Battling the financial barriers to transplant
Connor’s story
Before the age of two, little Connor’s parents considered flying him from their home in Woodbury, Minn. to Colorado — giving his grandparents, aunts, uncles and cousins a chance to say goodbye.
“We knew it didn’t look good. He was so sick and we were really scared. I just wanted everyone in our family to see him, to know him, even if it was just for a little while,” said Nee, Connor’s dad.
Although they didn’t know it at the time, the battle for Connor’s life was just beginning, and this little one wasn’t about to give up without a fight. Countless hospital stays, chemotherapy, radiation and two unrelated marrow transplants later, Connor, now 5, is happy, healthy and ready to start kindergarten this fall.
When he was 10 months old, Connor was diagnosed with an inherited blood disorder that required a marrow transplant. His parents thought the hard part would be finding a donor. Like 70% of patients in need of a marrow transplant, Connor had no matching marrow donor in his family. He would have to rely on the kindness of strangers and hope to find a donor on Be The Match Registry. He did. And when the first transplant didn’t work, he found another donor whose cells did.
Instead, the battle Connor’s parents didn’t anticipate — and few families ever do — is the financial one. There is a cruel reality that accompanies many marrow transplants – stressful uninsured expenses that can break the bank of many families.
Connor’s parents experienced that reality – twice. With each marrow transplant, his mother, Mayka, took an unpaid leave from her banking position to be Connor’s full-time caregiver in and out of the hospital. Nee continued working to keep the family financially afloat. Their income was cut in half, just as they were about to experience a significant rise in uninsured expenses.
How uninsured costs of transplant can add up
Be The Match Foundation® raises funds to provide qualifying families patient assistance grants, financial help with uninsured costs such as travel, temporary lodging, food and prescription co-pays. These grants give families a little less to worry about while they are battling for a loved one’s life.
On average, families who apply for patient assistance experience recovery expenses that exceed their income by $1,600 a month, and recovery usually takes 3 to 6 months. So, even with good insurance, many families experience a gap as high as $10,000.
It’s almost a guarantee that any family in the midst of a marrow transplant will lose at least one income. Depending upon who in the family is sick and who needs to act as the full-time caregiver, two incomes may be lost.
Marrow transplants are only offered at roughly 130 hospitals in the nation – so chances are patients will need to travel hours or to another state for treatment. Travel and lodging expenses are often uninsured.
Then consider that most patients don’t just get to go home after a transplant – especially if they live more than an hour away from the hospital. They must rent a nearby hotel room or apartment for several months – visiting the transplant clinic daily – while their fragile immune system heals. This means many families pay to run two separate households during transplant and recovery.
Finally, the out-of-pocket prescription drug expenses leave family members shaking their heads. Most patients are released from the hospital with 20 or more daily medications to take. Even with good insurance, prescription co-pays can easily amount to $500 a month.
Connor’s parents know they were fortunate because the transplant center that specialized in their son’s disease was the nearby University of Minnesota Medical Center, Fairview. Their uninsured expenses could have been much higher.
Elias’s story
Elias’ family from Maple Grove, Minn. wasn’t so lucky. Elias was born with severe combined immunodeficiency disorder (SCID), a fatal disease. His only chance for a cure was a marrow transplant, and his parents’ choice for a specialist was in Ohio.
Elias’s parents lost their jobs when they relocated with their son to be near his transplant center. With worry and expenses on the rise and income reduced to zero, Be The Match Foundation patient assistance grants were there to help make ends meet.
Elias received his transplant at the age of one. Today, he is a happy, active and healthy 7-year-old growing up in Minnesota with his parents and little brother by his side.
Every Patient Counts!
Each year, 10,000 patients need a marrow transplant from an unrelated donor, but only half receive one. Be The Match Foundation needs your help to make sure Every Patient Counts!SM
Every Patient Counts! is a critically important $4 million fundraising campaign that celebrates each life saved through marrow transplant but focuses on those patients still searching for help. Half is not enough. Help us break down the barriers that keep thousands of patients with leukemia and lymphoma from receiving a life-saving marrow transplant.
Patients face three formidable barriers:
- Affording a transplant — even with health insurance
- Finding a matching marrow donor for transplant
- Developing complications that can keep a transplant out of reach
Be The Match Foundation and the National Marrow Donor Program® have developed smart, compassionate and effective programs to dismantle those barriers, but we need your help. Invest in our programs and help us serve more patients. Invest in our barrier breakers and help us serve more patients. Learn more at BeTheMatch.org/counts
We know marrow transplants. We know the barriers to transplant. And we know our patients can’t overcome them without you. Half is not enough. Every Patient Counts!
