Blood Health

SEPTEMBER 2018 |

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Blood Health

Charles Esten

Actor Charles Esten shares his inspiring story of watching his daughter fight against her leukemia diagnosis.

DISCOVER how one man battled stage IV cancer and attributes his survival to clinical trials.

LEARN more about chronic myeloid leukemia and how to best ensure remission detection.

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Read about the littleknown effects of sickle cell disease and the importance of proper treatment. Page 5

Browse more stories online, including how education and advocacy are providing new hope for sickle cell disease. Online

This couple’s love story was founded on a lifesaving bone marrow transplant from an unlikely source. Page 6

Exciting Breakthroughs in Hematology Offer New Hope to Cancer Patients

Revolutionary new therapies in the understanding and treatment of blood diseases are offering new paths for patients who were previously without hope.

F

Alexis Thompson President, American Society of Hematology

rom life-long blood disorders like sickle cell disease and hemophilia to sudden, life-altering blood cancer diagnoses like leukemia or multiple myeloma, blood diseases can be the source of so much uncertainty for patients and their caregivers. Fortunately, there is much to be hopeful for in the understanding and treatment of these disorders. The American Society of Hematology (ASH) is working with scientists, research institutions, pharmaceutical companies and policymakers to accelerate scientific discovery, drug development and deployment of new therapies to conquer blood diseases.

A revolutionary leap In 2017, a revolutionary new therapy made the leap from the research bench to the bedside when the U.S. Food and Drug Administration (FDA) approved a groundbreaking CAR T-cell therapy to treat certain leukemia patients. In a process that once would have sounded like science fiction, this therapy involves taking a person’s immune cells from their bone marrow, reprogramming them to target their cancer and returning them to the patient.

CAR T-cell therapy is a prime example of precision medicine’s potential to revolutionize the care we deliver to our patients. CAR T-cell therapy has also been approved for some patients with another blood

cancer called lymphoma. Almost every day, clinical trials are reporting further success in treating patients with other types of blood cancers, such as multiple myeloma, using CAR T cells. ASH is committed to improving the safety, effectiveness and availability of revolutionary cancer therapies, and we are actively promoting research to hasten their delivery.

In the 1960s, the first successful trials in chemotherapy were reported in people with leukemia.

Today, with scientific breakthroughs in precision medicine, hematologists are mapping the frontiers of medicine, and ASH is honored to play a key role in fostering this groundbreaking work. Every day,

our 17,000-plus members are hard at work to improve the lives of millions of patients around the world.

Getting involved Perhaps you or a loved one has been affected by a blood disorder.

There are ways to support new research that will contribute to novel treatments for the disease. By becoming an advocate for hematology, you can help increase public awareness about blood disorders and support state and federal funding for research, which is critically needed to make this exciting science count for patients. n

Publisher Dana Lenkowsky Business Developer Mac Harris Managing Director Luciana Olson Director of Product Faye Godfrey Designer Chris Espino Copy Editor Lauren Hogan Production Coordinator Josh Rosman Director of Sales Shannon Ruggiero Director of Business Development Jourdan Snyder Content Strategist Mina Fanous Cover Photo Jacquelyn Marushka All photos are credited to Getty Images unless otherwise credited. This section was created by Mediaplanet and did not involve USA Today.

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Learning to Stand Tall: Overcoming Leukemia at Age 2 Charles Esten, who plays Deacon Claybourne on TV's "Nashville," still remembers the devastating moment that changed his role as a parent.

A

ddie, actor Charles Esten's then two-and-a-halfyear-old daughter, hadn't seemed herself after the removal of a small growth on her leg. Charles and his wife Patty were determined to find out why. "She was pale, grumpy and these little black spots emerged on her legs," Esten recalls. “Within minutes of a blood test, we were sent to Cedars-Sinai Hospital."

It was there that the Estens first learned that acute lymphoblastic leukemia could be the cause of their daughter's symptoms.

"The doctor mentioned the 85 percent survival rate," Esten says. The good news is that Addie was in the majority; she is now a healthy 18-year-old with few, if any, memories of her two-year course of chemotherapy. In the years since Addie's diagnosis, the survival rates for children with leukemia diagnoses have soared above 90 percent.

However, looking at all blood cancers combined, one-third of patients don't survive five years past diagnosis despite strides in survival rates. That's just one reason why the Estens are committed to working with the Leukemia & Lymphoma Society (LLS).

"One-third of patients don't survive five years past diagnosis despite strides in survival rates."

Walking on In 2014, Esten was named the Honorary Chair for the National Light the Night Walk, an event held in almost 200 cities across the country. Esten says, "Every year, I can see Addie get more involved

and engaged, and it is not just something her mom and I are doing. This is her cause now, too.”

Today Addie only needs to have her blood tested once a year to rule out a recurrence. "There are doctors and nurses and researchers whom I've never met, and fundraisers I will never know, who made Addie's chance of surviving 85 percent instead of 20 percent," Esten says.

This year’s walk in Nashville takes place on November 2nd and Team Addie will cross the line of raising $1 million dollars for the LLS. Liane Bonin Starr

Detecting Remission and Minimal Residual Disease in Chronic Myeloid Leukemia A groundbreaking new class of drugs known as tyrosine kinase inhibitors will make it easier to manage chronic myeloid leukemia. els, which may delay detection of disease progression and impact changes to disease management. This limited sensitivity also interferes with when physicians can safely discontinue a patient’s therapy. Fifty percent of patients monitored under these current methods, and whose therapy is stopped, will experience relapse and disease progression.

Thus, a better method for BCR-ABL monitoring is needed.

Chronic myeloid leukemia (CML) is a type of blood cancer diagnosed by the presence of the “Philadelphia chromosome,” an abnormal translocation between chromosomes 9 and 22. This creates a gene fusion (BCR-ABL) that results in uncontrolled myeloid cell growth. However, thanks to a class of drugs known as tyrosine kinase inhibitors, CML has become easier to manage through routine monitoring of BCR-ABL. Monitoring gene fusions BCR-ABL monitoring informs physicians of a patient’s disease stage. Patients that respond well to drugs may have their disease classified as a minimal detectable disease (MDD) or minimal residual disease (MRD).

Stable BCR-ABL levels at MRD is an indicator of a stable disease. A change to BCRABL levels indicates disease progression.

Current methods for monitoring BCRABL have limited sensitivity and significant variability, especially at low BCR-ABL lev-

Available testing Digital PCR technology improves the sensitivity and reproducibility of BCR-ABL detection and quantification. Digital PCR separates a sample into thousands of discrete partitions and analyzes each one inde-

pendently, enabling lower levels of BCR-ABL to be quantified. This may inform physicians about their patient’s disease status, potentially improving patient outcomes.

PCR-based BCR-ABL tests are available in the market today, and a digital PCR-based test will soon arrive in clinics across the United States. The digital PCR test currently under FDA review is not indicated, nor has the criteria been established to determine when therapy can be stopped. However, the low-level detection of BCR-ABL may help physicians to provide their patients with the best possible treatment. n Viresh Patel, Ph.D., Diagnostics Marketing Director, Digital Biology Group, Bio-Rad Laboratories

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What You Might Not Know About Sickle Cell Disease

Richard Drachtman, M.D., explains why more people should be aware of sickle cell disease and who is most at risk.

What is sickle cell disease and what causes it?

Sickle cell disease is a genetic illness that is autosomal recessive, which means you have to inherit the defective gene from both of your parents. Red cells carry the oxygen through the body and are usually flexible and disc-shaped. In the sickle cell disease, the red cells are shaped like a crescent moon.

These cells get stuck and can’t deliver oxygen throughout the body. As a result of cells not delivering oxygen, affected patients can have pain when cells are sickled, and chronic

damage to vital organs such as their brain, lungs and kidneys. The abnormal red cells also don't live as long as regular red cells, which makes it harder to deliver oxygen.

Patients often have chronic fatigue due to anemia, which means that there is an abnormally low number of red cells. Another way to think about sickle cell disease is as a “traffic jam� in the blood.

What do you think everyone should know about sickle cell disease?

Sickle cell disease is caused by a single amino

acid mutation that is thought to have evolved to help protect against malaria, which is why it is most common in patients of African and Mediterranean descent. As many as 10 percent of African Americans carry this gene, making sickle cell disease quite common.

"Even though sickle cell disease is very common, it is important to get treated at sickle cell centers where doctors and nurses are experts in the illness."

The only current cure is bone marrow transplantation which is only available to a small number of patients, but there are other

treatments available and a number of clinical trials that are very promising.

About 100,000 patients are affected in the United States, and many more are affected worldwide. Patients and family members need to know that with proper care, patients with sickle cell disease can have great quality of life and not let sickle cell disease control them. They also need to be aware that by supporting research and clinical trials, patients will do even better in the future. n

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Battling Stage IV Cancer and the Journey to a Full Recovery

PHOTO: ERIC VITALE PHOTOGRAPHY

Chuck Colletti, spokesperson for the Leukemia & Lymphoma Society, talks about how his young daughter inspired him to find every way possible to fight his cancer diagnosis.

How Two People Found Each Other After a Lifesaving Donation Marcus Cato was diagnosed with myeloid leukemia with little hope of a cure until a young woman decided to donate her bone marrow to a complete stranger.

At 20 years old in 2016, Marcus Cato was a student who loved baseball and planned on studying business at Fresno State University. He was young and carefree, but when Cato went in for his annual blood test, he discovered that he had been diagnosed with myeloid leukemia, a fast-growing cancer of the blood and bone marrow. His chances of surviving without a bone marrow transplant were slim to none.

Finding a match It is more likely for a patient-donor match to occur between individuals with the same ancestry, which was an issue for Cato as someone of both Afri-

can American and Caucasian descent.

The human leukocyte antigens (HLA)­ — the gene complex needed for a successful bone marrow transplant — in African Americans is also particularly difficult to match.

An unlikely source of hope In 2010, 22-year-old Matene Cates was visiting a town where a DKMS registration drive was being held. On a whim, Cates decided to register to be a bone marrow donor.

Six years later, her day came. Cates was at work as a nurse in Massachusetts when she received a call notifying her that she was a lifesaving match for

someone in need.

After the transplant was done and Cato received Cates' bone marrow, they were able to communicate anonymously. Cates sums up her feelings by saying, “I love him. We have a connection that can never be duplicated because he has a piece of me, literally and figuratively.”

A little over a year-and-a-half posttransplant, Cato and Cates met for the first time at the annual DKMS gala. The gift Cates gave to Cato was more than words; it was an action born of love.

James Kirkland, Content Strategist, DKMS

When you were diagnosed, what were the very first thoughts that went through your head?

I thought, ‘This has to be a mistake, I don’t feel sick.' Pretty much a surreal feeling like I was watching myself in the third person being told the news. It took a few weeks before I accepted the diagnosis.

You have a very young daughter.

How did she have an impact on your journey to recovery?

My daughter was six months old when I was originally diagnosed with cancer. I had her when I was almost 50 years old, and then six months later, I was diagnosed with stage IV cancer. I put it in my mind from the get-go that losing this battle was not an option because Gabriella needed me as much as I needed her.

How did you determine CAR-T therapy was your best option?

The success rate that CAR-T therapy was having was incredible, so when I learned that Hillman Cancer Center had this trial going on, there really wasn’t any question about what option we were choosing. One of the Leukemia & Lymphoma Society’s (LLS) most vital services is their Information Resource Center, and is staffed by information specialists who can assist patients and caregivers through cancer treatment, financial and social challenges and give accurate, up-to-date disease, treatment and support information.

Now that you’ve been in remission, how do you continue to advocate for the blood cancer community?

I started going to fundraisers and visiting the LLS on a regular basis. Cancer changed me for the better. I found a silver lining in the dark cloud of drugs, treatments, tests and statistics.

Without the LLS to open opportunities like this, I would just be Chuck Colletti fighting my own battle. Instead, I’m Chuck Colletti, survivor and advocate for the LLS.

POLYCYTHEMIA VERA (PV) IS A RARE, CHRONIC BLOOD CANCER Unless you or a loved one has been diagnosed with PV, you may not have heard about it. PV is part of a group of diseases called “myeloproliferative neoplasms” or MPNs. With PV, a person’s body makes too many red blood cells, white blood cells, and platelets. Too many red blood cells can cause the blood to thicken. Thicker blood doesn’t flow normally through arteries and veins.

I S Y O U R P V U N D E R C O N T R O L? Check off the information below that applies to you.

It’s important to keep your PV under control to help reduce the risk of complications such as heart attack or stroke.

Regular monitoring and medical care can help detect changes in your condition. Keeping your blood counts—particularly your hematocrit (a measure of red cells in the blood)—at the right levels is an important goal in managing PV. By tracking your symptoms and blood counts, you and your healthcare team can work to control your disease and reduce the risk of complications.

START THE CONVERSATION WITH YOUR HEALTHCARE PROFESSIONAL It is important to tell your Healthcare Professional about any symptoms you have, even if you are not sure they are related to your PV. Talking to your Healthcare Professional about your symptoms helps you both: • Understand how PV is affecting you • Follow how your PV is changing over time

Get more information about PV. Visit PVvoices.com today.

If you checked any of the boxes above, it is important to talk to your Healthcare Professional to understand if your PV is under control.

Voices of MPN is a registered trademark of Incyte Corporation. © 2016, Incyte Corporation. All rights reserved. UPM-1093 01/16

C SO OM TH O IN E N G U IN .S .!

CAN THIS DROPLET CHANGE HER PATIENT’S LEUKEMIA TREATMENT? For more information, please visit our booth at the following conference locations:

College of American Pathologists 2018 Annual Meeting, Chicago, IL Association for Molecular Pathology 2018 Annual Meeting, San Antonio, TX American Society of Hematology 2018 Annual Meeting, San Diego, CA Precision Medicine World Conference 2019, Santa Clara, CA American Association for Cancer Research 2019 Annual Meeting, Atlanta, GA

To learn more about Bio-Rad’s BCR-ABL test, visit Bio-Rad.com/BCR-ABL18 QXDx AutoDG ddPCR System The QXDx AutoDG ddPCR System and the QXDx BCR-ABL %IS Kit are CE-IVD marked. They are currently under review with the FDA and are not available in the U.S. Bio-Rad, QXDx, AutoDG, Droplet Digital PCR and ddPCR are trademarks of Bio-Rad Laboratories, Inc. in certain jurisdictions.