DeEtta’s story: A social worker helping patients navigate barriers to better hemophilia medications
Newer therapies show great promise for a better quality of life for hemophilia patients. When health insurance policies limit affordable access to lifesaving hemophilia medications, social worker DeEtta Barnhardt steps up.
Over the last few decades, the outlook for people with hemophilia and other bleeding disorders has become much brighter. With newer therapies that prevent bleeding and joint damage, people with these conditions can live longer and with a better quality of life.
However, something often stands in the way of this remarkable progress: health insurance programs and policies that limit patients’ access to lifesaving medications. DeEtta Barnhardt, MSW, LCSW, sees this daily as a medical social worker.
“We’re at a point with hemophilia care where our patients are active; they’re enjoying life. But if they can’t get their medications, we go backwards in time,” DeEtta said. “If they are in a car accident or even just twist their ankle, we can’t treat their injuries. And they can no longer be the mom or dad they want to be, the kind who plays soccer with their kiddos.”
DeEtta plays an essential role on the comprehensive care team at the University of Colorado Anschutz Medical Campus’s Hemophilia and Thrombosis Center in Aurora, helping patients cope with the stresses of lifelong bleeding and clotting disorders. Health insurance, pharmacy benefits, and billing issues are a major source of that stress. She spends much of her time helping people navigate the ins and outs of getting affordable treatment.
The need for individualized support from professional navigators like DeEtta is urgent. Her experience reflects findings from the PAN Foundation’s Center for Patient Research, which in 2025 found that only 2 in 5 U.S. adults understand their healthcare plan very well. Additional findings from the PAN Center for Patient Research poll revealed that over half (56 percent) of U.S. adults, and even more patients with a chronic condition (63 percent), report challenges or barriers using their healthcare plans in the past year.
What’s a deductible? What is coinsurance? DeEtta helps explain it to you in plain language.
How do you find a new health plan on the Colorado marketplace? She will sit down with you or send step-by-step instructions, complete with screenshots.
“I know way more about insurance than I wish I did,” DeEtta shared.
And if a patient or family can’t afford their out-of-pocket healthcare expenses, she will point them to financial assistance programs. For people with hemophilia or Von Willebrand disease, that’s often the PAN Foundation, whose grants can help cover the costs of medication copays and, in some cases, health insurance premiums.
Financial assistance can bring immediate relief for DeEtta’s patients. “It’s just meaningful. It really can have a positive effect for a family that’s struggling,” she said.
She recalls Toby*, a 9-year-old boy with hemophilia who was being treated at her clinic. His father’s health insurance plan wouldn’t cover Toby’s therapy, which replaces the protein missing from the blood so it will clot properly. Without insurance coverage, each dose can cost tens of thousands of dollars—something very few people can afford.
DeEtta and the family began working with the insurance company, which alerted them that they had to go through an alternative funding program (AFP) for assistance instead.
AFPs are programs designed by private companies and offered to employer-sponsored, self-funded health insurance plans to help the plans save money on prescription medications. By denying coverage for a prescribed specialty medication, the insurance company forces a patient to make a choice: enroll with the AFP, which will go to outside sources to assist with access to the medication, or pay for the treatment in full. AFPs can delay patients’ access to care and increase out-of-pocket expenses for people with rare and chronic health conditions, as the resulting assistance or payments do not count toward their deductible or annual cost-sharing limit.
If a family has an $18,000, $20,000, or $25,000 out-of-pocket maximum, how do you do that every year? It’s nearly impossible.”
DeEtta Barnhardt, MSW, LCSW
Toby’s parents, DeEtta, and her colleagues spent countless hours completing paperwork and just trying to figure things out. The health insurance company ultimately agreed to cover the boy’s medication—three months later. But every day without hemophilia treatment put his safety and well-being in serious jeopardy. The family had to be extra vigilant to help Toby avoid injury, knowing an acute bleed would land them in the ER.
“It was like we were in this revolving, spinning insurance wheel. We couldn’t get anywhere to get this covered,” DeEtta recalled. “And while that’s happening, the child is the one suffering. He wants to go out and be an active little boy, and he can’t because he can’t get this medication.”
Unfortunately, this is one of many stories DeEtta has seen in her nearly three years at Colorado University Anschutz. For example, many people expect copay assistance to count toward their insurance plan’s out-of-pocket maximum. But when their insurance implements a copay accumulator program, they can suddenly become responsible for thousands of dollars in healthcare expenses and not even realize it. That’s because copay accumulators, which insurance companies implement, affect how copay assistance is applied to deductible and out-of-pocket costs by allowing patients to use financial assistance to pay for medication, but not counting that value towards the patient’s deductible or annual out-of-pocket limit.
Colorado banned copay accumulators beginning in 2025, a welcome development. But the law only applies to state health insurance plans, not employer-based or private plans. “If a family has an $18,000, $20,000, or $25,000 out-of-pocket maximum, how do you do that every year? It’s nearly impossible,” DeEtta pointed out.
Or, in other cases, a patient could be forced to choose between paying significant out-of-pocket costs that can exceed maximums put in place by the Affordable Care Act, or joining a copay maximizer program where they have little to no upfront medication costs, but the payments won’t apply to their annual out-of-pocket maximum. Like copay accumulator policies, maximizer programs disproportionately impact individuals who are seriously or chronically ill, particularly those with low income and people of color. These situations can be “scary and murky” for all involved, said DeEtta.
Over the years, many of DeEtta’s patients have benefited from the expansion of Medicaid and the Affordable Care Act, which guarantees that people cannot be denied health insurance due to preexisting conditions like bleeding disorders. These important healthcare milestones, plus advances in therapy, have been life-changing, she said.
But DeEtta fears for her patients and the millions of other Americans with chronic illnesses, if cost-saving measures like AFPs continue and the future of the healthcare safety net programs remains in question. “It’s worrisome that we’ll go back in time, and all the gains we’ve made become losses.”
For now, she focuses on helping the people in front of her. She’s there with a listening ear, emotional support, and perseverance—anything to keep them coming back to the clinic on schedule.
“I enjoy connecting with patients, families, and caregivers,” DeEtta said. “We’re truly giving them tangible help to meet their needs.”
The opinions expressed are those of the individual featured and do not represent a position of the University of Colorado Anschutz Medical Campus or the University of Colorado School of Medicine.
*This patient’s name has been changed to protect the family’s privacy.