Which Companies Pay for Genome Sequencing for Cancer Patients, and What to Do If Your Insurer Doesn't

If oncologists in clinical practice and cancer researchers had access to information about all 20,000 genes in each and every cancer patient, they could quickly notice associations between variations in genetics, what works, and what doesn’t.  Just in December of 2015, health insurer United Health announced it would pay for complete genome testing in patients who have stage IV non-small cell lung cancer. This isn’t just because United Health wants the best outcome for its advanced lung cancer patients.

There are treatments, now FDA approved, for non-small cell lung cancer that can extend life for weeks or months. These treatments tend to be extremely expensive, about $10,000 a month. A complete genome for each patient could identify those patients for whom the treatments are most likely to extend life and extend life the longest. They could also disqualify some patients from these extraordinarily expensive drugs.

Pennsylvania’s Independence Blue Cross Blue Shield, a huge health insurance plan with three million members, has announced that it will begin paying for whole-genome testing for certain kinds of cancer. Physicians can request genetic sequencing for children who have cancers, patients who have rare cancer, women with a triple-negative breast cancer, and patients who have exhausted their options for metastatic cancer.

Priority health, a small health insurance company operating in Michigan, announced in 2015 that it would be begin authorizing complete genome testing for patients in the advanced stages of complex cancers so they could get treatments that are better targeted against their disease. And the Pancreatic Cancer Action Network, a patient advocacy network, has announced that more and more insurance companies are approving whole-genome testing on a case-by-case basis.

The irony still is that insurance companies are willing to pay hundreds of thousands of dollars for treatments with serious side effects that may not work, but they aren’t willing to pay $1000 to $5000 for genetic testing that may tell doctors what will. Why do they maintain this attitude?

Insurance companies usually answer that testing every gene in the body or every gene in a tumor yields a lot of unusable information. Genetic testing is available for over 2,500 conditions, but only 5 to 50 genes are typically useful in treating cancer. The insurance companies don’t want doctors going on fishing expeditions to find new conditions to treat, so most insurers in most of the United States still refuse to pay for genome testing for cancer, with very few exceptions.

When they do pay for this testing, however, it’s a major financial boon to the patient. Just about anyone who has cancer will meet their deductible (even if it’s $5000 to $10,000 a year) very early in the year, sometimes from a single office visit. After meeting the deductible and copays for the year, the patient doesn’t have to pay any additional cost (other than keeping up premiums) for testing for genes that indicate which drugs work best. If you just can't pay for the testing at all, and that's not an unusual problem for people and families dealing with advanced cancer, you may be able to get the testing by applying for a research study or from a local research laboratory who needs samples.

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Whether or not you will benefit from this kind of testing is something you need to discuss with your doctor, but even if your insurer only pays for part of the cost of the test, it may be something well worth the investment to get treatment that helps you beat cancer, possibly faster and with fewer side effects.