The urgent challenge in blood cancer treatment: Ensuring every patient can access care

Key takeaways:  

• Access barriers affect treatment outcomes.
• Equity in Access research identifies obstacles patients face.
• Findings are helping inform programs, advocacy, and future solutions.
• Blood Cancer United offers support available right now. 
   

Why access to care remains a challenge

In my years as a practicing hematologist-oncologist, and now as Chief Medical Officer of Blood Cancer United, I’ve seen how blood cancer research has transformed what’s possible for patients. Where once there might have been little hope, doctors now can offer innovative therapies that help patients live longer, better lives. However, I’ve also seen that for too many patients, these treatments remain out of reach. Every day our Information Resource Center and Clinical Trial Support Center get worried calls from people dealing with blood cancer asking: “How will I afford my treatment?” “Will insurance cover this medication?” “Is there a clinical trial nearby?”  

The unfortunate reality is that factors like income, race, age, and geographic location can determine whether or not they receive timely and innovative cancer care. At Blood Cancer United, we believe no one should be denied access to care because of circumstances beyond their control. We are committed to making sure all blood cancer patients can receive the treatment they need.  

That’s why we created our Equity in Access Research Program. It awards multi-year grants to health services researchers who investigate the causes and impact of inequitable access to blood cancer care and identify solutions that lawmakers, healthcare professionals, and patient support organizations can implement. Because we know that research alone does not change outcomes. It takes advocacy, education, and action.  

From insights to action

Research supported through Equity in Access doesn't stop at publication. Findings are translated into policy, advocacy, healthcare delivery, and patient support. This work is needed more than ever, as skyrocketing healthcare costs and cuts to federal and state insurance programs make it harder for patients to access the latest advances in cancer care.  

Since launching the Equity in Access Research Program in 2021, Blood Cancer United has invested nearly $21 million in 16 multi-year grants—studying issues like medical debt, insurance barriers, and access to clinical trials and how these factors impact patient outcomes. Here are some recent insights and how we’re translating them into action.

Medical debt can delay timely treatment

Research published last year by Helen Parsons, PhD, Robin Yabroff, PhD, and Cathy Bradley, PhD found that people newly diagnosed with cancer were less likely to begin treatment promptly if they lived in communities with higher rates of medical debt collections.

Drs. Parsons, Yabroff, and Bradley suggest that policies to reduce and alleviate medical debt—such as requiring hospitals to develop financial assistance programs, making the application process consistent and easy to navigate, and offering payment plans—are effective solutions.

These findings will help Blood Cancer United make even more progress in advancing policies that prevent and reduce medical debt. To date, in partnership with volunteer advocates, we have helped pass medical debt protections in 19 states and the District of Columbia, as well as more robust hospital financial assistance laws in California, Connecticut, Delaware and the District of Columbia.

We also expanded our free, personalized Medical Debt Case Management Program. Our case managers not only help families find options for managing healthcare bills but assist with all types of health insurance questions—from reviewing a current plan’s coverage and costs, to identifying alternative plans, to filing appeals if a test or treatment is denied. Blood Cancer United also offers a robust suite of other financial assistance programs to support patients with the financial strain associated with cancer care.

Insurance barriers limit access to oral cancer therapies

The development of oral anticancer medicines (from targeted therapies to chemo pills) has helped extend and improve the lives of patients with certain types of blood cancers, allowing the convenience of taking a pill rather than receiving treatment in the hospital or doctor’s office. Some blood cancer patients even use these oral medications long-term, managing their cancer as a chronic condition. But these specialty medications are costly, and a newly published study by Jalpa Doshi, PhD, found that insurance restrictions and high out-of-pocket costs create major barriers to accessing specialty oral anticancer medications.  

The data was striking. Across a nationwide sample of more than 12,000 Medicare and commercially insured patients with blood cancer, most prescriptions were initially rejected by insurers, often because of limits on which drugs their plans covered or requirements for prior authorization.

Even after prescriptions were approved, many went unfilled. Just 54.5% of Medicare patients and 45.5% of commercially insured patients both received approval and filled their prescriptions. Fill rates fell sharply when out-of-pocket costs exceeded $175 and were among the lowest when costs topped $2,000 per prescription. These cancer medicines can be life-saving but not if the prescriptions are not filled.

The study highlights the importance of addressing insurance restrictions and patient affordability to ensure better access to treatment. Blood Cancer United continues to advocate for policies that reduce prescription drug costs, including efforts that helped advance patient protections in Idaho and Virginia, and to secure federal reforms requiring prescription drug middlemen to pass savings on to patients.  

We’re also using Equity in Access-funded research showing the positive impact of Medicaid coverage on patients’ survival rates to strengthen our advocacy for laws that protect Medicaid coverage.  

Participation in clinical trials is inequitable  

While affordability and insurance restrictions can prevent patients from accessing approved treatments, they are not the only barriers that stand between patients and potentially life-saving care. Access challenges also extend to clinical trials, where participation remains out of reach for many communities despite the promise of new therapies.

Clinical trials can be an important option throughout cancer treatment, allowing patients access to cutting-edge therapies. Yet only about 7% of cancer patients in the United States participate in clinical trials, and that number decreases dramatically among racial and ethnic minority populations, rural communities, adolescents and young adults, and older adults.  

Equity in Access researchers are currently studying ways to reduce systemic barriers to participation. Researchers at the Durham VA Health Care System are exploring strategies to increase enrollment among Veterans, and a team at Dana-Farber Cancer Institute is studying how stronger collaboration between academic and community care sites could expand access to trials for groups historically underrepresented in clinical research.  

Turning evidence into change

These studies may examine different challenges, but all point to the same reality: breakthroughs in blood cancer treatment cannot achieve their full potential if patients face barriers to accessing care.

Our Equity in Access research program demonstrates Blood Cancer United’s commitment to ensuring that every person facing blood cancer has the opportunity to benefit from the latest advances. And it provides proof points for driving change.