By Blood Cancer United
Valerie Taylor is a nurse, a Blood Cancer United volunteer, and a survivor of acute myeloid leukemia (AML) and breast cancer. She is Blood Cancer United’s state advocacy leader in Georgia. Last year, the Georgia legislature honored her for her commitment to advocacy.
When I was diagnosed with AML in 2018, there was so much going on. I was the sole caregiver to my mother Deloris who was suffering from dementia. I had recently experienced a job loss. And I was without health insurance.
As a nurse, I knew that cancer treatment was expensive. But I had no idea how many holes exist in our safety net. Now I do—and I’m committed to doing something about it.
How’d I get here? I wasn’t eligible for Medicaid because Georgia, where I live, is one of the 10 states that hasn’t fully expanded Medicaid. I also couldn’t access Affordable Care Act coverage, which would have cost me thousands of dollars each month without subsidies. That meant there was absolutely no safety net for me—even though I had worked my whole life.
After six weeks in the hospital for leukemia treatment, I achieved remission. I was sent home, and then I returned for outpatient chemotherapy for three months. But my prognosis was poor because, to be frank, I was poor.
My oncologist explained it in stark terms.
“Valerie, we luckily obtained remission, but your disease is very aggressive and will come back in roughly six months,” she said. “You need a bone marrow transplant for the best chance of survival. But we cannot perform one without a source of payment. It’s about $1 million—without complications.”
He couldn’t have been clearer. Lifesaving treatment existed, but not for people like me who couldn’t afford it.
Too many patients face financial toxicity
The odds were against me. I prayed my remission would hold. My son Teferi and I researched options for months, but we soon realized I would likely die because affordable insurance was not available. Without it, I had no pathway to the treatment I needed to survive. It’s a situation many patients know well.
On my hospital discharge, a social worker gave me a red folder filled with information from what was then The Leukemia & Lymphoma Society, now Blood Cancer United. Once at home, I called and told the blood cancer Information Specialist my story. She handled my call with empathy and skill, talking me through my fears and tears, walking me through a plan.
My remission held three months longer than projected. In that time, I gained eligibility for ACA tax credits. My son volunteered to be my donor, preventing further delays. I was transplanted in February 2019.
The cost of care is costing lives
When Blood Cancer United asked if I’d be interested in becoming a volunteer, I envisioned stuffing envelopes. I didn’t think I’d wind up speaking with politicians and journalists. But Blood Cancer United gave me a platform to share my story, and I’m running with it.
Being discharged home and knowing treatment was available that I could not access, was the most inhumane experience imaginable. My hope was to live so I could tell everyone how the cost of care is costing lives.
Today, I’m proud to work with Blood Cancer United and strive for a world where nobody is discharged home to die because laws are blocking access to lifesaving care.
Telling our story in pursuit of health equity
We are accustomed to seeing the face of poverty being faces of color—black and brown people who look like me. When I started sharing my story, I asked my son how he’d feel being associated with the stigma of being branded as black and poor.
He reminded me: cancer has no distinction in who it selects. Like me, he didn’t want any other family to feel hopeless without access to care. If “our story” helped, he said, he would gladly advocate alongside me.
Recently, I heard a speaker at the Georgia Blood Cancer Conference discuss the importance of labels and the purpose they give our lives. Here are my labels: I’m a cancer survivor, a daughter, a mother, a nurse, and an advocate. I am so grateful to have survived so that, hopefully one day, I can be a grandmother, too.
Beyond my work on policy and fundraising, I am committed to reducing disparities experienced by patients of color and empowering patients within this community to advocate for themselves.
A system that mutes voices like mine
There is a legacy of tremendous bias in healthcare that continues today. I am completing treatment for metastatic breast cancer, and doctors often gloss over my pain symptoms and my treatment-related questions.
Recently, after stabilizing from my breast cancer treatment, I reported a new onset of debilitating weakness repeatedly over a five-month period. Not one healthcare provider on my team of six would investigate the cause. I found a new, more empathetic doctor. She ordered bloodwork and learned I had lead poisoning at seven times the acceptable level.
Today, my levels are improving, but my symptoms persist. Had I not continued to advocate for myself, I doubt this would have been discovered. My new doctor is a person of color.
Our healthcare system often mutes the voices of patients like me because of where we live, or how much we earn, or what we look like. That’s why your work for and with disparaged communities is critical.
An ally and advocate in Blood Cancer United
All patients, regardless of their ethnicity or economic status, need to know that they have an ally on their side in Blood Cancer United.
I always shared the lessons of John Lewis, one of my hometown’s Civil Rights giants, with my son. He said, “When you see something that is not right, not fair, not just, you have to speak up. You have to say something; you have to do something.”
Advocacy is how we turn our values into change—and into something that makes a difference. I’m proud to work with a team that’s committed to working towards a system that works for all patients. And I invite you to join us.
We’ll send you simple ways to communicate with elected officials via email, phone calls and other actions.
Learn more at BloodCancerUnited.org/Advocacy.
