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READ MOREPublished on November 25, 2024 in Advocacy
One family found out in the most devastating way that the top cancer center they had uprooted their lives to access was outside their health insurance plan’s provider network
Linda Giffin Citron had been living with an oligodendroglioma for nearly 20 years in 2015. Despite multiple rounds of recurrences and treatments and downshifting from a fruitful career in the television and film industry, she was still leading a fulfilling life.
Linda’s survival had been aided by the guiding hands of some of the pioneers and leading minds in neuro-oncology and neurosurgery, including Drs. Susan Chang, Victor Levin, and Raymond Sawaya. In fact, Linda and her family had moved from southern California and the bright lights of her career in Hollywood in 1998 to come under the care of Dr. Levin and Dr. Sawaya, who’d been building the world-renowned brain tumor program at MD Anderson Cancer Center.
“I sincerely believe that outcomes can be better for people who receive care at the NCI-Designated Cancer Centers, and in Linda’s case, we believed that care at MD Anderson would be vastly superior to care in our community,” says Linda’s husband, Gary.
While at MD Anderson, Linda underwent two craniotomies – in 1998 when they first arrived, and then for a recurrence in 2001 – and a course of chemotherapy. She continued to work on film and TV projects as she could, regularly volunteered for the local Wildflower Center, while also raising the couple’s son.
“Not everyone will want to quit their careers and move to a distant city,” continued Gary. “For us, we were willing to ‘bet the farm’ because we believed that MD Anderson had invested in great talents, like Dr. Victor Levin and Dr. Ray Sawaya, and had been dedicated to investing millions in research and superior treatment for folks with limited options.”
But when Linda had another recurrence in 2015, and her doctors started her on the drug temozolomide, the couple was shocked to learn that suddenly that their new insurance plan – a so-called “marketplace plan,” a type of insurance coverage created by the Affordable Care Act (ACA) – was not “in-network” with MD Anderson. She would need to continue her treatment elsewhere. While Linda went on to live another six years before unfortunately ultimately passing away in 2021, the family experienced a significant difference in the care they received after leaving MD Anderson.
“My family moved to Texas so we could access a top tertiary cancer clinic, so my wife could receive the highest quality care,” says Gary. “In the middle of her treatment, we were informed that they weren’t in-network with our marketplace plan. We ultimately had to resume treatment at a local hospital that – while having caring, competent doctors – just did not have the same resources and state-of-the-art technology as MD Anderson. Patients with brain tumors should not have to sacrifice quality of care due to out-of-network insurance status.”
Unfortunately, findings from an NBTS survey of the brain tumor community – published in a recently released white paper – show that patients with brain tumors too often experience similar situations.
Results from the NBTS Community Needs Assessment survey in 2023 found that health care insurance plans’ use of narrow provider networks negatively impacts access to the continuum of care for patients, creating barriers to optimal treatment delivery. This appears especially true when it comes to the type of insurance plan that Linda and Gary had when they experienced their issue – marketplace plans. For example:
Overall, these network adequacy problems forced patients into difficult decisions. One respondent echoed Gary when he wrote, “I had to receive care from an in-network provider who was not well-versed in my tumor type, and the care I received was substandard and unsatisfactory.”
The 2023 NBTS survey was the second such effort by the organization to better understand its constituents’ access to specialized cancer centers, following a nearly identical survey in 2019 which found similar challenges. Together, these surveys – along with available data and literature from outside research – paint the disquieting picture that too many patients with brain cancer are forced into a lose-lose situation when it comes to their care. They either have to face financial toxicity to go to top hospitals and providers highly trained in brain tumors, or they have to settle for health care delivery from hospitals and providers with less training, specialization, experience, facilities, and clinical research than by staying at an in-network hospital.
These are bargains that patients dealing with a deadly and devastating cancer such as a malignant brain tumor should not have to grapple with when trying to save or extend their lives. This is especially true in light of the most recent reclassifications of brain tumors by the World Health Organization (WHO) call for a diagnosis to include both histological and molecular profiling for a complete diagnosis, necessitating advanced biomarker testing for all patients. Additionally, the most up-to-date guidelines for treating malignant brain tumors include the stipulation that all patients receive the best management in clinical trials and the proposition that such studies should be considered as the first line of care. Brain tumor clinical trials are typically clustered among top tertiary cancer centers, chiefly in many of the National Cancer Institute’s Designated Cancer Centers. These types of specialized centers are also the most likely to offer advanced pathology services needed to meet the latest WHO standards for diagnostic integrity.
While these challenges were seen across health plan types, the impact of narrow insurance provider networks on a patient’s care is particularly stark in government-backed safety net plans, including Medicare Advantage, Medicaid, and marketplace plans regulated under the Patient Protection and Affordable Care Act.
In publishing the new white paper, NBTS is taking the opportunity to propose that the Biden Administration should take steps to improve network adequacy within the Affordable Care Act’s marketplace plans – as they’ve been noted to frequently employ restrictive provider networks – as a logical and effective opportunity to cement a lasting legacy for patients with cancer that’s consistent with the White House’s goals for its Cancer Moonshot and in addressing health equity issues.
Marketplace plans under the requirements of the ACA were meant to offer an additional safety net to individuals not eligible to receive other CMS programs, such as Medicaid, and who lack access to employer-sponsored insurance. It contradicts the goals of the ACA that such plans should limit access to top specialized cancer centers, particularly ones that the federal government’s own cancer authority, the National Cancer Institute, has officially designated as comprehensive cancer centers.
NBTS is hoping the administration will take the opportunity, in its final months, to put NCI-Designated Cancer Centers in the best position to serve patients with cancers like malignant brain tumors, as defined by the latest guidelines for standard of care.
“There are people like us who are willing to sacrifice everything to get the most favorable outcome, and the best quality of life for their loved ones…If we had a program that allowed hard working Americans to access the NCI-Designated Cancer Centers with ACA insurance plans, that would be a great example of government working for the common good,” says Gary. “The preamble to the Constitution talks about the government promoting the general welfare, and this could be a way to accomplish that, and help people like us to have access to the experience, research and patient volume that these cancer centers can offer, and hopefully a better life.”
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