For people living with gastrointestinal stromal tumor (GIST), a rare type of cancer, getting the best care is not always easy. Medical care is often shaped by more than just the disease itself. A person’s age, race, language, income, insurance, and where they live can all affect how quickly they are diagnosed and how well they are treated. These differences can lead to delays, inability to access care, wrong treatments, and harm that could have been avoided.
The Specialist Gap
Rare cancers such as GIST necessitate a specialist to make educated care decisions. However, many people diagnosed with GIST never see a GIST specialist. Some community oncologists believe they can manage GIST on their own. But GIST is complex, and treatment guidelines change often. Specialists have deeper experience with this rare cancer.
Oftentimes, patients are even unaware they should be advocating for this specialized care due to lack of education at initial diagnosis. Even when doctors are willing to consult a specialist, referrals are often delayed or never made. This happens more often for older adults, patients of color, and people with fewer financial resources.
Insurance rules can make this problem worse. Even when a GIST expert is nearby, insurance may limit patients to smaller, in-network hospitals. Patients with rare diseases, like GIST, are then forced to fight for coverage and explain why they need specialized care, simply because their cancer is uncommon.
Missing Biomarker Testing
Many GIST patients also miss out on important biomarker testing. Biomarker testing helps oncologists understand the exact type of GIST a patient has and which treatments are most likely to work.
Without this testing, patients may be given treatments that are not the best choice for their mutation. This problem is more common outside large medical centers. It also affects patients with language barriers or limited health knowledge, who may not know these tests exist or feel comfortable asking for them.
The Cost of Not Being Told
Most general oncologists will see only one or two GIST cases in their entire careers. As a result, they often do not invest the time needed to fully understand the nuances of diagnosing and treating this rare cancer, particularly when they are managing far larger numbers of patients with more common malignancies. Many are unaware of how critical GIST specialty care is and therefore do not routinely refer patients to experienced centers or specialists.
When patients are not given this information, pursuing a second opinion, traveling to a specialized hospital, or appealing insurance decisions can feel unnecessary, intimidating, or overwhelming. Many patients reasonably assume that all oncologists treat cancer in the same way, without realizing that outcomes for rare cancers like GIST can vary significantly based on specialist expertise.
This gap in communication disproportionately affects individuals who already face barriers within the healthcare system, including older adults, people with limited financial resources, non-English speakers, and patients who feel unheard or overlooked. Without clear guidance on the importance of specialty care, patients are unable to make fully informed decisions about their treatment.
Patients with strong support systems, medical knowledge, or advocacy assistance are more likely to find specialty care on their own. Others, however, may never realize that better, more appropriate treatment options exist.
Education as a Tool for Fairness
The Life Raft Group’s Health Equity Council (HEC) is working to reduce these gaps in GIST care. The HEC is building stronger connections between GIST specialists and community cancer centers, especially in rural areas of the Southeast United States.
Many oncologists in rural settings see very few GIST patients. They may not realize how much specialist care, biomarker testing, and updated treatment guidelines can change outcomes. The HEC helps address this through education, direct outreach, and practical tools that make referrals and consultations easier.
A key part of this work is helping oncologists clearly explain to patients why GIST specialty care matters. When doctors understand and communicate the life-saving value of specialist care early, patients are better able to decide whether travel, insurance appeals, or second opinions are worth the effort.
Through education, partnerships, and tools like virtual consultations, the LRG Health Equity Council is helping build a system where patients do not have to fight alone for expert care. This approach helps ensure that every person with GIST, no matter where they live, has access to the knowledge and expertise they need.
Call to Action
Better GIST care should not depend on where someone lives, what insurance they have, or how much they know about the healthcare system. Every GIST patient deserves access to the right testing, the right information, and the right specialists early in their care.
Patients and caregivers can take action by asking their doctors about biomarker testing and whether a GIST specialist should be part of their care team. Community oncologists can help by learning when to refer patients and by connecting with GIST experts when questions arise.
Supporters, healthcare providers, and policymakers can help by backing education efforts and programs that close gaps in care, especially in rural and underserved communities. By supporting The Life Raft Group and the LRG Health Equity Council, you help build a system where no GIST patient is left behind simply because of bias, distance, or lack of information.
Together, we can make expert GIST care the standard, not the exception.
To learn more about the LRG Health Equity Council, email: rpauley@liferaftgroup.org
