Feeling thankful during a difficult transplant recovery

Posted November 6th, 2017 by Be The Match and filed in Patient Stories
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It’s not unusual for people to feel thankful to be alive after overcoming a life-threatening illness. But being thankful after a blood or marrow transplant (BMT) can be difficult if you are also coping

David, transplant recipient, with his sister and parents

with negative physical, emotional and financial issues after a transplant.

Read on to get expert advice from a BMT Social Worker on how you and your loved ones can feel more thankful even in difficult times.

The following are excerpts from an interview with Olivia Eusden, MSW, LICSW, BMT Social Worker, Patient Support Center, Be The Match®.

Is thankfulness possible for people who have serious complications or challenges after BMT?

Olivia: Feeling grateful can seem nearly impossible when you have serious complications or challenges after BMT. Thankfulness is possible, it just may look different from before. For protective reasons, we often resist the pain caused by serious life challenges. But, if we surrender to the pain, it’s possible to feel hope that things will get better someday – and if not better, easier.

Recognizing even small feelings of hopefulness can allow you to move out of the victim space and into the “survivor” role. As a survivor, you might find that you take nothing for granted. You also might find that BMT gave you more perspective, brought you closer to others, afforded you more patience, or made you more empathetic. Perhaps you’re more resilient and open to new experiences than you once were. All of these changes you notice about yourself after transplant are reasons for gratitude.

 

What are some ways people can cope with ongoing challenges after BMT?

Olivia: Ongoing challenges after BMT can feel defeating. You might feel isolated in your grief and pain. It’s important to remember that you aren’t going through this alone.

If it feels like others in your support system “don’t get it,” try connecting to a community of people who share your experiences. Find a support group through your transplant center, or register for Be The Match Survivorship Chats.

Support groups are safe spaces to share your fears and frustrations without feeling judged or misunderstood. It can also be a place for you and other patients to share what you’ve learned, suggest creative solutions to common problems, and provide emotional support. Participants in a support group may understand what you’re experiencing in ways that other people might not.

 

What advice do you have for someone struggling to feel thankful after BMT?

Olivia: If you’re struggling to feel thankful after BMT, try to redefine “gratitude.” At another time in your life, showing gratitude might have felt important in situations such as receiving birthday presents, or when someone cooked you a meal.

Now, in more challenging times, appreciation and gratitude happens on an entirely different level. Gratitude might look like thankfulness for breath and vitality, or an appreciation for waking up in the morning and going to bed at night.

Some patients share that instead of wishing their experience with BMT away, they learned to take illness/recovery as an opportunity to slow down, regroup, and listen to what was going on for them personally. In that sense, illness became a tool for personal growth and discovery that may not have occurred otherwise.

 

What advice do you have for someone feeling pressured to express thankfulness after BMT?

Olivia: With Thanksgiving in view, the cultural nod to thankfulness is blatant. If you receive or feel pressure around the holidays to express thankfulness, recognize that you may not be in a place where gratitude feels possible right now.

Gratitude is personal and will vary from person to person based on past experiences, personality and circumstances. Give yourself permission, or ask for permission from a close family member or friend, to feel less-than-grateful at this time.

No matter where you are in your survivorship, if you’re feeling like your thankfulness is lackluster, it can be meaningful to spend just one moment each day listening to what your body is telling you without judgment. Notice something you weren’t aware of before, and explore the possibility of carving out a tiny space for gratitude just for having this daily ritual.

One day, you will be able to find a bit of gratitude and it may make all the difference.

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The Be The Match Patient Support Center provides support, information and resources for transplant patients, caregivers and families.

Contact us using the information below to register for a Survivorship Chat, talk to another BMT recipient or caregiver through the Peer Connect program, or get one-on-one telephone counseling support from a licensed clinical social worker. All services are free.

 

Helping your child go back to school after transplant

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Going back to school is an important part of your child’s recovery. Your child may have missed several months or even a year or more of school. To

help ease your child back into the classroom, meet with teachers, school nurses and principals to:

  • Make a plan to catch up on missed school work.
  • Talk about your child’s medicines. Some medicines can make it hard to concentrate or have energy. Plan what to do if issues come up during the school day.
  • Ask about special services that schools are required to provide to K-12 students needing extra help, such as an Individual Education Program (IEP) or a 504 Plan.

If your child is in college, encourage them to meet with the school’s disabilities office or academic services to learn about the resources available.

Your child’s education rights

An IEP is a legal document that explains your child’s needs, the special services the school will provide and how the school will measure your child’s progress. An IEP requires an evaluation by a professional such as a school psychologist to see if your child qualifies for special services.

Some of the special accommodations in an IEP may allow your child to:

  • Have more time to finish assignments or take tests
  • Use a calculator and recording device
  • Complete assignments in a different way. For example, if your child has a hard time writing, ask if they can provide verbal answers.

Depending on your circumstances, something similar to an IEP called a 504 Plan may be best for you and your child. A 504 Plan is a document that explains services your child will receive but it’s not as detailed as an IEP.

Talk to your child’s teacher or school staff to learn more about IEPs and 504 Plans and to schedule an evaluation. Ask your transplant center social worker for help getting any required documents.

To learn more about special education services, go to ed.gov/parents

Tips to help your child adjust

Your child may feel excited, hesitant and self-conscious about going back to school. Classmates may not know what to say and will likely have questions.

You can help your child plan for how to answer questions. Some children and teens like to use a straightforward approach, like, “I was in the hospital and had a transplant to treat a disease. Now the disease is gone. I still wear a mask and take medicine to protect me from germs that could make me sick.” Depending on your child’s age and personality, they may want to answer these questions or have you or a teacher do this.

After being away from school and friends for so long, your child might also feel lonely or isolated. Talk to other parents and arrange for your child to spend time with friends. Let other parents know that your child isn’t too sick to play with other healthy, vaccinated kids.

Resources for you

  • One of the most important things you can do for your family is to take care of yourself. Be The Match Patient Support Center offers free information and support programs for BMT parent caregivers. Contact our BMT patient navigators at patientinfo@nmdp.org or 1 (888) 999-6743.
  • Read or order Living Now Magazine Special Issue: For Parents.
  • LD Online offers resources for parents wanting to learn more about the IEP process. Learn more at org/indepth/iep.
  • For tips on how to address bullying, visit gov or pacer.org/bullying.

Sickle Cell is Global

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FAQs Debunking the myths for Sickle Cell Awareness Month

Sickle Cell Disease Illustration

Sickle cell disease (SCD) is an inherited red blood cell disorder which affects approximately 100,000 people in the U.S. It causes organ damage, pain, low quality of life and even premature death. A blood and marrow transplantation is currently the only known cure.

Unfortunately, many people have misconceptions about transplant due to the lack of awareness and misinformation that is out there on the web. September is Sickle Cell Awareness month which makes it a perfect time to debunk many common myths about blood and marrow transplants for SCD. Addressing these myths and answering questions can help those struggling with SCD make informed decisions about their treatment options.

Debunking the myths; your questions, answered.

 
Can a blood or marrow transplant (BMT) cure sickle cell disease?

A blood or marrow transplant (BMT) can cure SCD. The unhealthy cells are replaced with healthy blood-forming cells from a donor. It doesn’t even involve surgery, but rather a process similar to a blood transfusion. To learn more about the entire process, click here.

My doctor didn’t tell me about transplant. Does that mean it isn’t an option for me?

If your doctor hasn’t mentioned transplant it doesn’t mean that it isn’t an option for you! Ask your doctor about it and they will send you to a transplant doctor who will tell you if transplant is an option for you.

What are the risks and benefits of transplant?

The risks and benefits of transplant can vary from person to person because people respond differently to transplant. A transplant doctor can tell you more.

Could someone with the trait still be my donor?

Many people think that if you have the SCD trait, you cannot be a donor. The truth is, having the trait doesn’t keep someone from being a donor. It is most important that you and your donor have closely matched human leukocyte antigens (HLA), which proteins are found on most cells in your body and are passed down from your parents.

How much does transplant cost?

Transplant can be expensive. If you talk to a case manager at your health insurance company, they can tell you the rules and what your plan covers.  Be The Match has grant programs to help some patients with costs before and after transplant. Call the Be The Match Patient Support Center at 1 (888) 999-6743 to learn more.

How will my life change after transplant?

Your life may change in many ways after transplant. You may not have SCD anymore, but recovering from a transplant takes time. A transplant doctor can talk to you about how your life may change after transplant. You can call us to talk with someone who’s been through transplant before at 1 (888) 999-6743

How many people have had transplant for SCD in the U.S?

Although it is estimated that thousands of people living with SCD could benefit from transplant, less than 1% of people eligible have had transplant. This table below gives you more detailed information.

Did you know…?

  • Only 18% of patients with SCD have a healthy, fully matched sibling donor. People can turn to the Be The Match Registry® for help finding an unrelated donor or umbilical cord blood unit.
  • Only 9% of patients with SCD can find a match through the registry due to the low number of African Americans on the registry and donor unavailability.
  • The chances of an African American patient finding a match on the registry is between 66-76%, the lowest compared to all other populations on the registry.
  • Patients are most likely to match someone of the same ethnic background, and doctors request donors in the 18-44 age group more than 9 out of 10 times.

Adapting to a new family dynamic: When a parent has a transplant

Posted July 6th, 2017 by Be The Match and filed in Patient Stories
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When Mary Clare had her transplant, her only daughter, Twila, was just 4 years old.

Suddenly, the family’s focus of attention and care shifted away from Twila and toward Mary Clare, which resulted in a wide range of changes that touched all 3 members of her family, and their relationships with one another.

My transplant and recovery changed my daughter’s world,” says Mary Clare, “Before diagnosis, Twila was the center of our small family and our days revolved around her school and activities.” But with her cancer diagnosis and transplant, Mary Clare found that she needed to be the center of attention because her successful recovery depended on receiving care from others.

Mary Clare accepted that she needed to rest and receive care and support. She turned to the school, neighbors and community for support. “We moved away from caring for my body and counting cells to nurturing our mental health and relationships,” she says.

She offers this advice to other parents in her situation: Although it is in all moms and dads to protect their children and keep them from harm, shielding them from a serious diagnosis and not talking about treatment is not beneficial. “We chose to be very open and factual about my cancer and transplant,” Mary Clare says.

Mary Clare and her husband found that being honest with their daughter about the science of transplant had an unexpected benefit: Twila developed a fascination with medicine and biology. “My daughter helped me do my physical therapy exercises and learned to assist in changing my IV, “she says, “I found it helpful to give my daughter a role in my care.”

Choosing to be open about her diagnosis and treatment also led Mary Clare and her husband to develop a unique way to help Twila cope with her mom’s situation.

“We used a jar of buttons to talk about feelings and fears,” Mary Clare explains, “Each day, Twila would take a handful of buttons and one by one add them to a jar, naming her fears and concerns one at a time.” Mary Clare says that this activity plus formal play therapy helped Twila manage her anxiety and gave her daughter an opportunity to talk about her own needs.

These steps to manage new family dynamics after transplant worked for Mary Clare. Experts on transplant recovery note that each family is different, and that transplant recipients and their children often need help coping with changes in family relationships.

If you need help coping with family changes after transplant, you’re not alone.

  • Talk to a social worker at your transplant center. They can provide support and help you access local and national resources.
  • Find helpful advice on adjusting to life after transplant on the Be The Match® website.
  • Talk to another parent who’s had a transplant. Our Peer Connect program can connect you with a trained volunteer who’s been there. No matter where you are in the transplant process, transplant recipients like you are available to talk by phone or email, sharing their experience and tips. To request a connection, visit: BeTheMatch.org/peerconnect.
  • Get confidential, one-on-one support from caring experts through the Be The Match® Patient Support Center. We provide support, information and resources for caregivers and families. Call or email us for. We’ll listen and help you find answers. All of our programs and resources are free. Call 1 (888) 999-6743 or email patientinfo@nmdp.org.

“I feel like I’ve won the lottery.” Tara meets her recipient, Stewart

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Tara-and-familyV2-203pxAs a Philadelphia medical student diligently working through her residency, 2004 was a busy year for Tara. Despite her workload, Tara made the choice to not only help people professionally but also personally when she joined the Be The Match Registry® while attending a donor drive at her husband’s office.

In October, Tara got the call that she was a potential match for a patient in need of a marrow transplant.  She had no idea her upcoming bone marrow donation would be the start of a lifelong connection that now, nearly a decade later, has permanently intertwined her life with her recipient.

Looking back on hearing the news, Tara said both she and her husband greeted the news with joy. “When I found out I was a potential match, I was training to be a physician to save lives,” she said, “who knew I would literally get to do it with part of me.”

In December of that same year, Tara’s recipient, Stewart, received his life-saving bone marrow transplant at The University of Texas M.D. Anderson Cancer Center in Houston. Shortly after, Stewart relapsed and Tara donated lymphocytes to help save Stewart’s life.

After receiving Tara’s lymphocytes, Stewart began on his road to recovery and the two began exchanging monthly letters. Tara discovered that while he received his transplant in Houston, Stewart and his family were from Kona, Hawaii.

On the one year transplant anniversary, Tara said she and Stewart found a special way to mark the occasion. “We spoke exactly one year after I donated when I received a box of macadamia nuts from Hawaii,” she said. “I told him I was pregnant with our first baby.”

As the connection between the two families grew, Tara said the momentum of daily life kept them from meeting for many years. “He invited us to Hawaii yearly but, I was a busy resident with a new baby, then opened my own dermatology practice and had another baby,” Tara said.

Tara and Stewart continued writing and talking on the phone until 2011 when a family tragedy caused Tara to fully see the importance of their connection. “My own father was diagnosed with cancer and had an autologous bone marrow transplant that was unsuccessful,” she said. “He died in 2011, three weeks after I gave birth to my third child. I have never been so sad in all my life as when I lost my dad.”

While Tara turned to her family to help her grieve the loss of her father, she said her thoughts always returned to her connection with Stewart.  “My new baby and my kids were my reason to go on but, meeting Stewart was literally the only thing I could think of that might make me feel better,” she said. “I did not want to regret not ever meeting him.”

Tara finally got her wish on June 11, 2013 when she and her family were met with smiles, warm embraces and of course floral leis from Stewart and his family at the Kona International Airport in Hawaii.

The experience left a profound effect on Tara and her family. “I feel like I won the lottery. Most people who are on the list don’t get the opportunity to get the call and save someone’s life,” she said. “I can’t think of a greater miracle than this.”

Behind The Match: Cherise

Posted March 10th, 2014 by Be The Match and filed in News, Patient Stories
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Cherise-203pxThe following content is part of our new Behind The Match series, an ongoing effort to provide a behind-the-scenes look at marrow transplant and some of the lesser-known, yet crucial ways we deliver cures for blood cancer patients.

In May 2013, Cherise stepped into Be The Match on her first day and knew that her life had come full circle. “When I was hired I thought, ‘What are the odds?’” she said. “This was meant to be.”

Born with severe combined immunodeficiency (SCID), Cherise’s life was saved by a bone marrow transplant she received as an infant. Now, as an adult, Cherise uses her experience as a life calling to motivate and inspire people personally and professionally.

As the youngest of four children, Cherise said her mother quickly realized something was wrong with her newborn. “I was always sick,” she said. “I was three months old and the doctors were baffled.”

After months of testing at Minneapolis Children’s Hospital, Cherise was diagnosed with SCID in December 1977 and sent to the University of Minnesota Medical Center.

“Doctors told my parents it had never been done before, but they could try a bone marrow transplant,” she said. Her nine year old brother, Richmond, was a match, and Cherise received her transplant in February 1978.

Despite her family’s hopes, Richmond’s bone marrow failed to engraft into his sister’s. By the end of February, doctors told Cherise’s parents that her body rejected the transplant – her only chance of survival. “They told my parents to begin making funeral arrangements,” she said. “My parents went home to plan my funeral and tell my siblings their baby sister was not coming home.”

As her family prepared to say goodbye, a miracle moment changed everything. “My parents got a call a few weeks later telling them to get to the hospital immediately,” she said. “When they walked in, my eyes were open and I was smiling.”

Cherise remained at the University of Minnesota Medical Center while her transplant successfully engrafted. As the youngest of eight children who had received bone marrow transplants at the hospital in 1978, Cherise said the staff “adopted” her during her stay, including teaching her to walk and potty-training her.

Three months after her transplant, Cherise returned home with no immunosuppressant medications and lived a healthy childhood. Her mother sent the hospital staff periodic updates – Cherise even appeared on the cover of the University of Minnesota’s Health Sciences publication in 1983.

With no complications, Cherise’s healthy life continued into young adulthood. In 1998, while a junior at the University of Minnesota-Twin Cities, an unexpected phone call brought her back to her early fight for life.

“One of my nurses from 1978 called me,” Cherise said. “She thought I had died. She was in tears – it was very overwhelming.”

During the call, Cherise also learned she was the sole survivor of the eight children who had received bone marrow transplants in 1978. This realization gave Cherise a deepened sense of purpose – which was tested in 2001 when she was diagnosed with liver failure. “Over twenty years later, graft versus host disease came into play,” she said. “My immune system was rejecting my liver.”

After successful treatment, Cherise gained a renewed understanding about the importance of health and wellness. “I have been living healthy ever since,” she said.

With a career in Human Resources, Cherise said she thrives on teaching others about the importance of living well. “Hopefully, I can help educate diverse communities about the need for diverse donors,” she said. “I am a miracle. I truly believe there is a reason I am here. I believe I am doing what I need to be doing.”

“There were some Christmases when we didn’t know if it would be the last holiday for Luke or Molly.”

Posted December 9th, 2013 by Be The Match and filed in Patient Stories
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Luke-Molly_203pxThe vivacious, brown-eyed siblings both love splashing around in the family pool, camping in the great outdoors, and just being silly together. Luke and Molly, ages 8 and 5, are like most happy and spirited siblings, except for an uncommon bond: both are afflicted by myleodysplastic syndromes (MDS)/monosomy 7, a rare blood condition. The only cure is a marrow transplant.

You wouldn’t know it by looking at them today, but both children endured months of treatment and years of recovery – culminating in life-extending marrow transplants.

Luke was only 8-months-old when he was diagnosed. It was a day his parents, Julie and Brandon, will never forget. “Once you hear those words ‘your child has cancer,’ you learn to live a new normal,” said Julie.

At first, the family didn’t realize they couldn’t be Luke’s donors. In the frightening days that followed, they searched for his perfect match. “We had to count on complete strangers – and that’s when we learned about Be The Match®,” said Julie.

Fortunately, Luke found a match. His transplant went well, and once the little boy regained his strength, the family was anxious to welcome a new baby to the family. They had been told that Luke’s condition wasn’t genetic.

Little Molly came into the world seemingly healthy, but as she grew, the toddler’s body was often marred by multiple bruises. Julie insisted that doctors run extra blood tests, which confirmed her worst fears: Molly had MDS has well. This time, Julie and Brandon knew the challenges ahead.

Like her brother, Molly also found a donor through the Be The Match Registry®, but she had a more difficult recovery. She still remembers losing her long, blonde locks. At the tender age of 5, she has a remarkably matter-of-fact attitude about her struggle. As she recently told nearby shoppers in a Target checkout line, “I had cancer, but I didn’t die.”

These days, every childhood stepping stone and each family gathering holds a special meaning for the family. Last summer, Luke and Molly explored the wonders of Yellowstone during a family camping trip. Their parents feel a special joy each time Luke steps up to bat or Molly prances on stage.

Of all the family gatherings and celebrations, Christmas is by far their favorite. Recalls Julie, “There were some Christmases when we didn’t know if it would be the last holiday for Luke or Molly. It just means so much more now.”

The family is deeply grateful to Be The Match and its contributors. Julie put it simply: “Writing a check may not seem important to some people, but it means to the world to a family like ours. It meant that our children could live.”

You Can Help

As the holidays approach, cancer doesn’t take time off. There is no better way to show your support way than by making a gift to Be The Match. Learn more about how you can give a child the gift of life.

Winning the Lottery of Life

Posted November 5th, 2013 by Be The Match and filed in Patient Stories
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Z with caption

Alyssa L. fell madly in love with a boy from work – and then she adopted him.

About six years ago, Alyssa, a medical social worker, started working at a residential facility for seriously ill children without homes. There she encountered a sick little boy who now goes by the name of “Z.”

Not yet two years old, the toddler was languishing in the facility as he awaited a bone marrow transplant. Z suffered from Langerhans cell histiocytosis (LCH), a rare blood disorder that affects children. In his short life, he’d already lived through a lifetime of hardship – and was utterly alone in the world. His fragile immune system required him to be isolated from other children in the facility, but he could hear them playing.

During her shifts there self evident Alyssa spent as much time as she could with Z while providing care to 11 other ill children, including tiny premature

babies. She recalls the days just before and during his transplant as the most difficult. “That’s when I really got to know him,” she says. “And when they asked me to sit with him in the hospital during his transplant process, I absolutely fell in love with him.”

The little boy’s recovery was slow and challenging, but Alyssa was a constant presence. One night in the hospital, he developed a very high fever. “I sat with him as he shivered and sweated, watching Elmo on TV, and I really believed he was going to die—but I prayed that he wouldn’t,” recalls Alyssa. Although she tried to hide her despair, one of her tears fell on Z in his hospital bed—and the little boy reached out to comfort her.

Little by little, Z grew stronger. As Alyssa witnessed his progress and spirit, her love for the little boy deepened. When Z turned 5, the family decided to adopt him. They welcomed him to his first real home with their whole hearts.

The new family of three celebrated their first Christmas together with the usual treats and traditions—and all of it was new to Z. “We discovered he’d never even heard of Santa,” says Alyssa. “My husband and I were like kids on Christmas morning—we were just so excited for him that we had to wake him up!”

Today, to the family’s relief, Z is a healthy, happy and sometimes sassy 8-year-old boy. “He went from such a dark place to being so funny, smart and well-adjusted,” says Alyssa. “And he’s proud to be the fastest player on his soccer team!” He’s also a proud big brother to the family’s newest addition: Jack, age 2.

At his 6th birthday party, Z received a special gift: a chance to meet his marrow donor. “She’s an EMT and just a wonderful person,” says Alyssa. “And Z understood what he gave her—he says, ‘She gave me the good blood.’”

With two healthy sons, every day is a little like Christmas to the family. Z loves making pumpkin bread for the holidays and learning about all their family traditions.

“We’re just so grateful to Z’s donor, and to Be The Match for finding her,” says Alyssa. “There are so many ways to give, but giving to an organization like Be The Match is concentrated good. It’s a chance to help so many children and families win the lottery of life – like we did. And now we have the child of our dreams.”

You have the power to give a child the gift of life. Learn more.

Health Insurance Exchanges: Five things transplant patients need to know

Posted November 1st, 2013 by Be The Match and filed in News, Patient Stories
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Dan with captionStarting Jan. 1, 2014, Health Insurance Exchanges under the Affordable Care Act (ACA) will allow individuals in every state to shop for and compare health insurance plans online. Everyone under age 65 will be able to use the exchanges to gain coverage with no denials of coverage because of pre-existing conditions. In addition, younger patients are now eligible to stay on their parent’s health insurance plan until they are 26 years old.

Note: If you already have health insurance, are happy with your plan and it has not been cancelled, you do not need to buy a plan on a health insurance exchange.

Here’s what you should consider when evaluating plan options:

  1. Premium levels, coverage, and cost:  Each plan offered on the Health Insurance Exchanges will offer four levels of coverage–Bronze, Silver, Gold, and Platinum–ranging from lowest cost/least cost coverage, to highest cost/most cost coverage. Because most transplant patients have a high-cost medical condition, they should  consider plans with higher levels of coverage, such as Gold or Platinum plans.
  2. Bone marrow transplant (BMT) benefit: Contact the health insurance company directly and ask about the plan’s specific BMT benefit. Get information about specifics including donor search coverage, prescription drug coverage, maximum benefit amounts, waiting periods for coverage, travel and lodging benefits, and clinical trial coverage. We are closely monitoring proposed BMT benefits across the country and are working to ensure that patients in need will have access to life-saving transplant coverage.
  3.  Assistance with premiums: Patients may be eligible to receive federal assistance to help cover premiums for plans on the Health Insurance Exchanges. Individuals are eligible if they make up to $45,960 annually. A family of four is eligible if they make up to $94,200 annually. Amounts vary depending on income. For information about your state’s Health Insurance Exchange, visit www.healthcare.gov. If your income is up to 133% of the Federal Poverty Level ($15,000 for an individual and $30,000 for a family of four) you may be eligible for Medicaid if your state chose to expand its Medicaid program. Visit www.kff.org to find out if your state chose to expand its Medicaid program.
  4. Cost-sharing features: When evaluating a plan, look for information on deductibles, out-of-pocket costs, co-payments, and co-insurance. All of these cost-sharing features will help you determine the total possible cost of different insurance plans. Think about the number of visits you will make to your primary care physician and any specialists, as well as potential hospital visits.
  5. Networks: Each health insurance plan has a designated set of in-network providers. Any providers outside of their network are considered out-of-network and will charge higher costs for care. Check the network of hospitals and providers to ensure that your physicians and transplant center are included.

Open enrollment for the Health Insurance Exchanges begins October 1, 2013 and runs through March 31, 2014. Coverage begins on January 1, 2014 as long as your first premium is paid by December 15, 2013.

Watch for more information about how these changes affect transplant patients and recipients. We will continue to provide updates on the ACA and Health Insurance Exchanges as information becomes available. If you have questions or need more information check the resources below.  You can also contact Be The Match at 1 888 999 6743 or email patientinfo@nmdp.org.

Resource Links

www.healthcare.gov (HHS’s Main Page for Health Insurance Information, including links to each state’s Health Insurance Exchange)

www.kff.org (Kaiser Family Foundation)

www.cancerinsurancechecklist.org (Cancer Insurance Checklist)