Don’t Keep Mesothelioma Patients in the Dark

by Naomi Lopez
September 26, 2018

Every year, 3,000 people receive the shattering news that they have mesothelioma, a cancer believed to be caused for some by asbestos exposure. Half of those diagnosed are not expected to survive another five years, according to survival rates. For those diagnosed with Stage IV cancer, the survival rate past five years is less than one percent.

Today is Mesothelioma Awareness Day—a good time to reflect on what’s being done to treat patients with this rare cancer. There haven’t been new FDA drug approvals for mesothelioma in almost fifteen years—and that is why it is crucial that the federal government rules and red tape blocking providers from learning about it be removed.

One of the most promising treatments for mesothelioma is Keytruda, which was originally approved to treat metastatic non-small cell lung cancer (NSCLC). It has shown promise for mesothelioma in clinical trials but is not yet approved to treat this disease. Because this treatment is FDA-approved, it is now being prescribed “off-label” to treat some mesothelioma patients.

About one in five prescriptions in the United States is off-label, meaning that the medicine has been approved for use by the U.S. Food and Drug Administration, but the doctor prescribes it for a different purpose, patient population, or dosage than the FDA approved.

While doctors can legally prescribe off-label, federal law generally prohibits pharmaceutical companies from sharing information about off-label uses with doctors and insurers. As a result, doctors and patients are often unaware of treatment options that are lawfully available to them and, even if they are aware, the information they receive may be limited.

That is why the Goldwater Institute is supporting state laws called Free Speech in Medicine to restore the right to freely exchange truthful information about legal treatments and provides healthcare providers and payers with the tools they need to make informed healthcare decisions for patients. Both Arizona and Tennessee have passed these laws so far.

Put simply, the government is censoring the communications of valuable information and could help improve and extend these patients’ lives. These laws make it legal for manufacturers to share truthful, scientific information about off-label uses with providers and insurers. It also sends a strong message to Washington lawmakers: Physicians should have better access to truthful, scientific information about promising treatments, and the federal government should not make it difficult or illegal for providers to learn about potential treatments for their patients.

We are living in the information age. Federal rules shouldn’t keep mesothelioma patients and their doctors in the dark about legal and potentially effective treatments, especially when so few options currently exist.

Naomi Lopez is the director of healthcare policy at the Goldwater Institute.