Understanding Disparities in Access to Genomic Medicine Proceedings of a Workshop (2018) / Chapter Skim
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2 Exploring the Barriers to Accessing Genomic and Genetic Services
2 Exploring the Barriers to Accessing Genomic and Genetic Services
Pages 11-22
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From page 11... ...
( onhomme, Friedman, Jolley) B • Inconsistent and complex insurance coverage policies can pre vent individuals from accessing genetic services or delay effec tive treatments if patients are unsure of coverage for testing or downstream care.
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From page 12... ...
Pat Jolley, the director of clinical initiatives at the Patient Advocate Foundation, detailed her organization's efforts to help patients gain access to necessary genetic testing. Finally, John Moeschler, a professor of pediatrics at the Geisel School of Medicine at Dartmouth College, described some of the geographic and workforce challenges related to providing genetic services in low-resource and rural communities.
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From page 13... ...
That tendency to not disclose important health information to family members put her life in jeopardy, she added. Now she and her colleagues at The Blue Hat Foundation have a new saying that they are trying to spread throughout minority and medically underserved communities: "Family secrets kill families." Henley spoke of how a patient told her that the patient's colon cancer was not the patient's family's business to know about and that the way that patient found out about her cancer was the way that her family would have to find out.
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From page 14... ...
EXAMINING POTENTIAL DRIVERS OF HEALTH CARE DISPARITIES Confusion Over Terminology and the Interpretation of Genetic Test Results Many people do not understand the concept of testing for hereditary gene mutations, and, perhaps more importantly, they do not understand the results of these tests, Friedman said. Findings from a recent survey conducted by FORCE found that even individuals who have a known genetic mutation are unclear about the differences between genetic and genomic testing or between a germline and a somatic mutation (Rezende, 2016)
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From page 15... ...
For example, Medicare covers colon cancer screening for individuals deemed to be high risk, but it does not cover screening or riskreducing surgery for those at high risk of developing breast or ovarian cancer. A recent study found that primary care providers have concerns about insurance coverage and genetic discrimination despite the existence of the Genetic Information Nondiscrimination Act of 2008 (Hauser et al., 2018)
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From page 16... ...
There was no gender disparity reported for colorectal cancer genetic testing, but there was a 10 to 1 disparity in testing for hereditary breast and ovarian cancer (HBOC) mutations, even though men are at risk for male breast, pancreatic, melanoma, and aggressive prostate cancers if a HBOC mutation is present.
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From page 17... ...
Since August 2013, PAF has also offered the Genomic Testing Support CareLine. According to Jolley, by pulling data from the patients who called the Genomic Testing CareLine and comparing them with data from the other cancer patients served by the organization since 2013, PAF found that, on average, the patients calling the Genomics CareLine were older than the general cancer patients that PAF serves (67 percent of genomics patients were age 56 or older versus 49 percent of cancer patients)
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From page 18... ...
Despite having had genetic biomarker testing done that revealed multiple actionable mutations, his insurance company denied him authorization to try an experimental drug therapy targeting these mutations. PAF's first appeal, which outlined the patient's clinical history and prognosis, was denied.
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However, the program that offers prior approval requires a visit to the doctor and then a second visit once approval is granted, which for people who live in rural areas can be extremely time consuming and challenging. To save people a third trip once 1 medical home is defined as "a model of care that promotes close partnerships and coor A dination of care between individual patients, other health providers and physicians," according to Cheshire Medical Center, part of the Dartmouth-Hitchcock Health System.
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From page 20... ...
Lengthy travel times to see providers and interrupted work schedules can impede access to genetic services, he said. Two potential ways to increase access include telehealth consults and family work leave.
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According to data collected by Genetic Alliance, the biggest barriers to accessing genetic and genomic services are a lack of providers with expertise in a specific condition, the cost, providers not accepting insurance, the availability of or wait time for an appointment, distance to the provider, the patient not knowing what he or she needs, lack of a referral, and the length of time for insurance approval. Participants were also asked whom they would be most comfortable receiving information from, and the majority listed a fellow parent or individual with a condition, a care coordinator within the specialist's office, a support or advocacy organization, or a care coordinator within a primary care doctor's office.
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From page 22... ...
Friedman added that BRCA testing in someone who had been diagnosed with breast cancer can help people know if they are also at a high risk for developing ovarian cancer, making the test a preventive service. Health care providers need to educate and empower patients regarding the results of their genetic and genomic tests so that they understand what they were testing for and what it means for them, Friedman said.
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