Blood Health

BLOOD HEALTH

MARCH 2020 | FUTUREOFPERSONALHEALTH.COM

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Joe Anoa’i

The WWE fighter on the fight of his life against a rare leukemia

The “Survivor” champ who survived Hodgkin’s lymphoma How one man’s halfsiblings stepped up to save his life

Join Us at These Conferences and Events

SCDAA National Sickle Cell Advocacy Day April 20-21, 2020 Washington, D.C. 2020 ADRP Conference May 19-21, 2020 Phoenix, AZ SCDAA 7th Annual Walk With The Stars July 11, 2020 Baltimore, MD ABC Summer Summit & Medical Director Workshop July 21-23, 2020 Cleveland, OH ASH Meeting on Lymphoma Biology August 6-9, 2020 Chantilly, VA ASH Meeting on Hematologic Malignancies September 11-12, 2020 Chicago, IL SCDAA 48th Annual National Convention October 13-17, 2020 Orlando, FL 62nd ASH Annual Meeting & Exposition December 5-8, 2020 San Diego, CA ABC Annual Meeting March 8-10, 2021 Arlington, VA

Inside the Work Being Done to Conquer Blood Diseases

D

o you know anyone with anemia, a blood clot, or excessive bleeding, or someone who received a blood transfusion of red cells or platelets? Or do you know anyone with a chronic blood disease like sickle cell disease or hemophilia? Have you or has someone you know had a blood cancer, such as leukemia, lymphoma, myeloma, or a myeloproliferative neoplasm?

Hematologists often take care of people with these diseases and do laboratory and clinical research to develop better treatments. 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.

revolutionized the treatment of many serious blood diseases.

While treatments for some blood disorders have improved due to tremendous progress in clinical research and development of new therapies, other areas face ongoing challenges. A variety of blood-related diseases — from cancers like lymphoma and leukemia to non-malignant diseases like hemoglobinopathies, platelet and bleeding disorders, and rare diseases of the blood-forming system — continues to be associated with significant health problems and premature death, and needs attention to reduce their burden and improve quality of care worldwide.

Harnessing technology For more than 60 years, hematologists have made incredible strides in research that has

The first understood molecular disease Sickle cell disease (SCD) is an inherited blood disorder that

Stephanie J. Lee, M.D., 2020 President, American Society of Hematology (ASH), Fred Hutchinson Cancer Research Center; Professor, University of Washington affects nearly 100,000 Americans. SCD causes red blood cells to become rigid and sickle-shaped, leading to reduced oxygen flow to almost every organ, causing crises of severe pain, stroke, organ damage, and even death.

In the past year, we’ve seen tremendous progress with the approval of two additional treatment options for those living with SCD, and several research teams from around the globe are using the latest advancements in precision medicine to make cures in SCD possible. This includes using gene therapies and genome-editing techniques to correct the genes responsible for this disease.

It’s still too early to deliver many of these therapies and cures to people, but scientists are hard at work making them a reality. n

Publisher Brianna Roberts Business Developer Gretchen Pancak Managing Director Luciana Olson Director of Sales Stephanie King Director of Content and Production Faye Godfrey Lead Editor Mina Fanous Lead Designer Tiffany Pryor Copy Editor Sydney Scott Designer Celia Hazard Cover Photo WWE All photos are credited to Getty Images unless otherwise specif ied. This section was created by Mediaplanet and did not involve USA Today.

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PLEASE RECYCLE

Ensuring the Availability of the Nation’s Blood Supply for All

PHOTO: COURTESY OF ROBERT VOETS/CBS

More diversity among blood donors and increased participation by all eligible blood donors is required to continue meeting patient needs.

A safe and ready blood supply must be constantly maintained to meet the needs of 1 in 7 patients entering a hospital. America’s Blood Centers and its member blood centers rely on the altruism of a diverse pool of donors of all ethnicities to ensure the availability of blood for all patients.

A “Survivor” Champion on Surviving Cancer Ethan Zohn won “Survivor: Africa” in 2001.

Then he was diagnosed with a rare cancer and his life changed.

E

than Zohn is a survivor in every sense of the word. A former professional soccer player and champion of the third season of “Survivor,” Zohn was diagnosed with a rare form of Hodgkin’s lymphoma in 2009.

“It forced me to hit the pause button on my life,” Zohn recalls.

The hardest part “The easy part is being sick,” Zohn says.

“It’s after cancer — it’s the dump trucks full of uncertainty, it’s the invisible scars that need healing — that, for me, was and still is the more difficult part of cancer.

It’s hard to manage that anxiety and the fear of your cancer coming back.”

Cancer-free since 2012, Zohn saw an opportunity to join the fight against the disease. “One of my mottos in life is ‘never let a crisis go to waste.’” Zohn hopes others can benefit from his experience. “Everyone always said, ‘if there’s

anything I can do to help, just let me know.’ I can tell you now I didn’t let anyone know. So my advice is, if you need something, ask for it. As a caregiver, listen, try to keep things as normal as possible. And just do it — don’t wait for the person to reach out and ask for help.”

Making a comeback Zohn’s dedication to making a difference has kept him busy on the speaking circuit, and he returned to “Survivor” for season 40 this year. “I’m a science experiment — there’s no way I should be alive!” he says with a laugh. “I can guarantee you there’s not one person on the planet that’s been through multiple rounds of chemotherapy, 22 blasts of radiation, and two bone marrow transplants, and has gotten themselves back to health all to play the game ‘Survivor’ again!” n Jeff Somers

Maintaining the blood supply Patients nationwide rely on community blood centers to collect, test, and provide blood to hospitals, ensuring both the safety and availability of blood whenever and wherever it is needed. Once donated, it takes 24-48 hours to process, test, and prepare a pint of blood for transfusion, requiring blood to already be available for regular patient use or in times of emergency.

With more than 30,000 pints of blood used daily in the United States and a shelf life of only 42 days for red blood cells and five days for platelets, there is constant demand.

The need for diverse donors Diverse donors of all ages help community blood centers and health care providers assure patients that their blood needs will be met.

Individuals receiving treatments for sickle cell disease and certain blood disorders may have more complex blood compatibility needs due to the frequency of the number of blood transfusions they receive as part of their treatment. These patients can develop antibodies that require a more precise ethnic or medically based match, highlighting the need for diversity amongst all eligible blood donors.

Donation eligibility A recent report indicated that more than 60 percent of the American population is eligible to give blood, yet less than 10 percent actually give even once during the course of a year. Type O– blood is the universal donor and can be transfused to any other blood type. However, only 8 percent of the United States population has O– blood, increasing the need for a large, diverse base of donors daily.

Help make a difference within your community, and encourage friends and family to join you by contacting a local blood center and scheduling an appointment to donate.

Kate Fry, MBA, CAE, Chief Executive Officer, America’s Blood Centers MEDIAPLANET • 3

Working Together To Find New Therapies for Childhood Cancers There’s an urgent need to find new therapies to treat childhood cancers, 40 percent of which are blood cancers.

The Leukemia & Lymphoma Society (LLS) is tackling the issue with this goal: to help young patients survive their cancer and thrive after treatment.

Typically, pediatric cancer patients are treated with the same toxic combinations of chemotherapies that were developed decades ago. Many die, and often those children who live have significant lifelong complications.

In the past 40 years, only four oncology drugs have been approved for first-use in kids.

“The system is broken for development of drugs for children’s cancer,” says Gwen Nichols, M.D., chief medical officer at LLS. She continues, “Although we’ve had quite a bit of success in pediatric cancer, there’s more we need to do. These are critical patients who need more attention.”

A new initiative LLS is working to find safe and effective treatments that precisely target a patient’s cancer without harming the rest of the child’s body.

It has launched the LLS Children’s Initiative, a $100 million multi-year effort that more than doubles its investment in pediatric cancer research grants, expands education and support services for children and families, advocates for the development of new treatments, and breaks down barriers to care.

Precision medicine Treating pediatric leukemia has had a onesize-fits-all approach. But Nichols says that’s not working. Enter LLS PedAL (Pediatric Acute Leukemia), a groundbreaking global precision medicine clinical trial in acute pediatric leukemia. The goal is for the program to have up to 200 clinical sites worldwide, including the United States. LLS PedAL will consolidate pediatric cancer data from multiple institutions. The hope is for the trial to begin treating its first patient by later this year.

“We can all partner together to actualize this work to get drugs approved for the kids,” says Nichols, co-chair of LLS’s PedAL initiative. “The more we share, the better.”

Kristen Castillo 4 • FUTUREPERSONALHEALTH.COM

The Promise and Hope of Family Nick Howe never expected a lymphoma diagnosis to lead him to find 10 halfsiblings and participate in one of the first CAR T-cell therapy clinical trials.

A

t 28 years old, Nick Howe never imagined a morning cup of coffee with his mother would change his life forever. Howe was explaining to his mother that starting their family had not been easy for him and his wife Rachel.

“The conversation moved into a discussion of various reproductive treatments,” he said. “I told her I would rather adopt.”

His mother was shocked.

“She asked me, ‘What if I were to tell you the reason why you and your sister are here today is because of a donor?’” said Howe.

A turn for the worse Three years later, Howe, at 31, and his wife were still struggling to start their family.

Howe also began to experience a variety of severe health issues, including liver and kidney failure, and the loss of 55 pounds within the span of a couple of months.

After some time in the hospital, he was diagnosed with diffuse large B-cell lymphoma (DLBCL) — an aggressive, or fast-growing, type of non-Hodgkin’s lymphoma (NHL) — and was told to start treatment immediately.

Howe’s journey was fraught with challenges and setbacks. After his autologous stem-cell transplant failed, Howe relapsed in less than 100 days and his doctors began preparing him to undergo an allogeneic stem-cell transplant.

This treatment relied on Howe finding a donor who was a complete genetic match. His doctors began testing his immediate family as possible stem cell donors. With none resulting in a complete match, Howe remembered the life-changing conversation he had with his mother three years prior.

“Shortly after my conversation with my mother, I began a search for my half-siblings,” he said. Through that search, he identified and connected with 10 half-siblings. One of them would be the person whom Howe calls his “Hail Mary.”

Life-saving connection Howe met his half-brother, who happened to be a healthcare professional working at the same medical institution where Howe was being treated. Howe later learned his half-brother was the match that could potentially save his life.

At the same time, an additional treatment called chimeric antigen receptor (CAR) T-cell therapy became available in the United States. Faced with the difficult decision between an allogeneic stem-cell transplant or CAR T-cell therapy (which was still in clinical trials), Howe decided to look at the experimental therapy as a chance to contribute to the greater good.

“I decided to adopt the mindset of being an astronaut,” he said. “Like an astronaut, I had an obligation to my fellow man to discover the unknown in hopes of finding something that would save not just my life, but also the lives of the lymphoma patients who would come after me.”

Highly experimental Ultimately, Howe decided to undergo CAR T-cell therapy, becoming just the fifth person in the world to be treated with this type of therapy as part of the clinical trial.

When the day came to begin CAR T-cell therapy, Howe spent seven days each in inpatient and outpatient observation for side effects monitoring and data recording. He was shocked to learn he only experienced minor vertigo.

Three weeks after receiving treatment, he and his wife were elated to find out the treatment was a success and he was clear of any disease. Shortly after, they welcomed their daughter Julia into the world.

“People always ask me, ‘Nick, how should I interact with someone I care about who has cancer?’” he said. “My answer is simple: Give them a future.

Give them exploration and something to look forward to. We all need a future to survive for.” n Nichole Musumeci, Author, Lymphoma Research Foundation MEDIAPLANET

THIS IS MORE THAN HOPE.

THIS IS REMISSION. YESCARTA® is the first CAR T therapy for adults with certain types of non-Hodgkin lymphoma. YESCARTA empowers your immune system to destroy cancer cells, making complete remission possible when other treatments fail.

In a clinical study of 101 patients with non-Hodgkin lymphoma who had failed other treatments, YESCARTA helped 51% (52 out of 101) of patients achieve complete remission and 21% of patients achieve partial remission with ~9 month minimum follow-up. Not all patients in the clinical study who achieved a complete remission remain in remission.

• Complete Remission is the disappearance of all signs of cancer in response to treatment.

This does not mean the cancer has been cured • Partial Remission is a decrease in the size of a tumor, or in the extent of cancer in the body, in response to treatment

Learn more at getstartedwithYESCARTA.com

APPROVED USE YESCARTA is a treatment for your non-Hodgkin lymphoma. It is used when you have failed at least two other kinds of treatment. YESCARTA is different than other cancer medicines because it is made from your own white blood cells, which have been modified to recognize and attack your lymphoma cells.

IMPORTANT SAFETY INFORMATION What is the most important information I should know about YESCARTA? YESCARTA may cause side effects that are life-threatening and can lead to death. Call or see your healthcare provider or get emergency help right away if you get any of the following: • Fever (100.4°F/38°C or higher) • Difficulty breathing • Chills or shaking chills • Confusion

• Dizziness or lightheadedness • Severe nausea, vomiting, or diarrhea • Fast or irregular heartbeat • Severe fatigue or weakness

It is important to tell your healthcare provider that you received YESCARTA and to show them your YESCARTA Patient Wallet Card.

Your healthcare provider may give you other medicines to treat your side effects.

Before getting YESCARTA, tell your healthcare provider about all your medical problems, including if you have or have had: • Neurologic problems (such as • Liver problems seizures, stroke, or memory loss) • Kidney problems • Lung or breathing problems • A recent or active infection • Heart problems Tell your healthcare provider about all the medications you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

How will I receive YESCARTA? • Since YESCARTA is made from your own white blood cells, your blood will be collected by a process called “leukapheresis” (loo-kah-fur-ee-sis), which will concentrate your white blood cells.

• Your blood cells will be sent to a manufacturing center to make your YESCARTA.

• Before you get YESCARTA, you will get 3 days of chemotherapy to prepare your body.

• When your YESCARTA is ready, your healthcare provider will give it to you through a catheter placed into your vein (intravenous infusion).

The infusion usually takes less than 30 minutes.

• You will be monitored where you received your treatment daily for at least 7 days after the infusion.

• You should plan to stay close to the location where you received your treatment for at least 4 weeks after getting YESCARTA. Your healthcare provider will help you with any side effects that may occur.

• You may be hospitalized for side effects and your healthcare provider will discharge you if your side effects are under control, and it is safe for you to leave the hospital.

• Your healthcare provider will want to do blood tests to follow your progress. It is important that you do have your blood tested. If you miss an appointment, call your healthcare provider as soon as possible to reschedule.

What should I avoid after receiving YESCARTA? • Do not drive, operate heavy machinery, or do other dangerous things for 8 weeks after you get YESCARTA because the treatment can cause sleepiness, confusion, weakness, temporary memory and coordination problems.

• Do not donate blood, organs, tissues, and cells for transplantation.

What are the possible or reasonably likely side effects of YESCARTA? The most common side effects of YESCARTA include: • Fever (100.4°F/38°C or higher) • Low white blood cells (can occur with a fever) • Low red blood cells • Low blood pressure (dizziness or lightheadedness, headache, feeling tired, short of breath)

• Fast heartbeat • Confusion • Difficulty speaking or slurred speech • Nausea • Diarrhea

These are not all the possible side effects of YESCARTA. Call your healthcare provider about any side effects that concern you. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please read the accompanying Important Facts before you receive YESCARTA.

IMPORTANT FACTS This is only a brief summary of important information about YESCARTA and does not replace talking to your healthcare provider about your condition and your treatment.

(yes-kar-ta) THE MOST IMPORTANT INFORMATION TO KNOW ABOUT YESCARTA® YESCARTA may cause side effects that are life-threatening and can lead to death. Call or see your healthcare provider or get emergency help right away if you get any of the following: • Fever (100.4°F/38°C or higher) • Difficulty breathing • Chills or shaking chills • Confusion • Dizziness or lightheadedness • Severe nausea, vomiting, or diarrhea • Fast or irregular heartbeat • Severe fatigue or weakness It is important to tell your healthcare provider that you received YESCARTA and to show them your YESCARTA Patient Wallet Card. Your healthcare provider may give you other medicines to treat your side effects.

ABOUT YESCARTA YESCARTA is a treatment for your non-Hodgkin lymphoma.

It is used when you have failed at least two other kinds of treatment. YESCARTA is different than other cancer medicines because it is made from your own white blood cells, which have been modified to recognize and attack your lymphoma cells.

BEFORE RECEIVING YESCARTA, TELL YOUR HEALTHCARE PROVIDER ALL ABOUT YOUR MEDICAL PROBLEMS, INCLUDING IF YOU HAVE OR HAVE HAD: • Neurologic problems (such as seizures, stroke, or memory loss) • Lung or breathing problems • Heart problems • Liver problems • Kidney problems • A recent or active infection Tell your healthcare provider about all the medications you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

HOW YOU WILL RECEIVE YESCARTA • Since YESCARTA is made from your own white blood cells, your blood will be collected by a process called “leukapheresis” (loo-kah-fur-ee-sis), which will concentrate your white blood cells.

• Your blood cells will be sent to a manufacturing center to make your YESCARTA. • Before you get YESCARTA, you will get 3 days of chemotherapy to prepare your body.

(Continued)

• When your YESCARTA is ready, your healthcare provider will give it to you through a catheter placed into your vein (intravenous infusion). The infusion usually takes less than 30 minutes.

• You will be monitored where you received your treatment daily for at least 7 days after the infusion.

• You should plan to stay close to the location where you received your treatment for at least 4 weeks after getting YESCARTA. Your healthcare provider will help you with any side effects that may occur.

• You may be hospitalized for side effects and your healthcare provider will discharge you if your side effects are under control, and it is safe for you to leave the hospital.

• Your healthcare provider will want to do blood tests to follow your progress. It is important that you do have your blood tested. If you miss an appointment, call your healthcare provider as soon as possible to reschedule.

WHAT TO AVOID AFTER RECEIVING YESCARTA • Do not drive, operate heavy machinery, or do other dangerous things for 8 weeks after you get YESCARTA because the treatment can cause sleepiness, confusion, weakness, temporary memory and coordination problems.

• Do not donate blood, organs, tissues, and cells for transplantation.

THE POSSIBLE OR REASONABLY LIKELY SIDE EFFECTS OF YESCARTA The most common side effects of YESCARTA include: • Fever (100.4°F/38°C or higher) • Low white blood cells (can occur with a fever) • Low red blood cells • Low blood pressure (dizziness or lightheadedness, headache, feeling tired, short of breath) • Fast heartbeat • Confusion • Difficulty speaking or slurred speech • Nausea • Diarrhea These are not all the possible side effects of YESCARTA. Call your healthcare provider about any side effects that concern you. You may report side effects to the FDA at 1-800-FDA-1088.

GET MORE INFORMATION • This is only a brief summary of important information about YESCARTA. Talk to your healthcare provider to learn more.

• Visit www.YESCARTA.com or call 1-844-454-KITE (5483).

YESC0133 02/2020

YESCARTA, the YESCARTA Logo, KITE, and the KITE Logo are trademarks of Kite Pharma, Inc. GILEAD is a trademark of Gilead Sciences, Inc. © 2020 Kite Pharma, Inc. All rights reserved. YESC0137 02/2020

ADVERTORIAL

A WWE champion and former NFL player received a diagnosis that would change his life.

Known in the WWE as Roman Reigns, Joe Anoa’i is used to putting up a fight. The professional wrestler and former NFL defensive tackle is a fourtime WWE world champion and has headlined four consecutive Wrestlemanias.

But when the father of three learned his leukemia had returned in 2018, about 11 years after first conquering it, he knew this fight wasn’t one he could, or even wanted to, tackle on his own.

A fight for his life Anoa’i was first diagnosed

PHOTO: COURTESY OF WWE

WWE’s Joe Anoa’i on the New Fight of His Life

increases with the next two phases, and so do symptoms.

As a young, healthy football player, Anoa’i said the initial diagnosis felt like “a death sentence.”

“I didn’t believe it,” he said. “I went into major shock, and my mom took on the brunt of it.”

Left untreated, CML can carry over to the other organs of the body and prevent them from functioning normally.

Standard medications for CML helped Anoa’i beat the disease in both instances, but the battle wasn’t easy.

“I’m used to being banged up and sore, but this was different,” he said. “There was nothing in me that was allowing me to kick out of that feeling of pain — I couldn’t push through it.”

with chronic myeloid leukemia, or CML, at age 22, when his wife was pregnant with their first child. CML is a rare form of leukemia that begins in the bone marrow and spreads to the blood, where it triggers an overproduction of immature white blood cells, according to the American Cancer Society. While the cause is unknown, CML is most common in adults but can occur in children as well.

It can be diagnosed with simple blood tests.

CML has three stages: chronic, acute, and blast. During the chronic stage, standard oral drugs control the disease well and individuals are usually asymptomatic. The number of immature white blood cells

The Biotech Company Revolutionizing Blood Disorder Treatment ASC Therapeutics is developing genetic treatments that may be lifesaving for people with certain blood disorders.

A new perspective and purpose Now that he’s in remission again, Anoa’i said he has more gratitude for the little things, like being able to move freely without physical pain.

Every day, he listens to his body and prioritizes his physical fitness and nutrition.

He wants to use his platform as a celebrity to raise awareness about the importance of receiving an early diagnosis.

Undergoing an annual physical with blood labs can help doctors detect blood abnormalities that may point to CML, he noted. “Go the extra step and get the blood labs.

That way, you can live a long and healthy life,” he said.

Anoa’i’s battle with leukemia has changed his perspective on success. “Hopefully my story can continue to help others, as long as God continues to keep me healthy and keep breath in my lungs,” he said. “If I can help somebody in their struggle, I have been successful in my life.” n

ASC Therapeutics is a fast-growing biotechnology company developing curative gene-based therapies for inherited blood disorders, initially focusing on hemophilia A and B and beta thalassemia.

The replacement of defective genes in these conditions is believed to revolutionize their management, since patients will not require any further treatment after a single intervention. In other words, these patients will be cured for life.

Its parent company, Applied StemCell, is a leading biopharma discovery provider with over 11 years of experience in gene editing and stem cell technologies.

Leveraging this skill set, ASC Therapeutics has created an end-to-end platform for gene editing and therapy. Its research and development approaches focus on impacting patients’ lives with safe, life-changing, and affordable therapies. Its lead candidate for hemophilia B gene therapy will soon enter clinical trials after the company has offered best-in-class safety, low doses, fewer steroids, and sustained levels of clotting factor VIII in pre-clinical studies.

Melinda Carter

Oscar Segurado, M.D., Ph.D., Chief Medical Officer, ASC Therapeutics MEDIAPLANET • 7

Helping children and their families.

Myrrah, leukemia survivor

The Leukemia & Lymphoma Society (LLS) is a champion for families throughout their entire cancer experience. The LLS Children’s Initiative brings a wide array of free education and support services to blood cancer patients, parents and caregivers. At the same time, we’re setting out to make childhood cancer treatments safer and more effective. We won’t stop until we achieve cures and better care for children.

Contact us for one-on-one support at 1-800-955-4572 Learn more at www.LLS.org/Childrens-Initiative