community of South Asian descent.

 L Iyengar has a Ph.D., and has been involved in researching the biology of stem cells for about two decades. She has been involved in research programs both in the USA and India.