Demand Molecular Diagnostics for Cancer Patients

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In 2018, 1.7 million people were diagnosed with cancer, and over 550,000 of those diagnoses were for rare cancers. Overall, as assessed by an incidence metric of fewer than 6 diagnoses per 100,000 Americans per year, at least 380 forms of rare cancer exist, and these cancers compose 95% of all forms of cancer – almost one-third of all new cancer patients.

Unfortunately, rare cancers frequently have few therapeutic options beyond decades-old protocols for chemotherapy, surgery, and radiation. Fortunately, next-generation therapies hold new promise for extending life and avoiding some side effects. As of June 2019, the FDA had approved over 100 targeted cancer therapies. These therapies treat the majority of common cancers, such as breast and lung. However, a 2018 analysis showed that over 245,000 new cancer patients were not eligible for any first-line or second-line FDA-approved targeted cancer therapies. Almost 80 percent percent of those patients who lacked a targeted therapy had a rare cancer. 

More needs to be done by the federal government, including increasing funding and awareness, and providing access to testing that can inform physicians and patients about the specific genetic makeup of a cancer. These tests, frequently called molecular diagnostics, can lead to more accurate diagnoses and to the potential for improved treatment options, especially for cancers that lack specific treatment guidelines. The information gathered from these tests can also help researchers understand the basic biology behind cancers, and ultimately help inform the development of new therapies.

Join us to share your concerns about rare cancer. Your voice will help make the case to Congress and the federal government that every cancer patient deserves the best care modern science and medicine can provide. Rare cancer isn't rare, and modern treatments shouldn't be, either.

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