Public policy and advocacy

Protecting patients in Medicare from high costs

For years, high upfront, out-of-pocket costs threatened Medicare enrollees who rely on specialty drugs to live healthy, productive lives. Fortunately, after relentless advocacy by Blood Cancer United staff and advocates, the Inflation Reduction Act capped Medicare Part D costs and allows seniors to spread those costs throughout the year.

Securing manageable out-of-pocket costs for patients with private insurance

Thanks to advances in treatment, many diseases that were once considered fatal are now treated as manageable, chronic diseases. But to access those treatments, health plans often require patients to pay thousands of dollars in out-of-pocket costs. For many patients—even those with insurance—that’s an impossible barrier to overcome.

Advancing oral parity because the way we treat cancer has changed

The way we treat cancer has changed. For decades, intravenous (IV) delivery was the primary method for administering the medications used to treat cancer. But today, more and more cancer medications come in the form of a pill.

Ending surprise medical bills

"Surprise billing” can happen when patients receive care from a provider outside of their insurance network, usually without their knowledge or in an emergency. Surprise bills are unfair, often leaving patients with serious medical debt through no fault of their own.

Reining in the cost of cancer care across the healthcare system

With the cost of cancer care rising at an alarming rate, more of the cost burden is shifting to patients, many of whom are responding by delaying or even foregoing their cancer treatment.

Ensuring patients have affordable Marketplace plans

With the cost of cancer care rising at an alarming rate, more of the cost burden is shifting to patients, many of whom are responding by delaying or even foregoing their cancer treatment.

Cost of cancer care

Advances in blood cancer therapy are having a dramatic impact on the range of treatments available to patients, but high costs put these treatments out of reach for many patients.

Improving the quality of health Insurance

Cancer patients need meaningful health insurance coverage. That means health plans must cover essential care, maintain sufficient provider networks, and cap out-of-pocket spending at a reasonable level. Policymakers must take steps to ensure cancer patients have access to quality, affordable insurance that meets these standards.

Protecting patients from junk insurance

“Junk insurance” penalizes people with pre-existing conditions. These plans often do not cover even essential care like prescription drugs and have no limit on what patients are required to pay. Due to deceptive marketing practices, consumers often do not know they’ve purchased a junk plan until they attempt to use their coverage and discover its many limitations.

Helping patients access out-of-network care

While facing the demanding physical, mental, and emotional toll of blood cancer, many patients must also confront the daunting task of managing their own care—obtaining the right treatment, at the right time, from the right provider, at the right cost. For those needing specialized care, that process is not always simple, and patients with blood cancer face numerous obstacles when navigating their care.

Ensuring Medicaid is available and stable

As the nation’s public health insurance program for low-income children, adults, seniors, and people with disabilities, Medicaid covers 1 in 5 Americans. That includes more than 2 million adults and children with a history of cancer. In fact, 1 in 3 kids who are diagnosed with cancer are covered by Medicaid.

Research has demonstrated that cancer patients who experience disruptions in Medicaid coverage are more likely to have advanced stage disease and worse survival rates than patients without disruptions. Medicaid also plays an important role in addressing health disparities.

Medicaid provides health coverage to over half of children who identify as American Indian or Alaska Native, Black, other or multi-racial, or Latino. That’s why it is critical that both state and federal policymakers act to protect and improve the Medicaid program.

Expanding Medicaid to more patients

"Medicaid coverage remains out of reach for millions living in 10 states where lawmakers have decided not to expand access to Medicaid. Earning less than about $17,000 each year, these individuals have little to no access to affordable health insurance, and as a result, most of them are forced to go without coverage. Six in ten of the people who fall into this “coverage gap” are people of color.

Tearing down barriers that block access to Medicaid

Ensuring that Medicaid can continue to provide critical coverage for cancer patients means defending against efforts to reduce coverage or create barriers to enrollment.

Making clinical trials work for patients

Clinical trials are the primary vehicle for developing new treatments for patients with cancer and, for many patients, provide the best treatment possible for their cancer. Yet only a small fraction ultimately enroll in a cancer clinical trial, and several groups are vastly underrepresented.

Promoting diversity in clinical trials

People of color, young adults, older patients, and patients in rural communities are less likely to enroll in a clinical trial. That means they are losing access to potentially life-saving treatments and that researchers and doctors can learn less about how these new therapies impact certain patients.

Advocating for pediatric patients and survivors

The Blood Cancer United Office of Public Policy supports policies that break down barriers that pediatric patients encounter when accessing care and accelerate the development of new treatments for childhood cancers.

Accelerating new treatments for pediatric patients

When it comes to childhood cancers, regulators often approach kids as if they’re tiny adults. But the biology of pediatric cancers is typically distinct from adults, making targeted research critical.

Promoting access to care for young survivors

Survivors of childhood cancer often experience unique physical and mental health needs for years after their active treatment ends. Compounded with other burdens like higher insurance premiums, denied coverage or penalties for missed student loan payments, and fertility preservation decisions, young patients face fallout for their cancer diagnoses that extend beyond physical repercussions.

Accelerating progress in cancer research and development

Blood Cancer United supports robust federal funding dedicated to cancer research. We also aim to enact policies that enhance clinical trials, promote drug development, and focus on what matters most to patients.

Increasing funding for cancer research

As an organization that has funded more than $1.8 billion in cancer research, Blood Cancer United knows firsthand the importance of funding research to one day achieve a world without blood cancers. But we can't do it alone. That's why we advocate for public funding for cancer research to bring us closer to life-saving treatments and cures.

Strengthening the FDA

The U.S. Food & Drug Administration’s (FDA) mission has always centered on promoting and protecting the public’s health. Blood Cancer United holds the FDA accountable to its commitment to accelerating patient access to innovative cancer treatments that are both safe and effective.