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Mixed Match – When Ancestry is the Cure

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Mixed Match: When Ancestry is the Cure is a remarkable documentary that explores why it’s so difficult for people of mixed ethnicity to find a matched stem cell donor for treating life-threatening blood diseases like leukemia, myelodysplastic syndrome, and over 75 other disorders.

multiethnic people

Photo by jens johnsson on Unsplash

 

Mixed Match made its broadcast debut in Canada on TVO last week. It has won many awards since it launched in 2016 and has been screened at film festivals across North America. The film traces the journey of Athena Askilipadas as she visits patients and families struggling with the challenges of finding a match. Askilipadas is the founder of Mixed Marrow, an organization in the U.S dedicated to finding bone marrow and blood stem cell donors for people with mixed ethnicities. Seeing what patients and families go through is heart-rending. Keep a box of tissues nearby! Check out the trailer:

Mixed Match – Festival Trailer 2016 from Mixed Match on Vimeo.

What’s an HLA match?

In the film, expert Stephen Spellman deftly handles the race discussion. He says that we may debate whether race is a social construct that shouldn’t be important in medicine, but we all have diverse genetic backgrounds that are tied to our origins. “You can self-identify as whatever you happen to be, but you can’t trick your genes, especially if we’re doing something as complex as transplanting an immune system because that’s what a hematopoietic (blood) stem cell transplant actually is.” Spellman is Director, Immunobiology and Observational Research at the Center for International Blood and Marrow Transplant Research (CIBMTR).

The body’s immune system figures out if cells are our own or not by reading small protein markers on cell surfaces called human leucocyte antigens (HLA). We inherit our HLA pattern, called a haplotype, from our parents – half from our mothers and half from our fathers. Two siblings only have a 25 per cent chance of being HLA identical, a 50 per cent chance of being half identical (called haploidentical), and a 25 per cent chance of being no match at all.

For the best outcome with bone marrow or hematopoietic stem cell transplantation, the HLA match must be as close as possible. A perfect match is when 8 out of 8 markers are the same between a donor and a recipient. The danger with a lower number of matching markers is a life-threatening complication called graft-versus-host disease, which involves the new immune cells attacking normal cells because they do not recognize them. A 7 out of 8 match, a mismatch of just one HLA marker, can reduce a patient’s 5-year overall survival rate by about 8 per cent.[1]

HLA markers are the most similar within ethnic groups. People with mixed ethnicity have rarer HLA haplotypes that make finding a suitable bone marrow or stem cell donor match much less likely.

The Mixed Match Challenge

There are thousands of people of mixed ethnicity who are looking for compatible donors, but only about 3 percent of donors in the registry are multiethnic. In 2011, the U.S. Be The Match registry reported its ethnic composition as follows:

  • White – 74%
  • Hispanic – 10%
  • Black – 7%
  • Asian – 7%
  • Multiple Race – 3%
  • American Indian – 1 %
  • Pacific Islander – 0.1%

The film mentions a recent study published in The New England Journal of Medicine that examined the likelihoods of finding an HLA match in the U.S. for people of different ethnicities. The investigators found that 75% of whites of European descent would likely find an optimal donor, but that only 16% of blacks of South or Central American descent would find a match.[1] People with other ethnic backgrounds fell somewhere in between.

Join a Stem Cell Registry

Mixed Match does a fine job raising awareness about the worldwide need for multiethnic bone marrow and stem cell donors. Watch it online here.

Consider joining the registry, especially if you have mixed ethnicity. Registries are connected worldwide: life-saving bone marrow or blood stem cells can be transported quickly around the world to recipients who urgently need cures.

Related Information:

[1] Gragert L, Eapen M, Williams E, et al. HLA Match Likelihoods for Hematopoietic Stem-Cell Grafts in the U.S. Registry.  N Engl J Med 2014; 371:339-348. DOI: 10.1056/NEJMsa1311707

The best gifts: Join the stem cell registry or donate blood

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Tired of the excess commercialism around the holidays? This year, give a selfless gift instead: join the bone marrow stem cell registry or donate blood.

Join the stem cell registry

Right now, hundreds of Canadians with life-threatening blood cancers such as leukemias, lymphomas and other blood disorders are out of options and need to find a matched donor for a stem cell transplant.

stem cells

Stem cell donation facts

Many people have no idea how stem cell donation works and there are many misconceptions. Here are three things you should know:

1. Family members are most likely NOT going to be matches. A donor’s stem cells must match the recipient’s as closely as possible across ten human leucocyte antigen (HLA) markers, proteins found on the surface of a cell that tell the body if the cell is friend or foe. The objective is to minimize the risk of developing a life-threatening complication called graft-versus-host disease (GVHD) where the donor’s cells attack and destroy the patient’s cells. Since we inherit half of our HLA markers from our mothers and half from our fathers, there is only a 25 per cent chance that patients needing a transplant will find a match in related family members.

2. If you are a match for someone, they could be anywhere in the world. Some people don’t want to join the registry or donate unless they can be a match for someone they know. But due to the complexity of needing to find the right HLA match for each patient, that’s highly unlikely to work. Through the power of crowdsourcing and collaboration, more patients around the world find life-saving matches through international registries.

Canadian Blood Services’ OneMatch Stem Cell and Bone Marrow Network is one of more than 70 partners that belong to the World Marrow Donor Association’s international registry, which has more than 28 million people listed. The truth is that no country’s registry can meet the needs of their own patient population. Case in point: every year, an average of 60 stem cell donations are made by Canadians to save international patients and an average of 260 stem cell donations from other countries save the lives of Canadian patients.

3. Stem cells are usually collected from the blood. Peripheral blood collection, called apheresis, is the preferred collection method for about 60-70 per cent of donations. For several days before donation day, donors inject a drug called filgrastim to overproduce stem cells and promote their release into the bloodstream.

Neupogen filgrastim

Typical symptoms include fatigue and bone and muscle aches, which go away after the donation is finished. For the donation, the donor sits in a procedure chair intravenous lines are inserted into veins in both arms. Specialized blood-filtering equipment draws blood through one arm, filters and collects stem cells into a collection bag and returns the remaining blood back into the other arm. The collection takes about four to five hours. If enough cells are not collected the first day, donors may be asked to donate again the following day.

I am proud that my daughter, at the age of 22, donated stem cells for an unknown recipient in the spring of 2013. Here she is hooked up to the apheresis machine at the Princess Margaret Cancer Centre in Toronto.

stem cell donation apheresis

Less frequently, but sometimes necessary to guarantee the best cells for the recipient, a bone marrow operation is required. Marrow is drawn by needle from the hip bone while the donor is under general anesthesia, so they do not feel any pain.Donors usually return to normal activities immediately after surgery. If they experience pain or bruising for a few days after, it can usually be handled with over-the-counter medication.

With highly coordinated collaboration, international organizations transport stem cells around the world within 24 hours of donation.

Joining the OneMatch Stem Cell and Marrow Network is easy. If you are in good health and between the ages of 17 and 35, you may be eligible.

Donate blood

If you are disappointed that you are not in the target age range to donate stem cells, you can still give a precious gift of life by donating blood.

Canadian Blood Services reports that 55,000 more new blood donors are needed in the next five months before the end of March 2017 to maintain the national blood supply and meet the needs of Canadian patients needing transfusions for surgeries, procedures, cancer treatments, or to help manage other diseases. Leukemia patients, for example, need up to 8 units of blood a week to help replace the blood cells that chemotherapy treatments deplete.

Find a local clinic and book an appointment online through Canadian Blood Services.

When I was six years old, I was very lucky to receive a blood transfusion provided by an unknown donor to replace blood loss after a complication following tonsil surgery.

It all goes around and comes around.

Dedication

This post is dedicated to Chris LeBrun. He was a remarkable fellow who received a stem cell transplant from an anonymous donor in April 2015 and unfortunately passed away on December 6, 2015. I had the honour of interviewing Chris in October 2015 to learn about his journey and his advocacy efforts to promote stem cell and blood donation awareness.

Chris knew that his best chance to find a matched donor to treat his acute lymphoblastic leukemia (ALL), would be through the international registry. To pay it forward, he worked tirelessly to raise awareness to help others in need through local clinics and blood drives.

Together with his family and friends, their efforts added more than 1,000 potential donors to the international stem cell registry through swab clinics and more than 500 units of blood to local blood banks through Canadian Blood Services’ Partners for Life program in 2015 alone.

His family and friends continue to celebrate his life and his legacy of helping others through the public Facebook group Get It Done for Chris LeBrun. If you would like to help them reach their goal of 50 blood donations this December to celebrate the anniversary of Chris’ 50th birthday, use Partners for Life code # GETI 278531.

New jobs in regenerative medicine

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Canada is a hotbed for the commercialization of regenerative medicine and stem cell discoveries. How appropriate, since two Canadian doctors, James Till and Ernest McCulloch discovered transplantable stem cells at the Ontario Cancer Institute in Toronto in 1961.

Accelerated growth in this industry sector is opening up new job opportunities for medical laboratory technologists. The benefits include working with scientific discoveries and leading-edge technologies to find exciting new treatment options that can help people living with devastating diseases and conditions.

stem cells

Check out my story From Bench to Business in the Winter 2015 issue of the Canadian Journal of Medical Laboratory Science. I enjoyed interviewing Lianne Witt, technical director of laboratory and client services at Insception Lifebank, Canada’s largest private cord blood bank, and Emily Titus, manager of technology at CCRM. It was great to learn about their career paths and why they feel this is a great time to be working in the fields of regenerative medicine and stem cells.

What medical lab technologist wouldn’t want to work with specialized equipment such as the Microsquisher?

Click on the image below for the full story:

From Bench to Business: new jobs in regenerative medicine and stem cells

You may also be interested in reading some of my other posts on stem cells and learn more about why I am fascinated by the topic:

AHCJ Stem Cells Session – Part 1

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At AHCJ’s Health Journalism 2015 conference, it was a sincere privilege to hear global leaders in the field of stem cells discuss the latest advances and challenges in the field. As a journalist and as an advocate for a family member who donated stem cells in 2013, I found this session fascinating.

Many thanks to Lisa Krieger, science and medicine writer at the San Jose Mercury News for organizing and moderating the panel discussion. The speakers were:

  • Irving Weissman, MD, Director, Stanford Institute of Stem Cell Biology and Regenerative Medicine, Comprehensive Cancer Center, and Stanford Ludwig Center for Stem Cell Research at Stanford; V&D Ludwig Professor of Clinical Cancer Research; Professor, Pathology, Developmental Biology, and by courtesy, Neurosurgery and Biology
  • Maria Grazia Roncarolo, MD, co-director of the Institute for Stem Cell Biology and Regenerative Medicine, the George D. Smith Professor in Stem Cell and Regenerative Medicine, Professor of Pediatrics and of Medicine (blood and marrow transplantation), chief of the Division of Pediatric Stem Cell Transplantation and Regenerative Medicine, and co-director of the Bass Center for Childhood Cancer and Blood Diseases.
  • Daniel A. Lim, MD, Ph.D., assistant professor in residence of neurological surgery, director of restorative neurosurgery; faculty, biomedical sciences graduate program and Eli and Edythe Broad Center of Regenerative Medicine and Stem Cell Research, UCSF

In this post, I focus on the highlights from Dr. Weissman’s talk.

stem cells

Transferring technology too early stalls progress by decades.

Today, a last chance treatment for some cancers is an autologous blood stem cell transplant†, where a patient’s own stem cells are collected in advance of aggressive chemotherapy and radiation, and then transplanted back to reboot their blood-forming system from zero.

In the late 1990s though, Dr. Weissman’s research found that at least half of the mobilized blood from metastatic breast cancer patients still contained cancer cells, meaning that it still had the ability to grow cancer. He found a way to remove the cancer cells by 250 thousand fold before transplanting the blood-forming stem cells back and patented both the technique and the stem cells. But after he sold his innovation to a biotech company, the company shut down his clinical trials and shelved the innovation in favour of pursuing small molecules, a treatment avenue that held more promise for profitable drug development.

“One of the key barriers in our society is that we transfer technology too early from academic institutions whose only goal is to advance medical science to companies whose major goal is to make a profit, as fast as possible. They make business decisions which we live with.”

In a look back at the results, a 2011 Stanford study found that the patients who received the purified stem cells showed a remarkable cure rate of 33% at 15 years compared to only 7% for patients who received non-purified stem cells. The trials were early stage and small, but for a cancer treatment, that’s an impressive cure rate over a long time horizon.

“Nobody has gotten this treatment since 1998. We lost twenty years on this.”

Today, the innovation is back in Weissman’s hands at Stanford. He does not own the patent, but he is helping plan a new study to prove the technique’s effectiveness in a non-profit setting. If it works, this method could provide cancer-free blood stem cells for patients with a variety of cancers, including aggressive and metastatic breast cancers, lymphomas and myelomas.

For more information about how Dr. Weissman’s technique traded hands with the biotech company and was stashed in a drawer since, read this story by Lisa Krieger.

I wonder how many other academic breakthroughs have been transferred too quickly to big business, only to be shelved, putting profits ahead of patients.

I spoke with Dr. Weissman after the session and asked him about his thoughts on progress in the area of allogeneic† blood stem cell transplants. He said that within 10 years, regenerative medicine will advance to the point where we will no longer need donors for blood stem cell transplants.

† In an allogeneic blood stem cell transplant, a different person donates stem cells for a recipient. Read more about allogeneic donation in my post Risks for Healthy PBSC Donors? One Family’s Powerful Experience on Paul Knoepfler’s Stem Cell Blog.